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Below are the guestbook entries from June 2001. 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 feel inspired to contact somebody / anybody who have tried, like my dear friemd, to handle the pain of Cluster Headaches without the use of pharmacutical drugs. He is currently in a cycle and we have just spoken on the phone. I told him how charlie recommends the use of Dr Wright's Circulatory Method, and he understands the principle. He has a theory that the misdiagnosis and inadequate treatment of a tooth possibly 15 years ago might have led to his Cluster Headaches which started some time afterwards. The tooth was finally extracted earlier this year but the headches are back. So he is is now trying to concentrate the blood from his temple to the where the tooth problem occured. Apparently he can manage to get some if only brief relief. charlie did mention that it is very hard to achieve, should I tell hin to persevere? He is very keen to avoid the use of medications and we welcome any suggestions of alternative methods of pain control. What are your thoughts on the 'tooth connection'? Having lived with my friend whilst he goes through these cycles and witnessed the agony, I have, like others, felt the pain of not being able to help, as well as experienced the impact this condition has on the life of sufferers and their families. My thoughts are with you all.rikke <rikkeandpaul@austarnet.com.au> NSW Australia Saturday, June 30, 2001 at 06:07:45 (EDT)
Just looking around in here. have been having these things, on and off, for maybe 20 years. They're back now after about four years - really beating me up! Thanks for the site; hopefully I'll find something different. I've been trying to quit smoking (back and forth) and believe there is a connection or trigger along with lots of stress in some other areas. Anyone have some similar thoughts?
1:15 AM and dreading the night
They've been gone for a couple months (thank God), but I'm taking a communications class, and my informative speech is tomorrow. I figured I would give my speech on cluster headaches because more people really need to know about them.
Hi,I am new to the site and a "new" sufferer. I started getting clusters in January. At first I thought I was just stressed because I was getting married in a few months. I was very wrong, after having continuous headaches and severe bouts my husband said "do something" I went to my doctor, she did tests, I had a catscan, nothing came out. She called me finally in mid-March and said this may be something you have to learn to live with. As many know that is not possible, I in turn found a specialist, he is good, but I am in trial now trying to find just the right treatment. I am currently on Fiorecet, does little to nothing. I have already tried Darvocet & Fiorinal..I don't want to be taking drugs my entire life. I had an episode last night, it started on my way home and hit me bad mid-dinner. I just got up and went up stairs, I lie in bed restless, moving around in hopes that some position or movement will make it stop, I took a shower in hopes that the beating water would calm it, not! My husband is frustrated and worried, he is wonderful and I have put him through so much hell, I am so moody, but I am completely worn out, depressed and just plain tired of this. I try to explain to him that the pain is so intense that I somedays want to just die, I never thought I would ever think that, but it is sooooooo bad. I took tylenol PM to make me rest but I wake with it no matter what, I just want some rest...I don't want to live like this, I don't want my husband to go through this. How long can he deal with this, I ask myself often, I know he understands but it wears on him too. These "things" are definitely the devil, they aren't just painful for us they are painful for our loved ones. I wish for all of you to be PAIN-FREE and hope for us all that we will all someday be completely pain free.
While cruising the net looking for a better explanation for my co-workers of my malady I found this site and WOW something more than a statistical figure telling me I'm not alone. The actual diagnosis at this point is Paroxsysmal Hemicrania as a differential to Temporal Arteritis neither of which has been totally ruled in or out.
Hi, I have suffered with CH for 13 years. They started after my daughter was born.My mother started having CH after she had my brother which was 30years ago.I just started my cycle of headaches for the year the 23 on my wedding night. I need to go I feel one coming on
I cant believe I found this site. For 10 years I have suffered from these dang things and knew nothing about them. The first time I got them was when I was 23. They lasted for two weeks, then a year to date later for three weeks. Last time was July 2000. Lasted 8 weeks, up to four hours each twice a day. I self medicated with indomethacine. I have tried many medications with no help. I have stuck needles in my temporal vein to attempt to releive pressure. I have poured ice water in my right eye and pressed on it hard enough I should be blind. I feel another group coming around the corner. Doctors don't seem to know a thing about these. Can anyone help?
I was diagnosed with migraines and sinus headaches and I have to thank God for the internet because I was finally able to find out for myself what was wrong with me. It's good to know that I am not alone, none of my friends or family or my basses have any idea what I go through, thank God you guys do.......
I had not had a headache for about 20 years until school ended this May. Since then,I have had very little sleep and have made frequent trips to the doctor. My family doctor thought it was a sinus infection and the treatment didn't help. I then had such a terrible attack that my wife took me to the emergency room. The emergency room doctor did all she could and then consulted a neurologist at the hospital. The neurologist started me on prednisone,which temporarily relieved the symptons for a couple of days. As the dosage was reduced, the symptons returned.They came back with such a vengeance that we called the neurologist and made an appointment. After she saw me and ran some tests, she admitted me to the hospital with a diagnosis of "cluster migraines". For the next 4 days,they tried different drugs to try and get rid of the headache. The last thing they tried was thorzene(not sure about the spelling)which seemed to work for about 24 hours,so they released me and started me on some Isoptin to prevent their return. However, about 24 hours later,the headaches were back.Now,of course, the neurologist is on vacation this week; so I'm at their mercy. I have been a school teacher for 23 years and could hardly even remember the headaches from 20 years ago, other than they were debilitating. They were diagnosed as cluster headaches at the IU Med Center, and I took Inderal for awhile. I guess it's nice to know there are other sufferers out there. I guess I'm also looking for ways to help myself through this. I know my wife is very concerned(just got remarried 2 years ago) because she has never dealt with anything like this before. Anyway,thanks for taking the time to listen.
Clusters for 30 years. Found non-drug solution about 20 years. Posting my story to the message board.
Three years with CH. They come primarily in spring and early summer. The first year's session lasted 2 moths and ended with the surgical removal of an un-erupted wisdom tooth and small cyst that had formed up from the tooth root in the maxilary sinus. They came back the followng summer and after too many hellish sessions, I finally found that Imitrex worked, but only took it after the beast had already started coming out. This year I'm using around 100 mg Imitrex between 6 p.m. and 6 a.m. in 25 mg Prophylactic doses. This works in preventing onset of CH until I get cocky and drop below the 100 mg a day titer, then it comes back with a vengeance. Just a guess, but I suspect a possible allergic trigger as the CH come with increased sinus irritation associated with the Northern VA pollen seasons. I spent most of the night reading through the CH.com web page and have already started the Water treatment. I used this in the past to successfully combat sinus allergy problems.
Wow! How is it that we have all felt so alone when there are so many of us? I've had clusters for 20 years-destroyed my career in the AF, three marriages (hey, I don't stop trying :)The stories ya'll shared moved me to tears. May God bless, protect and heal every one of us!
I have been having cluster headaches for the past 40 years and it has not been fun. When I first started getting these the best meds was codine, motrin and plenty of others that did no good. At times the pain was so bad I really wanted to end my life many times. While in the military I was on a boat and had to be picked up by heicopter and taken to the hospital because the pain made me black out. I now get these headaches about every 3 to 4 years lasting about 3 weeks. My daughter age 30 just started getting these and I hope with the newer meds she will get some relief. AMEN for "IMITREX" it takes away the headache in 12 min.
Thank You for letting me share this with all of you and if you have any qustions that I can answer feel free to email me at milliesm001@hawaii.rr.com and I will try my best to help you ease your pain. I believe I know alot about this
Thanks,
Myron Millies
Life sucks. Where is Dr. Kervorkian(Dr. Death) when you need him? I have episodic chronic cluster which are episodes
of long periods. They started in 1985. In early February I get lots of regular headaches. The next month they occur almost daily, sometimes non-stop. During this month they also get very intense but are still in stereo. I use Fioricet but soon the head-bangers are too much. Pain in stereo. I can't use prophylactic drugs like Prednisone or Sansert yet. I must save them for what's to come. Long term use of these drugs will kill my body later. The "Kervorkians" start during first REM sleep at the end of March. I start Sansert and huge amounts of Prednisone.
The Kervorkians always, always start on the left side. After three and one half months, the Kervorkians flip to the right side for an additional three and one half months.
They wind down in October. The drugs devastate my body. Prednisone always puts me in the hospital. I recently had surgery from still other drug damages. I get over the head bangers but it takes years to recover from medications. A new Neuro put me on Lithium this year that is safer for long term use. Pros and Cons. Imitrex injections are life savers.
