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Below are the guestbook entries from January-March 2004. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main Guestbook I would like to know if my headaches are clusters. I have had pain in the back of my head & down to my shoulders/spine. It has plaged me for 20 yrs. I am a female 47 yts. old. The only other health issue is that i have advanced carpal tunnel. About 20 yrs. ago a chrioprakter,sp.lol,told me i had "Poker neck/military neck & that was the cause of my sufering. I would like someone to e-mail me and help me with this information that I need. I would be so grateful for some relief & understanding. I really feel for everyones pain. Bless all of you.Vivian <Tylwyth-Teg@webtv.net> Greenup, Ky USA Wednesday, March 31, 2004 at 14:17:35 (EST)
I am not sure what Cluster head aches are but I am having stabbing pains on my left side right behind my eye and upwards. These come and go but they hurt really bad. I took Zyertec the other day, maybe from allergies/sinuses and that seemed to help but today I didn't take one and they are back. I have a neuro appt. on the 12th of April but do not know if I can last that long. They used to come and go but for this last week the pains have been everyday all day. I am timing them now and they are about 5 minutes apart and only last for about 30 seconds. You would think I am talking about labor pains!! I have been snapping at people that I would not normally do. Does anyone else have these pains? They are hard to describe.
these bastards are back after 2 yrs remission!
Can anyone tell me if cigarette smoking can be the culprit for chronic cluster headaches. I have been a Cluster Headache sufferer for 22 years, but of course have not tried to quit smoking. I have smoked for about 24 years. I have chronic clusters daily, usually in the evening and/or after I fall asleep. During the day when I am active I am usually headache free but once in awhile I will get a CH.
Hi. Just when I thought I was out of the woods for this year. I have been a clusterhead for 5 years now, they usually come between October and February. This morning I woke up with the loathsome familiar headache that left me thrashing, screaming, hitting my head, and blubbering like a baby. This time I went to the emergency room for treatment. I always get a week's treatment of Prednisone 10mg, sometimes two weeks. It always works for me. As soon as I start taking it, the headaches stop, I only have shadows. At least I'm lucky to be able to treat them. This time the ER doc also gave me Midrin, which is supposed to stop the headache immediately should I get another one. This is by far the worst pain I have ever had. I've had three kids, and the labor pains can't even compare. But I wonder, once you start getting them, do you get them periodically for life?? If anyone would like to keep in touch, my address is below. Here's hoping we all find a way to kill the %#@& devil for good!!!
Mandy Taylor
157 W. Williamson Rd.
Mt. Olive, NC 28365
Thank-you to DJ and his assoc.for this page.
Where's the research on these damn things.Went 2 yrs with very little trouble after being a cluster head for 18 yr.They started back 2 month's ago and are getting worse.
Had 6 attacks today.from 10 min. to the last one at 2hrs.And it's still at about a 5 now.have had a total of about 8 hrs sleep ALL WEEK .People at work don't understand like you guys do.We're in a unique club folks.The cluster monster loves to play between midnight and 4am.Then he goes to sleep while you go to work and flip out all day.You can feel him there with you all day just waiting to wake up.By friday your a total zombie.
Iheard about doctor in London,England that my neuro said was the worlds top researcher named Gottlieb,He has a theory about the gray matter in the brain being out of balance betweeN the two spheres of the cortex.We know theres a serotonin producton problem in the body and that's why imitex works.It's serotonin.
It be great if we could seek out doctors or whom ever who is doing research and ask them to share it with us.we could give them feedback and help speed along the process for all concerned.
Iknow most of you would be willing to help in any way to get this forum moving along.
Let's all work together and we can defeat this destoyer of a normal life we all deserve.
Please e-mail me with any comments and let's get started trying to beat the CLUSTER MONSTER.
Thank God You guys are here. I found this site in sept. 2000, my first bout, lasted 3 weeks, 1 attack between 1 and 2 in the morning, same thing happened next year, about 3 weeks again, 1 attack in early morning. Rest of the time I felt fine. This time it's different, I'm a wreck, went to dr. with info from this site , he called neuro, started me on meds, I'm going to a specialist in 2 weeks, but I'm a wreck. I've been keeping notes,this is 4th week, I was so confussed about what was going on during different times of the days. I called them "Cloudy" periods or allergy, sinus attacks. "Shadows", as you guys call them. I didn't know how to explain this. anyway, trying to live ODAT, not doing too well with it today. Dr. has me on steriods, dexa, first gave me 2x a day for 5 days, when I stopped I had 4 attacks, I told him I think I rebounded. He put me back on with tappering dose for 9 days, today is last and I'm worried about tommorow, I guess I'll refill but I don't know if I have to wait a day without them.Gave me Vemperial, 1 x 120 mgs at night, I don't think that's enough, and imitrex inhalers, they work, got 1 bad reaction, but it's worth it, I would take anything.
Thanks
I have been getting chronic cluster headaches for about 17 years, day and night. The only thing that helps in Fioricet and Imatrex. I just try to keep telling myself that to live one minute at a time. But sometimes each minute seems to feel like a long day! I ask God to let me suffer, if I have to, so my children don't have to.
I have been a chronic sufferer for 4 years now. Two years before I was epsiodic. I have tried every medication out there known to man. I started off on oxygen and steroids along with narcotics. Nothing seems to work. I have been on verapimil, lithium, deprokote, topomax,imitrex injections and nasal, amerge, anti-depressants anything you can think of with NO relief. I got to the point where I could not go to work anymore, I couldn't hang out with friends or even go to the grocery store. I have now been getting BOTOX injections. This has saved my life. I even have a life again. This really is worth trying. I will tell you that I pretty much have one complete month without even a feeling of a headache or shadow. Then after that month I will start getting the shadows again and then I will deal with that for a while then go and get it done again. My doctor is now doing the BOTOX and putting me on some meds to try and make it last longer. All I really want to say to all my fellow sufferers is that you should really try this treatment and urge your insurance company to approve this treatment. I got my insurance company to pay because I told them how much money they would save rather than me going to the ER every week. Again I thought that my life was ruined and now I see a light at the end of the tunnel.
Cluster headaches are NOT caused by neck strain
Bill Pierson, I tried to email you but your email isn't working for some reason - I visited an acupuncturist (trained in China) the first visit reduced the pain by 70-75%. That night I had a CH attack, same symptoms and in the same location (ie, behind eye, extending to ear and jaw), however the pain was bearable and manageable. I then had another 3 sessions with the acupuncturist and I am now pain free. He says my headaches were caused by a neck injury/strain that I had when I was a kid, well over 35 years ago. Do any Cluster Headers out there remember hurting their necks as children?
Anyway Bill Pierson and everyone else if you haven't tried an acupuncturist already, you might want to think about it.
Good luck
Andrew
I just recently found this site and I find myself wanting to talk about something I have never wanted to talk about before. Cluster headaches. I have been having clusters since I was 25, I just celebrated my 44th birthday with a round of cluster headaches. It has been over 2 years since my last one. I hope finding this site will help me in some way. It has already shown me that I am not alone in dealing with this. I have been to numerous doctors and have had many tests and have tried al kinds of different drugs and therapies. All to no avail. It is so hard for people to understand including most of the doctors I have been to. It's eerie to read from someone else describing the exact same things and thoughts as myself. I have a wonderful family, especially my wife, who helps nurse me through my episodes and supports me as much as she can, but I feel like it is a strain on my family.
I hope to be able to share with others my experiences and trials and tribulations. It is some comfort in knowing I am not alone and there is someone out there who truly understands what I am going through. Thanks for listening.
I've Suffered for 6 years now. At times I wish I was dead. The only thing that keeps me going is my wife. I know how I feel, but she must feel worst not being able to understand what I'm feeling.
Thank God there is a place for all of us.... I've suffered from cluster headaches for more than 5 years, even had 26 of my teeth cut out, my grandfather and father have clusters, and I have inheirted these. What works for me is 3 regular asprin, and warm wash rag on my face, if they are real bad, then I go to the o2 tank, I have had them for as short as 20 min to 2 hours long. I am also on verapamil 360mg, but have only went to hospital 2 times for demoral shots in 5 years. if you stay calm and walking around the house and deep breathing works for me. Also I don't eat chocolate, dairy products, and liquer. Watch the calicum percent in every day foods. It is on the back of every box, bag, or can. Hang in there.
It certainly is nice to know I am not alone. I am 47 and have suffered with CH since I was 12 years old. I was not diagnosed till I was 19 - no one seemed to believe the pain could be so severe until one day I almost drove off of a bridge with my mom in the car because I could not see through the pain. Diagnosis came shortly thereafter. Meds were not readily available back then so I just suffered thru the 8-10 weeks of pain every 18 months or so. I try to avoid all of the triggers during the cycle but between cycles I can do and eat anything and everything I want. During the cycle I don't drive (and you know how restrictive that is), sing in my church choir (the spotlights trigger an attack), go to the mall (too many scents), can't go to Home Depot (fertilizer smell), the list goes on and on - I feel like I am in a bubble. My husband and 3 daughters are wonderful during this time. My youngest daughter (15) has had a few attacks, not too major yet, but I remember how they started. My heart goes out to her. Well I found a wonderful doctor whose brother suffers from these headaches and he and I have tried various remedies, nothing with long-term effects tho. So, I just offer up the excruciating pain as a sacrifice, pray a lot and count the weeks till they are gone. Thanks for having this site. I found it during my last cycle in October of 2002 and it was like finding a friend. Next cycle is right around the corner. The twinges I feel lately tell me they are coming and I am none too happy about it. But - everyone has their cross to bear and I guess this is mine. Good luck to everyone out there.
Hello My name is Maria Marin.My head aches started a couple years ago.But it has gotten severe.Tormenting headaches.Pressure in my back and neck.Rushes of blood through.Sometime it leads ot seasures.It has gotten to the point that I trip off sometimes for like a few seconds.It is scary.I'm scared that I will loose my memory.Hve seen so many docstors they've said nothing is wrong.Taken so many tests.They can't find nothing.I have two kids and I am scared something will happened to me.Lost one job bacause of it.I'm really tired and wish I could find a solution.I've taken so many types pf medications.Nothing works.I need Help!!!!!!!!!!!!!!!
I was diagnosed with CH about 2 weeks ago and presrcibed with proproponolol to stop the Ch, and Imigrain to stop if I was having one. Anyway to cut a long story short, i really could not stand the agony so I visited an acupuncturist. I feel one hundred per cent better. He also put me on a course of Chinese herbal medicines. I have had 4 sessions of acupuncture and feel really well. The acupuncturist I saw trained in China for 9 years. It was the first time I ever visted an acupuncturist but felt I had to do something out of the square so to speak. Hope this helps.
Im glad I found this page,I cried when I read the testimonies,Its like reading my own stories, makes me sad to Know there are other people getting through this terrible, horrible,( I cant find more words to express this)pain, but at the same time, I known that in this world are some people who can really undertand me, my children and my husband understand and help me the way they can, and is just because of them that i dont feel absolutely alone, all other people around me gets tired and boring to be at my side and cannot deal wity my pain, depression, rage, sadness, etc...etc...
thank you all for been there for me.
God bless you all, and I really hope that HE will have one day sometime do hear and help us.....
(The devil) touchs me really deep, how sad to be so true....
I have had CH for the past 15 years, Every year for 6 - 8 weeks.
Imigran and o2 works for me,
But this current CH attack went on for 4 months, So Off to the Doc and he has found that VERY high does of Verapamil stop my CH (960mg per day in my case)
May not work for everyone but it does for me.
I am glad I found this site, and to know that there are
others. Going to the Doctor and describing the pain, I sometimes get a strange glare in return. Now I know that I am really ah, normal! Thank you..
