Below are the guestbook entries from October-December 2004. Thank you for your continued active involvement in this site and keep those guestbook entries coming!
Click Here to go back to the Main GuestbookMy heart goe out to you all and your familys that are right there with you I'm 29 and have had these demons as long as i can remember Ive had two surgerys and teeth pulled out trying to find the problem I envite every one of you to e mail me and I will share all my info that I know (WAR STORIES)with you and if you know someone or have a loved one who suffers I'll try my hardest to help in any way if only I would of had somthing like this 10 to 15 years ago. thank you all and am wishing you all he best!!!!! curently suffering in Carbonado Wa Jon P
Carbonado , Wa USA
Friday, December 31, 2004 at 01:35:58 (EST)
My latest "bout" started on November 16. I figured, that it would last the usual 30 days, but here it is Dec. 30 and they're still going strong. I am having 2-3 headaches a night with no pain meds at all. you see, the only thing that i ever found to work was imitrex injections but they are so expensive and my insurance comapany will only pay for six a month. I can't afford to buy the rest that i would need so why bother? I have tried to make it thru this bout buy drinking gallons of water, taking vicodin(sparingly), Advil, hot showers and the usual pacing, crying and generally praying for it all to end. I'd bang my head against the wall but it's hurting too much to do that. I start winter quarter on tuesday and am not too sure if i'm going to survive. I made an appointment with a naturapath for tomorrow. has anyone been to one? any luck? sure am glad this site is here.
I just found this site. For 18 years I've been alone with this, and now I'm sitting here with tears pouring down my face. Well I guess everyone else here has had a moment like this, too.
Thank God I am not alone. I thought i was the only person in the world that was torture day and night, night and day, please some one give me some great news. I am estatic that i found this site. Hahooo. I am truly afraid. that why i on this computer tonight, because i don't want to find myself waking up on the floor saying "why me Lord, why me".
Well its been about 2 years since i have been here fellow Cluster Heads.was here back then and chatted with some other ch about what to do. been dealing with these for over 30+ years. Tried it all 2 years ago i took predizone for a while and blood thinners along with my life savior Imitrex perscribed by my neuroligst. Thought it was over but i was wrong.
I recently receved a e-mail from a doctor concerning a new surgical treatment where he has performed with great results. under local anesthesia he cuts and sutures arterties under the ear and also around the eye. has anyone else ever heard of such and operation.You can read about this as i did by visiting this web site from the Congress of Neurological Surgeons. http://abstracts.neurosurgeon.org/view.php?id=6714 its somethig im going to be looking at as the beast is now back and i want it gone. you have to do what you need to do. Thanks for being here. joe
Like your site has helped my son Jeremy he has'um 2
He's on topamax I still suffer doc won't switch me ???
Honestly,I'm trying the water cure, well sort of ,Thanks
for being here "God Bless You All"
I have been suffering with these dang things for 3 weeks now, it is the first episode for me. Right now I am only using motrin and the like and I dont know if they do anything or not. Thanks for all the info, I am still a bit confused on how to approach this, I guess I need to find a neurologist or chiropractor that knows how to deal with clusters. It is so frustrating, I have a couple better days, then back again to no sleep and clutching my head half the night. I have a feeling I will be visiting this site often.
I was browsing on Google and found this website. Thank you for all the information. I finally figured out my condition. I have been dealing wiht cluster headaches since 1994 (20yrs old). The information on this website diagnosed my symptoms to a tee. I will go to the Neurologist tommorow and hopefully I can get a handle on this condition. I truly appreciate the information on this website.
Hi everyone---My husband Kevin was just diagnosed a week ago today and he and I really like the information you provide on this website!! It has helped us to understand what he is going through and it helps knowing others understand. He has not had a bad one since Thursday night so we are hoping he is coming down from the worst part. (he has had a headache for 4 weeks now) Thank you for all the great information and helpful hints---:)
ive been a clusterhead now for 6 years,my last eposode was 2weeks ago,i was at the point where nothing was helping until i tried verapamil,this was my wonder drug.the first night i took it i slept all night,i havent had one yet.but we all no they"ll be back, thanks for your support, this site has helped me so much,,,,,stay sain and if nothin wlse fails ice it
This site is amazing. I am 55 years old. My first dance was twenty plus years ago. My last attack was a few months ago. My med of choice has been verapamil 480 mg per day. Nothing else works. I haven't tried oxygen as it appeared that I would need a prescription and that was difficult/expensive to get. A way around this besides visiting the fire station (excellent idea!), is to find a glider pilot. I am a member of a club and could have (next time I will) obtained a tank and mask as we fly above 12,000 feet. Power planes are difficult to get the tank out and have a mask. We use both pressure and demand systems. If anyone would like to know where a nearby glider club is let me know. I will also be happy to send a referal/intro to the club as a pilot and fellow clusterhead. Thank you again! By the way I am having difficulty signing in as a member.