I only get head bangers on odd-numbered years.
(1985,1987,1989,1991,1993,1995,1997,1999,2001)
My advise: If the drugs are killing you, don't settle.
Go elsewhere anyway needed.
I have had clusters for 20 years, I am 37. Just started a new cycle 3 days ago. Have tried everything except for some alternative stuff that I am looking into this time. I am giving the water a try, sounds interesting! It is great that there is somewhere to exchange information and talk about these things! Thanks for a great site.
Well the Devil is back and has been for 2 weeks. How come I always have to tell my doctor what to prscribe me ? The standard prednisone and migranol. I been suffering from them for 18 years and still cant get used to them but try and accept them because I know within a month or so they will be gone and life will be back to normal..
Hi I have had the devil since the middle of feb of this year and thought i was going nuts with the pain, it took some time for me to get help and through a few doctors and lots of meds.and money !!!!!!!!! its been 2 mths now and i still have them.I have never heard of cluster headaches before till now. i called my husband at his work one day and said that if he didnt come and get me to take to the hospital( thought my head was going to explode) that i was going to bang it off the floor. From thier i am now on the oxygen and it does help, along with other meds that i taking for the pain ,! jsut wanted to interduce my self to your site and willl be back ,, I have been every where on the net trying find photos of what is happening in the head or brain while the headache is happening! any one have any ideas !!!and if the cluster is happening with a nreve in the face then why take all the antidepperesnts for it !! i just dont understand all this !!! THanks for the time you spend you reading this and i hope someone answers me on this !! Thanks again !!
My husband has suffered with clusters for over 20 years. He to would bang his head on the wall or floor and scream GET OUT OF MY HEAD! This is most fearful to stand by and watch, knowing there is nothing you can do for your loved one. I would beg and plead to take hime to the hospital, he would never go. Sure he seen different doctors for the pain, after many tests, CT scans, spinal taps, MRI's and what ever else they could think of to do to him, they simply said, "There is nothing medically wrong". "To much stress in your job and marriage". We knew that was not true, so my husband gave up on the doctors until last November. The headaches were getting worse and worse, no releif. We did a lot of research and finally he decided he would go to the Diamond Headache Clinic in Chicago. Dr. Urban looked at his profile and asked my husband a few questions, he told us that my husband suffered from Chronic Clusters. FINALLY someone knew what my husband was talking about, he prescribed oxygen, Calan SR (beta blocker) Lidocaine, Sinequan (antidepressive medication). My husband has not been completely free, but if he feels the attack coming on, he immediatly puts the O2 on and the cluster is gome with 5-10 minutes, he decribes the O2 as his savior now, he even has a small tank in his car! I am so thankful that he finally agreed to go to the clinic. We are finally able to go out with friends, see a movie or just spend pain free time together. It is very difficult watching someone you love be beat up by the demons. I could totally relate to the stories on the first page of this site. May you all be pain free.
This is my first visit to this sight. I have gone almost 9
to 10 years painfree from the "beast". I started having
cluster headaches 35 years ago and it hasn't ever changed.
I thought that the pain was gone forever, then it started
all over. Reading thru the medical advise was dishearting
since no new relief is in sight. Same old treatments!!
I began having headaches about 3 years ago. I am 25 now, and they are still here. Sometimes they last for 3 or 4 days. They are really awful sometimes. I just started taking Vioxx and fioranol, but who wants to have to take pills forever? Not me, maybe someday my good karma will grant me with a headache free life. Any way, good luck to you all. - jamie
In the Army, been having THEM for 10 yrs. Don't know if i can continue yo hide them. Been v lucky so far but haven't tried any of the medication yet. Lets hope there is a cure out there.
Thank you very much for being so close.
Ufff! I thought I was the only person in the world in suffering this hell
It's great to know you are all there (sorry about my english)
Woke up with another one,about an #9,sucked down some oxygen and wondered if there might be something on the internet about cluster headaches.I did not expect to find anything like this.Spent the last two hours in amazement.I started getting these haedaches 18 years ago.After 4 years, many doctors and tests to include a CAT scan,I read a short note mentioning cluster headaches in a paperback about migrains and knew immediately that this was my problem.It has been a long hard ride,searching for information,fighting the ignorance most medical staff,insurance companies and pharmacies but things have been getting better.About 10 years ago I found up about oxygen from a UPS driver and a few years later imitrex was finally made available.They both work better than anything else I have tried and that is a very long list.Gotten some great advise from the information here and well let you guys know of any positive results.Later.
Woke up with another one,about an #9,sucked down some oxygen and wondered if there might be something on the internet about cluster headaches.I did not expect to find anything like this.Spent the last two hours in amazement.I started getting these haedaches 18 years ago.After 4 years, many doctors and tests to include a CAT scan,I read a short note mentioning cluster headaches in a paperback about migrains and knew immediately that this was my problem.It has been a long hard ride,searching for information,fighting the ignorance most medical staff,insurance companies and pharmacies but things have been getting better.About 10 years ago I found up about oxygen from a UPS driver and a few years later imitrex was finally made available.They both work better than anything else I have tried and that is a very long list.Gotten some great advise from the information here and well let you guys know of any positive results.Later.
During a bad one, I went to A&E at the local hospital to beg for help. The doctor did a blood test, and within 5 minutes the pain poured away; this happened a further time, with the same merciful result. At my wife's suggestion, I became a regular blood donor. I had no more attacks for over four years (my normal cycle was every 18 months which had been going for about twenty years). But now they're back. This might help someone.
I can not stand this anymore, I am at work right now and I am suffering from a cluster and I want to chop my head off because that pain would be less than what I have right now. I just took a Imetrex pill 100 mg and it usually takes about 15 - 20 minutes for the relief to kick in, i feel like screaming and crying, but I can't and this is a new job and I have already taken time off because of this devil of a head and I can't take any more time off. My dumb primary put me on to much Prednisone and now I can not take anymore because it doesn't work, and it has worked for the last 2 years. Now I have to try a whole bunch of different medicines that don't work, make me sick, tired and real real cranky...please make it go away!!!!!!
I'm not alone!!!!!The demon paid me a vist after a 2 and a half year absence. This unwelcome guest has been wiht me for almost 2 weeks, but I think he's moving on. I've had clusters since I was 12 years old and I'm now 39. I'm keeping my fingers crossed, I really can't afford to loose anymore weight. This site is great!!!
just returned from a trip to florida to see joseph arme a chiropractor who put my head on sraight! Seem it has been off about 9 degrees probally since I first started getting clusters 25 years ago. he made an adjustment to someone i know and he hasn't had clusters for three months. I wasn't as fortunate. He believes my body is full of toxins, due to the numerous medications I am taking along with other vascular triggers. He is going to hook me up with a person that uses herbal treatments to rid my body of those toxins. Sure hope it works !
Great site, unforunately. I thought my attacks were bad until I read some of the archives. I have had 3 sessions over the last 3 years, one headache a day for 10 - 20 days and then 12-14 months of remision. I wish us all peace and pain free days.
Hello, I think I've been suffering from CH for over 15+ years but didn't realize it. I'd tell my doctors that I get a lot of really bad aches and they'd say, you just have a lot of stress in your job. I use to take a fist full of Advil whenever I got the slightest sign of pain behind my left eye. For the most part I just thought that the horrible pain I was going through was a normal headache, but, last November when my wife found me unable to lay down, look at her, or stop squeezing my head and on the verge of tears, we went to the emergency room. Finally a Diagnosis to something horrible. What a miracle to have help from them. I've been using Maxalt-MLT for the early stages and it works most of the time. But if I don't catch it early I am screwed. I have Hydrocodone if the Maxalt doesn't work, and that works 90% of the time. But Lately the Hydrocodone is a joke to the beast and that's what scares me. There were times when I thought a bullet right through the pain would be a welcome relief, but I'm not one that believes in suicide. The pain is so intense, the depression can become overwhelming. But Thanks to that Dr. in the ER that finally gave me a diagnosis and help/direction to take care of this!!!! It's not 100% but believe me, any help is great! My wife says I'm a happier person now. I was really excited to find this website! Like the saying goes, Misery loves company, and with the information on this website I feel better already. To conquer an enemy, you need to know as much as possible about that enemy. So cheers to this website!!
