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Below are the guestbook entries from December 2000. 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 Have suffered from ch for as long as i remember, not knowing what they were until a few years ago. Im 43 now and the only thing that works is imitrex injections, but i am having a hard time getting the insurance co. to pay for what i need. They only want to pay for six injections a month. My CH last for about 50 days every day, so i suffer alot. I wish some of these Doctors and Insurance people could expereince a CH attack just one time. Imsure they would fell diferent about giving medication to ClusterHeads. We all need to unite and let the public know what were all going through. Is there someone out there with a plan.TONY <nutthouzz@buckeyeinet.com> oregon, oh USA Sunday, December 31, 2000 at 17:28:27 (EST)
I would like to talk to lc bob. do you want play with the powder with me? I know you know what I mean.I'll see tou in a month.
Hello, My name is Rich. I am 30 yrs old, single and an artsist. I love life and all its mysteries except for one; I have never known for sure what kind of headaches I endure. The heroes at this site desribe the same pain. As I share this, my head throbs as I write and the pain has been with me for two and a half weeks non stop. I have sketched out my pain by drawing skulls with steel rods breaking through the bone, clamps crushing down on a skull breaking the sides in and even a claw hammer ripping my eye out, removing the bone. I understand all those who suffer. At this moment, it is like a demon smashing the base of my neck and the top of my skull with strong fingers. I have even thought of Darth Vader using the Force, and every time he makes a fist, the pain reaches it limits and I want to scream.
My freinds, we go to work with our pain and endure the irritable employees who say they just don't feel like working. They have no clue of how you feel. We try to endure so our families won't pitty us, but we fail because we can't always help ourselves. We try anyting to stop the invisible drill whirring into our brains. From banging our heads with a hammer to wedging our bodies against the wall and furniture to drive the pain out. Uncle fester had the right idea by putting a wood clamp on his head and twisting the handles until a grotesque 'pop' sound occurs. I even try listening to heavy metal music such as Iron Maiden with headphones to soothe the head. Sometimes it works! Symphonic music with strong base and a soft sad sound also helps. We all have different ways of dealing with madness. I choose to put my pain into a talent, drawing. I don't just draw skulls, infact I rarely share those drawings. I have drawn many things including family portraits with fine detail as I focus on each line stroke. The moment I stop consentrating on the art, my headache srceams at me and twists my brain as if it were caught in a whirl wind. I could write a many pages and probably wrote too much now. I wish for those who read this to be a hero to themselves and find something to focus on to beat your demon, even if it is for a short time. A freind thriving in a prison of pain.
Rich Wood.
I would like some help! Ask me about what.
I have been geeting really bad headaches almost every day since I was 13 my mother had migraines since she was a child and had to stay in bed they where so bad. I have them where I have had to go to the emergency room and have had CAT Scans done but no cancer or blood clots where found please write back so I cxan find out how to stop the headaches...!
Thanx,
SuS
I've been a cluster headache sufferer for about 12 years. I'm currently in the beginning stages of a bout, so I have this to look forward to for another two or so weeks. So far this has been the worse yet. My hat goes off to all who have dealt with this infliction longer than I.
Hi, I'm on my 3 round of clusters (I think) I believe it's more but my doctor never figured it out years ago. I first found this sight about 9months ago when I diegonised myself. But at that time I never thought I'd have them again.(I guess I was wrong)I would like to visit the room but don't really know how to find it will someone send me the link Please..
I'm a woman and I have read that cluster headache is more common in men, but i have been suffering it since many years. Please, excuse my English, I'm cuban and I live in Venezuela, but it is the most great page in the web that I've evr found. That will be my prefer page!!
Experienced an attack today at work. I work as a correctional officer and stress is definitely present but then again so are so many other things. It is most difficult trying to explain to people about the blurred vision. Is there information on the amount of people who actually experience this symtom.
I was a smoker and used to get a cluster spell every 8-10 months over the past 10 years. I quit smoking and only got 1 mild cluster that year. I started smoking again and the headaches returned. I quit again almost 2 years ago (and still haven't smoked) and hoped that the clusters were gone for good, but they came back 2 weeks ago. I was disappionted to say the least but duration used to be about 4-6 weeks but now they seem to be subsiding now. I have read many of these messages and notice many people looking for preventative medication, I can only speak for myself, but smoking seemed to help me quite a bit. I don"t know how many sufferers smoke, but quitting did alot for me. I also steer away from booze during my spell with the headaches since it generally triggers the first one. Once the spell is over I can have a drink without worry until the next time.
My father suffered for 15 years with Clusters before his
death (Car accident) in '91. When I saw this website, I
almost cried remembering the pain and how it affected every
aspect of our family's life. The only thing that ever helped
him at all was to be sedated around the clock for about a
week (nurses in the home w/morphine) and that seemed to break
the cycle. His doctors would only do this after the cycle
had reached at least one headache a day. My brothers and I
do fear having them. Best of luck to you and I continue to
pray for a breakthrough in meds.
Hi I have suffered for 20 years with cluster headaches, I have tried everything available and nothing works. in 1997 I had accupuncture and did not get any clusters for 3 years almost to the day.2 weeks ago they returned is it stress related? i dont know I have been under severe stress my husband of 27 years passed away 4 weeks ago and my clusters are horrible. 1 week ago I had accupuncture again went 4 days no cluster now back again for the past 4 nights. mine always always hit between midnight-3am sometimes just want to die! any suggestions im having accupuncture tomorrow maybe just maybe i will get rid of these things .no drugs help me im desperate i cant go to work with no sleep!
I have recently received medication that is helping me after years of suffering and no diagnosis even though I was seeing a neurologist.
I just found out what these unbearable headaches were! I've been suffering for 5 years now.
What bothers me is that the only medication that works so far is Maxalt, at 12$ a pill!
Does anyone know about anything cheapr?
I began my latest cycle 12/22/2000. My 2nd one in less than two years. Wow this hurts. 20 years and counting. Best.