This is my gift to you. I don't half to take time out of my life to help you. lord knows I'v already lost so many years to Clusters and anything to do with them. I'm doing you this favor today. Take my words seriously! This is my gift to you.
If you suffer from Clusters or migraines you are out of alignment. You need to see an upper cervical chiropractic specialist. Trust me I know what I'm talking about. I suffered from Clusters half my life untill I was cure! For more info. go to erinelster.com If you feel threatened by what I'm telling you or you are to close minded to look up this info. than you are just a loser in pain.
I suffered fro chronic Cluster headaches for over a decade
I am now cured by my chiropractor Dr. Erin Elster of boulder Co. If you are tired of pain and lying Neuroligists then you too may be cure by an upper cervical chiropratic specialist!
I have been suffering with chronic CH's for 3 years now. Mine started when I got mono and never went away. After doing massive testings (blood work, scans, ect) I took it upon myself to see my eye specialist as a last resort...since the pain was excruciating in my right eye. He was the one that informed me of cluster headaches and told me that I would have a hard time getting diagnosed with them because I am female. When I began researching it...my chin hit the floor. Everything I had ever said was right here...and I couldn't understand how Dr.'s could bypass it...I had them all baffled. Two years later my neurologist finally tells me that I have a "cluster variation" simply because I am female. I am now in the process of bein referred to a headache clinic or specialist. I think the only thing that is keeping me sane now...is this website. All these years I really thought I was going insane (it's a little hard not to when you find yourself holding your head and rocking yourself...the only thing missing was the straight jacket) I feel like I have done magnificent in dealing with these things everyday until recently. But this site is helping me in ways i cannot describe. It's refreshing to read about other people going thru the same emotions as me!! It makes me feel like I'm not totally alone in this. Even tho I'm not very apparent in the posts yet...I just wanted to thank everyone else for posting and allowing me to read...and mainly for giving me my sanity back.
hello everybody, happy holidays. i last wrote a message on the board in july,i am a clusterheadache sufferer for about five years.i tried everything known to man ,every drug, until my docter put me on verapamil 240 mil everyday. my docter is dr mauskop from the newyork headache center in newyork city.i was getting headaches everyday,sticking myself with the needle at least 8 times a day,i really wanted to kill myself.between the verapamil and eating good food my headaches almost stopped completly. it definetly matters what your eating habits are.i love chinese food but every time i eat it i get a headache.i know certain things work for different people ,well i hope this info could maybe help someone.and if your in the newyork area try dr mauskop at the newyork headache center.goodluck to you all.
Wow, a support network for people with Clusters.....I have been suffering with these things for about 5 years now. I am a 46 yo male. Usually my episodes last around one month. This year they lasted 9 painful months. My friends and family now understand what it's about. They would see me banging my head against the wall and pacing back and forth, moaning and crying. They would all say, "there must be something the doctor can do". When I get these episodes I keep lots of Imitrex and pain killers around. Oxygen didn't work for me. My doctor finally came up with Verapamil. I take 160 mg per day. It seems to work. I havn't had one in 2 months. I also put an ice pack on my head and that seems to sooth the pain some. When I can I grab my partner or someone who knows me and have them massage my head, applying pressure to the left side of my lower skull and top of my head, around my eye. Thanks for sharing your experiences..........
I have been a clusterhead for about 14 years and
go a couple of years at a time with no cluster headaches.
I am going through a spell now, it has been about a week so far they are not as intense as they have been in the past.
I find the information about the waterx3 interesting and
will give it a try. I have a water relief of my own that i find very helpful. I go into the shower during an episode!
I get the water as hot as i can bear and let it pound my face and head while i take deep breaths. It helps me alot!
I hope it helps someone else through the pain.