I knew I was'nt alone, I just dident think there were so many of you out there. I have had CH for about 25 years, I have danced so many times I think I have worn out my shoes. I just had a good past 6 months, and I thought maybe things were getting better. But we all know what happens next...soooo here we go again! This is a great site, I will have to keep exploring, and hoping for new treatments. Well got to go....guess why.
They're baaaack! The demon has returned! I'm episodal very two years and usually get them durring the winter. I was due last winter, and when I made it through without any episodes, I thought that I was home free! not!!! They gradually started again about 4 days ago, and are progressivly getting worse. I know and dread the hell that is in store for me for the next two months. For those of you on the backside of your episodes, I wish that I was at that stage right now, but I know (as I'm sure you know) what I have to look forward to. I've had some success with Zomig in the past, but if that doesn't work, I will try the Imitrx injections as it seems like it has been helpful to many of you. I'm a recovering alcoholic and addict. Have been sober for 14 plus years. Durring my attacks, I try to work the steps, pray to God, and recite the Serenity Prayer over and over. Sometimes it helps, and then somtimes I really tell God what I think and feel! I'm happy that someone created this site. I'm so happy that I found this site. I'm so happy that I'm not alone. This site can be as helpful to me as an AA meeting where people share they're experience, strength, and hope. Thanks for being here. Try to take it "odaat" (one day at a time) I wish you all the best. jeff
Hi...I've been having these horrid headaches for just over two weeks now and I don't know how much more I can take. My doctor has treated me for migraine to no avail and has now got me on a regimen to treat for sinuitis but stated she thinks these may be cluster headaches. What little I've found to read on clusters has me just about convinced that's what these are...amazing how certain adjectives jump out at you.I can say up front Thank You!!!.....looks like this is the only place where I might find some understanding of what's going on for myself and my family who I fear may think I'm a little crazy.:):)
Carol Ann
I am new and searching for help. I do not have medical insurance. I am poor. I have had thoughts of suicide thinking about the headache that will come again. I cannot express in words the pain that I feel when I get an attack.
If anyone has,ANY advice or ideas, please help me. I am suffering, horribly. Nobody seems to realize how bad this is. Nobody seems to beleive me either, that a headache can be this bad.
Hi. Ive been getting CH for 17 yrs now, i know why they call them suicide headaches. Ive done my share of trips to the emergency room, thank god for imitrex but who can afford it. Its a wonder ive been able to hold down my job all this time. If it wasnt for my 11 yr old son i honestly dont know if id be here right now. I hope this site will help me. Thank you for creating it.
I have been getting CLUSTERS for about 2 1/2 Years and they hurt like HELL, Mybe this site will be help
Hi all,
Been visiting for a few years and been too shy to say anthing.
I have been an episodic CH sufferer for the last 4 years. I was very VERY lucky
to get diagnosed by my primary care about a year after the headaches
started. When I hear about folks who suffered for 10 plus years before
diagnosis it makes my left eye hurt in sympathy. I do not think my attacks are
as bad as a lot of folks here. Or rather, the worst headache I ever had was only
an 8 on the Kip scale. My clusters last about 12 weeks with about 6 to 8 headaches
a day. I get them about once a year. Although I have been proscribed depakote, verapamil
and various other medications including vicadan for the pain, I don't have a medication
method that really works for me. Most of the time I just suck it up and deal.
I am currently between episodes (happy day!!).
I see a neurologist when I am suffering and a chiropractor the rest of the year.
The chiropractor (DR. Bryan Wright in Watertown MA) has probably saved my sanity
the most. He gives me cervical adjustments that relieves the pressure on the
nerves and blood flow through my neck. I don't know if this will work for everyone,
or even anyone else, but that plus daily 1000 mg doses of l-Tyrosine lessened the
severity of my last cluster. His help has made my life worth living again.
It was very cool finding this web site--while I do not
usually experience the pain to the degree many people here
do my symptoms scream cluster headache (as does my head).
My family could never figure out why I wouldn't take their
advice and lay down and sleep when I would get my headaches-
they understand now. I had no idea so many people suffered
with these--I guess I never really gave it much thought.
All of you are in my prayers and thoughts-- and God bless to
the person who started this web site!
When I read the stories here it hits me just as hard as whe I first came here. I'm 54 and have been free of this horror for awhile but I also post the following regularly on the message board. I should be doing it here as well. What follows is a difficult but sometimes very helpful technique
Dr. Wright's Circulatory Feedback
This is not TM, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. With it, I knew I had a fighting chance.
When I was diagnosed, my neurologist said to treat these as a vascular problem. As odd as it sounds, I was told to concentrate on forcing blood-flow from behind my throbbing eye, down my neck and into my arms and hands. When properly done your hands will become warm and redder with increased circulation. I also found it much easier to concentrate on one hand.
What this does is relieve just slightly, the pressure on the affected vessel which causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about 40 minutes to no more that 15 or 20. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor twicthes instead of the killer pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.
I learned this from the Dr. in about five minutes. He simply told me to concentrate on keeping blood away from the head and to redirect it anywhere else. The easiest is the arms and hands but anyplace that works for you is fine. He said to think of it as "filling your hands" with redirected blood. Anything one does to retard this circulation will help. It is important to keep at it THROUGH the pain. This will be hard, but it is the only way this technique will work. I like to keep at it five minutes longer than seems necessary to insure success.
This will not always work but I think it will always have at least some effect on the severity and duration of the attacks. It's great between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than what I got from the Dr. as I've added some of my own experience.
I used this even when awakened in horrible pain. This is very hard but I think it does shorten them. It takes some intense concentration but it can be worth the effort. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best,
Charlie Strand
I have been a sufferer since December 28, 1996. When the first one hit me, I thougtht I was suffering from a Brain Tumor.
I have tried the same chemical cocktail the rest of you have with the exception of Lithium. That one has too many downsides for
me. I have found that I can function using STADOL NS which is a synthetic narcotic, and some doctors will not prescribe it. I have
been a patient of the Chronic Pain Clinic for two months now, and I am on a series of treatments for a combination that will work for
me. It looks as if the final solution will be a conistent dose of a narcotic morning and night to treat the Potential headache. I have
had a headache of some sort almost every day since 1997. I have very bad headaches a minimum of 4 times a week. I haven't seen Stadol on the
list that I read before I posted my message, and I was wondering if anyone else has found relief in this drug? I have tried Migranol, but it doesn't
have the same results, nor does Immitrex in the inhaler bottle. Interestingly I have not been prescribed the injection Immitrex.
GREAT website, and I will be back often.
daryl
Found this site today after 15 years of suffering - fantastic to learn am not alone in this nightmare. Still waiting for that miracle cure!!
I have suffered from clusters 30 years and have gone as long as 2+ years in remission but your always fearing there return, and they do.I have tryed everything and nothing helps
I get cluster headaches that usually last three days or more.
I've this pain for about 20 years now, and for the first time on all this years I've found someone that I can talk about it. This is great!!
After several years of suffering from headaches I finally found this site and quite honestly didnt even know what a cluster headache was until then. The several doctors I visited over the years never even mentioned cluster headaches. I am always weary of self dignosis, but after reading the information on this site, it describes my pain and symptoms to a tee. I am currently suffering through a bout with these headaches (luckly the first in a year and a half) and would appreciate any help of advice. Thx to all and good luck.
Harvey
Hello all! I have been browsing this website for several years, but never have taken the time to sign the guest book, or post anything about myself. So...here goes nothing.
I have been a CH victim for over 13 years. My first butt-kicking came while I was on a 1st date at the movies with a girl I had been DYING to go out with. Our date ended with her taking me to the emergency room and after a healthy shot of Demoral, driving me home and ouring me into bed. Needless to say, it was our last date as well.