My doctor recommended this website and I will be eternally grateful. Finally, there's a name for the family that lives behind my right eye. They build a fire, toast marshmallows and for fun, they poke my eye with a sharp stick. I'm so glad to know there's a place to get information for this malady. Like lots of you, I've been told this condition is found mostly in males - I don't think so anymore. Thanks for being here.
I have had migraines more or less on a weekly basis for about 30 years. Zomig seems to have worked best in stopping them. I've been prescribed Verapamil; I don't know if it really helps, though. About seven months ago, I went on the Atkins diet to lose a little weight, cutting out most carbohydrates and sugars. I did lose a little weight, but I have had only two migraines since. Both occured after I had eaten whole wheat products. I suspect that I have a sensitivity to wheat--maybe sugar. Investigate the idea of eliminating the specific food groups to see if you have food allergies that may trigger your headaches. I'm not really sure it's even my solution, but so far it is indicated;it's worth a try.
Just found this site, just got some verapamil, hope it works cause these things suck.
hello to all that understand. I started this nightmare 4yrs.ago giving birth to my 2nd child after pushing for more hours than I can remeber. my brain began to bleed and no one belived me for 7 days untill the ICU nurses was asking my family if i was a organ donner. then after a anigram they caused a strok looking for the bleed. and I woke up with a head ache that they kept saying would go away well its been 4 years some dr. say its a C H but have no clue. I have tryed every med. knowen to man kind and then some. the only thing that comes close to helping is ACTIQ try it!!!!! it helps. and when it stops working just buld your own guillotine. you will need it!! has any one found a dr. of any kind that understands or helps????
I've been a cluster sufferer foe 18 yrs and think i may have struck on something since i've been keeping a log of these headaches for many years now;because I learned that doctors in general do not have a clue how or want to help us.
I'd like to list things that help while you are having and attack and a way i get rid of them.
In my case I realized that they came on every year during the change of seasons;and were always after i had gotten a severe sinus infection.
Went to the doctor got some antibiotics and a few painkillers tillthe sinus infection clears up and wah lah the dam headaches went away.This has work two tomes in a row for me and may be a major source in kicking off a long cluster.Of course you have the every day triggers besides that.
My triggers:Any brown liquor or dark beers,anti-histimines,choclate,cheese all wines
To get some relieve while your having one and you have no medication ;Cold water in face
popcicle
two goodie powders with cold coke
Sit up always and do not lean against anything
keep your eyes open not closed and remain as calm as possible.
have patience and these things will make it go away in about 10 min.I know this seems like and eternity.But it beats getting hyper and making it last longer and end up in the emergency room.
Trying to sleep; Sit up as best you can with soft pillows and put a heating pad as hot as you can stand it behind your neck.
I truely can not imagine anyone who has pain any worse than there is with clusters.God help them if they do.
Ihope i have been a help to someone out there
I suffer from severe migraines as well as chronic cluster headaches. Took the consultant almost two years to decide 100% certaunty that i was a cluster sufferer. Take numerous preventive medicines, but mainly use imigran injections,morphine, and oxygen therapy which i find very helpful. It was good to find this web site for information, as i live on a small island with a population of 75,000 so help and info is hard to come by.
Hi,My name is Pat and I have been suffering with cluster headaches for over 15 years. They seem to come every two years. The current attack started January 12, 2004, it woke me out of my sleep. The journey begin, first one headache a day. After about four the headaches increase to two or three a day lasting from 45 mintues to two hours. The Doctor prescribed Imitrex injection which worked very well. The problem was my insurance did not want to pay for the medicine evey day as I needed. The Doctor changed the medication to Depakote 125mg twice a day. During the first week the headaches decreased. If I had a headache I still had the Imitrex if needed. Today, March 15, 2004 I'm headache free. Thanks Depakote.
Hi, I am a 22 year old male who suffers from cluster headaches. I am currently going through my second season of them, the first was about a year and a half ago. They started around fall and lasted about a month and a half. I would have anywhere from 2-4 cluster headaches per day. They are the most excruciating, painful thing I have ever been through. I have pulled my hair, banged my head, thrown things around and simply justed screamed in pain from the pain these demon headaches cause me. I wish that I understood why God chose me to endure this type of pain. It is so strong that it takes over your will and personality and almost drives to temporary madness or insanity. I wish there were things to help the pain besides imitrex or amerge and things like that, maybe a more natural healing method. I'm just glad to know that there are people out there like me that suffer also. If anyone out there has any advice or justs wants to chat about CH, feel free to instant message me or email me, because I know how you feel, I have felt the pain also. God bless anyone who should have to suffer the pain we CH sufferers have to endure.
I am 33 years old and have been experiencing CH for about 9 years. I received the diagnosis only within the last two years. The clusters started in January and are still going strong. I went to my family doctor in January to have a MRI taken because I thought I had a major problem. My head feels like it is going to explode. The MRI did not reveal any troubling items...thank God. However, the headaches still kept coming. I have been using oxygen for a couple of years with good success. But, it was loosing its effectiveness. I saw a Neurologist for the first time last week. What a blessing it was. She started me on a daily dose of Imitrex taken about an hour before the headaches usually occur. For me, just after dinner around 8:00 p.m. I had the first full night of sleep in two months last week! I am starting to feel like a normal person again. I pray that a cure will be found for all of us who suffer. It is comforting to know I am not alone...but sad to find out there are so many others who are experiencing the same thing. I will be back to the site often.
I am desperate to get help for Tension/Migrain Headaches. I am 36 Yrs. old and these crippling headaches have caused me to be very disalbed
I am the wife of of a wonderful man that in the last 7 weeks, has suffered so much. At first they were one a night. Now they have incressed to 3 times a day. When he wakes up,then around 6:30 pm, and the one we always know that comes around 1:00 am. We only have VA insurance. they have been as wonderful but there knowlege of cluster headaches is limited. We have gone 2 years with his headaches not reacurring. This last bought which has lasted 2 almost months is too much. I am writing right now because he just went thru one even taking his meds lasted over an hour, I hurt for him I know my strong ,loving mate. I can't keep putting up without some kind of meds or a blessing for them to stop without meds, that can help him,it kills me inside to see him cry and Len being afraid to go to sleep. We have lost work,lost our lust for life and most of all my love has lost his sence of humor. Len is a wonderful person. I had a dream last night that after having two children how I dreaded going thru labor 'Because it hurt so much' That is true pain, but it is over and you get a award a wonderul chid. Len goes tru terribe pain.With only the reward of knowing this one is over but the fear of when the next will start. I love him and will support him. We have found when the pressure starts that we walk and seems to help most of the time . I must say when he gets them at 1:00 Am or so I am not so great about going for walks with him. I feel quilty that I can'tI hear him sob and open the door but I don't go with him, I am also quilty of falling back to sleep just asking him how are you dear. Sincerly and I love you Len, Deb
Don't give up hope. I am 47, and have had CH since I was 19. I have been through every med, therapy, you can imagine.I have been woke from a sound sleep by what seems to be a glowing red hot icepick in my right eye. You know the feeling. Had a cycle that lasted 6 months one time. Believe me, there is nothing anyone can tell me about the pain of a CH. Found the Diamond Headache Clinic in Chicago. They found the right treatment for me, and slowly the headaches diminished. I'ts been 9 years since my last episode. THERE IS HOPE. Please call someone if you cannot stand it anymore. I am living proof that you can get at least some relief.
Hi I was wondering if anyone out there has bad headaches during intercourse and if there is a treatment for this
17 years with these damn things and I finally was diagnosed this morning. I only get them every 3-4 years but these last were the worst. Cycle lasts about 4-6 weeks.Almost wept when I came across this site today. I'm not alone! People cannot comprehend the level of pain, so I just stopped talking about it. All of February was a loss for me. Couldn't be Daddy, Husband, and missed tons of work. Hat's off to the neurologist I saw this morning who is preparing me for the next bout in 3-4 years.
i find inhaling steam relieves the dreaded pain, it really works try it.
I am a spouse of a sufferer (last 6/7 yrs) have never, i mean never seen anything like this-drs here don/t have a clue-this has really ruined my husband "retirement" how unfair. my utmost sympathy to sufferers.
Last Monday, March 1st I thought I was going to die. I called my Dr.'s office in a panic; numbness in my left arm and a pain in my head I could not describe. I had to go the whole day without anything, I felt like my head was in a vice and someone was tightening it. By the time I got too the Dr.'s I was in tears and didn't know how to describe my pain. All I know is that I have given birth 3 times and this pain didn't come close. They gave me a shot of Torvazol (which did nothing) and a prescription of Naproxen 500mg and Percocet 5-325mg, which by the way won't work on an existing headache. The percocet works if I catch the headache before it gets out of control. However, the one I had last Monday was so out of control by that evening @ 9:00pm I dove myself to ER with chest pains. When they hooked me up to EKG my blood pressure was way out of wack very, very high. Once they started the Oxygen I started to feel some relief. Now a whole week has gone by and I am out of Percocet and don't have any oxygen; I have called in a re-fill on the percocet but I know how the doctors feel about the controlled substances being addictive. Now what do I do? Now I know I suffer from Cluster headaches how can I get the help I need? Do I need too se a specialist? Where do I go from here?
Cluster oxygen inexpensively
This article submitted by Jim Chiodo on 12/15/96.
Author's Email: q45@i2k.com
I use Oxygen for my clusters. Not only can it be a hassle for some insurance companies, but the health services that supply it, have a license to steal. Long ago, I found a better way. I am a handyman and have tanks of oxygen and acetelyne. Don't let anyone tell you that medical oxygen is any different that welding oxygen. It needs to be just as purce to weld as it does to breathe.
If you were to buy, (actually most welding supplies require a life time lease on a tank, which cost about $200. This is not for a wimpy little tank, but a decent size 4 foot tall one that can give weeks of pain relief, even if used repeated every night.
Next you need a regulator. You could also use one from a welding supply. Cost about $150 for the comlete torch set. Maybe they might just sell you the oxygen regulator, don't know. I have one, which is chrome and came from a hospital. Found it at a flea market years ago. My regulator and one you would buy from welding supply is not a flow meter. It was necessary to adapt a little fitting for the plastic face mask line.
If you have ever been to a emergency room and they gave you oxygen, ask to take the mask, they are only going to throw it away. I have about a dozen from over the years. Now, what is the correct flow rate? In the hospital I have had them crank it up to 6-7 liters per minute. With an open mask (one without a plastic bag) that is pretty fast. My usual drill at the emergency room (that's when it gets really, bad by the way) is for them to stick me with demerol an leave me sucking oxygen. At some point I will have the nurse, or do it myself, turn down the flow and then the demeral will wash me into oblivian. somewhere i will take off the mask and drop into la la land.
The point is, with a regulator, you can judge your own flow. Welding regulators are to adjust pressure, but since the mask is open, it really just affects the flow. With the tank connected, you open the main valve and slowly turn the adjuster clock wise untill it starts to hiss. After that, adjust to suit.
Once you own your own tank, you don't get it filled. Rather, you just swap it for a full tank. It is not a good idea to drive around with these tanks in you trunk, so the welding supply probably will even come to you house and swap it for you. Depends on your street and the type of truck they have. They charge maybe $4-5 bucks more than the $20 for full new tank of oxygen. It is then up to you to wrestle it into your bedroom, unless you sleep in your garage. You also need to have a little mechanical skills and a wrench. Oh and don't drop the big or any cylinder and break off the valve. There a couple thousand pounds of compressed pressue in there, which could send the tank off like a rocket.