Unfortuantely I'm a cluster headache sufferer. I've had migraine headaches off and on for about 20 years - I'm 33. I had a 2.5 year layoff until they arrived again this past week. Currently I'm seeing an acupuncturist & a nurologist to help. So far, I have had minimal success. The last two days were the worst. Don't know what to do except to call my Dr. & have me try something new. In the past, I've done some of the following to help alleviate the pain. - 1. Run in place as fast as I could, 2. run hot water over my hands (to redirect the flow of heat from my head to my hands). Acupressure - attention to the webbing between my thumb & index finger. 3. - Foot massage. 4- Water. That's all I can think of for now but I hope this phase passes soon. No one deserves to be in this kind of pain. Hope this helps anyone reading this.
Finding this site 4 days ago was the best thing in 7 weeks - Ive found relief! WATER WATER WATER and magnesium. The first night I drank water for several hours before bed - got 5 hours sleep and only small attack on waking. Since then no major attacks, just shadows, neck pain & opposite side pain - I can now sleep without fear! I am not on any preventative meds and understand this is perhaps why the waterx3 is working for me and so quickly! Gulping huge amounts of water may also be good at onset and during an attack but I havent needed to try that so cant verify.
Wishing you all pain free days and nights, at the very least a little relief
Dare I say it, I now have hope for christmas, if I stay OK this week, maybe even a glass of champagne...
Super excrusiating pain! Ok I know that they are not that pleasant but hey...I haven't found the words to descibe them yet. I'm on about my 6th week this episode. Man these things are killing me. I've had them for about 9 years now. Last episode I had was about 2 years ago. Ahhh...those were wonderful. Anyway, I was just posting to see if anyone had any tips to numb the pain. I've tried lots of things. Some work then they stop. And some don't work at all. Most recently I've been doing jumping jacks and push-ups like crazy during the headache. I just keep going until I am completely exhuasted. I talking physicaly imposible to go on. It seemed to help a few headaches, but not the major ones. Though it does keep your mind of the pain slightly for the period of time you are doing the excercises. I did jumping jacks for 10 minutes straight earlier today. Helped decently, but my calf muscles are still tense 2 hours later. Hey but better than a headache right. Anyway, I truely wish all of you sufferers out there minimal pain. If the pain was as simple as having your fingernails torn off we would all be happier peeps. But seriously i really know what you are going through. hang in there guys, i pray every night for a cure.
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O.K again. I just read my posting below and don't want anyone showing up at my house thinking I'm suicidal, tho I may have felt like it at the time. This episode has peaked and is now on the wane - thank God. Still would like to hear your thoughts, though on how you get through it. Boy, it sure is hard to type without mistakes when you're in the midst of an attack! Sorry for poor grammar and spelling, but I know you'll understand.
O.K. I was a bit euphoric to finally get the correct diagnosis, and to realixe that others suffer too. I appreciate that. But now in the midst of another episode, where I want to crawl in a hole and die, give me some inspiration on why I should not get the gun or put the car running in the garage... You folks seem so strong and knowledgeable, that I want to know the key thoughts as to how you keep from going crazy and offing yourselves. There's got to be a way of getting this desperation out. Have there been any studies done on how many suicides have been attributid to this syndrome? Lets take donations from those that are able to fund some research, or a PR effort to let the rest of the world know. This is incredible, I can't believe it. I'm writing in the midst of an episode, which is a relief, - at least I'm not ffeling as though I'm talking to myself, and just to write is a distraction from the pain. Now I know why there are so many mispellings in your site's comments - you know they're there, but you're beyound caring as long as the message gets through. Love you all, for even a moment's peace through shared misery.
Hi all, I am 25, been getting my clusters since I was 10-11y old. I remember the first few years my doc thought I was making it up to get attention. uhhh! Well this cluster jsut started two days ago and I have already had 13 attacks. Mine usualy last about 3 weeks. Been over a year since my last. Take care.. :)
dear fellow sufferers
Have you tried HEAT ? I could not get through without my hot water bottle and if just one of you could get some relief from trying heat that would be just wonderful.
These are such terrible attacks we suffer, if we can just find anything to help ease the severity even a little, wow that would be great!
I am a 44 year old female, 28 years a sufferer, this bout now into its 7th week 8-10 a day. Not coping very well this time, last time they went on for 5 months and I am terrified of sleep and exhausted.