I am married now, and have two children, 2 and 7 years of age. I was finally diagnosed with CH in 1995 by a Physician's Assistant at my primary care doc's office. Actually, I had been researching what may have been wrong with me when I found some info on CH. I presented the PA with that info, and she agreed that this was what ailed me. At first, we tried anti-depressants, no help. Then they increased the dosage, no help. Then we tried Midrin, REALLY no help, on top of making me feel as though my insides were rotting. Finally, I was referred to a Neurologist - Dr. James Stoody - Roseville, CA. Ironically, Dr. Stoody was also a CH sufferer. He put me on Verapamil, which seemed to lessen the severity of the attacks, but did nothing to break the cycle. It also made me feel very moody, and tired. Then he put me on Depakote. At first only 200mg per day. This decreased the frequncy and intensity of the attacks, but also did not break the cycle. To make a long story short, I am now taking 800mg per day of Depakote. This seems to break the cycle within 2-3 days of starting the meds. I only take the depakote after a cycle has started. After 4 weeks, I start to taper the dosage off. If the headaches come back, I go back to 800mg. Otherwise, I taper off until I am not taking it at all. From what I have read and been told, Depakote is very bad for your liver. So taking it for an extended period makes me very nervous. I also use the Imitrex nasal spray to abort headaches. It seems to be about 95% effective, but sometimes, I get a real ass-kicker that I just have to ride out. Those suck so bad I would do just about ANYTHING to make them stop. Another thing that has worked for me in the past is oxygen. Together with the Imitrex, this seems to kill the monster within 10 minutes. One problem. My HMO(Health Mis-management Organization) won't cover durable medical equipment ie portable oxygen tanks. It would cost over $50.00 per month to have this, and I cannot afford such an expense. So, for now, I just keep away from alcohol, and enjoy every pain free day as best as I can. It is wonderful to have a resource such as this website and support group. I finally know I'm not some sort of freak with an 'its all in your head' illness. It is also nice to be able to pull up a web page with testimonials from other sufferers, print it out, and stuff it in someone's face after that tell you 'come on man, it's just a headache'. It's so sad that most won't even take the time to TRY to understand what a CH sufferer has to go through.
Thanks to all, and may your days and nights be as pain free as possible.
Todd Chapman
Bad migrain weekly,take injections all the time with it,rules my life and effects my work,my injections take the migrain off in ten minutes MOST of the time not always tho,but i dont think it will work for everybody as we are all different.i have been refered to a specialist yet again. so watch this space see what they say this time .... .
Bad migrain weekly,take injections all the time with it.
I started having stabbing pain in my left eye 4 weeks and 4 days ago fading into a dull headache by the time the headache was gone the stabbing pain started again then fading into the headache again one day I had no pain at all
The dr has tried everything under the sun nothing seems to really help inderal does seem to control the stabbing but the headaches remain Sometimes I have my husband place his hand over the left temple and the pressure helps a bit I think my friends think I have lost my mind I have a very diffcult time concentrating and can't seem to accomplish anything these days I want to know how long this will last
at least if I knew there was an end to it I could have something to look foreward to. Sometimes I just get up and wander around at night like crazy people do I am trying to figure out the cure.When I do I will let ya'll know.
Hello to all, I understand everything i have heard from others on this website, I am a CH sufferer myself for about 12 yrs or so. I cannot explain the pain to others who do not have this dibilitating problem. I have beat furniture to distruction, bloodied my fists, bruised my head and yell at loved ones. This is a very terrible thing to have, it is a beast. I now take blood thinners to control the beast, and most of the time it works. I get them in the spring and fall when the weather changes.
I also want to tell the families of CH sufferers to just let us be when we have to Dance, there is nothing you can do to help. But your support is greatly appreciated.
Thank You.
I have had these headaches for about 10 years now. At first, I thought I had a brain tumor or something serious, but everyone laughed. My headaches are always on the right side and come on and leave the same way- very abrubtly and usually last from 30 mins. to 3 hours. I have had at least one every day, usually in the evening, for the past 2 weeks. It feels exactly like when you eat ice cream too fast, but it is behind my eye and in the sinus area and it will not go away. It is unbearable and frankly I haven't gone to the doctor because I have learned to "deal" with them but this past round is too much for me to handle and I would like to seek treatment. Please, if anyone can recommend a good doctor in the Cincinnati Ohio area I would appreciate it. I know it is not good to self-diagnose one's self but this page is exactly what happens to me, my wife is just starting to understand that when I get a headache I cvan do nothing, just wait for it to go away. Please email me as I would like to schedule an appointment with someone who knows what I have to deal with.Sincerely, Rob Davis
Thank You for such an informative site.. I have suffered from Cluster Headaches form the age of 10, as the years go by the pain increases and I feel I am no nearer getting help now as i was then. Its not nice knowing that there are so many other people who suffer as i do... May we all find peace.
I'm 53yrs old and have had cluster/migraines for 30yrs and yes I've been around the block a time or two, I'm sure you know what I'm talking about and don't have to go into detail. Anyway a life of hell! I was put on Topamax last oct and yes for the first time I've got relief! But also some side effects. Just wondering if anyone else out there has had problems with this medication? Also saw on the CBS evening news where there going to try and start giving it for a new weight lost drug. Hope they check out the side effects throughly. Thanks
My husband has been a CH sufferer for many years. He is in the middle of a cycle right now. We are looking for a doctor in our area that many have some knowledge of ch. He needs to find someone and something new to try. Anyone know of a doctor in Northern NJ area? Thanks for your help
thanks to whom ever put this site together.its great to see so many options and ideas i hadn't done or tried.all the best everyone!
Hello. I am a newly diagnosed "Clusterhead". Prednisone and O2 seem to be providing some relief, but I am still afraid to go to sleep!!! Comforting to know that there are others dealing with these demons! Good luck to us all!
I am SO happy to find this site! It seemed as though I was going MAD recently because the pain is SO tremendous. I try like crazy not to let it get to me, but it's hard not to let it show. I was ccomforted to see that I am not the only one who never gets a full nights sleep. God it's bad at nights.
Anyone out there experienced cranial manipulation?
I have just found your site and am becoming convinced that the
headaches that have always been diagnosed as migraines are
actually cluster headaches. I am in the middle of a cycle right
now, and my imitrex injections are outdated. I'm going to go
to urgent care and tell my doctor what I have found. Thanks
for being here!
I've just been to the neurologist who has confirmed my "headaches" for the last 18 months are cluster. I've yet to start treatment but hope that now I will try something that works. The site has been a great source of support and relief to me, cos I thought I was crazy. Thanks, I'll be back.
I am 48 years old, and have suffered the excruciating agony on and off for about 25 years now. In the past I have gone many many years between cycles. This time, it has only been four years since the last, and at the moment I am somewhere in the middle of a cycle, and the alien demon eating away inside my head is tending to appear between one and three times a day, one of which always wakes me in the early hours. It has always been on the right side of my head, and I sometimes feel my eye must explode with the pain. I have not seen a doctor about this for over 20 years, perhaps with all the advances since then, it would be worth another visit. I just keep going by telling myself it will end soon, maybe this is the last attack of this cycle. Ah, what bliss to be pain free.
Hello fellow suffers. I can't express how happy I am I
found this site! I've had clusters since I was around eight years old. I was luckier than most at least I was rarely treated like I was nuts. I turned chronic several years ago and in the last few weeks I didn't think I could take any more. For 32 years I've felt so alone now at least I know I'm not. God bless and keep us all.
Melinda
My first visit,25 years of HA and more medications than I can count.After I've had some time (a week or two) to look at some of your info I will become more active at the site. This is the first time I've met others with HA. Thank you
This is my second time on the guest book, But the more I read the entries the more it helps me cope with IT. I have had IT since '95 but was only diagnosed in '99, I have been told I'm a chronic CH, There is not 1 minute of one day I have without pain,3-4 days a week I'm WRECKED and the other 3-4 days I have a HA that most people still couldn't live with. I lost my job through IT & feel so inadequate when I tell people why I can't work, but now I've found you ( my NEW friends) I don't feel so bad. I'll stop there for now but if anyone wants a chat don't hesitate & I hope all your pains disappear SOON.
its been six agonizing years for me, both in the intensity of my pain and in the frustration of trying to explain and make people understand this...it brings me much anxiety.
i really would like to just raise and enjoy my daughter and be with my beautiful wife. i really would like to sleep. i really would like to not be a 28 year old man who can be reduced to tears in minutes.i want my old brain back
Thank you for this site! I have been feeling like a "big baby" because of these headaches. I barely go out of the house anymore, and a full-time job is out of the question. You people have given me reassurance that I am not, indeed, crazy. Thanks, again. Judy
I sometimes have the most painfull headaches. My headaches have made me sick to my stoomache, I have actually blacked out because my head hurt so bad.
could you please explain to me the difference between migrains and cluster headaches. My mother grandmother suffured from migrains most of their lives.
thank you
Hello,
I'm Steve from the UK. I am a chronic CH sufferer diagnosed 6 months ago. I have had CH for just over a year.
How painfull?