Despite the handyman part of it and the cautions, compare this to a medical service. Way back when I had a prescription filled, they gave me a dinky little tank (A "E-cylinder by the way) I paid a $90 deposit, that for some reason was not refundable and not covered by my insurance, because it was a deposit. There was also the monthly rental of $25 for the flow meter, (this was at least 10 years ago). I could suck this dinky E-tank dry in one or two nights. Then I would call for a refill, which resulted in two white coated guys coming out, unhooking the valve, replacing the tank and sending a bill to the insurance for $50. Half for the oxygen, half for the "service".
If you have clusters and have been prescribed oxygen, talk to your benefit administer. Explain the cost and suggest the alternative. If you get relief from it you don't want a little dinky tank running out in the middle of an attack. It is like someone cutting the life line when you are drowning. Your insuance, especially if you company is self insured, may see the saving potential. No they probably won't buy the acetelyne, just the oxygen, but when you are not in season and want to weld, you can bear the other part of the cost, which is about the same as for the oxygen.
Yes, even back then, my insurance did pay for most of this, but my co-pay was still high. Now, I don't even submit it. The $20 every three or maybe more if they are infrequent is nothing compared to what my co pay would be if I didn't have my tank and used a service. By the way, I even held on the the little cylinder and traded at the welding supply for a small conventional one which will fit my regulator, and I take it with me on short car trips when I am in my cluster period. I don't think I could take it on an airplane, shade of the value jet thing.
I am 42 years old,male.I have suffered for 22 years,tried it all,10 years ago, I had my shoulders,and hips replaced as a result of using prednison.02 worked for a while,all the meds worked for a while,then stop.I was in remission for 4 years.they came back feb 13 friday the 13th.I use imitrex shots,and the pills,I use vicodin for the time that it is not here,2-3 a day.Just found this sight,im desprate,have 2 kids, a wife nice home and job,I set here scared to death that one will come on.looking forward to talk to people who have these, as my wife dont know what to say or do,my kids are 13and 10 they dont know what is happening.They are so bad latley that I have even thought of taking my life,but that really scares me.
Hi I too suffer from cluster headaches, and have done so for 20 years. I find oxygen helps with the pain, but becomes a bit costly, has anyone else had any success with oxygen? I also use Imagrim nasal spray with little success.
Some people may not care what I got to say but just to get my point across alot of gangs memebers want to hate on their own blood cuz the set or gangs their in aren't the same but I just got to say life is life deal with it. You should only have something against the other if they disrespect you. You know what I am sayin>
Hi, I've had the cluster headaches for years and didn't know what was wrong with me. Finally, the right Dr. and am on my way to understanding my problem. I've been headache free for several months now, but they have started all over again, whoooho. It's nice to be able to read about the problem and know that it is real and not my imagination like some people thought.
Well this is interesting. I am a migraine sufferer like my mom Susan Caldarera who used to frequent this site. I haven't asked her if she still does, but I just wanted to say that this is the best site I have found yet. The safety really is in numbers. I am like most migraine sufferers I know, When one comes on it is debilitating and sometimes unbearable. I don't know if I am a hundred percent migraine because sometimes the pain does make it to where i would rather knock myself out rather than just deal with it. I don't know if a migraine can wake you from a deep sleep, but they do me. I guess I am just trying to profile what's going on in my head to better deal with it. I am currently taking imitrex, and it is not working as well as they promised. i have also tried zomig, and midrin. I am in the military and am having a hard time finding meds that are non-narcotic and that the military can supply. I f any one else out there is in my shoes (boots) let me know. Also I did notice that air pressure changes trigger alot of my migranes. Thank you
Every couple of years I go through two weeks of hell. After reading some of the stories here, I feel I am lucky.
I'm looking for homeopathic treatments for the cluster headaches I encounter. Does anyone know of any non evasive treatments?
6 years of suffering. Have become chronic. Do not drink or smoke. Have 3 young children and I am a school teacher. I have been a guniea pig to all meds without any relief. Only O2 gives relief. Ready to try alternatives. Nobody, except this website understands the pain and suffering we experience. Ready to experience hallucinogens. Even though I am a teacher and past military I am willing to try anything. Somebody please help! Thank-you
Hello All I to Have Had CH For 5 years now started back in late 1999 lasted for 10 weeks tried everything the only thing that worked and I have not heard this suggestion yet is Vicodin along with Fioricet 2 & 2 worked wonders broke the cycle and every time I feel one a comming i take some medicine and bam gone for long have not had one in 2 years that I could not handle and only had to refill my scripts couse the pills expierd hope my info helps
Its been about 2 yrs. since I've been here. Havent had anything in 2 years....thought I was done. Im 41yo male..have had thes since my early teens. Used to be in early summer..but now well since they've revisited..are always at the end of Feb.(my birthday)..until late March. Started on Imitrex..100mg...works so far...and
prednisone....dont think it's working. Just started the water today..hope it works. Dont know waht else to do..but wait until it goes away for who knows how long again. Thanks guys,,be strong..we can do this!!!
I have been suffrening(CH) since I left the USMC back in 1996, At first I didn't know what it was and would drink the problem away but it has effected all of mylife now, Does anyone els suffer from on and off again Fatigue and low sex drive, My girlfriend is getting very angry and thinks that it all in my head, can somebody let me know that I'm not alone!!! Is this also part of the classic sypmthons, I'm only 28yrs old and in good health
I am 39 years old, been a CH since 1980.
I too have been suffering from CH since 1986. I am 33 years old now and have them every other year. At least I know when to expect them. I am pregnant this year and started with them January 31. Once my OB gave me the ok to take Verapamil I started and the cycle has finally been broken. Unfortunately I cannot take my Imitrex (due to my pregnancy) so I have been relying on oxygen for the pain. I also know that the preservative MSG (monosodium glutamate) can trigger these headaches and to stay off it completely. My doctor claims that the buildup of MSG in my system may be what brings them back every other year. Too much orange juice ( citric acid) is also a trigger. Good luck to all!
Hi I am a 32 year old who suffers from CH. 5 years now. I was in a bad car accident in 1999. I was flat line twice. ever since I've had these head pains that just kill. I use to black out when ever I got them. I've been to my doc. I've been to a neurologist, and a neurosurgan, I've had repeated mri's and catscans.. Noone has a clue as to what the problem is.. I had surgery on my scineses to alow more oxogin in they said it was to low that was why i was blacking out. thay have me on neurontin 300mg 3x/day.. It's not really helping. I hope to find someing soon.....
has anyone tried acupuncture for any relief?
I am so relieved to have found this sight! I've spent the last 2 weeks being woken up in the middle of the night with my headaches, and taking Imitrex, but it's starting to become less effective the more I take it. I'm going to the Dr. on Monday, and am so happy I can go in with some information and ideas from this site!
Just what to say that I tried some very rich chocolate yesterday - 2 occasions - and got no headache. That is a sign that I am going into my headache free period :-)
I am 57 years old and have suffered from cluster headaches since about age 20. Over the past 5 years I've use oxygen with tremendous results - the headaches just go away.
So I will now forget about my night visitors for the next 10 to 12 months. Hope you all can also start you headache free periods soon too.
just wanted to say that i have got a lot of usefull info from this site to prove to all the nonbelievers that the beast is real . i have been useing the site for the last 3 years, and have found it very helpfull. i am a vetrian suffer of 30 years, thats chronic suffer 6 to 8 aday ,so i am very familure with the beast,not a day has gone by that we have not danced.[i hate dancing with this partner]. thanks for being here it helps. nice to know someone understands.
I was a late bloomer to this malady (thank God!). I presently take Verapamil, I think with success, but time will tell. What I have found imperative is to get something, even one aspirin, in, upon onset of the headache. That can kill it quickly, but only if taken immediately. Once the ache has grab'd ahold, nothing helps. I would like to hear from others who try this.
My father has had CH for as long as I can remember, ever since I was a little girl, I would find him blacked out on the floor bleeding from his head, after hitting something on the way down. Once blacked out in the store and an ambulance was called. His headachs have taken a turn for the worse, He has double vision, he seems to be in a drunk state (he does not drink!) I dont know if it is because of a new medication that he is trying to get or if it is a neurological change as he says? I don't understand what is going on. He says the doctors will not do anything for him, and he takes more medications than I can count on both hands in one day. Any suggestions??? please e-mail me, I wish I could help him in any way. Thank you and good luck to everyone!!
In my previous message I should have added this: when you send me your thoughts, musings, hunches, experiences, whatever, about cluster--I would be happy at the same time to receive your permission to use the material in my article, if and when it is written. If you do not wish to grant me such permission that, of course, is fine too.
Meantime, all good wishes and hopes for fellow sufferers--
B.
Hello, and thank you, D.J. and others, for this fine site. I am a 73-year-old woman who has suffered from clusters for 40 years, although happily, I have been in remission for the past four years.
Among other things, I am a writer. Currently I am researching an article I want to do on cluster, since I feel both the general and the medical public have too little cognizance of this severe affliction which has come close to ruining the lives of so many.
Dr. Peter Goadsby, prof. of neurology at University College, London, has made interesting discoveries about the role of the hypothalamus in cluster. You may want to read an interview of him describing this. Go to htt/p://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s42434.htm. Interestingly, the hypothalamus is associated with the circadian rhythms of the body.
I was never given any effective help during all my years of twice-yearly attacks--as my 7-week cycle would drag on, I had more than one suicidal thought, as I am sure is true of many if not most of you. Once I literally begged my doctor of many years to leave a standing order at the emergency room for me to receive a shot of Demerol if I should appear with a cluster. I told him I wanted it for a kind of "insurance" -- something to make me feel that suicide was not the only option when I was occasionally reduced to crawling on all fours. I told him I would go to the emergency room in only the most desperate of circumstances, and that ordinarily I would tough out an attack. His response was that such a thing would destroy his reputation, and the answer was a firm no. He admitted he had never heard of cluster and I could tell he was not terribly interested in mere "headaches." It was a soul-crushing experience.
So I have persisted in living somehow, and now that I am old I want to write about our most mysterious, most hideously painful and most soul-damaging affliction.
I invite you to contact me through e-mail with any ideas you may have, no matter how far-fetched, on the etiology (cause) of this terrible syndrome. I would also like to hear about any unusual experiences or clues you want to share. Have you kept a journal? It can help.
In a way, of course, "clusterheads" are the true experts, and I hope to hear from some of you experts. I offer no guarantee of any kind where, if anywhere, my work might lead. All I know is that I should do it.
In hope,
B.
i have always wondered why my headaches always appeared to be more intesive than usual i mean i take so much analgelsics to relieve the pains yet they never appear to work my doctor of 15 yrs just keeps saying it is stress yet i dont have much bothering me thanks for actually telling me to go find another opinion i love your site
hi folks i ever thought of so many people had these chusteraches but reading all of everyone letters helps a bit this is my 2nd time having them my 1st time was in nov 1999 witch i had them for about 4 to 6 weeks almost every night waking up with a cluster around and behind my eye i was on peds but not sure what they were but im taking nova- lorazem 1 mg when i get a cluster.
now this time with getting clusters for just over a week now every night same time for about 2 hours long ive tried a migrain advil pil but did not help at all witch i was just tring to see if it would help but advil extra strenght headache pill does help me with a cold towel over my eye loud noises or bright lights soes not hurt me ever play with my kids is ok but just the hard hitting pain make you want to cry in pain but what will that do please fell free to write me with anything that might help and remember no 1 knows how much the pain it see till someone goes though it cause my pain from 1 to 10 10 like wanting to just dye mine pain when it hit the hardest is about 8 1/2 to a 9
I am happy beyond belief to have found others who know this pain....I am not alone, anymore....but also I an sorry to know that YOU, too, are out there...together,we have a chance...alone we are defeated. WE SHALL OVERCOME!!!!
Hi, Just want to say I found a couple of things that have worked for me. Switched from regular milk in store to organic...Most of my migrains went away, still have some, but, my neurologist says lack of sleep or disturbed sleep major trigger for migrains. He is top in U.S in his field.