But I have my hot water bottle and 80-90% of the time it gives me some relief and comfort, I believe far more attacks would reach maximum levels than they do if I didnt use the heat. I will post more later with my "perfect hot water bottle" technique, or email me to ask
Worth a try dont you think?
take care and try to keep strong
I was about to go to sleep when it came for the first time. I felt a stabbing sensation whenever I moved my eye. I went to my mom in tears because of the pain. She was very frustrated with me and gave me asprin and told me to go to sleep. 15 minutes later I was back and I was grabbing my head, pulling my hair, and covering my eye. She didn't understand what was going on as I was so loud I woke up my step dad who also didn't understand what was going on and told me to "shut up". My eye was in so much pain I thought it was going to fall out. Whenever I moved my eye it was as if someone was inside my head, tearing my retina. My mom finnaly realized what I was having, but she said I was having a migrane. I battled myself to sleep trying to hold my eye in place for dear life! Luckily I woke up the next morning all better, as if my cluster headache was only a dream.
Hey everyone!! I wanted to take a moment to post my recent experiences with my cluster headaches. Just to recap (I posted about a month ago) I have had chronic cluster headaches for about 3 years straight now. It began with 1 a day and got progressively worse until I was getting about 3-5 headaches a day. As you all know, these things can ruin a life and having them every day for 3 years had me about at the end of my rope. I went to an ENT for help before I knew they were custer headaches thinking it was a sinus problem. Using things like Afrin, Breathe Right nasal strips or just holding my nose open gave me some relief. After I had surgery on my sinuses to clear up some bone spurs, the headaches became unstopable. My ENT doc did all he could and referred me to a headache / pain specialist in Austin, Tx named Rajat Gupta. Dr. Gupta diagnosed me with cluster headaches immediately. I was prescribed Zomig nasal spray, oxygen and Verelan (a form of Verapamil). I was taking 100mg a day of verelan which seemed to make my headaches very erratic. The time the headaches happened each day was very steady before verelan but after I started taking it, they changed drastically. After a week, I decided to stop taking the verelan as I thought the headaches were getting worse because of it and informed my doctor. The nurse I spoke to was very understanding and told me to discontinue use but something she said made me decide to continue using it. After at this time, I was supposed to up my dose to 200mg a day and I was terrified about that prospect. If 100mg made my headaches worse, what would 200mg do to me!!?!?! Well, ***and here is the important part***, i started on the 200mg and that day, my headaches for the most part have vanished. In the last 2 weeks, I have had 2 headaches and it has been a FABULOUS 2 weeks. I do get very small shadow headaches on a daily basis but they are not at all painful, just a very slight annoyance. I would describe the shadow headaches as the little warning I normally get before a full blown cluster headache. Also, I changed my eating habits some which I believe has contributed to my headaches going away. I am drinking LOTS of water especially when I feel the shadow headaches start. I also used to drink orange juice every morning (i dont do coffee) and I have cut that out and replaced it with water. I really hope this helps some of you, especially those that suffer from the chronic headaches. I know that personally, I was getting to the point where I could not take the pain any longer.
I started my episodes about five years ago, after s or 3 days of waking up in severe pain, I went to the doctor. He informed me thatI had cluster headaches. I went to another doctor, he assumed I had a headache, this was a severe pain in my head, there is a difference.
In may 2004 I had started another episode. They had been coming for the last five years. Always at the same times of year. Either during the spring, fall, or both. A friend of my girlfriends suggested that maybe I had cluster headaches. I had never heard of them but I figured I would search the internet. I found this page, and I was amazed at what I read. I truly thought that I was the only one suffering with this problem. When I read the testamonies I was floored. These people knew what I was going thruogh. I'm not the only one putting my head and fist through walls. I'm not the only one paceing from room to room like a mad man. I'm not the only one who curls into a ball and cries like a child. Thank you everybody for letting me know that I'm not suffering alone. Today is the 13th of dec. 2004 I have a headache. This is the first time it has happened this late in the year.