It is great to discover a place where we, the "happy few" who suffer from what I call, "headquakes" can find info, check out resources, and stay in touch with fellow sufferers. Clusters are something I do well forgetting up until yet another bout descends. I have often wished that i could speak with someone who might understand firsthand what cluster pain is like. So, thank you for this resource, and may we all live long, prosper and have long periods of remission.
I'm a 48 year old female who had her first bout of ch in 95. At least that is what the empty imitrex box in the bottom of the closet says. At that time I thought they were migraines even though the doctor mentioned cluster headaches. He didn't explain and I just thought they were a string of migraines. I kept trying to figure out what my precursor was so Icould hurry and take the Imitrex. No halo No weird smell No sparks before my eyes.Just wam bam thank you mam. Friends just kind of shook their heads when I said no vomiting.They just suggested kindly? that it was probably just atension headache or a sinus infection.Riigghhht.Lucky me they went away for 6 years but I got a very unpleasant visitor at 2 in the morning in the middle of May and have had a most unpleasant ride for the last few weeks. The doctor again mentioned cluster headaches but this time I decided to find out just what they were and it brought me to this site. Bingo! The big wet tear falling on only the right side of my face is the most bizarre feeling. Pain pain go away come again some other day. Thank the Lord I am in remission again-for another 6 years? The all day shadows are still with me but my family is starting to talk to me again and not go running to the far side of the house. Imitrex injections help-the creeping fingers across the scalp and I'm going to start drinking lots of H2O. Thanks for making this website. It really really has helped give me peace of mind. I'm not crazy and I'm not as wimpy as others led me to believe {How do you explain these to a mother who never had a headache of any kind in her life}. I've been carrying the 23 medical pages around withme and reading and rereading them,{Listen to this one honey}. Thanks again. May you all have very looong remissions.
Hello. I'm 43 & have suffered since I was 14. I'm in an episode now for the last 3 weeks. I take Verapamil to prevent them @ 360 mg. a day. Still get 1-2 a day @ 4 &/or 6 a.m. Imitrex inj aborts them within minutes, Thank modern medicine. Still compromises my quality of life, you know?
have just been told that i have cluster migranes after a month of all kind of test being run--have had them for about a month now--all on my right side--was told by doctor they might last a while might go away any time--hoping they quit soon--unbearable pain
Sorry all,
I posted earlier today, and didn't realize that this is where the history part belongs, so...here goes:
I'm a newcomer to this board, but not to the beast! I'm 55 and been dealing with THE "episodic" beast since the age of 7.
Prophylactically speaking, I've tried the 'ergots,' anti-depressants, and calcium channel antagonists. I have NOT tried Lithium, and don't plan on it. If I had the chronic variety I would have already been there I’m sure. I've tried Imitrex (sp), the percos, darvos, demoros, morphs, seretonin agonists, Oxygen, along with clinical applications of the hard stuff when BP got to 180/160.
I've had MRIs, CATs, and Xrays, and everything looks OK.
Sixteen years ago, I was finally properly diagnosed by a family practice GP. Instead of being treated for sinus infections that lasted for months at-a-time, things started to improve, only after accepting the situation and learning to manage my inheritance.
I found that, for me, alcohol was a trigger. Not addicted to the stuff, I find it easy to avoid during my episodes, yet it does not shorten the duration of my episodes, only lessening my visits with the beast by the number of drinks I avoid. I was told to stop smoking, which I did a little over six years ago. The physiological benefits of this act are amazing, however, now instead of having one invasion of my diurnal soma, I am plagued by several episodes per day at unpredictable intervals - sometimes followed by the shadow until the beast reawakens. Experimentation with the ‘ine’ brothers, ‘caff’ and ‘nic,’ has bitter-sweet rewards; while it chains the devil for the duration of my use during the conscious part of my day, thereby confining the dreaded enemy to the territory contained within my nocturnal bliss, it again reawakens the addictive craving I still have after the episodes are once again history.
I read about Lidocaine and wanted to give it a try, but my doctor was unavailable. I faxed him the information, and was told by his nurse that they were having trouble locating a 4% topical solution (will probably have to be mixed by a pharmacist), but the doctor will not be back in town until 6/25. Undaunted by his absence, I perused the local apothecary until I stumbled upon a bottle of Anbesol - a topical anesthetic (sp) - for mouth sores, etc., and decided to give it a try during my next session. At 2:30 a.m. the next morning I was rocketed to consciousness from the depths my spiritual drifting, awash in an anguishing sea of saline, gushing from both my right eye and nostril. The pain was pounding harder than an escaped convict grappling for refuge at the front door of a locked convent. At that very moment, I would have done just about anything conceivable to cast out the demon from my being. I grabbed for the Anbesol into which I plunged a cotton swab and without hesitation placed the instrument of anticipated liberation into my right nostril. The intensity of my tears increased two-fold. I left the swab in place, waiting…waiting for something to happen. At the apex of my discomfort, just seconds before aborting the rescue mission, I sensed an almost imperceptible degree of relief. I relaxed for a moment…waiting…waiting, and then finally, the intensity of the pain began to subside almost as rapidly as the onset appeared. Within ten minutes, the pain reduced to a level which allowed me to return to sleep. I’d like to know if anyone out there has tried Lidocaine, or any other topical anesthetic.
The following is a list of things that I have found helpful. I do not advocate these for everyone, or anyone, for that matter. Each of us knows our own strengths and weaknesses, and I offer my experiences only as a point of reference from you’ll have to draw your own conclusions, so – here goes!
During my episodes: (which usually last from 6 – 10 weeks, in the fall Oct-Nov-Dec, or in the spring Apr-May-Jun…sometimes both, and rarely I’ve skipped a whole year)
If hit during the day with my guard down (no Oxy): Darvon (cet) w/Asprin, Ibuprofin – only eases the pain slightly, eventually burns out stomach. Acetaminophen (Tylenol based stuff) is bad for my liver. . Ice+Ice – if available - Occasionally use Percodan to relieve some of the pain. Once the beast is gone, I’ve had no difficulty leaving the stuff alone.
All Season: Take 5-HTD 50-100 mg along with 3 mg of melatonin, two to three hours before bedtime each day. This makes the level of sleep much deeper, and seems (to me) to make the pain more tolerable upon waking, giving me some time to administer either Oxygen, or (now perhaps) Lidocaine. I also take an Andro-stack which raises my (in theory) level of testosterone (for us old male farts – smile). Some studies relate reduced numbers of HAs during a cluster, as well as reduced intensity of attacks when administered testosterone injections. I haven’t tried the injections, only the stuff from the health-store. And, while you may laugh, I smoke cigarettes and drink coffee during the peak of the season. When I do this, I am HA free until the nighttime, when I use Oxy and/or Lidocaine; this has allowed me to be productive during the season. I do, however, have significant difficulty giving-up the smokes and coffee after the season ends. By the way, I’ve been doing the water thing for a while, and I believe this also helps.
So, now you know the REST of the story. Anything here ring true with anyone out there? Especially wanting to hear of your experiences with Lidocaine. The topical anesthetic approach is relatively new to me.
I’ll happily pass along any information, or answer any questions. I prefer to converse via email. See you soon,
Bob - Pensacola, FL
Randy is my son. He is 34 years old (Cerebral Palsey) and has suffered from headaches all of his life. I saw Discovery Health Channel tonight and a gentleman (Simon Bowers?) said there was a site that dealt with cluster headaches and new research. I'm hoping I will be able to get information to help better my son's life.
Thanks
I am 41, female and have been suffering from these headaches since I was 26, shortly after the birth of my second child. Like many I have been to many doctors before finding out exactly what I had.
It has been slightly over a year since my last attack and I am keeping my fingers crossed. This is the longest break so far. When I do have them I use oxygen, drink plenty of water as soon as I realise
that they have started again and now have found "Endone". This is a great drug for me. I only take it when all else fails and I have had it for more that an hour. It takes less than half and hour for
it to ease and then completely gone by 3/4hr. I have no side effects, able to do everything with a clear head and my witts about me. It works for me, hope that it will work for others.
To all fellow CPH sufferers:
I don’t know if anyone is still out there (I just found the messages you posted back in 1998), but I’m posting this message any way, in case you are, because I’d like to share my story, and I hope some doctors will read it too. I’d be happy to hear from any of you. (Note: this is at least 6 pages long when the font is 10 point Palatino and the margins are 1.25 inches left and right 1.00 inches top and bottom—over 4,200 words—so I don’t know if it will all come through. Please feel free to email me if you can’t read it all but would like to; I will send it to you as an attachment to an email.) In addition, if you interested in seeing a list of all the other chronic health problems I’m now struggling with to see whether you also have some of them, I’d be glad to send a list. Maybe by joining together and sharing as much about ourselves as possible we can find something other than the headaches that we all have in common, something that might help doctors determine the cause of these headaches.