Mike
Thank you for having this site. I'm new to this. My headaches are becoming too controling any more and have forced to see a dr even though we're both out of work. This site and the samples (Imitrex & Maxalt) from my dr. have been a big help. Knowing I'm not alone, even with the wonderful support of my husband, is a surprise. Thank you again. Ann
I'm male, aged 45 years, and have been a cluster head for 24 years. I'm currently in the third week of a nine week bout of headaches. I'm hopeful that someone, somewhere will find a cure for this curse.
I have suffered with headaches that my doctor couldn't put a name to for about 5 years. My headaches were so routine I couldn't imagine that there wasn't an obvious medical explanation. Just recently I have realized that my headaches are cluster headaches. The description of the pain fits my headaches to a tee. My headaches attack about once a month(not related to my cycle)and last 3 days. They are so predictable but that doesn't help the pain. My doctor has not given me anything that really helps. I never considered my headache gone anytime during that 3 day period because I new it was just hiding. I always describe my headache as one headache that last for three days. The pain in 90 percent of the time in and behind my right eye. It then spreads to my temple area where it feels like someone is sticking a screwdriver and twisting. The depression during this time is very overwhelming also. I would appreciate any help to relieve this pain. I have heard recently that they are trying to attribute these headaches to Sleep apnea. I am going to mention this to my doctor. I know I snore and It's very possible I may have a case of this. I would do anything to go through 2 months without one of these headaches. Thank you for letting me get this off my chest.
I think I'm at the end of a cycle because the CHs are coming only once a day, two to three days apart, and the pain is around kip levels 6, 7, and 8. This month, December 2000, is the first time I've had my CHs since about six or seven years ago.
In the 1973 I started getting headaches regularly. They must have been migraines because my whole head hurt and I was very sensitive to light and only wanted to be alone, lying down in a dark room with a bandana tight tied around my head. They usually came at the end of the week and always meant a trip to the ER for Demerol. I thought they were psychological because when high school ended, my headaches went away.
About four years later at the age of 21 or 22 I started getting headaches again, but this time they were always on the right side. They came on randomly, usually in the winter, but sometimes in early spring and mid-summer. The pain, oh my God, the pain was so severe, excruciating at best. My right eye would redden and tear like an endless waterfall. I went to a doctor in Houston, where I was living at the time. After I described the symptoms, the doctor immediately diagnosed CH. I wish I could remember what he prescribed. It was a little red capsule. The first time I ate one pill; the pain was gone as fast as it came.
Many people in Houston suffer from sinus allergies. Because my right sinus cavity always was congested during the headaches, I believed I had sinus-related problems, and the doctor who diagnosed CH was suffering from being cluster f#cked.
The interesting thing about the doctor, who diagnosed CH, is that he said that CHs were sometimes due to Dentists' mis-aims during injecting the nerves in the gums. Remember, this was during the mid- to late-seventies.
After reading many pages on this site, it is not necessary to go into details about what it is like during an attack. I, too, am visited by the "phantom" and know what the next 30-minutes or four hours will be like. Funny, I never thought of what I do during a bout as a dance. I usually dance at levels 9 and 10 on the "kip" scale.
I don't dance, however, until after using all of the hot water the shower can offer. The hot shower helps drain the right nasal passage. Man, the mucous that comes out is so white and thick; it could be used as paste for a whole kindergarten class for the whole year (I cannot make the left side do this). Many times the pain subsides, but not always.
I have sat in my car with the air conditioner on high blowing directly into my nose. This sometimes works, not always. I've used nasal sprays, which helps, sometimes. When the phantom visits, I usually eat 8 to 16 Advil tablets at one time, hoping to circumvent the inevitable pain. I can't tell you how many times I've reached for the hammer!
The doctor in Houston that diagnosed CH also had asked what he thought was a critical question: "Do you smoke cigarettes?" In the 70s and 80s I was a one-pack per day smoker. In the early 90s I smoked less but still got CHs. In 95 I quit and never had a CH again. In July of 2000 I started smoking again, and this month they returned. I quite last week, and the phantom had not visited. Two days ago I had one glass of white wine, and today I reached for a cigarette, the phantom visited today. I took the dog for a walk at the onset and it's about 35-degrees outside. It scared the phantom away and the congested right nasal cavity cleared. Tonight I will only sleep on my left side.
In the past 20 years no one has ever understood the excruciating pain I describe, tonight I find you guys and it makes me feel better knowing some of you will be dancing with me tonight, maybe.
My sincerest thank you and warmest regards,
another clusterhead
CH & migraine sufferer for many years. I have tried everything under the sun. The only help is a Stadol inhalant, but you know have doc are. I am having surgery to clip the nerves in my head because I am now at the end of my rope. Wishes each of you a pain free day!
I ame a 33 year old male suffering from c.h. I am just comming out of a pain period.
I have suffered with clusters for over 30 years. Get them for about 4 weeks once a year. The latest drug I have used is Imitrex. It worked great for about a week. Now has no effect. Going through one hell of a bout now. Should be over them in two weeks. I will just suffer through until they are over. I have used oxygen with some success but these lately come on to fast.
Wish all a happy New Year.
Ray
Hi all, I am a new visitor to this site. I think it is wonderful it is finally here! For a light description on the pain: it is like someone takes a 3/4 inch drill bit, and starts at my left upper jaw joint, and then bores up into my left upper sinus cavity, never comes out, it just turns very slowly, and continuously. I had been headache free for 2 years now, but now they are back!! Every night for the last 2 weeks. I hate to go to sleep, because I know what it will be like when I awake by the things, I never know how long they will last, or the severity or the pain. Only the people who have them only know, and can understand.
One word of caution to new suffers, I try to stay away from the detergent isle in the grocercy store, it seems I can get a CH instantly from the odors there, also deisel fuel, just to name a few. If any one else has the same symtoms I would like to hear it! Imatrex is like taking candy for me, hardly ever works for me.
Hello everyone; Just found this web site. Ive suffered from c.h. for 18 years. Ive tried just about every anti-depressant steriod,and just about every other drug.Until 2 years ago i was in a bad cluster hell. I admitted myself into university of iowa hospital,a hospital Id been to many many times.My neurologist experimented with a drug called solu-medrol.Since 5-15-98 Ive only had a few times where Ive had light shadows. I have many other techniques that all work hand in hand in defeating the cluster god. If interest e-mail. Ill be on line.
xmas clusterheads
It's about time! It is nice to finally know there are many more like me. For so long I felt so alone and it seemed as though nobody understood what I went through. Now I have a place to go, Thanks.