Also, I have tried every drug, and remedy in the world, and I had " please shoot me in the head, I would rather die" migrains!!
I'm the mom of 16 year old son. He has had clusters since age 12. I'm beyond desperate, don't know what else to do. He has been through hypnotherapy, accupuncture,chiropractors, uses oxygen, maxalt, imitrex injections, frova, lamictal has been on verapamil, topomax, depakote and botox injections(relief for only 5 days) present neurologist is great but we are not getting any relief. he doesn't bother to keep headache charts since he gets them daily. we're lucky if he has 1 headache free day. misses a lot of school and social activities. any help would be incredible. don't know what else to do or where to turn.
I am 51 and have had clusters since I was 25. I now get them every 3 years for a month at a time. I am currently 10 days into an episode and things are getting out of control--headaches in the day and in the night. I am trying to minimize side effects of all meds. I was on an early dose of predninose that was 6omg, 50mg, 40mg....worked until tapered to 20mg. Am trying maintenance dose but it's not working. Am afraid of the prednisone. Anyone stay on it for 3-4 weeks? What dose per day or per every other day? Website mentions taking it every other day. Also I can't sleep--I think from the prednisone, but I wasn't sleeping before headache onset either.
My heart goes out to the chronic sufferers.
I have had cluster headaches since 1985. I have tried all kinds of stuff. Currently I am using Imitrex 50mg. tabs but I get 6-9 clusters per day. Mine last usually for several months. I hate needles also. I need help to terminate these episodes. My doctor is good but not very experienced with clusters. I am a firefighter and clusters make it very difficult to perform my duties if at all during my episodes.
I think I am a periodic sufferer, I get the Demon every year for six weeks minimum, and atleast three to five per nite. The other nite I got seven in seven hours, I am very frustrated and exhausted and in desperate need of someone who understands what I am going through. I am hoping that I can talk to someone who knows what I am going through!
Hi folks. Just what you needed, another member. Actually, I was just recently diagnosed with CH, so any info pertaining to comfort simply isn't available as of yet. The beginnings for me were short but exhausting. However, as time goes on, the episodes are becoming more severe and longer in duration. Hard to explain to my wife the pain I am really going through. I might add, that she's been great. I found out that the doctor I'm seeing, that I'm his first CH patient. My hope is that I don't turn into a guinea pig as we search for any type of relief. Thanks to all for being there, and understanding my(our) situation. I can only hope that help is on its way. Temporarily out of pain, Half-fast Eddie
There is hope!!! My daughter suffered from migrain and cluster headaches and we were in a crisis situation...when we fortunately discovered the Diamond Headache Clinic in Chicago, she spent afew days there..She has been headache free for a year!!!!
Thank god that I found this site!!! For a while there I thought either I was going crazy or there was something seriously wrong with my brain. Finding out that other people suffer from this brings me a little comfort( not that I'm glad that other people get these because they suck!) I just started getting them again after about a 2 year lull and man I didn't miss them at all! I'm on a pill called Propranolol now and will let you know how it is. C-YA
Well...it's cluster time again.I am right now at what I call the 'peaking' period.these 4 weeks is when the headaches are at the worst time.My neurologist put me on a new medication(i think it's new),called Relpax.I think it is working.I had a 7 hour full blown headache...which then lingered on for about another 12 hours.Next haedache was the next day and is when I took the Relpax...I took one pill at the onset of the headache...then waited (as instructed) another 1 1/2 to 2 hours to take the second dose..it stopped about 10 minutes after the second dose.Horrible nausea after that.I got my oxygen yesterday..huge feeling of relief(less anxiety)..I hate this time period of my life....patience helps...I saw testemonials of lavender oil...I'll try it...anything to help(i hope it does)...well,thats it...any other info would be helpful..My name is Joe(peel)and e-mail is dinovinyl@aol.com...i hope the relpax helps in the future..for me and everyone else.If you don't get these headaches noone understands...and say such bullshit(e.g.:"I think they are psychological")THAT comment pisses me off...I am sure many of you have haerd that before....Hang in there everybody.J.Peel.
I have been a CH suffer for 38 year with the longest lapse of time in between headaches was 7 years. I have noticed that a lot of pressure in my life can bring on headaches and have delt with a lot of the drugs I have seen listed in this site. The pain that most of these people talk about is what I have on an every hour on the hour after going to sleep each nite. Yes the oxygen has helped me and the best results I have had was with the Zomig tablets. If the pain is not real severe I cut the 5 mg. tabs in half it has worked so far in this seige that I have had for 2 months and just now getting relief at $24.00 per pill I won't last long on this earth as I would love to die also because of the pain. The fact that the doctors can only guess makes you a guinna pig so you have to take notes on each medication and annalize it results and it will only take a couple of days before you know. Exercise, diet, emotions, all become a factor in how long it takes to get out of a cycle. I could go on forever all the things I have tryed and what worked and what did'nt feel free to e-mail me for info if needed.
Finally have a PC back in the house, boy have I missed the support from fellow suffers this past year
Hello,
This and the OUCH sites have been a God send for my husband and me. My husband has been suffering from CH since May 2003. The only thing that works for him right now is Anacin - he takes between 6 and 8 per day (which is really great long-term for his stomach)! He went through all of the tests - CT, MRI, MRA - and is going for a sleep study in March. His Neuro put him on Imitrex, Maltrax, Indomethacine, Elivel, and Firocet. Nothing works - accept the Anacin! I hate to see him in such pain. Reading all of your stories and doing the research on CH brings me to tears. I can't imagine what you are all experiencing. I feel so helpless - I try to relax him when an attack is coming on (he has about 4 per day) by gently rubbing his head or hand, but nonetheless, the attack happens - and it's usually severe. We're going to see a headache specialist on March 1st (he's the one who's recommending the sleep study), and we're going to talk with him about O2, water therapy and Prednisone. I absolutely hate all of the drugs that the docs make him take - he can't properly function durng the day, and is totally exhausted at night. He's said things like I don't care if I'm dead on my feet during the day as long as the headache isn't there. However, he's not real crazy about hauling an oxygen tank around with him. This is no way to live! Although I (we) have hope, it's hard to face the fact that there is no cure, and more than likely no sure fire remedy for total, long-term relief. I'm thankful for this site, because we won't have to wait 6 or 10 years for a diagnosis and pain management plan. Thanks to all of you who have shared your war stories. It helps to know that we are not alone!
Hi, I am an 11 year sufferer with 3 children ages 23, 21 and 20. My husband is wonderful and very supportive as he has seen me in the throes of the beast many times over tne years of our marriage. If that doesn't kill us nothing will!
I am a CH sufferer of 8 years.mine are cronic 5-7 every day. i have been to doc after doc.ihave used every med that is out there.about 3 years ago i started seeing a doc in memphis tn.his name is dr.stephen landy and he has been alife saver for me.i think sometimes he is the only one who gave a damn and understood what i was going through.he has prescribed all the usual(verap,indo,etc.)i use the imitrex nasal spray for the attacks.about 2 weeks ago he gave me relpax 40mil.1 tab 2 times a day.that was the first relief i have had in 8yrs.i am still getting 1 at night but a quick shot of Oxy and it is gone.hope this will help some one else.hang in there and take it day by day.you are not alone.
I was in this site a few years ago and saw a picture someone drew to help explain their cluster headaches.
It was very vivid and detailed. can anyone help me find that picture again? im desperate
hi im 43 years old and in june of 2003 i was hit with a headheache like ive never heard of. i didnt have headheaches or take any meds of any kind, but this was the worst pain ive ever had in my life. after several doctors and all kinds of meds i still have very bad days and its feb 2004. boy you try to tell someone how it feels and they look at you like your crazy,when the pain will drive you that way. a wonderful doctor in nashville tn by the name of dr hoos finally told me what i had. the meds he put me on give my a few good days but i still have a lot of bad days, and when i say bad i mean you feel like you dont care if you wake up the next day or not. if i can help anyone with this disorder i would be proud to. thanks corky
Hello, I was just told by my doctor that I suffer from Cluster Headaches. I have had this very, and I mean very, bad headache for almost two weeks now. I was begining to wonder if I was losing my mind, as my husband and doctor just couldn't understand how bad I was hurting. I'm so glad that I cam on this web site as now I know more and understand what Cluster Headaches are now. Now I really don't fell that I'm losing my mind. Thank you for taking the time to read this and for running this site.
Kind regards,
Heidi Jones - United Kingdom
My neurologist diagnosed with me cluster headaches.
I'm not sure if it really is.
My left eye lid hurts first then around my left head is pain then my left nose runs. This lasts for 2 hours, but I've been taking Relpax that lasts for 10 hours then the pain starts again.
Cluster Headaches are not suppose to happen this common right? Well, I've been getting them daily.
The Relpax prescribed was intended to last for months, but I've been going through them two a day and had a total of 10 or so. I don't know what the long term effects from taking them, but I don't know what I can do and how these headaches just recently occured out of the blue.
I'm only 20 years old, a male.
It's been 4 weeks now, I think.
Do you guys think its a cluster headache or something else?
Please send me your responses and tips...
I'm trying to get through a semester and the medication is a pain to get...and the pain is outrageous...I need to know more about what I'm going through whether or not it's a cluster headache. I got all four of my wisdom teeth out, and the pain still continues.
Thanks, please snd me an email.
STOP THIS #@$!*#@ PAIN!!! any advise on how to stop these ch would be muchly appreciated. has oxyegen therepy helped any one?? ive just been diagnosed after 6 years with cluster headaches, after being treated for migrain. i get at least 2 a day at most 7, and like all of you they r driving me insain. ive had them for the past 8 weeks! my dr has just pescibed imigran nasel spray and isoptin. has anyone got any info on it or have tried it yourself please let me know. thankyou for this site i thought i had a brain tumour or i was going mad, at least now i know im not alone! good luck everyone and dont forget if u have ANYTHING that helps please let me know!!!!
I was so thrilled when I discovered this web site today. I have never known a single person who has even heard of a CH much less understands their excruciating pain (including doctors). I also realize by reading all of the posts that I am luckier than most. I got my first CH when I was 39. Went to a neurolgist as I was sure I had some kind of deadly brain tumor. He diagnosed CH and prescribed verapamil. After several weeks they finally disappeared. I forgot about them until 7 years later I got them again. Went to my regular doctor and just asked for verapamil and again I had success with it. Now here I am again, age 53 and they are worse then ever. This time I went to a different doctor who has barely any knowledge of CH. I told him about verapamil & he wrote me a prescription. Now here is where I need some HELP!. He didn't know what dosage to prescribe (scary isn't it?) & I can't remember what I took. I know I started with 1 per day & built up to 6 but I can't remember the milligrams of the dosage. He also prescribed the time released verapamil which I didn't use before & wonder if this makes a difference. Any feedback will be appreciated. I would like to add my heart goes out to all of you, particularly chronic sufferers. I can barely live with 3 episodes in a 14 year period. God bless you all.
I am also a ch and mh suffer I have 4 children have been on some many different drugs and nothing works. No one understands and the pain only gets worse as I get older. Ifeel like a bad mom because I am always in bed with ice packs and sleeping ,my 5yr old just looks at me in such saddness and I'm only glad my twins are only 2 they do not understand yet. so if there is someone out there with HELP please e-mail me so I can have my life back and enjoy my children. sad in maryland.