My clusters started when I was around 14 years old. I was diagnosed with clusters last year (26 years old)...Talk about a long time to find out exactly what you have. At first, I thought I had these headaches because I needed glasses...Nope, they kept on coming. Then I thought I was getting them because of a badly positioned wisdom tooth,went through tooth surgery and headaches kept coming. Saw a doctor, he told me it was migraines. Last year I suffered from my worst cluster crisis ever. I could not take the pain anymore. I was afraid to go to sleep, my eyes looked like they were litteraly popping out of my head from the pain and crying. I finally went to see a neurologist at my local migraine clinic and that is when I learnt that I suffered from Clusters. I find this website very helpfull as I feel better knowing that I am not alone. Sure the clusters still come and I dread them, but at least I know. I sympathize with all of you and pray (every cluster night)that doctors will one day find some sort of cure for this terrible pain.
I'd like to say a word to husbands and wives of cluster sufferers: We love you and just knowing you are there does wonders. Thanks to bosses who take time to understand the monster and don't freak when we arrive later in the day or miss a day because of IT.
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A friend of mine suggested to me that I might be suffering from cluster headaches today so I looked on the net and found your site. 3 years ago, after my second baby was born, I started suffering from headaches that were located in the back of my head and then seemed to travel. Some days it was in the back of my head, then on the crown, then over my ears. It was so bad last year that my husband had to take me to the ER and I ended up getting a spinal tap, the doctor thought it might be too much spinal fluid build up. That wasn't it and there was a lot of pain involved.
Now it is three years later. A couple of months ago I was getting into my van with my family and I clocked myself right on top of the head. OUCH!!! I didn't think much about it, but I immediately felt sick to my stomach and dizziness set in that evening. I was taken to the emergency room the following morning at 3 a.m., you guessed it. A concussion. Unfortunately that has set off those same headaches again. I started having trouble with my right eye and tingling sensations on the right side of my face. After being to two specialists and my normal eye doctor, they can not find anything wrong with my eyes. Still, my vision is somewhat blurred and I feel like there is a pressure behind my eye. The headaches are terrible. The come and go but everyday there is one waiting to greet me. Nothing I take, over the counter works. I'm afraid to go to sleep at night because I've started waking up at all hours with them and I lay there and suffer because I know there's nothing I can do to relieve them. I toss and turn and pray and hope I do not wake my husband up. It hurts to lay my head down on the pillow. I'm so tender and I ache when I get up.
I've found a wonderful doctor here who is going to get to the bottom of this. Today I went for an MRI to make sure all is well in the brain department.
Anyway...I'm not sure. I do realize that most cluster headaches happen to men, but I might be the one woman that slips into your group. I'm a mother of three and it is very difficult to function when you feel like somebody has hit you in the back of the head with a ball bat.
I will continue to read your site. It's nice to know I'm not the only one who suffers with these stupid headaches and feels like I'm going to go crazy.
If you have any suggestions or words of advice and encouragement, please feel free to contact me. I would really appreciate it.
I was told about a year ago that I have cluster headaches as well as migrines. Nothing works anymore. I've tryed imitrex, zomige, zofolt to prevent, and before I know what kind of headaches I had I was taking 3&4 800 mg of IBprofen and it was not helping at all. I've been going through this since I was 15yrs old, and was told that I was faking it and did not know what I was talking about. So I just lived with the headaches and thought that there was nothing I could do to get rid of them. I am now 24yrs old, merried with 2 children. My headaches went away for about 3 years and came back almost two years ago and was affecting my life with my family. My husband went to the doc with me and told her about my headaches and that is when I started to help. My husband has gone with me almost everytime I went to the doc and has tried so hard to understand me but still sometimes I can tell that it is really taking a tole on him and my kids. I sometimes want to be left alone but that does not happen much because alot of the time my husband works and I'm home the our kids and they need me ( they are 4 yrs & 15monthes ). When my 4yr old comes home from a full day at school she wants her mommy to spend time playing with her and it upsets her when I simply want to be left alone. Sometimes she will hug me and tell me " mommy, don't be sad. I'll take care of you and make you all better " But my 15 month old doesn't understand all he knows is that he needs his mommy. It's nice to know that their are other people out there dealing with the same pains I am. Most times I feel like people think I am lying about my headaches. I think it is b/c they simply do not understand. Thank you for listening. May God bless you all and take away the pains we suffer from. ~Jennifer
I have been suffering with migraine headaches since i was fourteen years old, and cluster headaches since i was nineteen years old. I couldnt imagine that there was ANYONE in the world that also has to live with the pain of a cluster headache.The migraines are a walk in the park compared to a cluster headache. After reading some of your stories, at least i don't feel alone. I too have begged my husband to take my life during my bouts of cluster headaches. I feel so bad for my children who have to see their mom screaming in pain.I was just in the emergency room on Friday for my first one this year. I know whats coming, and i dont know if i can take this another year.The only reason i open my eyes everyday is because of my two beautiful children. If it wasnt for them, I would have given up the fight a long time ago. Nobody, and i mean NOBODY can understand the excruciating pain of cluster headaches unless they too have experienced this inhumane pain. I honestly dont know how we can keep surviving these year after year.My doctor just prescribed lithium for this years clusters.Iam praying this works, i am tired of the 3:00am visits to the emergency room day after day. I know how you all feel, and believe me, i cry for you all too. YOU ARE NOT ALONE!!!!! good luck and good health to all of you . thanks for listening..........paula
I have just been told that I am suffering from cluster headaches and I would like to share and learn anything and everything that I can. I have been suffering with this one now for about 8 hours, with no relief. First we were told that my headaches from another source. But now that we know they are not, I am looking to learn anything and everything that I can on this matter.