My headaches began when I was 19. I’m 38 now and still have them, and I am amazed I haven’t killed myself yet. For the time being, indomethacin is helping me, but I suffered for many years before anyone even offered me this drug, and when I first tried it, I didn’t stay on it for long (because I was still having the headaches and I had severe itching that I believed was a side effect because it stopped when I stopped the drug). Now, years later, I’m taking it again and it seems to be helping. I take it only when I have a headache, rather than all the time to prevent them, because I worry about the risk of developing a tolerance to its effect (i.e., that my body will become so used to the drug that it won’t work against the headache anymore) and about the risks of using such a toxic substance long-term (i.e., that if I take more of it than I absolutely need this early in my life, I will hasten the development of damage to my system that will prevent me from taking it in the future). This of course means that I do still have to suffer the headaches until the drug takes effect, but—because I need this drug to survive—that is better than increasing the risk of not being able to take it in the future. If for any reason I cannot take indomethacin in the future (and I worry that as I get older this possibility will become more likely), I will have to kill myself.
But let me back up to describe my headaches. I was quite amused to find that others are using the term "ice-pick" to describe what it feels like because that is exactly how I described the pain to every doctor I saw between 1981 and sometime in the mid 1990s when I was finally offered indomethacin, but none of the doctors I saw before the one who gave me indomethacin seemed to have heard of any such headache pain (or they acted like I was exaggerating or imagining it). It feels like someone is repeatedly stabbing one spot on my scalp with an ice pick as hard as they possibly can. It also feels like someone is taking a pair of needle-nose pliers and jamming it into that spot, clamping down and twisting with all of their might. It also feels like some sort of very intense electrical shock or current is running a very short distance over and over again in the nerves in my scalp in this spot. It is stabbing, pinching, and incredibly sharp. Each stab lasts only a fraction of a second, is followed by no pain for only a fraction of a second, and then is repeated again and again.
The series of stabs can go on for minutes or for hours; it can last for a few minutes, be interrupted by a few minutes of no pain, and then resume for a few minutes, and go on like that for hours on end, or it can be one series of stabs that stops for no apparent reason after only 15 minutes and then resumes hours later in the day. They can come every day for months, for a month, or for only a week. After having them every day for months, I can go for months experiencing only a single stab (rather than a series) every few days, or the series of stabs can come back again within a week. There is no rhyme or reason, no pattern; there are no triggers; their occurrence is totally random. They have occasionally woken me from deep sleep, but more often they occur when I’m awake.
As one of you mentioned in one of the messages I read, the pain "is either there or it isn’t"; the intensity of the pain does not vary from mild to moderate or severe, and it doesn’t build gradually or taper off— it is on-and-off bursts of excruciating torture. However, over the years, the intensity of the stabs has ranged within the excruciating range (from "kill me now, God, please!" to "Oh God, not today, I still have so much to do and was so looking forward to having some fun today—I can’t XXXXing believe this is happening again; how long will it last this time?"). Once when I was driving on a crowded freeway I nearly killed myself and took a number of people along with me when one of these headaches hit with such intensity that it the pain literally knocked the breath out of me (as though I’d been kicked in the gut by a mule—I couldn’t inhale for a while, and since I was on the freeway it made me panic, which made it worse because that made my eyes overflow with tears, so then I couldn’t see or breathe).
Sometimes I hit myself in the head with hard objects to counteract the pain (even though the area affected is already tender). Another thing I do is to cause pain elsewhere in an effort to distract my nerves from the pain in my head—mainly by digging my fingernails into the stiff part of my ear as hard as I can. Once when I was stuck in a meeting that I couldn’t just get up and leave, I was digging my fingernails into my ear as usual, and the woman next to me happened to glance over at me. She jumped a bit, aghast that blood was pouring down the side of my neck (which I hadn’t even felt): I had dug my nails in a little too deeply.
When people witnessed my behavior during a prolonged or particularly intense series of stabs they treated me like I was insane. If I talked to anybody about my headaches, people treated me as though I were some kind of wimp who couldn’t handle a thing as minor as a headache, which was infuriating because over the course of my life I’ve had all the "normal" types of headaches (tension, hangover, caffeine-withdrawal, and even classic migraines with visual disturbances that were intense enough to keep me in bed the rest of the day sick to my stomach an unable to have the lights on), and none of them comes close to what you have to endure when you have CPH (yet I’ve known many people who can’t even handle a caffeine-withdrawal headache without complaining—it hurts to have your pain dismissed as an exaggeration by people who just have no idea what you are experiencing). Even the classic migraines are easier to take—because there are all kinds of things you can do to relieve and lessen them and just get through them. Whereas even simple things like rest, massage, heat and cold can reduce the severity of the other headaches, and all of those types of headaches can be prevented, nothing prevents or decreases CPH (except indomethacin, a toxic drug that I doubt we’ll still be able to take when we are 85 years old—I dread the thought of living past the point at which I can still take that drug because I know it will be nothing but misery).
Part of what makes CPH so hard to bear is that it is chronic—it happens so frequently (these are not just once-a-month headaches)—and it we have to live with it forever (or commit suicide). Before I go on though (this is a long letter), I want to return to the topic of the severity of the headaches. Although I would never call this type of pain anything less than severe (because the jabs are extremely sharp—imagine the moment you get an ice pick jabbed into you: it is an acute, sharp, intense sensation, even though it lasts only a second, the problem with these headaches is that you keep getting stabbed repeatedly), I should make it clear that sometimes the flashes are almost a shadow of what they usually are—they are still intensely sharp, but are not quite as strong. When they are like this, you can, if you are in a good place emotionally and physically, focus on the pain and "accept" it in a type of meditation (this of course means though that you can’t really be focusing on doing anything else at the same time)—but that is the ONLY time you can "manage" it that way, and even then it’s hard to do because the jabs are so erratic—you think they’ve stopped and you go on with your activities and then a few minutes later, wham, they’re back. The great majority of the time the pain is so incredibly intense there is just no way to "ride it out" without suffering other physical and emotional consequences. It is utterly exhausting and eventually depressing.
I spent years going from doctor to doctor, throwing money and time away not only on them but also on chiropractors and acupuncture and anything under the sun that I thought might bring me relief. I tried every drug any doctor gave me, from beta-blockers to antidepressants, and every NSAID ever made. Once a headache hit me exactly at the moment that a new doctor I had not been to before walked in to examine me. A minute later when it subsided enough for me to talk to him/look him in the face, he—without spending three minutes with me and having no prior knowledge of me—was prescribing me lithium! I walked out of there furious. The years of excruciating pain (which drains you of all energy and takes away any joy in life) together with the other physical problems I have developed over the years and the soul-sapping anger I felt about having wasted energy trying to find relief only to be told by the doctors I paying and waiting hours to see that my physical problems were simply "in my head" and that counseling (which I could not afford anyway) would help or that my problem was "too much stress" (and that I should "reduce the stress in my life") left me depressed at times.
I’m sure others of you who have suffered this know that subsequently the doctors claim then that it’s your depression (or stress) that is causing all your other problems. They refuse to acknowledge that our frustration at their inability to help us is a factor in our emotional health. According to them, all of our frustration and physical troubles are the result of our depression or stress (the exact opposite of the truth). In fact, they actually think they ARE helping us by giving us the benefit of their learned opinion on the matter. And from what I’ve gathered over the years from most of the doctors I’ve been to, their knowledge amounts to the following: if they can’t fix it with an antibiotic or aspirin or an edict to "reduce stress, eat right and exercise" or they can’t find a cause when they perform certain tests, then you are some sort of hypochondriac exaggerating your symptoms. If only a couple of thousand doctors would start getting this headache so that the medical community would have a reason to focus on finding a safe and effective treatment for it (and believe it is ruining people’s health and subsequently their lives). I’d also like to know just HOW they expect normal people (who don’t make hundreds of dollars an hour) to "reduce stress." Are we supposed to sell our children, quit our jobs, and have a slave shop, cook, and clean for us so we can go for long walks on the beach? Where are we going to find a genie in the bottle to fit the bill? Besides, you all know that THAT would NOT stop our headaches (even when you are enjoying a lovely vacation at the beach, the headache can attack and ruin it). Life IS stress, and I find it disrespectful when a doctor basically blames stress for my pain (which they are completely wrong about)—and ultimately me for my pain (their edict to reduce stress implies that it is something I am doing wrong that makes me have too much stress in the first place—and they don’t even take into account that I already do all the things recommended to keep my overall stress levels low, and going to doctors who don’t help becomes one of your biggest stresses). It’s just one more lame excuse they offer to cover up the fact that they have no idea why we have this pain and they have no idea what to do about it. They may even believe their stupid proclamations, which as far as I’m concerned is sheer arrogance—they’d rather delude themselves that stress (or a mental/emotional disorder/defect on our part) causes these headaches than believe that we really are suffering this pain (and other physical problems) and that they simply don’t know why.