I cant believe there is a site for this. I didnt think anyone but my neurologist would understand my pain. This is a great discovery.
I have been suffering from CH for 16 Years now.I am 49.
The Demon puts on its show every 4 years and it lasts 2 to 3 weeks,just like the Olympic Games.
I am now on my 10th consecutive day of one episode every 12 hours.In about an hour it will start.What is most frustating
is that I never know how long it will last.This year I am hitting records(like in the Olympic Games) in the pain scale,its worse then ever.I started taking Maxalt.Sometimes it kills the demon in 7 minutes,others it takes 70.
Yesterday as I was returning home,the Demon attacked while I was on the Highway.It was the most unbelievable trip home.I drove 30 min covering one eye,holding my head hoping that Maxalt would do the job.It did not.It was hell and it was very dangerous.The light reflecting in the snow at noon caused indescribable pain ,way out of the scale.It was a record,Olympic,World,Universe.
Earlier today I finally found somebody who has had CH and is now free from them.His advice was to drink lots of strong coffee.It activates the nerve cells in the brain and provides relief.Anybody tried this? I am glad I found this site ,its very well done and is a great contribution to the record holders of Extreme Pain.We are in another league.
I have recently discovered that I am a prone to cluster headaches. After MRI's, hundreds of dollars in medication I have found a "cure". I am in the fitness industry and had the opportunity to talk with one of my accounts about my lingering headaches (5 weeks). He had me try this colloidal drink that is loaded with 70 minerals. From the day I took the first drink, I have yet to have a headache (2 weeks). I am not sure that it is not a coincidence, because of the duration that I have had the headaches, but they did cease that day! Whatever it is I am glad that this latest bout is over. The Imitrex and Lorisette are extremely expensive, while this drink cost a mere $18, and will last for 1 month.
This is my first note since visiting the site 1 year ago. My last cluster was February 2000. I'm 28 and have been getting them since I was 19 years old. I've done the standard things: MRI and also complained of a migraine. Even though I get them infrequently, (1 1/2 years for about a 5 week period) I realize that they are now part of my life. It's a blessing to know that I'm not alone. Since this is my first note, I want to dedicate this to all those sufferers, like me, that have yet to acknowledge their affliction. Life is good regardless. I love and support you.
John from DC
Sorry kimmie-I didn't mean Terry!! Good luck.
Dear Terry, I'm looking for help as well, but one thing I do use when I'm in an episode, is a sleeping pill to knock myself out so I can try to sleep through some of the terrible pain. For me, the pain is so bad that the demoral doesn't help much at all. Also, try Verelan-it's helped alot of ch suffers. Verelan is a calcium-channel blocker-taken daily. Good luck-you're not alone...Becca of Tampa
I turned 40 two days ago. I have three sons and a very helpful husband. I am a third grade teacher and live in a small town. I have had cluster headaches for the past 3 to 4 years. I wonder to myself if I have lost all tolerence for pain or if these headaches are getting worse then ever. I have had things shoved into every orfice of my body to try and stop nausea and the pain. I long to be free of these terrible things. I feel like a total failure because I am not in anyway in control. I have been asked if my marriage is good, is my faith strong, is my job stressful. I have been to several doctors , all who say something different and give me something else to sniff, shoot or swallow. I feel like a drug abuser when I am asked what works best and I truthfully answer Demerol or Morphene. I am so glad to have found this site. I have started to feel very alone and depressed. Why can't I find anything that works? I have contemplated drilling a hole through my skull, but have read that it only sounds like it would feel good!lol! Just when I think that I am at my wits end..I find out that the end is longer! I need to get a grip and quit caring what people think about my trouble and get some guts and clue some folks in....I sure talk big but it is really hard. Thanks for anything you can give to me and finding this site will be a great Christmas gift to me!
I have just been diagnosed with cluster headaches after visiting the mayo clinic. I have had severe clusters for the past four years and was told that I was having mirgraines. I have a heart condition(left bundle branch block) and cannot take any vascular medicines like Imitrex and zomig so that really makes this hard to treat. Lately...when suffering from a killer headache, my right pupil dialates(totally blown) and stays that way for a good 12 hours. This is what won me the trip to the Mayo Clinic! Diagnosis ....cluster headaches. I am in despair for various reasons and am so happy that my doctor told me about this site....any help or reinforcement would be greatly appreciated!
Well, the beast is back for another round. You'd think after all these years I could develop some tolerance, but it never happens. Thank God for Imitrex. Although my medical insurance company is about to cut me off (limit 6 shots per month), I'll turn into some kind of junkie with a $150.00 a day drug requirement. But I'm not worried. No amount is too much for relief from these devil pains. Thanks for the web site. We all stick together, we all make it.
Hi, I'm 33 years old and have been a CH sufferer for
at least 10 years. I'm currently in a deep and painful cycle.
It always starts after September. Mostly at night (during or
right before sleep). Always on the right side and it makes
my eye feel like it's gonna pop out. The latest cycle has been
at least 4 weeks long. I had no less than six headaches that
woke me up last night. Imitrex spray did nothing to relieve
me.
My doctor prescribed prednisone (6 days
worth) and inderal. Prednisone is a steroid and I was told
that inderal opens up blood vessels. This combo worked great
until the Prednisone was gone, now I am right back where I
began.
Well I certainly do not wish this nightmare on
anybody but I am glad to see that there is a place to get
some support.
Has anyone heard of chilli peppers being used to
alliviate the pain?
I am glad to find this web site. I am a CH sufferer as well as a migraine sufferer and I need some help. I am 37 years old, have chilren, and am an 'at home' mom, largely due to my migraines. I am on Verelan, and also Paxil(2 months ago I started the Paxil) and have found nothing that helps me through the CH attacks.(short off taking a sleeping pill at the start of an attack) Imitrex helps the migraines but not the CHs. I am in the middle of an episode now. Any help(or hope) for me? I'm new to Tampa. Any good Neurologists around? Thanks for any help you can offer.