Thank you for letting me write about this.
I look forward to writing now and then.
I did not know about this web site.Even I am in this period with the crisis its happy to me know that there are other people who knows about the intensity of this pain.Im a doctor in my original country and I begin with this at 19 years old.At beginning I suppose was the dentature and I usually took about 18 or 20 aspirins dailys during the crisis.Later I was examen by Maxilo-Facial surgeons,Neurologist,Cardiologist,etc,etc and nobody gave a diagnosis or a treatment.I was the one that found that i have a Cluster Headaches and with that I have to learn how to live.Now since about 4 weeks I have the crisis and I noted this time that the pain is coming more frecuent during the day and I can sleep at night,something strange.I will go to try with the Lidocaine,becouse that is something new for me.If somebody have any experience please compart with me
When people say they have a headache they have no idea but i have found someone one the same page.I am on my 7th week and im going out of my mind,im out of imitrex the topomax isnt working.my next step is to try oxygen.this site has been very helpful and uplifting thank you
what a sight, finally, we all have people that understand our clusters. everything that i have found out about these things, i have pretty much done on my own. been to doctors, emergency rooms, chiropractors, and nueroligists. i started researching them on my own and took the notes with me to the cleveland clinic(dr. maryann mays). finally, after a lot of e.r. visits, my ins. co. agreed to give me a prescription for 30 dose packs of the imitrex injections every 6 weeks, so i stockpile the injections for the next cycle. mine come in april and then again in nov. they start out very slowly, one every few days, then they build up to about 6-8 a day. the cycle lasts for about 2 1/2 - 3 months. as the cycle goes along, they seem to get more intence and frequent. now i take neurontin and verapamil 3 times a day along with my injections of imitrex.
believe me, i understand everyone of our .01% of the population that get these things. i guess that the good lord gave them to us because he knew that we could deal with them. he does everything for a reason, although it would be nice if we knew why he chose us. i know that it's the most intense pain known to man(& women, too). i've had these things for 26 years now. i still remember the first one. go to the emergency room, have a dr. come in and twist my neck, give me a shot of valium, and passing out. they are not like fine wine, they don't improve with time. here are a few things that i have found that help, sometimes.
9-12 mg. of melitonin before bed (sleep through the REM cycle of your sleep)
when the cycle is about 3 wks. old, do the prednisone dose pack. i use the mega dose pack 7 for three days, then 6 for three days, and so on.
I LOVE BEER AND WINE, BUT NEVER DURING MY CYCLE
i have realy enjoyed what i've read tonight. it's nice to know that there are others with the clusters. we understand what pain is, but please don't give up. between all of us, we will find something that works. i hope that it's today. keep in touch with any other options that work. i'm going to start the water thing tomorrow and let you know how it goes.