I've had CH for the lat 18 years. It usually pays me a visit once every 18 months. I've tried medication prescribed by doctors in the US, Germany and France. I've had enough drugs in me to knock out an elephant, to no avail. But it's different now. Members of my tribe, I am happy to share with you that I found not a solution for it around 5 years ago - ACUPUNCTURE! 5 years ago, I stumbled into an Acupuncturist's office in Gardena, California (310-324-2791) under full attack. The guy, Dr. Byun, laid me down, took a 3.5 inch needle, and stuck it just above my left temple (always the left side), pointed towards the back of my head, then slowly rotated it while pushing it in (and freaked out my then girlfriend). He didn't push it into my head, but along my head. When he took his hand away, I saw only about 1.5 inches sticking out, which meant 2 inches were wrapped around my skull above my left temple. The pain left almost immediately. I paused for a second to see if I was imaging things, but I wasn't. The joy and the relief I felt was incredible. Dr. Byun kept the needle in me for about 40 minutes, then rotated it out. There was no pain associated with the needle stick. I moved around a bit since then and went to see 2 other acupuncturists in the cities where I was when subsequent attacks hit. The pain didn't leave as quickly as with Dr. Byun, and they used a lot more needles all over my body, and but the pain still left. Caution! I have had the good fortune of not coming across any quacks, but I know they are out there. Do your research to find a good acupuncturist in your area. But it's worth the research. As far as I know, it's one of only 2 thing that kills CH pain. What's the other? I see a lot of you guys referring to CH as the devil or the demon. If so, why not check out the guy who makes demons leave? Read about him in any of the first 4 books in the bible's New Testament.
I found this web site by searching out migraines and strokes. I have never had a stroke but surley this is how it feels. I always thought that if I could just slice open a small section at the base uf my scull the pain would drain away. I have had what I thought migraines for years I mean years. But they arent the same as other people I talk to. Mine are only on the left starts at the base of my skull goes up through my ear causing sharp pains in the ear then through the temple right behind my left eye. Every time. This never changes this is the headache I get. I have just gone through 4 days of this. I take initrix every time and it goes away fortunatly until I wake up the next morning. If I didnt have the immitrix there would be no way I could stand it the pain is way to bad. you would surley see me in the emergency room I have had to do it before they are totaly unbearable without the medication I too bang my head squeez my temples and head hard as I can praying for relief. I just know better any more I get up and go get help. From what I have read I think I have cluster headaches and will talk to my Dr tomorrow and I will see what he says. I am glad I found your web site thanks for listening
sandy
I have been having these cluster headaches now for about 5 weeks straight yes 7 days a week non stop but only at night sometimes a little one during the day but not like the one that comes at NIGHT. Just this morning I just couldn't take it no more from last night it's 3:15am and I'm just getting over one that lasted about 2 hours straight. So when I got up I looked in this book about headaches,why am I getting these headaches like this, couldn't go to the doctors no insurance don't need no BIG bill (LOL) so that's when it said Cluster headaches comes at night, then I went online and looked up Cluster heahaches and thats when I found this sight, I am really interested because everything someone talked about I can relate to them All I want to know is what causes it and what gets rid of it. This pain is no JOKE it's real. My husband is really supportive but he don't like to see me in pain like this. I feel a little better because now I know what it is Cluster headaches it is 12:25am I am scared to go to sleep it's going to come soon. What will stop it. I had headaches before but not like this, this is not a headache. I am 28 and just started this crap 5 weeks ha I read it last about 6-8 weeks before it stops I'm almost there I can't wait until it's over. Hearing others go threw this is o.k because I really thought something bad bad was going on like a medical condition or something like my head had to get cut open. It do feel like that!!!!!!!
Hello everyone. This is a first for me but I felt I had to add my two cents. In 1997 I had headaches all day long. I belonged to one of those walk in clinics and the doc there told me if Advil helped my headache I should keep taking it. I went back to her for two months saying how bad these headaches were getting. She recommended a sports therapy program. The headache became so bad at work one day I called my daughter and asked to go to the hospital. Boy, if mom was going to the hospital it must be bad . Well after a fight in the emergency room on what constitutes an emergency they agreed to do a cat-scan on my head. I remember nothing after that except waking up with tubes coming out of both sides of my head. I had a hematoma and was six hours away from going to animal heaven. Please be sure before you treat your headaches on your own. Insist on a cat-scan and be sure it is just a headache....Now,since this operation I have joined the many others with cluster headaches. I keep asking for my old head back because I never had these before. I am so afraid that it is another hematoma that they should put my name onthe cat-scan machine because I feel married to it. They cant hand me any bull at the hospital because I insist on the scan before I go home and die in my sleep. I have found that these cluster headaches are the worst thing I have experienced in my life. I think they are gone for a few months and then they come back at 3a.m. I noticed in advice section of this club concerning anyone trying to sell drugs and I kind of chuckel at the thought. I can see how desperate anyone cam be to try anything if nothing else is working. I am 64 years old and have never taken anything but prescribed medication. If,during the most painful peak of these headaches they told me to put my head in the toilet and flush for some relief I might try it. My only joy right now is knowing this club can give us something to feel united about. All of you make me feel so connected when nobody else knows what we go through. Hoping we all find a way to stop the pain and go on with our lives, I am sweetadeline39@hotmail.com
I am now 61 years of age and suffered with Migrain for the past 45 years and CH since 1998. My current attack has been ongoing since August of 2003. I guess all the words to decribe the pain and discomfort have been used so sympathy to all.
My doc has me on Verapamil and that is helping but you know it's not a cure and the next attack is just around the corner, so my supply of Imagrin injections are always at hand as a last resort.
Thanks for the supportive website
I first met the moster in 1990 at age 15. Just found you site today. I looked at the treatment list to fill out whitch types of meds I have tied, but it is tuff to say witch ones worked. Nothing worked and nobody new what I was talking about untill 2001 when a med student in seattle reconized the symptoms and refered me to go straight to nerologist when they came back. I did in Olympia Dr. Leo Kestings MD. He gave me Cafregot,Varapamil, and Prosedidone(spelling?) all at the same time IT WORKED!!!! We have managed to keep them at bay since. The only bad part is trying to get in to see him at the start of the cycle. I have read some about medical marajuina, but the only real info I can find is old. I there any new headway in the subject. Does it work.
Fellow Sufferer, Kevin Adams
i could use some help if anyone can. in september of 2003 i hit a small deer with my truck. i never went to the hospital because i didn't think i had a reason to. my chest was sore and that was it. everyone said it was muscles and things would heal so i listened. slowly after the end of september my shoulder hurt so bad i couldn't move it and i eventually lost use of my right hand. for the last 2 months i have been getting headaches that will cause me to black out. there is no warning of them but i can be out anywhere from 5 minutes to a couple of hours. i have one spot on the right side of my neck (where your shoulder and neck meet) that i can press on and trigger a headache. bright lights, loud noises, quick movements or extreme cold or heat also cause them. both mri's and the brain scan came out as ok. i have mild bulging in two discs in my neck but nothing that the neurosurgeon said to worry about.
tonight i came across what is called basilary migraines and it says those can be caused by the things i said and can originate from whiplash injuries. does anyone suffer from them or know how to treat them? i have been afraid to drive since mid-december because of these blackouts. i drive 1 1/2 hours each way to work but have been out since december 18th. the family doctor suggested going back to work. i am a service writer at a motorcycle and atv dealership so i am exposed to bright light and loud noise all day. i am also so afraid of having a black out while driving because like i said i have no warning of them.
i read about basilary migraines and it sounds like i may have them. i am 22, female and never had any head, neck or shoulder injuries before this. can someone please help? the pain is getting unbearable. i don't even want to be around people anymore because i feel so miserable.
I'm back. I'm five days into my first cluster since March 2001. The last one I had was 8 weeks. I forgot how mentally and physically debilitating these headaches are. I jumped right back in with 4-6 per day.
Looking for a doctor in CT that can help me with my cluster headaches. I am in the throws of a cycle now and losing patience. Any help would be great. Thanks to anyone that will listen and help.
Greetings and concerns to fellow CH sufferers. I've fought the beast for 27 years. As I approach my 50th birthday, I'm fortunate to have 2-yr remissions. In November I experienced the prodromes ("shadows") and, with my neurologist's total cooperation, aggressively attacked with prednisone and lithium. The cycle never fully manifested. I had a few minor attacks, and used my oxygen only a couple times. Well, the beast doesn't like being denied. I had to taper off the prednisone because I was having surgery. The attacks resumed and accelerated in frequency and intensity. I tried topamax for the first time, in combination with the lithium. Once I reached maximum dosage the headaches subsided. But people are right about topamax side-effects. I was like a zombie for weeks. If there is a next time, I'll stick with the prednisone-lithium combo, along with my oxygen tank on hand. It amazes me to see so many postings from sufferers who cannot get a doctor who will make a proper diagnosis nor prescribe appropriate prophylactic and rescue (or abortive) medications. There is a lot of legit stuff to try. I find, for instance, that during the cycle taking oral Zomig tab at bedtime can help me get through the usual CH wakeup call. I might still wake up at 5 a.m. with an attack, but as you all know, getting 4-5 hours sleep during the peak of the cycle is blessed relief. Best wishes to all...
1 year ago I suffered from a 4 month cluster of 4-6 daily headaches on one side of my head accompanied by runny nose etc. It was a knocking, brutal
pain). Because I had no diagnosis, I suffered through it with no drugs.
Towards the end of the cluster, I began getting ice pick jolts of pain in my face (not during headaches – just alone).
A few months later I was diagnosed by my Neurologist with Trigeminal Neuralgia (TN) and put on Topomax (not a TN medicine typically, but often used to
treat cluster headaches). Topomax did not work and had horrid side effects. He then changed his mind and diagnosed me with Ice Pick headaches – a form of
Cluster headache he said and prescribed Tegretol.(A TN medicine and not used to treat clusters) I have been on Tegretol for about 7 months – I have been
pain free and am tolerating it well (just a little sleepy). Why he treated me with Cluster medicine when he thought I had TN and then TN medicine when
he said I had clusters is beyond me – however, the point is – it’s working really well!
I am curious as to whether or not anyone here has been on Tegretol (Carbamazapine)? It is an anti convulsant drug (like Topomax I think.) It slows down
the neural impulses causing the Trigeminal nerve not to misfire. Between you and me, I believe I suffer from both TN and cluster headaches and would love
to hear from someone who also experiences typical clusters, as well as and separate from lightening bolts in the face.
I bought a TN book and it describes what they call Cluster/TN syndrome and I suspect that is what I have. Sound familiar to anyone?
A final note that I find confusing that …my cluster headaches never occurred in the middle of the night, nor awakened me – they were always during the
time I was awake (rather un-clusterish I understand). And when I am having the TN (ice pick) pain, it is never triggered by anything like touching of
the face or brushing teeth (completely un-TNish). Are there clusterheads who do not get these in the middle of the night?
Well, after 2-3 years THE BEAST returns. It appears that my beast retuns during the cold winter months(so far). I got my first taste of cluster headaches about 25 years ago. I was actually diagnosed by an emergency room physician. My wife took me there due to the unbearable pain. This was about 6 years ago.
My experience is unilateral pain on the right side starting with tightness and pain in my lower neck and upper right,topmost, shoulder muscles. It then begins to radiate up and around my ear then traveling to my right eye. At its worst, it seems as if some has a red hot poker, shoves it into my eye through by brain out the back of my skull and then proceeds to wok it back and forth. What more can I say, ITS HORRIBLE. Though I should feel lucky in that others suffer more frequently than I do.
Hope you all remain well or if in a cluster then get well soon.