After 30 Years of Clusters I have finaly found this site. Thanks mostly to my wife who realy found it. I am in the winding down stages of a 3 week bought. I think I will be visiting this site often
I'm about into the 11th night of this episode. I can't catch up on my sleep because i get woken up 1 1/2 to 2 hrs after i go to sleep every night. I'm on Imitrex nasal inhalers that i take when i have a full blown cluster that wakes me up in the middle of the night. Those are usually accompanied with complete darkness and an ice pack on my head until the Imitrex kicks in. I usually spend the better part of that time curled up on the floor in a fetal position with the ice pack on my head making deals with the powers greater than myself that i would do anything for them to just stop. This pain is truly hell on earth. I can't stop the discharge from my eye, the knife driving through my temple, or the nausia that sends me into uncontrolable rendezvous with the porcelin God.
When i feel one coming on in the daytime i take my Maxalt tablets. Sometimes, not always, that cuts them off at the pass. But not before i go through at least a good half hour of agony first. I wish they ALL went away in a half hour, but unfortunately thats not the case. My doctor can never get me in to see him until my episodes are near, or at an end, and by then i just wanna sleep for a week to catch up. He wants to put me on Home o2 but i know nothing about o2 other than it's explosive and that scares me. Is anyone else out there on home o2 for their clusters? This site is a relief. The reality of me not being alone in this plight is in a sick way comforting. I really look forward to accessing the chat to get some support from somebody else that knows what i'm going through. I can use all the input i can get.
53 yrs old. various meds. for HA, sinous surgery no relief.
lidocaine drip, O2 etc. found competent neuro man in dallas got me I-trex inject and various other Rx's. 1/2000 to 2/2000 36 I-trex injections to make it from one day to next.went into "remission" and on 300mg lithium carbonate @12 hr spacing and have since been HA free. don't know if it was the lith. or my time be be without HA. I know it has been a great 10 months despite my G/F leaving me for a truck driver. I do which was the worst of the two and am glad they(g/f and HA) are gone.
I know that lithium has a bad rep. but it has worked for me, just as the high dollar Imitrex will stop the stampeading elephant.
Regards, chuck
Hi. I am not really sure that I suffer from cluster'aches. Most of the symptoms seem to fit, but I am not sure.
The 'aches are uni-lateral, it is intense pain, I guess the highest has been a 7 or 8 on your scale.
they come and go, I have been experiencing them since August of this year on a regular basis.
Had an attack last year in July, but that was an isolated event, or so I had thought. I havent done the "dance",
but they are the most intense pain I have had to deal with.
Anyway, thats about it for here i guess.....
Nice to find this place while you are in a boult period, waiting for this night attack. Fortunatelly this occurs in periods of five years since I was 30. I am now 55.
hi i have a question, wicth is worst having a cluster or dealing with the side affects from the meds. it makes me feel better reading everybodys message,knowing im not alone. THINK NO CLUSTERS FOR CHRISTMAS
Pretty awesome to see a website devoted to something that I have dealt with for 20 years. I will be back!
The first episode of clusters I experienced was about 9
years ago. I had no idea what I was enduring and attributed
to side effects of the combinations of inhalants, hallucinogens,
and crystal meth that I was abusing. Here I am drug-free and I
am on my third episode (I had one about 3 years ago and
this is when I found out what clusters were). Without any warning,
I awoke 4 days ago with the telltale tingle behind my left eye.
Due to the extended remission, I had no Imitrix at
hand and within minutes my dread soon turned into horror. I
was violently thrashing about like a madman sobbing to the heavens
for any sensation other than the torment of the Beast. Peaking into
the attack after about 20 minutes, I could not help but curse (yet
beg) the God that has allowed His creation to suffer such merciless
anguish. We have heard the pain often described as worse than
complicated childbirth or accidental amputation. Doesn't it make
it all the more excruciating when we see the disapproving stares
of indifference upon the faces of the uninitiated at the emergency
room? The trite, almost inhumane, remarks about taking "an extra
Tylenol" when the symptoms are explained to them. They are the
blessed majority, and they cannot begin to fathom just how horrific
the pain actually is. It is now day four since the first headache and
I am once again on Imitrix (nasal) and Predizone. I have endured
three clusters since the initial attack and am helpless to when the
next one will arrive. I pray to God that I am not in public when they
decide to strike. What I do know however is I must finally recognize
that I have been created to suffer (the cluster headaches
are just another example of my despair). Forsaken from my Creator
(I have turned to you more than many God!!!), my fate is predestined.
My name is Dave. I am 42 years old with two sons, Tyler 4 years, and Chandler 10 months. I have suffered with Cluster's for 20 years. They are in deed demons of the night. The treatments have changed a great deal from the time i was diagnosed. Am currently battling a two month cluster of about 6 a day. No sleep no peace. Thank God for the support of my lovely wife who can omly watch me suffer. I take vicodin every 3 hours, and two Imetrex Inhalants a day, flavored with oxygen. I appreciate the moments of relief however long they may be. God give each of you the strenght to endure the difficult times each of us face. Peace be with you and Merry Christmas. Dave
hi guys, names andy, had ch for 7 years.doc is useless and so are his drugs.but not all is bad!!!!!!!! ive helped myself by reading info from this and other sites.first of all i learnt that oxygen seems to be the best pain killer,you breath in the oxygen which gets in your blood and makes you feel better.so what if oxygen was in the blood before the attack?would it stop it i thought.maybe this is why people get relief from drinking gallons of water because water contains oxygen and maybe it doesnt work for others because there isnt enough oxygen in the water they are drinking. (making sence?)anyway, i managed to find LIQUID OXYGEN. i put 20 drops in a glass of water and drink it 1 hour before bed(my demon visits at night!)and guess what ? ive not had any pain for 10 days now.i can still feel a little twinge but its not even a number 3 on the kip scale.it works for me so why not try it. the stuff comes in a little bottle 60ml/2oz its called aerobic oxygen.as to where you get it in your part of the world i dont know, start like i did with alternative therapy centres.its not expensive,seek and ye shall find.good luck, and if anyone gets the same results as i did let me know
My name is Scott 41
This is my first bout and so far it has lasted 3 months started in our spring time. I am amazed that the doctors I have seen here in Adelaide don't know anything about this crappy thing we have and have also been told things from tumour to it is all in your head and you want attention (A 41 year old grandfather wants attention, I want a holiday).