Whether or not I had problems with depression that were separate and apart from my headaches, I KNOW the pain is what was causing the both the stress and the depression—not vice versa as some doctors tried to tell me. I have had these headaches for 19 years now and they come no matter what is going on in your life, whether it’s good times or bad, whether it’s high stress or low, whether you are drinking and smoking or not, whether you are exercising or not, and whether you are depressed for other reasons or not—none of that matters: these headaches just come whenever they please, and when they do the pain is life-altering, when they stick around for months on end, stress and depression are only some of the bad effects they have on your whole life. I have no friends and am not at all close with my family—I simply do not have the energy that it takes to develop and maintain any relationship outside my marriage (and I’m barely able to do that). In addition to the headaches, I have, over the years, developed many other chronic health problems, most of which are as yet unexplained.
I drank heavily even while I was putting myself through college, working (and paying almost all my wages to daycare; this was before the government gave credits), and raising my son by myself (I only remarried recently). I also chain smoked; smoking was the only way my system could find momentary calmness. I was not what I consider a good mother back then; I was too exhausted, stressed, and depressed, and I yelled when I shouldn’t have. The thought of having to live with the headaches was unbearable; I felt trapped and utterly miserable.
Eventually, I found a doctor who specialized in headaches. He diagnosed mine as chronic paroxysmal hemicrania and prescribed me indomethacin. Unfortunately, though, I had horrible intense itchiness as a side effect (or so it seemed) and stopped taking it (also, I don’t recall that it stopped the headaches back then either). Then he had me try a number of other drugs, but I’m sure as you all know, it’s hard to tell whether a new drug is working or if the headaches are subsiding —which they do for a little while, only to return with a vengeance not long afterwards. I tried drug after drug, each time wondering if the drug was working or if the headaches were in one of their natural temporary remissions. With all of the drugs, the headache would eventually come back. At one point after I hadn’t seen that headache doctor for years, my life was so messed up that I was seeing a psychiatrist who, within a few months, had me taking 18 pills a day. Here are some of what I was taking each day:
o lorazepam (took 2 when I got home each evening) as needed up to 6 pills/day
o Paxil 20 mg 2 at bedtime 40 mg total (this one really seemed to help me feel better about everything in general, but I felt best on the combination of Paxil and neurontin)
o neurontin 300 mg two 3x/day, 1,800 total
o trazadone 1 pill at bedtime (this was added later; I think to help me stay asleep)
o hydroxyine hcl 10mg (for nervous itch as needed; seemed to work only when taking with an extra lorazepam at the same time)
o hyoscyamine S04 ext-rel 0.375 (for severe intestinal cramping—another problem I have—as needed; I hardly ever used it: it didn’t seem to do anything most of the time anyway, and if I recall correctly, this one might have been one that left me really groggy the next day)
Don’t get me wrong, this psychiatrist was wonderful, and the drugs radically improved my life (some members of my family liked me even less while I was on them, but I felt so well once I was on both Paxil and neurontin that I wrote the doctor to tell him I felt great. I even had enough energy to start exercising regularly, and my fiancée, who had been with me for seven years, had never heard me say that I felt great before then), but my problems were still physical. He said I had nothing wrong with me mentally/emotionally that would cause me to manifest the physical problems that I’ve been plagued by all these years and that I just had to keep trying to find a physician who could help me. I saw him regularly for more than a year, but I didn’t want to keep paying just to have someone to talk to about how I wasn’t finding any help from physicians and didn’t want to take drugs to cope anymore. Eventually, I got so sick of going from one physician to the next for my physical problems that I just gave up and decide to go "doctor-free" and "drug-free," but of course my physical problems did not go away. Oh, and like one of you who also was taking neurontin noticed, those drugs had side effects. I went from 125 pounds to 150 pounds while on them; all of which must have been water weight because it came off within a couple of weeks when I stopped all the medicines cold turkey (talk about experiences—you’re supposed to taper off those medicines, now I know why).
Within a few months my family convinced me to go to one more doctor, and though I’m seeing her now with the hope that she will help me find some relief from some of my other chronic physical problems (I’m still in the process of undergoing tests and trying some things with her, but haven’t seen any major changes yet), my headaches haven’t disappeared and this doctor doesn’t prescribe drugs like indomethacin. So I had to go back to the one headache doctor (my savior) just to get the prescription for indomethacin.
I want to backtrack a second and tell you that the best thing about having been on all those psychiatric drugs was that while on them I couldn’t drink alcohol, yet they calmed me down enough to manage with out drinking. They took the edge of off life that would drive me to drink before. I had quit smoking (again with the help of a drug—Zyban, which nearly killed me, but that’s another long story) just a year before I saw this psychiatrist, so after I had been seeing him for a year, I had been free of cigarettes for more than two years and free of alcohol for a year. I would not have been able to quit drinking without the cushion of a year’s worth of drugs that kept me calm. I shared that just in case any of you struggle with drinking or smoking because of years of trying to "self-medicate" or distract yourself from the stress of these headaches—get a psychiatrist to medicate you for a year and you will be able to quit them forever. It won’t cure your headaches, but you’ll have those other monkeys off your back and then you can get indomethacin and then maybe we can crusade for more research into these headaches, to find both their cause and better long-term treatments for them. HA! I wish! Like the medical community would listen to anything other than billions of dollars! That’s the problem with having a rare subset of a rare form of anything—they’re aren’t enough of us to constitute an attractive market for pharmaceutical companies, so nobody is interested in even looking for better treatments. I always wonder though if there really are many more people suffering this headache who just haven’t been recognized by the medical community because most doctors dismiss their pain as somehow imaginary, exaggerated, or stress-based. How many others have been misdiagnosed as manic-depressive and put on lithium? How many others have been labeled hypochondriacs and ignored? How many have drunk themselves into living in the streets? How many have just killed themselves? All because doctors are undereducated and quick to blame the patient’s mental condition for anything they do not understand.
I want to let you know one other thing about my headaches: for most of the many years that I have had these headaches, they would often be preceded by an earache in the ear on the same side of my head that I get the headaches, and sometimes I’d lose the ability to hear in that ear for a short time while I had the headache. Sometimes the earache would be there for a few days before a really bad long series of the headache would start, but it took me a while to figure out the connection: I went to the clinic a number of times thinking I had a bad ear infection, but they’d find nothing; then a day later the headache would start. Eventually, I realized that the earaches were only a warning that I was about to suffer with the headache for a few weeks or months, and I stopped going to the clinic when I had earaches. (That of course led to my having a very bad infection of the inner and middle ear once—because I figured it was just another warning earache and I didn’t go to the clinic until it was so bad that even my cheek bone was infected.) I haven’t had the warning earache in the last few years though. Do any of you also get them? When I did the internet search on CPH that brought me to the messages you posted, I also saw a link to an article that I was interested in reading, but the link did not work. It was "CPH presenting with otalgia with a sensation of external acoustic meatus obstruction." Have any of you read that?
If any of you has read this far, thank you for listening. If you interested in seeing a list of all the other chronic health problems I’m struggling with to see whether you also have some of them, I’d be glad to send a list. Maybe by joining together and sharing as much about ourselves as possible we can find something other than the headaches that we all have in common, something that might help doctors determine the cause of these headaches. I noted that one of you mentioned you are a gymnast; I loved gymnastics as a child, but if any sort of damage to our spines from something that happened early on has anything to do with our headaches, I’d be more inclined to think it was the following (let me know if any of you were as stupid, trusting, and naïve as I was as a young child and also suffered this): when I was probably 8 years old or so (and very strong and flexible and healthy), my sister’s friend held my right arm firmly in both of her hands then told me to close my eyes and totally relax my whole body; I obeyed (and was very good at relaxing myself so I really was relaxed); then she yanked my arm down as hard as she could with all of her body weight. The resulting pain lasted days, and nobody did anything for it. If anyone did that too me today, I’d probably land up in the hospital. Chronic pain in my upper right back is one of the problems I have today. My neck and upper back have attacked me (making it impossible to turn my head at all and sometimes impossible to move anything above my waist making breathing painful) on a number of occasions even though my workstation is ergonomically correct (I had a chiropractor measure everything).