Hi everyone, I'm new to your site and it's a welcome to know that there are other's like me who suffer from these awful things. I'm 47 and have the clusters for nearly 9 years now. I had a basilar artery clip ligation done in 2001 (brain anurysm) and it seems since then, that they have gotten progressively worse. Now I'm getting nearly 5 to 7 attacks nearly every night. I'm hanging in there though. I've also survived 6 non cancerous brain tumors since 1989, so I figure God isn't finished with me yet and is keeping me here for a reason. The pain is dreadful and yes child birth was much easier!!! A friend once asked me who suffers from the other kind of migraine, if ever I got to thinking irrationally and thought if I just put a hole in the middle of my head that I would feel better? I told him that I used to have the other kind of migraine and understood what he meant. However with the clusters I feel like someone has taken a .44 pistol at close range and blows the left side of my face off and I feel the whole thing happening to me. He smiled and said he'd quit whining. I look forward to chatting with you all.
This website is amazing and helpful. I feel the pain as you all do and I hope someday there will be a cure.
I first developed clusters 20 years ago after a diving accident. It took five years to put a name to the syndrome - by a dentist - not a doctor. I have never found a medication that worked. On for six weeks off for six weeks is the main pattern, six to eight times a day. Hate the wake up ones. The only thing that gives me any relief is NOT cold packs - they make me worse - but HOT ones. Massage shower head on a tightly focused spray and hotter than the rest of my body can stand. Start at the front of the head and very slowly move the focus over the top of the head and down to the base of the neck. After the third or fourth time it often gives me that "climax" and finishes. Not always, but being able to shift the pain around is better than trying to crush your own skull. Go easy though you can literally cook your brains doing this.
Reading these posts breaks my heart "hang in there" I have been a CH for 24 years and I am now 44. I have also been to mant docters and have been given cocaine, pain killers, sansort and prednisone. The only thing that would get rid of the headache was cocaine the docter would put a small amount on a long rod and insert it up my right nostril headache gone. But it does not work if you snort it and good luck getting a docter to do it for you they wont do it for me anymore. I stoped going to docters when my nero said "so what do you want me to do about it" what a Doc. My CH come every third year from the first of Nov- mid Jan like clock work eight to ten a day but most of them at night. I have all the clasic signs. Before I learned how to get rid of them they would last for hours. I know the pain ya'll are going through. The way I get rid of a CH is through physical exercise i.e. jumping jacks or running until you are out of breath. It works, I have been doing it for 18 years. If you have a medical oxygen bottle follow up the exercise with the oxygen your headache will be gone within 30 min. or less. Everytime my cluster year comes around I get prepared for. This year i went to the book store to see if there was anything new going on. I found a study a docter was doing using magnesium. He found that cluster sufferers had a very low magnesium count when they were going through a cycle. He gave his patient a shot of magnesium, not only did it stop the headache it ended his cycle. I started take magnesium in July getting ready for my cycle in Nov. and I have been cluster free "knock on wood" like I said earlier they start the first week in Nov. you can set your calender by it. So far it is working for me, so give it a try what do you have to lose but CH. If the magnesium doesn't help get in shape and run as soon as you fell the beast comeing. You don't have to take the pain it's to much to deal with. Feel free to send me an e-mail if you have questions. I have been the docter rought and they suck all you can do is help yourself. BE STRONG
Great site to have found.
Hello, I'm so very happy to find this site. I have had headaches for over 20 years and didn't know what they were. It is so very reassuring to know it is a common complaint. Doctors have not been able to help me in all this time, and none ever suggested it might be cluster headache - I wondered if my being tense was all that was wrong as I get them every 26 to 35 days and they last for 2 to 4 days. My symptoms are exactly the same as are described for cluster except for the duration of headache. I pull my hair that much and press my head that I feel like I've been hit with a baseball bat and can't put my head on the pillow for a day after it's gone. I'm going to a herbalist next week and hope he can give me something to stop them or lessen the pain. Wish me luck! Will check in again soon. Never have I meant "I feel your pain" as much as I do now.
Regards to all,
(I may have double entried, and if I did I apologise)
Very comforting to find this site. I plan to spend a lot of time reading and researching on Clusterheadaches.com. Thanks for being there and as I get more familiar with the site I hope that I can contribute.
Came accross your site wilst searching for cluster head aches and would just like 2 say i know how you all feal i have suffered with headache for three/four years and most times no sleep for about 6 days head giveing pure grief cant think clear even speach is starting 2 suffer cos talking sets off head ache well hope we all get better another cluster sufferer.
Hey all, I used to come to this site everyday about 4 years ago. Then all of a sudden my clusters stopped and so I gradually broke away from the site, thinking, or hoping that my headaches were gone permanently. Wrong!!!!!