If you can help me with a specialist/doctor here in South Australia that understands and knows what they are talking about I would appreciate their contact details.
Im 23 an i suffer from cluster headaches and i am also a women. I can't believe how vicious they can be its like having the worst ice cream headache ever. Day after day, night after night, i suffer. My husband has no clue how painful these things can really be. When they happen i just start banging my palm against my eye rubbing franticly trying anything to ease the pain. I keep thinking when will this pain stop. Or do i have a brain tumor. I"ve went thru a bottle of aspirin in 2 days. I'm afraid to go back to sleep. Because thats when they start everytime i sleep. First time i had one i thought i was dreaming. still halfway sleeping i couldn't understand were that unbearable pain was coming from. When it hit me that it was coming from right above my eye. i jumped out of bed franticly searching for the aspirin. I shallowed about 4 and then paced back and forth for about 10 minutes when that didnt work i tried running cold water on my face and getting an ice pack. I was scared because i never felt pain like that before. I tried laying down. but i tossed and turned. i wanted anyone to take away the pain. my husband tried to hold me and comfort me but nothing helped. eventually the pain went away like it was never there. but a pattern started. each night yet again the samething. These are really horrible heacaches that not to many people understand. I've lost many work days over these. I dont want to go back to sleep again.
Will send longer message next time, have an aura
regards lionel
cluster sufferer
I'm 38 had CH&CPH for 16 yrs. i can get up to 30 headaches in one day,in them 16 yrs.i've been on over 50 meds& counting&i can't even find a place to inject myself anymore on my thighs, DAMNNNNNN iwish they can come up with a cure for these DAMN things,i bet everyone else on this site does too.There were times i would get these things SO bad i would just crab my wife & say PLEASE get a gun & just leave me alone i would bang my left side of my head into the wall and put holes in it i mean big holes (i have a big head) LOL,so i'm taking Wellbutrin to TRY to keep my cool through my CH/CPHs it helps.My dad had CHs his just went away at 55yrs old and NEVER got them back i'm hoping but i have a ways to go B/4 that happens,BUT he said they got alot worse B/4 they got better (GEE THANKS DAD)his only came every 2-3 yrs. i'm chronic i get NO breaks. Alls i can say is thank GOD for IMITREX&Amerge witch helps me through the nite oh & my O2 Too,Well good luck to all you CLUSTERHEADS GOD for bid i know i need it C-YA........Jeff
I am a 56 year old cluster headacher since 1980. They visit me generally every other winter, of 8 weeks duration. My pain generally stays within a 5 to 8 range on a 10 scale, with 80%of my headaches a 7. I am writing for the first time because of, (1) my gratitude to those who share their experience in this site----it helps immensely, and (2) my equal gratitude in finding a med that works! My conservative internist took the step to prescribe Maxalt dissolvable wafers (10 mg). I've only used them for 4 days, but they're a godsend, aborting my headaches within 10 minutes. The only side effect I've noticed is slight fatigue. I'm a healthcare type, thus I've been reading about the pharmacologics of the drug. It apparently acts directly on serotonin in causing the vessels to constrict, and was actually introduced as a significant advance in migraine treatment. The PDR and drug information enclosed with it state that "usefulness with cluster headache has not been established." Well, I'm here to tell you that it's been established with this kid, and I'm delighted. My history and symptomology are classic textbook, so hopefully Maxalt will be useful to a lot of you guys. Check into it!
Best regards, Tom.
First of all I have to say....excellent website! I was very comforted
to know that there was something like this out there. I have been on
and off with this indescribable horrific pain in my head and face for
13 years (like going through puberty wasn't enough to deal with) My mother
also suffers from the same thing (as do a number of her siblings to), so
I always had support from her. I have seen numerous doctors who have
all told me the same thing 'trigeminal nueralgia'. I don't like the drugs
(tegratol) that are prescribed for this condition so I chose to suffer with
it until the attack was atleast bearable and I could function throughout a
day.
Yesterday I finally saw a neurologist yesterday who told me this definitely not just
trigeminal nueralgia and he introduced to me 'cluster headaches'. My natural
instinct was to do some searching over the web first. I go for an MRI next week
to rule out the possibility of this being caused by a tumor or stroke.
I guess what I would really like to know is if anyone out there has managed to
find any type of non intrusive treatments (I typically have been taking
tylenol 3 with codine....doesn't help with the pain...however it does knock me out
which allows me to sleep for a little while atleast). I have a very active lifestyle
except for when this hits me - typically about 5 or 6 times per year lasting around
2 weeks at a time. I am a single mother with a VERY active 4 yr old and a career
that keeps me working around the clock. I would appreciate if anyone has anything
to offer. This CH thing is very new to me - and I am not to sure who to turn to for
advice.
Thanks in advance!
hi im still in my cluster on med seeing a doctor pain stays the same. im trying something to help forget pain. sit with my eyes closed and listen to soft relaxing music. seems to help. im glad im not in world alone. it helps knowing im not the only one. i hpoe everyone feels better.
Pain on right side of face, soreness in throat, feels like a nail in my head right behing my right eye, I can set my watch at 3:00 AM because I know that's when I will be first awakened by the "feeling", I must run to the bathroom immediately for the Imitrix pill if I want to avoid an all-out attack. With luck, the pain will subside in 20-30 minutes. If I,m too late or lolligaggle in bed, it's all over for the next 3-4 hours. I don't know why it has started again. I don't know when it will all end. Nothing really changed in my lifestyle or diet except the fact that winter arrived. Yet the cold air seems to chase away the lingering effects of a suppressed by medication pain. It's almost 2001 and medical science still hasn't figured it out. At least I'm not alone.
Well, I have not had one since November 12. Finally gone for now. I have also stopped with the Lithium.
Good luck to everyone. :-)
Maybe of some help for the minor Demon pain. I started years ago to rub Ben-Gay on my temple forehead behind the ear and down to the back of the neck. I've found relief often and not had to take anything for the pain. I feel that if I've caught it in time I've been able to stop a full blow cluster headache. Try it sometime and see if it might help others also.