Robert
I have been suffering from cluster headaches since 10th grade. Had a 5 year stretch without any clusters (1989-1993).But have been getting them again.pretty much once a year for 2 months duration.Horrible pain on left side of head.Feels like a hot poker driven into head,making contact with asensitive nerve , grabbing and twisting the nerve.
i reah from aba
First of all I would like to thank all here on this wonderful site. My wife has posted in the supporters section. We have both learned so much in a short time. I have found out I am not alone, I truly thought I was going crazy. It has caused major probs in our marriage that thankfully now we are able to talk and we willbe able to get thru this together. Thank you all again. I am reading the boards and all but it is not super easy for me to add my 2 cents in. thanks again
Luana Fader ia my name and it is my husband who suffers terrible pain from headaches. On a scale of 1 to 10, he is lucky if his number goes down to a 6. Most of his time is spent in bed. If anyone knows anything about oxycontin and how long it takes to help,m please let me know. luanafader@yahoo.com
After 2 years of these I am just now realizing what the incredibly painful headaches were! I just wanted to say thank you for the information and research that has been done. Maybe one day we can put the pain aside--For Good!
I am 13 years old and have suffered with CH's scince I was 6.My first one I was admitted into hospital, they thought it was menengitis I collapsed in school. Sometimes I get them alot sometimes not for 6 months. I have had them alot scince christmas. My Grandma who lives in England found this web site I am still reading everything but its good to know I am not alone. Thanks. Jonathan..
Hi I just wanted to sit down and write and say thank you for this site. My husband is the one who suffers from the madness of these headaches. We have been married going on five years and we are currently seperated trying to make sense of all this. Dave found your site and he is feeling he is not alone anymore, which he never was but he is positive now due to this site. So again I thank you for haveing it and all the support that is here. Linda in Texas
Hello fellow 'clusterheads',I have recently entered my lonely cycle of pain for the umpteenth time in the last twenty years.Reading the info and entries on the site I am suprised by the extent to which you have all been taken seriously by your doctors.No member of the medical establishment i have ever taken my problem to has ever gone any further than 'hard luck old chap'.As a consequence i have never received any treatment whatsoever for cluster headaches.I am now resigned to simply enduring this nightmare.I am lucky in having an understanding and sympathetic wife,as so many of you observe,the powerlessness felt by our partners is a source of sadness for them , and hence for ourselves.Sound miserable don't I !I know it will all be forgotten in a month , until the next time.
Dear Shane
In case this helps, CPH isn't that rare, there are hundreds of cases in the UK alone.
Below exerpt from an article by one of the world experts in CH and other headache syndromes (Goadsby)
" Chronic Paroxysmal hemicrania is a syndrome similar to CH except that the attacks are briefer and more frequent. It is absolutely responsive to adequate doses of indomethacin, which underlines the importance of not misdiagnosing it as CH.
Hello again.
Take heart... YOU WILL GET BETTER!
I just celebrated two important events - my 50th birthday and a whole year without clusters.
Most medical opinion (little though it is; I went wrongly diagnosed for 12 years) agrees that CH disappears in your late 40s or early 50s.
In the past year I have rebuilt my life. I still wake each morning and give thanks for another night without pain.
My life is transformed. I'm no longer addicted to dihydrocodiene. I am whole again. I am blessed.
Revisiting this site made me cry. I remember the pain. With all my heart I wish you all a recovery as wonderful as mine.
Don't give up.
p.s. I have a great drug-free technique for controlling the pain which really works. Email me if you want and I'll send you the instructions. It's safe, free, and you can do it anywhere. It can even stop an attack from developing.
i have suffered from migraine headache as far back as 10 years it was not until i was admitted to hospital for DHE infusion treatment that it was discovered that i was bipolar. at this point my doctors changed their version to ch i had all types of treatment all with limited sucess. i suffer these headachs daily but more in summer the hotter the weather the more severe the pain. i am now accept that i will suffer this pain and can only limit the pain through pain killers such as panadine forte 100, endone 20 this amount every two weeks, and pethidne 100mg each month and also valium each month as this also helps a little.
On top of these i take 300mlg of endep per night and epilim 1000mgs per night. the endep is also i have been told should help with the pain. all this has an effect on the short memory. i did not realise there were so many people with ch. i hope there is a cure out there as sometimes it does become hard to live with. it can have some scary moments considering i drive a truck for a living so limiting the pain is critical. good luck to all..
Please Read This! I suffer from a rare subset of Cluster HA's known as Chronic Paroxysmal Hemicrania. Believe me when I say they are worse than regular Clusters. There are only 50 known cases in the world. Lucky me. When percription drugs wouldn't help, I was put on 400mg of Vitimin B and 1000mg of Magnesium per day. It Helps a lot. I've gone from 20 attacks a day to 3 or so per week! This is a new treatment for pain, according to my doctors. Please try it and give it a week or so. I owe my life to it. I do not get any relief when the barometric pressure changes but Im much better off than I was. Let me know.
I just recently found this web site. Ha! there are a lot of other people who curse at the man upstairs. It nice to know that I am not the only one doing this. I have had CH for 16 years or so. I kept going to "doctors" who gave me the story its TMJ or some other nonsense story. I found an article that a man talked about his CH. So with my knew knowledge a went to a doctor and told him what I had. His reply "Oh, ya that sounds like it doesnt it." Thank you. Now 37 not much improvement. Imetrix is awesome but it is $. I use pills, shots, and sprays to try to get around the costs of shots and sprays. I am now on prednisone and verapamil with limited success. It seems to reduce the number from 6 or so to 1 to 3 a day. I have had some luck with keeping my mind very busy to help but, well, I can hope. I recently went ot the hosptial to get a pain shot and the nurse asked how I would explain my pain. I replied "holy shit". You know that got the point across to her that I was in pain and not just with a "headache" as most people seem to think. I hope all with CH the best of luck.
I have had CHs for 8 years. About 5 years ago I saw a TV add for Melatonin. It said it helped reset your bio clock. I was working crazy long hours very little sleep. I was in the middle of a cycle and sent the wife to the drug store to get some. 3mg (Nature Made)is what she picked up. I find that if I catch it early I can abort an attack by taking one. If I am in a an attack it will usually stop it within 10 to 15 minutes but I have taken up to 3 to do this. This is a very cheap dietary supplement. The only side effect that I can tell is a good nights sleep after my Ch is gone. I have read that the U of Michigan was looking into seratonin. I dont know what their findings were but I do know that Melatonin works for me. I thought that I may have rid myself of CHs for good but that was not so. I do always keep a bottle at home and one in my vehicle just in case. I hope that some of you will try Melatonin and find it to help. I dont bother with Emergency rooms and Doctors any more. If this works for you please let other CH people know so they can try it too. rws 01/23/04
I guess I have been suffering for 4 years or more, but never knew what it was until this past month when my "NEW" doctor told me it sounded like CH to him. I had always thought I had a sinus infection so I would go get a shot of decadron and take antibiotics. This time (they started back up again in November 2003)however has been the ultimate test to my mental and physical stability ever! My wife has witnessed a few episodes and is just beside herself in that there is just nothing she can do for me. I went to see the doctor by myself the first time but didn't feel like I got the results I wanted, probably due to my own lack of communication. So I went to him a second time, with reinforcements(my wife) and she told him that I am not some freakin cissy, that I have a pretty high threshold to pain -but that this was off the charts and was totally unacceptable.
My doctor has tried me on enderal (beta blocker), verapamil (calcium blocker), hydrocodone (vicodin), imitrex 100 mg tabs and prednisone. So far the prednisone seems to work the best for me. He started me on a "4 mg. prednisone medrol dose pak". The dose pak is for 1 week - 6 pills 1st day - 5 pills 2nd day and so on until they're gone. I was pain free for the entire week (there is a god!) but they came back when the pills were gone. He has now put me back on another 9 days worth of 20mg. prednisone tabs (I am also taking the verapamil, imitrex and the vicodin (when I feel I need it).
I don't know that it's any "cure" but the relief is worth it. None of the meds are all that expensive EXCEPT the imitrex, which is absolutely outrageous and ridiculously expensive.
Hope it helps -
I have a really big one, it’s really long. (I know that all the boys say that.) Best you make a cup of tea, and then sit down to read my story.
Like almost every one else, I must begin by announcing my extreme excitement at finding this web site. It is a truly brilliant site for both Cluster Headache sufferers and those who have found that some of their friends or family members are Cluster Heads. Well done to D.J, you’re the Cluster Heads celebrity; you’re sure to get an ‘access all areas pass’ in heaven.
I am a 29-year-old male New Zealander and I had my first rudely unannounced and uninvited introduction to Cluster Headaches three years ago. One night in February I woke up in the middle of the night to the searing pain of an invisible demon of terminal diseases twisting a big, hot blunt knife into the back of my left eye. I had never felt anything like it. I had had headaches before, but this was mind blowing, much more aggressive than a common ole headache, it was more than one too many wines, this was sure to be a brain tumor. I got out of bed and took some Panadol (Paracetamol) and went into the bathroom, which was the farthest room from my sleeping partner, and proceeded to bounce about and bang my exploding head against the floor for the next few hours, of course the Panadol never took effect and the pain didn’t go away, until it was good and done with me. My left eye had swollen and sealed shut, and no matter how hard I tried, I couldn’t open it. It was crying too, lots and lots of tears, my right eye wasn’t. I really did think that this was all the beginning of the end. That night, I shook the hand of denial, I didn’t want to die, I had guests coming to stay.
The next day, I got another one; this one was in the afternoon, 2pm. I couldn’t believe it was happening again. It was two weeks before I made an appointment with my Doctor, and every day for those two weeks I had this thing happen (I now know the Kip Scale, mine are 9-10) at pretty much 2pm and 2am every day. I was scared to go to the Doctor, and have it all made real by a diagnosis. Although the pain was more than I had ever felt before, I was terrified.
I told my Doctor what had been happening, and she (bless her) told me that she thought I might be having Cluster Headaches. She pulled a book down from the shelf, and showed me a picture of a mans head, with a gray shape in his head exactly where mine hurt. I had told her that the shape of the pain felt like half of one of those Yin & Yang signs, with the point going straight into the back of my eye- this was the picture she showed me. I know now, after reading many of your entries in this visitor’s book, that I am extremely lucky to have had a Doctor that knew what it was straight away. I had to confuse no one, nor suffer misdiagnosis, like so many of you. She asked the right questions, and declared it Cluster Headaches.
She prescribed me Verrapamil and Immirgan (insert Imitrex or World Wide Equivalent here) pills. They didn’t help me, so she suggested an Immirgan (insert Imitrex or World Wide Equivalent here) Auto Injector Thing. I said “Yes Please.” She got her little Nurse to show me how to do it, and it worked. It takes about 10-20 minutes, but I know it works, so I know there is an end. The injections make me feel sick and cold and sweaty for a while after, but they stop the brain damaging pain in my head and that’s what I’m after. The attacks were twice a day for four weeks, my life revolved around them, and the fear of them.
Then they left me. My Doctor said that it might be all over. She said that some people only ever get them once. For three years, I was one of those people, until this Christmas. They came back, two months early (late Dec, early Jan), but lasted again for a month. I Dialed 0800DENIAL and renewed my subscription, and it took two weeks again to go to my Doctor.
I got more injections. I had some arguments with Pharmacy staff about giving me the amounts I needed because there is some rule in New Zealand that you can only get two injections (2x 6mil vials) per prescription, my Doctor is very good to me though, she does what she can to move things along.
I know of no other Cluster Headache sufferers, and no one I have explained them to has had any idea of what I am talking about nor the life changing pain they bring. I hope one day to meet another Cluster Head. This Web Site really helps, I know what you are all going through, and you know my pain too. Having read many of your stories, I know that I am very lucky to have them less frequently than a lot of you. I understand a part of you all.
Contact me if you want to talk. Nice to have finally met you all. Xx Nick.
I feel so much pain for some people who have talked about having these for a very long period of time, like poor Brandon. Mine come about once every three to five years, but when I get them, they last for about a month. It is definitely the worst pain a human being can have. I have had some success with oxygen therapy. Please ask your doctor about it. Good luck to all of you in this difficult fraternity.