I hope you all are headache-free, at least for today.
Tracey Chen
Hi all
I am the wife of a CH sufferer and I see my husband in so much pain, feeling helpless, and unable to comfort him in anyway shape or form is so frustrating!! Mind you, I know its nothing to what a sufferer goes through.
My thoughts are with you all and your families.
Take care, Dawn and Graham
55 year old with clusters since age 7. Willing to share experiences and insights.
Hey Folks! You are scaring me. I am a 55 y.o. male and this is my first cluster headache experiance...I think...I have had a few extended " Sick Headaches " in the past...never more than a day or 2 and not even 1 a year...but then this...the descriptions folks hve posted are so much like my own...like it is moving through your head...you feel like you are going to die...does anyone get the strange feeling like you have just used a strong nose spray and the spaces ...read sinuses..around your eye and nose are oppening up...I feel and even hear an audible crackle sometimes Like I say this is all new to me ...about 5 weeks ago my wife and some friends commented that I looked a little funny, I tahnked them for ther compliment but they went on to say something looked "off" my left eyelid drooped and my left pupil was small...it would not dialate...I also did not sweat on that side of my face..saw my eye doctor and he Dx'd Horner's Syndrome...not a disease itself just a group of symptoms...a few days later I developed a severe left sided headache...the headaches came and went nothing seemed to help A neuro work up began MRI's CT scan loads of blood tests and a spinal tap...after the spinal tap I developed a post spinal tap headache and had to lie flat and take tylox for the pain...that seemed to fire up the other headaches ..I couldn't eat or sleep or think for 8 days I was given Imitrex at that point and it seems to have helped I took the first dose and in about 2 hours I had enough relief to fall asleep...I have ahd to use it twice since...it worked but seemed to be slower...I still have a constant dull headache and pain in the muscles of my neck and the back of my skull...there is a constant clear mucoid drainage down the back of my throat.....I just hope and pray that I don't really have Clusters or that I have had this one and last experiance with them...I salute all of you out there who continue to fight them because I must honestly say...and understand me I am a Christian...I could not live like that with this horrible pain just bringing all LIFE to a screaming halt...but it doesn't help to scream...I would have to find some way to end the pain...Again let me say how much I admire the courage of those who deal with this disease and even if I never have another I will find some way to help those who suffer from them joe
Hi, My name is Dana. I started getting Cluster or CPH headaches when I was around 12. I am now 28. I suffered a great deal for a couple of years. I went through several neurologists searching for what ailed me and for something to alleviate the pain. Finally, I found indocine/indomethacine!! I have now been taking it for atleast 10 years. I am afraid of illness that may come about from prolonged use. I get a blood test every 1 1/2 - but that is all. If anyone has been on it as long or has an experience to share or an alternative that has worked as well as Indomethacin - I would be very interested in hearing from you. Thanks alot! Dana (dlp99@prodigy.net)
Hi,
I am thankful for this site. I cried reading what others have said....I am so sorry that so many are suffering...it does help knowing there is somewhere I can go for support and information! Thanks
Hey people I’m back (Dean). I’m curious, does anybody know anything about Botox? (not sure of the spelling). I have a very close friend of the family that works in Neurology and she was telling me about Botox injections. I don’t want to say too much about what her and I talked about because I don’t remember all the details, nor have I tried the treatments. When I know more I will be happy to let all of you know the details.
Talk to ya soon. Late
all are not the same. mine started after auto accident in 78first noticed these short, intense headaches that would go away drinking coffee, then noticed they would wake me from sleep, then it was like a rocket ride, and I have the michigan headache and neuro inst. right in my own backyard, but they bounced me from one drug to another, finally a calcium channel blocker that worked for a while, 8mos,thought I was cured, then the monster returned, after burning out on prednisone-ergot based meds, I elected for a surgical procedure called radio frequency lesion, they went intra craniallly and attacked the trigeminal nerve on the right side of my face,attacking v1&v2 of the nerve branch. this left the right side of my face totally numb from the forehead and temple down to where I don't have feeling in my teeth and half of my tongue,can't feel my right eye blink, nor does it make tears anymore, you're probably saying is this guy crazy? did it help the pain? yes, do I still get headaches, yes, but they are more bearable, but just as frequent. folks, these headaches come in at least three patterns-seasonal, next is chronic, without the breaks that seasonal people get, thenthere was my condition which was worse than chronic, for those that are wondering what are calcium channel blockes? basically a drug that treats the flow of the blood through us. The one tat worked for me was verapimal-80mgx3 daily, can go as high as 120mgx3 daily, there are dfferent brands and different chemical makeups of this med.for you seasonal folks, this might help, there is mor to write, fee free to e-mail...Dennis
I'm not really new to this site it's just been two years since I've had any headaches. I don't like to think or talk about them after I go through my cycle and neither do my family. Because it's a curse and can bring on the cycle. That's probably silly!! I'll tell you a little about my self. I'm Famale, 42 years old and have been having cluster since I was in my pre-teens. MY husband,kids,and freinds are very supportive during this time. I even like the Doctor. Although it took me a number of years to fine him. I'm currently taking Methylprednisolone. After not sleepping for two week I called my Doctor and told him I would try this med. I had one headache last night. And slept the rest of the night. One of the side effects is not being able to sleep. So here I am not having a cluster but not able to sleep either. Untill I can get a hold of my Doctor for a sleeping pill.If I sound like am rattling on I am and its the drugs because I'm not usally this dingy. so I will say good bye for now.
After reading the opening letters I was dumbfounded to find out that there are other people going through the same unbelievable pain that I am going through. It was somewhat of a relief to find out that I was not alone. I was starting to think I was going crazy!!
Thank you for this web site and the opportunity to contribute.
Don Quartarone
43 years old and have been suffering clusters since 19. It is with great relief that I found this website and can share my "secret" with people who understand this intense pain. I just started a new cyscle after a 4 year absence. It is such an unusual affliction and I can't believe how quickly the day to day fear of getting a cluster has come back. I am trying prednisone and hoping for results. I don't want to have those 3-4 hour boomers. My wife is great and gives me all the support I could ever ask for. Thanks you clusterheadaches.com for having this website to talk, vent, scream if necessary but mostly join in with others who know where I am coming from. Maybe getting it out in the open can help. I wish all clusterheads goodwill, a calm spirit and the power to be tough to survive. Peace...
my neurologist said "chronic cluster headaches" 2 weeks ago.I have been told since 1994 they were tension/sinus/migrain/headachy and PMS. I have been reading about this cluster headache and for a long time I thought I was the only one who had "the headache". My boss said that I have missed to much work, that a headache should not keep me from my job. After all she has headaches too and makes it to work. I feel like I have accomplished something great when I can get through a days work and get home before the fatigue and pain starts. I miss my life, my children, my husband. I miss bright sunny days and long walks. after all you never know when it may strike. I have not spoken of these things to anyone,they would worry.my doctor has put me on a daily medication,verapamil. I am also given amerge and anprelan to take when the headache starts. I took the medication last friday (amerge). It was gone! every once in a while a streak of pain would slice through my head and into my eye and then it was gone. I am still afraid to feel confidant that the drugs will always work. I am still afraid to be away from home for too long.
time will tell
Debbie
I'm writing on behalf of Doreen Helfrich, and have been researching the net on her behalf for a few weeks now. She has suffered from cluster headaches for the past 7 years. Four years after a near-fatal car accident, she began having cluster headaches. She averages about one every 3 days now, and previously had them about once every 7-10 days. They vary in length, lasting up to 12 hours or more. Recently, she has reduced the time to 6 or 7, with head massages and pressure point applications at about the six-hour mark. She has been through the gamut of meds., and her regimen will be posted soon (what works best for her, a combination of drugs, etc.). Thanks for everyone's help. (From a supporter, and empathizer.)
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