I have suffered from clusterheadaches for 3 years. About one year ago I found a very unusual metheod that works almost 100% of the time, although it takes a little work and some of you might find gross. I found if I masterbate in a certrain way the pain will go away in 15-20 minutes almost all the time. The way to do it is to right before climax stop(do not complete) and wait a few seconds. Keep doing this about 10 to 15 times in a row stoping right before you are to climax each time and it usually goes away at the 15th time.(it uis your chioce to finish after 15 times, so people might take more times)
Well.... Its been a month already,and the beast is still visiting every day. Until a month ago i havent had a cluster session in 2 years. The Beast has spoiled many holiday seasons. Last year I was able to have a nice Christmas season, but this year is gonna be another spoiled holiday. Im doin better as i get into the 2nd month. Hopefully only 30 more days till the BEAST goes and hibernates again.
I'm new to this site. I have had CH bouts on and off since I was 18. I am now 55 years old. I was always told I had sinus trouble until I was finally diognosed correctly in 1986. I have tried many drugs over the years with not much success. "However" Now I have found some things that do work, at least for me. I am an herbalist now owning a retail herb store. Believe me, there are some natural remedies that do work and I have been very successful in putting the bouts into submission and relieving most headaches I get. If any of you would like to try these things let me know. There are NO side effects and it's cheap! Drugs are not the only answer out there.
34 years old,suffered with ch for 7 years.starts nov till feb, usually in the night.im on day 4 of taking liquid oxygen just before bed,so far its working.in the morning i know ive had one but i didnt feel it,(if that makes sense).
I am so happy to have found this site. It's great to see comments from people who actually understand what it's like to be in the middle of a cluster headache - particularly now that I'm in a bout. I've never met anyone else that experiences cluster headaches, and to hear other suffers explain their pain makes me believe I'm not the only one that wants to tear her hair out when the pain is peaking. Thanks for being there!
I do not only suffer from clusters, I was hospitalised
because one morning I awoke with this tremendous headache
and got up to get me some cold water and found out that I
could not move my left side, at first I thought is was a strokke
but it was not, I am one hundred percent better. I now
take amytriplene every night before I sleep, this drug was
prescribed by DR> Harris at Vanderbilt. I am not headached
free, but I now know how to deal with it.
LT.
Just discovered this site this morning. Started a new cycle earlier this week after my longest remission (2 years), great timing! I am 45 year old and have been dealing with this major inconvenience for about 17 years now. Although I feel sorry for all of you, I am glad to finally meet you. I always knew I wasn't alone, it was just hard to find you guys, always hiding in the dark ;-) I will be back here very soon to read all of your very captivating stories. Thanks to all for your input. Until the next dance...
Thanks for an informative and supportive website for all cluster heads!
I'm a 43 year old male who has suffered from CH for the past 30+ years. Mine are sesonal starting in the fall and lasting for 6to8 weeks. CH occur daily usually only once. I stay sore the rest of the day and tired from fighting the dragon.
The interesting part about my CH is that the cycle occurs only every other year (odd years 75,77,93...99,etc.). Would like to correspond with anyone having similar cycles.
In 99, I had only to CH bouts, that occured through the doses of Sansert and Predisone. GREAT NEWS!, I'm in remission! Not so fast, Doc started me on Effexor for mild depression 2 months ago. Great for the depression, but started my clusters in an even year when he up the dose from 75 to 150mg/day.
Anyone out there with similar experiences?
Thanks for listening
All the best and happy holidays,
JR
Just found this sight. I just started another cycle 2 weeks ago after 3.5 years of remission.I truely find it hard to believe that finally I have found other people who actually know what the demons really feel like & why I do the dance & bang my head without thinking I'm a whiner. Thank you all for letting me know your out there.
neat site! hope you can help me and also my wife (support) dec. 2000 is the second time of clusters that ive had.
Hi. I've had CHs for a little over 10 years now. It took me 6 years of doctors visits to figure out what I had. I've been to the eye doctors, ENT doctors, and dentists (even had a mouthpiece made because he thought I had TMJ; snapped it in half during the first CH...). I had an MRI. Nothing, until I went to a neurologist. Within minutes he was telling me all about 'my' headaches.
I've been in a cluster period now for the past 10 days. No fun as you all know. Imitrex injections have been helping me get through the workdays. After reading many posts and other information on this site (and the OUCH site), I realize that most of you have experienced the same trials/tribulations I have. It's a good feeling to know that there are others out there that truly understand what I (we) go through. I tire easily with folks who just don't get it; couldn't get it, unless they experienced the pain for themselves, even for a minute. Glad to know you're out there.
Rob
I am a "newbie" to the demon. My CH just started 3 weeks ago. Last weekend my wife insisted that I go to the ER to get it checked. After an MRI, MRA, 2 Lumbar Punctures, and 1 Lumbar Patch, it was determined that they wern't sure what was going on. The ER doc mentioned CH as a possibility. They gave me a treatment while in the ER that was administered every 8 hours. That seemed to take care of the demon for a week. Yesterday morn I woke at 4:00 am w/a little headache. This morning I woke at 4:00 with a 9 on the Kip Scale. I just had to get on the Net and find help. I don't trust my ability to get through this alone.
Scott
I just found your site and have bookmarked it. I have had the headaches for about 3 years and need someplace to come. I have jsut started on steroids and Topamax. I thought I was going in crazy or had a tumor in my head.
hi, iam 37yrs old been getting these ch for 3yrs now sometimes i dont think iam going to make it, the pain is so bad i just want them to go away and not come back, but they always do. i feel for all of you.
My cluster headaches first started when I was 22 and I am now 32. They have a similar pattern every year. I get an attack approx every 11 months which once it starts consists of 2 - 3 attacks per day and this last for approx 6 weeks. I have tried every possible medication on the market and to date have found the Imigran injections excellent. I was prescribed these injections two years ago but found many GP's reluctant to prescribe them due to there cost approx £40.00 per injection. Thankfully I have now found an excellent GP who has no problem in prescribing the injections. I find that during these bouts of cluster headaches my personality changes and become very quiet and moody, which effects both myself and my family.Does any one else have these similar mood swings.Until this bout of attacks which I am experiencing at the moment I only ever had attacks during the day, but I am now being woken in the night with a headache.