Hello there everyone, I don't suffer form cluster headaches my father does and I see how bad he feels everyday, and right now there is nothing that has helped him. I hve refered him to this site, and told him to check it out.
You tell yourself everytime it is happening that its not a cluster, but you get a bad feeling in your stomach because you know it is. You brace yourself for the pain that is about to happen. Once it hits you cry out to god asking for help, but he never seems to hear you. Nobody around you can ever understand what its like. The pain is almost indescribable. I am about to turn 18. I have had them for 5 years now. I don't know how I will deal with them for the rest of my life. When they do come living seems pointless. If you do not suffer from these be thankful.
Hello - I just recently came across this site although I've suffered with cluster headaches since I was in my early twenties (I am 39 now). My coming across this site is bittersweet. It is nice to know that I am not the only one going through this pain and that there are other people out there that actually understands the pain, but it also saddens me that so many suffer from this dreadful thing.
I have read a lot of messages on the board and my story is similiar to just about everyone. I am an episodic sufferer and have been for nearly twenty years. I am thankful though that I do not have it as nearly as bad as some of you. My remission seems to last a lot longer than most and for that I am grateful. When I first began to get these headaches I went to my doctor and he gave me different prescriptions to help fight off headaches. Finally, he figured it was CH. Just about the time he figured out that it was CH, I stopped having them and I didn't feel the need to go back to him. Making a long story short, I've never been on or have tried any of the preventives or abortives mentioned in this site. Since it is usually a long time between cycles for me, I've just taken to using over-the-counter stuff like Tylenol, Motrin or whatever when I feel one coming on, sometimes if I catch it in time, it works, other times I'm not as fortunate. I am currently in another cycle and have been hit hard this time around. The only saving grace about this cycle is that I usually get them at night when I am home and I don't have to miss work, except for today, when I was exhausted from being up all night last night with one. I can't fathom being a chronic sufferer of these headaches, my heart goes out to all of you that do.
Hi, I found this site out of desperation! I've been to my doctor so many times I am embarassed about how thick my file is. Two days ago I suffered another headache (or monster in my head). It started after flying on a 3 hour flight. I was inbetween flights in the Chicago airport and I knew something terrible was about to happen to me. I didn't realize what was in store for me. The pain was so bad I thought I was going to die in the airport. I was alone and I figured they would see me go down in the airport. I didn't realize the warning. By the time I finally arrived home on my last flight I was crying in my seat. I couldn't sit still and people were watching. I ended up at my doctor's office again and he sent me to the emergency room. They said their hands were tied as to pain medication because of my allergies. I am allergic to morphine and demerol and a few others. Nothing worked. They did a CT scan and came back shaking their heads. They sent in two neurologists who examined me. They asked me enough questions that I wanted to hit them for bothering me. They then wanted to do a spinal tap because the pain was so bad. I stopped the nonsense there. I couldn't take much more. They explained that the headaches I had been having for years (that went undiagnosed from my family doctor) were cluster headaches. Finally I knew but still no help. They gave me a few pain shots of "I don't know what". I couldn't care less at that time what they were only if they would work. I explained I also had a swoosh in my head besides the pain. They said there was no such thing as swoosh in neurology. I was told it was a wave. I don't care what it was called IT HURTS! I went home 8 hours later. They told me it probably was caused by lack of sleep! I was given a note to see my family doctor for abortative? medicine. I also do suffer from sinus and have had sinus surgery. Any suggestions before I pound a wall out? My family doesn't believe anyone could have this much pain.
After reading many sad letters of people in pain, I feel very blessed that I have a wonderful Dr. who is compassionate enough to treat my migraines. I haven't always had help for them but my Dr. has a standing order for pain medication at the hospital where I live.
my mirgraines started when i was in my late 20's, and they do get you down!,people think oh yes just another *headache* but they are so wrong, ive been on so much medication, and even to Morphine- i know alot of people suffer with Mirgraines but when an attack happens you think that you are alone, but you are not. thanks for the oppertunity to say my few words.
I am a 32 year old mum of 4 and have been suffering this evil affliction for about 8 years, over which time I have been told it was Sinus pains, Migraine,Tension Headache,Optical problems, Dental problems and possibly the best one yet, that as a young mum of 4 I was just stressed!! But Hooray! last week I finally saw a Dr. who told me I am suffering from CH! He didnt seem to know much about them though and has prescribed Beta Blockers which are having no effect whatsoever! So I am now going to keep trying various combinations until I hopefully find the right one. My attacks are episodic, usually striking every two years.The dreadful mind bending pains start late november and last for about three months, so xmas isnt a very happy time for me!
I cant tell you the relief I felt when purely by accident I found this site.I was so happy I cried! To know that I wasnt going mad or worse! I am slightly saddened by the fact that there are so many peple suffering with apparently no relief.But reassured to know that when I am awoken at 2am on the dot to face another night of hell that I am not alone!
That is the wonderful time of day It all begins, and I get up from my bed take the usual walk down to the kitchen, hunt for the pain relief ( of which I was consuming a scary amount), put on the kettle for my hot water ( which doesnt really help, but makes me feel like im doing something)and cry. I will then take my hot water and flannel and sit in the living room putting flannel from water to face every 2 mins.I think the pain from the nearly scalding water distracts from the CH for a few seconds! The pain takes hold of my eye, then side of my nose, then my temple until im reduced to a quivering wreck. I sit with the cloth pressed hard to my eye as if I was trying to harm myself. One hand clenched hard on my exploding head, and there i sit rocking frantically back and forth, crying, praying that it will stop.This usually last about an hour or more often than not 2! By which time I am totally exhausted. So i try to sleep again, laying on the sofa, eventually giving in to tiredness, only to be woken again at 4am for the whole ritual to start again!!
I can suffer up to 8 attacks in 24 hrs, and the lack of sleep has some very bizarre and frightening effects! Hallucinations, out of body moments, all so worrying that you put off sleeping thinking that if you just wait til after 2 am to sleep you can beat it.Not so,this just makes it much much worse!!
I am very lucky in that I have a very understanding partner, who hasnt minded sleeping on his own for the past month or the miserable zombie that ive become.Weak and tired. The kids are less understanding which is normal, they just think that mum has a headache and is tired.
Other people are not so understanding! I swear to god if I hear one more person say 'Oh I get bad headaches or, Oh I get severe migraines,Or oh its the change in the weather, or even worse 'I know how you feel' I will do something illegal. No you dont know how I feel, let me grab your eyeball from its socket and squeeze whilst im digging a screwdriver into your face very slowly, then you will maybe have a slight idea of how it feels!!
I feel strangely better for getting that off my chest!!
I would love very much to hear from anyone who does know how this feels, so please email me.
I hope you all find help and i will certainly keep annoying my Dr until i do!!
I am so glad I found this site. My wife and DR both didnt believe the kind of pain I have been it because I didnt fit the mold of a MIGRAINE headache suffer. Well obviously we all know better that CH is a whole other DEMON from a migraine. I have suffered with these since my mid teens and all with out the help of prescriptions, but that has taken a toll on my quality of life. It wasnt by choice that I fought this battle with out RX. My Dr's never would prescribe anything, they always said,"We could give you something for a migraine but what you describe isn't a migraine so we cant give you something for that." This last week I went to the ER for the first time because the pain was so bad and it had been 4 days straight with only minor pauses of no more that 1-3 hours with marginal pain. I was taking obsene amounts of Exedrin, tylonal, asprin, advil, alieve, cephadyne, and decongestants(because I was stupid and thought it might be sinus pressure causing it, funning since the ER visit ct scan showed no sinus problem what so ever)and was loosing control over my health that I no longer gave a damn what I had to take to make it quit or how much I had to take of it. And I was scared to be in that position, I was more upset when my thoughts turned to other alternatives to make it quit(and those who suffer probably know what I mean by that). I was tired of pacing the floors night after night and wearing out the floor and repairing holes the in drywall from banging my head in an attempt to jar something back into place to make the pain go away. I was sick and tired of laying in the floor off and on the whole night crying and shaking and holding my skull hoping that my bare hands could just crush it in. I was so mad after the ER trip and still no answers, I did get a RX for heavily addictive pain killers(which even in their might only work to take the edge off of the pain). I followed up with my family DR the next day to review what they found in ER the day before. Nothing, ct scan was clear, sinus was clear. So I was recomended to see a psyc. because the pain in so bad and makes you temporaly depressed while it is happening and since my DR is unaware of this condition I must have it all in my head, the pain must be made up. The more I have read in the last 24hrs on CH the madder I get to think that I have suffered for 15yrs+(now 32)with only OTC meds to get me by and my damn strong will power live on and not take my life like others have done before because they just couldn't take the pain any more, and I cant say I dont understand because I do. I've been there many a nights, but my love for my children, wife, and the fear of my God kept me strong, but it dosen't make it any easier to deal with. I am thankful my God lead me to seek answers since local DR's couldn't. And I am relieved to find solice here. I read many other posts tonight and I read the letters on the new visitors page and all I could do was cry. To know I am not the only one to suffer from the pain and fear of suicidal thoughts because of the demon, and to know that the general public including co-workers don't understand. We are told by our bosses and co-workers remarks like,"I've got a headache and I came into work today, how come you couldn't make it in, or well until you have a migraine you ain't had a real headache those things will put you to bed,(if we could be so lucky to get to go to bed during one of the demons cycles.) I am furious at the remarks made now that I blew off in the past. The first thing I am doing at my follow up appt this week is taking a ton of material I have printed off tonight to my DR and demanding that he has overlooked this and it is damn time he help conquer this and if he won't I will be seeking a new DR. I cant fight this fight alone and I am tired of trying but this web site has given me a new found excitement to continue the struggle. Thanks everyone for hearing me vent and God Bless the man or persons who founded this web-site. I appreciate it very much. And I am going to tell others I know who have the same headaches and are suffer much the same, WITHOUT HELP.
I have had cluster headaches for about twenty years. But I am lucky.About fourteen years ago I was recomended by my neurologyst [who said he was giving up on me]to another doctor in Calif. who he had heard was haveing good results with cluster headaches. I saw this Dr. who I found out had cluster headaches himself , but had been in remission for years. This Dr. told me no problem and that in a couple of weeks I wouldn't have any more headaches. He was right. He gave me a prescription for three pills and they worked.The only problem is I have to take them all the time, due to the fact I get headaches all the time not just certain times of the year. I don't know if I am supposed to put this in this message,but my doctors name was Lee Kudrow now retired. But his son took over. His name is Dr. David Kudrow at Calif Medical Clinic For Headaches in Encino Calif. If you can get ahold of this Dr. you will be gratefull for life. Believe me I used to get headaches so bad that not only couldn't I work they kept me drugged so that I could live with the pain. I hope anyone who gets cluster headaches that thinks there is no help can get a hold of Dr. Kudrow. I haven't had a headache for fourteen years and it is great. Good luck
I Really liked your site guys! I give it a 19-8687 grade! phentermine
Hello, this is my second entry to the site. I have been with Chronic CH for the last six years. In the past, I thought there would be hope, but after trying almost everything, I am at wits end. 2-3 bad headaches a day have taken over my life. I see my neurologist regulary, but it is just a different medication or a higher dose. Only family and co-workers realize that it is more that a headache. I has started to make a 30-year old man cry because there is no end in site. My headaches make no break periods like others I read about. Now I've just started Topamax two days ago. If anyone suffers chronically like this,or has any info that may help, then please tell me how you have been dealing with it. Should I go to a headache clinic or somthing? I'm becoming scared to death. Thanks for listening. Steve
I am cluster sufferer who has been in remission for ten years. That is until now at the age of 39. I once again know the horror of that sickening pain which grows fast and furious and leaves me in a state of a moaning, screaming helpless little boy.
I have seen my nurologist, who has helped me in the past. I am now on Lithium, prednisone and have imitrex injections. This all helps, especially the prednisone(dulls the pain to a more bearable level), but i am convinced the pain wants to be felt, you can abort an attack, but the pain or as this web site calls it the "demon" will come back. It's like there'll only go away when all of the intended pain as been felt.
I have never known anyone else who has suffered from clusters. Finding this site has already made me feel better about things.
Best regards Tom
I have been suffering from CH's for approxiametly 3 months. I am seeking other sufferers.My husband and children are trying to understand but unless you actually have them,I dont think anyone can understand! They are soo painful! I am seeking disability because I havent been ablt to work for the bouts.If anyone has any information on disability due to these clusters please contact me.
I hve been suffering from headaches that are constant for a long time. I went to the doctor and he tried me on 2 different medicines but nothing seemed to work.I go to bed woth a headache and wake up in the morning with a headache. I suffer with my Allergies also, I have to take an allergy shot everyweak then I have to deal with these headaches. I get discouraged alot because I Have to lie down just to get ny relief then half the time that doesn't work.I have tried all of those over the counter medicines and they don't work for me. I feel like i'm never going to get any relief. It is comforting to know that there are other people out there like me who hve that constant nagging headache.
I have had CH for about 24 years now.i have all the meds. gone to E.R many times,but they don't help much. I like to come to this site and read everyones problems dealings with Chs and the doctors.the best for me was imitrex injections,but the cluster is working around it also.has anyone tried ambien to help them sleep.Bob
PLEASE READ: I have had severe, crippling Cluster's for 20 years plus now. Always behind the left eye. I've been to countless doctors and have tried countless remedies and drugs, with only temporary relief, or in most cases, no relief at all. I have had ALL tests imagineable, and I'm perfectly normal according to doctors. I've spent alot of money on a handful of witch-doctor-type remedies because I was so desperate, that I would try anything. I have even written a song entitled "Cluster" with help from the band that I'm in, which I will post as soon as it's mastered. If I have any words of advice that could only help and not hurt a thing to try, PLEASE READ THIS WEBSITE PAGE!!!! The link is: http://neuro-www.mgh.harvard.edu/neurowebforum/HeadacheArticles/1.11.9712.54AMClusterHeadacheC (or search for "cluster cure"). It refers to hypoglycemia and clusters. I tried cutting most sugars from my diet, and in approx 2-3 weeks, I am now totally free of my cycle!!! I am also no longer in need of my medication (Relpax) whatsoever!! I had no idea that I consumed that much sugar! I thought I was normal by having a few sodas each day and a dessert after each meal, etc. However, after researching the symptoms of hypoglycemia, I was shocked to find that I had 90% of the symptoms of a hypoglycemic. I really think that they are onto something, and like I said, other than a little discomfort from missing a dessert or 2, or the unpleasant taste of a few diet sodas, what's it gonna hurt to try it for a couple of weeks. My belief is that my body took a couple of weeks to get adjusted to the new sugar levels, and now they have leveled off and returned to normal. I believe that all I have to do is try to continue to keep my sugar intake as low as possible (without going crazy cuz it's hard when you love sweets as much as I do!) and I will be cluster-free. This is after 20 years of suffering intense daily pain, with only a couple of breaks in between cycles. It impressed me so much, I had to post it. peace and good luck. al k.
I want to thank you for having this site. I was in it about 2 years ago but did not sign up. I guess I never realized how many people get Cluster Headaches. It will be nice to be able to talke to others about this, because my family just don't understand what I go through when I have them. The first time I started having them was about 10 years ago and that was the first time. I had to clue what kind they were and neither did the doctor. I suffered with them for about 2 months and then all of a sudden they were gone. Well 2 years ago they started up again. This time I had a different doctor and she figured that is was they were but she sent me to a specialist. I documented everything for each day on what was happening. He said I was having Cluster Headaches. He said that they usually occur in men but that women do get them to. They are a persons nightmare. you are afraid to go to sleep at night because you know what is going to happen and mine also come during the day, as of right now i am just geeting over one that I have had for the last 3 1/2 hours. I can finally bear the pain. There are days that you don't even feel like you want to live they are so bad, but you get through.The lst time I had them they lasted 8 weeks. I hope this time that don't last that long, but I am sure they will. It is almost like a given. I now can talk to other people on this, I know that I am not alone. So thank you again for having this Web site.
Yvonne
Female age 48. Live in Cary NC and work at UNC-Chapel Hill. An episodic clusterhead, but seem to come more frequently (seem to have an episode about every 18 months). Love to sew wearable art and have a wonderful husband who is very understanding with my headaches.
Cluster headaches hit me at age 41. They suck and iI don't understand what are causing them. I am seeking answers and solutions.
I started taking, what I called "pains in my head"in Nov 2002 and my GP put it down to stress. I was unable to brush my hair, sleep or stand light. I was given sleeping tablets to help me sleep as I am a single parent and needed to get some sort of sleep. I attended my GP everyday for 6 weeks in a row constantly demanding answers. They eventually decided to refer me to a neurologist, which I now have an appointment for in Feb this year. The "pains" started again Nov 2003 - exactly the same time as the first bout and I cried again to my GP. I have had 3 MRI scans done in the last year and am going for a CT scan (hopefully) when I see the neurologist. I only learnt about "cluster headaches" through watching a tv programe called "Causalty" were a man went into the A&E unit with these pains and it was a security guard who told the consultants there that his brother-in-law suffered from the same symptons. I am going to get an appoint. with my GP tomorrow (Thursday 8) and take with me the print out that I got from here on Cluster Headaches to tell them that this is what I am suffering from. My symptons are the same, maybe not as severe as others but this has to be what my problem is. I cannot live with this pain anymore and have felt on several occasions that life is no longer living, but at least I can now put a name to my problem and have somewere to come to for support.
Im so glad I have found this site and that Daren started this site for others to communicate with the same problem.
I have just started having these most painful C.H.I asked my mum to please put me down or to shoot me the pain was so bad.I have never had pain like it before. I am 23. I have had these C.H 3 TIMES A DAY FOR THE PAST 3 WEEKS AND THEY ARE DRIVING ME MAD.
I have had cluster headaches for 6 years and I just wanted to mention that it is a good idea to have your eyes checked if you are having cluster headaches. I have seen a big improvement with my new glasses and I thought it was worth mentioning.
Hello. I found this site about an hour after one of my "episodes". This one started in a check out line. Ever have one of those? One minute your fine walking up to the line, then a split second later you know whats gonna be happening by the time you get to the car. Thats is if the checkout is fast enough. I try hard not to be rude but just the onset of the pain can make me a little snappy. Anyways im glad i found this site. Ive been dealing with these things for about 10 yrs now. It sucks knowing that other paople have to suffer with this kind of pain, but its also comforting knowing that im not alone with it. Thanx.
Hi everyone this is my first time chating on line to people .I just wanted to let you know that I have been suffering on and off since i was 10 years old with clusters . I to have tried many of the same things you have tried . Right know i am in a real bad cluster it has been since dec 16. The pain has been unbearable at times . Right know the doctor i go to has perscribed maxalt which seems to dull the pain some . I seem to go through them like candy. My question is has anyone used exercise or any other form of relief besides drugs? I have been having a hard time telling people how bad this hurts . A lot of people think i'm craxy and don"t get it. I am a very active and upbeat person with a job and a husband and 2 children and right know i feel i"m letting everyone down because I can"t Plan anything because i don't know from one day to the next.
I am shocked at how many of us there are.I know now I'm not crazy.I had been in remission for 5 years but now it's come back on me hard.I've tried so many things in the past and have had DR,s and family members treat me like some kind of a nut.Having this demon back after 5 years is very depressing.I deal with it but it sucks the joy out of life.I work rotating shifts for an uncaring employer so having an abnormal sleep pattern makes prevention hard.It's been on me again for 2 months now and has ruined the holidays.I'm afraid to go far from my house because that's the only place I feel comfortable while trying to let an attack ease up.I've had broken bones and other injuries that are not nearly as painfull.I wish my wife or anyone else who does not understand could feel the stabbing in the eye just for 5 minutes.That's all it would take.Does anyone know of any thing I could carry at work or when I'm out of the house that would stop an attack in it's tracks besides a pistol.Please write and let me know.I'm ready to try to beat it again.
been a ch sufferer for 30 years and i never found anything that could cure this and kill this devil.I can be without any headaches for 2 to 3 years and then all of a sudden they come again,the pattern is always the same it happens after i ve fallen asleep; usually around 2am and last for approx 45 minutes,during which i find myself doing all kinds of ridiculous things to try to forget the incredible pain.So i am a bit apprehensive around the months of may and april and november and december,so tonight i will get one i m sure.I am certain that what triggers my ch is the atmospheric pressure.Bless you all,and be strong.love Carlos
hi all its a life of hell ive suffered for 28yrs with ch it started after a rta at work, i have found a warning sign of a attack comeing and that it i go into a very low state of mind approx 4 days before so my life is not a easyone for me or anyone with me i feel sorry for or partners they to go through hell takecare all .
I want to know what the physical cause of this is, I can only deal with it if I know what is actually happening. My first experience with this thing was 9 years ago. Now it has returned.
Ihave been a sufferer for about 12yrs now.It really helps me to know that I have others to talk to when I thought I was so alone.nobody understands my pain.I always get "oh yeah I have migraines too" when in fact they have no idea of the amount of pain i am in. Thanks for this great web site.
been fighting ch for 10 years or more now.this last bout has been up to 6 a day.doc dont know what to do for me. prescribing tyl #3, elavil,neurontin,these have been plague for about 3 weeks now.my mind is toast.
Its great that i have found this site. I fealt that I was the only person to be getting these evil pains. Now i dont feel so alone. sufferers are the only ones that will ever understand what we go through. my love goes out to you all.
Hi to all of you with CH i know just how you all feel as i have had CH for 10 years now i have just found this site and it helps alot to now i'm not the only one out here with CH Keep fighting and god bless to you all Kaush
Me and my girlfriend suffer with cluster headaches and found this webiste really useful. I have suffered with these headaches for 4 years and i haven't found the answer until now. I have sympathy for all sufferers of this condition and i know how intense the pain can be. Thankyou to all who have posted information this wesite. We don't feel as we are alone.
Hello.... My names Todd. I live in South Florida [Boynton Beach] I'm 32 years old.. I had my first real experience with the Monsters 4 years ago... I finally went to see a Nurologist after suffering for 4 weeks and he told be what I was so lucky to have :( 2 weeks after that they went bye bye.. THANK GOD!!! 4 years have gone by now and of course I let down my guard.. going into late December-January.. I guess they decided to pay me a holiday visit!!! lucky me NOT!! For me the Monsters love January.. same crap as 4 years ago.. Back to Imitrex and no sleep... Its nice to know Im not alone.. God help us all..
My heart goes out to all, but with the New Year upon us... we become closer to something that may work for all of us.
I too have tried one drug after another, currently I'm using Prednisone with 240 mg of Verapamil. It's seems to be doing the trick for now. I have discovered a big trigger for me. Nitrates!! They appear in all kinds of food, not just alcohol. I even discovered that my bottled water contained nitrates. Once I discovered this, I was able to manipulate my diet to reduce my nitrate intake, and the frequency of my headaches dropped, I even had a huge decrease in the number of shadows each day. This may not work for everyone, as triggers for some people seem to have no effect on others, but I felt compelled to share this as it has really helped me. I wish all of you a Happy New Year, and I pray the beast visits you less this year.
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