Hello!
I am 24 -year old male from Finland. I have suffered cluster headache for about five years now. The cycle is about 1,5 years and the period lasts for about three weeks. I have nothing new to add about the symptoms, except that I get the attacks during the daytime.
am not sure if what i have is cluster migrains.....i have been getting them for the last 7 months and latly they have gotten worse. they have gotten to the point where they will stay for aweek or more.....no let up at all. I have gotten to the point where i have ODed on ibprofin the doc has given me fiorcet and all it has don\e is given me a fuzzy feeling in my head.(dont really know how else to explain it). if someone could recomend a good doctor i would be appreciative. I will travel anywhere i have to.
Desperation
I am 45 years old and have been suffering for 21 years. I was self diagnosed back in the 70's before the benefit of this great tool, the internet. Of course, had been to many doctors, none of whom had even mentioned the term cluster headaches. It was not until 6 months ago that I had ever even spoken to a fellow sufferer. I was seeing a new doctor, one who actually took the time to research the latest drug therapies, and he told me about a patient the week before who was asking him for nasal imitrex. Later at my office one of my employees overheard me trying to track down oxygen on the phone, and mentioned a friend of his who had CH's. Low and behold, he and the patient, were one and the same! We spoke at length on the phone, and he corroborated traits that I had noticed in my attacks, but did not realize were in fact classic; onset of headaches AFTER periods of high stress, pacing during a headache, onset after falling asleep. After 25 years I had finally spoken to someone who understood the pain, the fear, frustration, and the lonliness. And now two weeks into my latest bout, here I find all of you!! I have been here at the screen and keyboard, for two hours reading all I can, actually feeling a halo of pain as I read, but pressing on, feeling the strength of this community. Thank you so much for sharing. With each bout, I think, as I've been told, these will eventually pass with age, maybe that will be one of the truly great benefits of getting old. Thank you again.
Hello,
I'm 43 and have been suffering from CH since I was 21. My first introduction to the dreaded condition consisted of severe morning headaches which woke me up. A visit to the Doc resulted in a prescription of Migril (Ergotomine) which managed to stave off initial daily attacks. However,it soon became apparent that in order to negate the attacks altogether, I would have to take in excess of the recommended weekly dose with its adverse side effects.
Luckily I lived near London at the time and was recommended to the Charing Cross Hospital Migraine Centre which I visited whilst having an attack.
The normal injection for migraine sufferers was administered but this had no effect whatsoever. Finally the doctor came around asked me several questions and on receiving the answers rushed off to grab a bunch of student doctors to see me and demonstrate the classic symptoms of a CH. He told me it was very rare and perhaps 1 in 1000 "migraine" sufferers had CH rather than common migraine. Propranolol was prescribed but had no effect and on my next visit I was prescribed Lithium Carbonate.
Great - this worked for about 10 years and then suddenly had no effect whatsoever.
During the Lithium years my cluster periods usually lasted about 12 weeks. In the following years, the attacks became more frequent each day but the period declined to about 4 weeks. Over those years I went to see expensive neurologists and tried everything including Deseril, Amitriptyline, Prednisolone, Sumitriptan, Temgesics and a host of other mixtures of this and that none of which have ever worked. Doctors wouldn't prescribe some of the drugs because they weren't listed as treatments in short - frustrating.
However, rather than once a year, my CH periods became bi-annual and I noticed that if I had eaten/taken psilocybe semilanceata mushrooms (Liberty caps) that I didn't get them in the year following. Similarly LSD on the couple of occasions that I tried it resulted in the same. However, the side effects of either are not always pleasant, I don't like taking them (mushrooms) and of course they are both illegal. Marijuana tends to make things worse.
A nervous breakdown at the age of 40 resulted in a course of Prozac and this resulted in the same remission as the illegal drugs - yet again, the side effects are not brilliant and doctors are unwilling to prescribe unless one can prove that one is clinically depressed.
My last bout 2.5 years ago found me rushing to the local hospital to inhale oxygen at every attack and this definitely does work. Trouble is that doctors won't allow me to have an oxygen cylinder at home because it isn't an officially recognised treatment !!! However, they are quite happy for me to drive a car to the local hospital whilst an attack is going on/developing - how crazy.
In the last couple of weeks I have started the initial signs of CH with minor attacks (easily aborted by hot/cold water or aspirin) again but so far these have not developed into the characteristic syndrome so I am somewhat
mystified. As always I hope the full blown syndrome will not develop and am really glad to have found this site.
Greetings, fellow-Clusterheads! I have been a cluster headache sufferer since I was 18 and am comforted to know that I am not some kind of freak — that I am not alone in experiencing this horrible and excrutiating pain. I am indeed touched by those that have taken the time to share their stories. I have had my share of the sleepless nights... unrelentless pain... the fear... the "red-hot poker" in the eye... the side-effects... the silent wish to snuff it all out once and for all... and finally—the dream that SOMEDAY there will be a real cure for this most debilitating of headache pain. To actually END a CYCLE - not just the single attacks.
Now, at age 40, they are back again after 3 glorious pain-free years. AAARG. In the past, I would immediately start a prescription of Prednisone and Sansert. For this "round" — I started out on the Prednisone, but have since weened off of that and I am now taking 50mg/daily of a beta-blocker and 375mg/daily of Depakote to try to keep the evil beast from coming. This seems to be working, MOST of the time. When a "crusher" does break through the Wall-of-Meds, I am using a "quick-dissolving" pill called Maxalt-MLT (rizatriptan benzoate) that goes on the tongue at the onset of a CH... and it too, works about 2 out of 3 times very, very well. (There is DEFINATELY a rebound headache when you use this treatment daily - for me anyway.) I believe that I am in the final week(s?) of my cluster... and can only pray that this is the last round. Thank you to the webmaster for developing this site and to all of my fellow-clusterheads... I really do know how you feel.
I have been suffering from clusters since I was 17, now 31, and like a lot of women I see here, it took a long time to find a doctor who didn't classify them incorrectly because I am a women. It seems to me-based on all the terrible stories I have read that it isn't so rare. And I feel for each and every person who shared their story. I have just tried the Imitrex nasal spray and to my surprise it worked to relieve my pain in about 12 minutes. I have never found anything that did so I am very relieved. How long has this medication been around? I have been in remission for 2 years and my last doctor refused to believe they could be clusters so we spent the eight weeks trying different migraine medications that obviously didn't work. So I am very thankful today and hope it continues to work. I am taking Verapamil and am not sure if it is helping or not yet, as far as severity or frequency, but it hasn't made them go away, I am still optomistic. I am wondering what Imitrex does to you since I saw so many people concerned and this is my first time taking it-how harmful is it?
I have made many trips to the emergency room over the years and have tried several medications with no luck so I am really praying this cycle will not escalate-I have two small children and was really hoping to enjoy the holiday season with them. Thank you everyone for sharing your story and I wish that everyone finds some relief.
I am truly sorry to see so many of us here. I have been suffering from the demon myself from the age of 17. I remember my father sitting in the dark holding his head in his hands growing up. It wasn't until I moved and went to the Faulkner Headache Clinic(sp) and was asked to give a family history did I realies that it was a problem that I would live with for years to come. In my family it is a male only condtion safing my sister the pain. I tried all the drugs on the market over the years (Ergots) worked well until they closed the plant somewhere in South America I heard. I tried the pill under the tongue, the inhale you name it. Over the years I have gone the the emergency room at the local hospital with the really bad clutters, But they told me I couldn't go in anymore. I hoped as it happens in family history to stop one day and I did in February of 1998, Until this past November when the demon decide to return. Slowly and not to much pain at first, But it didn't last and here I am again missing work getting little or no sleep at night. My doctor has me on Imitrex 50 mg. and they would get rid of the attack most of the time. I started what I believed to be the apex of the clutters and was up to 5 pills a day which of course upset my stomach. I am know taking Sansert 2 mg three times a day. Luckly they seem to be working as I can't take both at the same time, I'm told. My father had his last clutter attack when he was 44 and as that is my age know I hope this will be my last as well. I truly hope that in the years and studies to come that they will come up with more way to combat the demon. As I have three sons growing up (13,11,8) that if my history holds true will one day join the demon in what can only be called HELL. Good luck to all in your battle with the demon I will return to this site often know that I found it.
I have had CH/ Migraines since I was 27 and I am now 33. I have had about 6 devils that got to the severe point each year on average. My description of severe is...the point where the excrutiating pain outweighs the ability to counter that pain. I currently take Verapamil daily as a preventative. When the ED becomes necessary, they try Toradol, which worked the first time. After that, Meperidine and Compazine(sp) have been administered. They work most of the time to take the edge off of the HA. Only setback of that is that I'm sleepy for about 12 hours but I would rather be sleepy than in complete agony.
Imitrex is out of the question (chronic PVC and HBP). ANy other advice would be welcome.
I have had clusters from age 16. Iam female so I had years of hell to get a diag. and now Iam52 years old and at my lowest point. I have tried every drug that they say may help and none have and the few that showed promise had to be taken away because of attacking my white blood cells. I have been a burden to family and friends alike because they suffer with me and finally have to remove themselves from the head banging fray and frenzy of the overwhelming agoney.Added to that agoney is self hatetred that I cant stop this hell on earth. I have thought many times that suicide would be the kindness way to end this degredation and struggle. My clusters have become chronic,coming so often that Iam living in a world of constant dred!!My concentration is fogie and aggrevates my struggle to get a handle over this monster within me. I found your site. Is there anyone that can truley know. A tiny voice still crys out yes but when Iam banging my head I can`t hear this voice any longer and wonder if any voice can join with mine to help me hang on.
i am a female cluster sufferer and the drs tell me that is rare but as i check out this web site i feel that it is not as rare as they think. i was free of these demons for the past 15 years but they have returned with a force that is unreal. i am having 4-5 a day. i am taking imitrex shots
each time also oxygen when i can stand to told the thing to my face. i have now had them for 5 weeks and i am like you all have said tired, tired and can not work. the dr took me off work yesterday for another week to see if by the end of
the week they will have slowed down or as they do go away.
i am worried about the imitrex but would not be with out it
as it is the only thing that has ever helped me. we may have to do without christmas because this medicine is so expensive. i do hope that all of you that are now suffering
will soon be better and pain free. sincerely, cheryl
smitty@netalpha.net
I have just read all the messages on the board as I have sat here and cried. My husband has suffered from cluster headaches for 2 years. I am a RN and dx him before we went to the doctor. That saved alot of doctor visits and trial drugs. He has been on Verapamil and Imitrex injections. The verapamil had slowed them down but the demon is back. I feel very helpless. I don't know what to do for him. He is getting very tired of them and it is starting to show. He has had several a day and during the night for 6 days straight now. He is a smoker would it help if he quit? Please if anyone has had relieve from quitting smoking please let me know. I am desperate for him. His pride keeps him from saying much but I can tell he is at his wits end. help if you can god bless you all Trish Miller
My husband has been suffering from cluster headaches for 2 years.We have seen doctors and neurologist nothing has put him in remission. I feel helpless and I feel for his pain. What else can we do. Trish Miller
im in my cluster now im taking predisone and zoloft clusters are not to bad but im so depressed its getting the best of me and i dont know how to deal with it looking for advise to help live with it does any body else get depressed help
I have had clusters since I was 13 years old, I am now 31 the birthcontrol pill is the only thing that stops them and my Dr's want me off them soon. I can't luve through that again
I really dont know what is wrong with me, Im so tiered all the time, and at night when I lay down at night my headaches start up. I get them in the day time too. They are painful, but they are tolerable, I think that it is more anoying because I get them so often. I am 25, I have two small children, with my last delivery, I had some major problems with blood presure, strokes, and seizers. I also had the Epidural, and I had heard that one of the side effects can be headaches? Anyway this was 2 yrs. ago. I am under stress alot but, Ive always had stress. Why would I all the suddon have headaches. I really cant think of any real reson for the headaches nothing I take really works. If you have any suggestions please help me. Two years with this anoying pain, 2-3-4 times a week!!!!
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