I was 17 when I got my first cluster and for 2 years, I was getting 8-12 per day, every day. Then I was properly diagnosed by a neurologist. Before that, doctors would say, "It sounds like a migraine, take some tylenol". But guess what, I have had migraines since I can remember and migraines are a cakewalk compared to clusters. Ever since I was about 5 years old, I have had migraines 2-3 times per week and I have learned to live with them. But you CANNOT learn to live with clusters.
Back in Dec. 2001, a nurse on this site told me to raise the dosage of my verapamil because I had become chronic. I raised the dosage to 240mg, twice daily. It worked!!!!! BUT, I wouldn't do it if I were you. After about a year of that, an no headaches mind you, I ended up in the hospital because my body couldn't handle the verapamil any longer. I had been taking it for 11 years. My heart rate had dropped to around 38 beats per minute awake and asleep it was around 25 beats per minute. So I had to stop taking the verapamil. I was so scared because I knew if I stopped taking it, I was going to get a cluster, so I kept taking it anyway and ended up in the hospital again. The doctors told me that if I didn't stop taking it, I would die. I stopped. So now a year after my trips to the hospital, still no headaches. Man I love life.
Wait, something is familiar about this pain on the right side of my head. NO, it couldn't be. I haven't felt this pain in 3 years. OH God no! Yep, we're back to ruin the rest of your life. Yes my clusters started again 1 week ago. Now that bully is back again, you know, the one that made you afraid to go outside, or go to school. They guy that made your life a living hell. Thanks for letting me vent my sporadic bits of personal shame, and excuse me if it is hard to understand me half the time, it's hard to think with a crowbar trying to pry out your eyeball.
HI All! New to website, but not to clusters. 4th epsiode in 3 years, finally decided to do some research. Gratefull to find this site. Showed it to my wife (See, I'm not crazy) Once I hit on the term "suicide headaches" a little bell went off in my head. My dad took the big dive when I was 5, and I remember mom talking about his headaches. Asked my sister, she said dad used to sit outside alot of nights holding his head. Sounds familiar! This was in 1963, and he had suffered for years, "getting by" on morphine and such. At least it's a relief now to know why it happened. God's blessings (the understanding) sometimes come in strange form. The beast is strong, but my wife and son will not have to go thru the same thing I did. Thank God we have more understanding and treatments now than 40 years ago! I will survive! Jim
It's been almost 3 years since a i've had a bout of headaches now. I've been taking Topomax because my neurologist thought that might keep them at bey. I'm done listening to doctors. I've been doing this for thirty years now and all the doctors do is guess! they have no idea what the trigger is or what takes them away. Imitrex is the only thing that works for me but it is so expensive I can't afford it. I have tried everything...all the medications to prevent them and all the medications to stop them. i have been to chiropractors and acupucturists and herbalists and shrinks. all they do is guess. I guess thats why they call them practicing physicians. now all i want is relief!!!! thank God i'm not suicidal. i'm so depressed. i am just staring another bout & that means another at least 30 if not 60 days of hell. i know i'll survive but, you know these just chip away at my sanity and i just don't know how much more i can afford to lose. i don't want to go anywhere or do anything cause what if i get a headache while i'm out? i just went back to school after 30 years and i don't know how i'm going to do this now. i read all these letters from all you people who suffer the same as i do and i just cry because i know how you suffer and it makes me so mad that no one can make it stop.
I am 32 years old and have just been diagnosed with Cluster Headache. The stress of my job has been awfull the last two years. I am in sales and a high performer. My first epsisode was in sept. 04. Lasted 10 days. I can't go to the mall, hard to stand up, I get weak and can't focus.
I am in an episode right now and just found this Website. The pain seems to originate from the back of my neck. I have backaches every morning. So far I do not get them at time. I don't know what to do. I am scared I won't be able to keep my job.
It is amazing to hear the similarities to others. I have to press above my nose to get any relief.
I have been in hell for almost a year now. I was finally diagosed correctly about 1 month ago. I am so glad to have found this sight. I feel for everyones pain and don't quite understand how we are all still here. We have to be some of the strongest people alive. My husband and children have yet to come to terms with my pain. They think i'm going crazy. I am a cronic clusterhead. My doctor has me on Indocine and Lamictal and it is not helping a bit. I get them at night the worst starting around 5ish most nights i cant get to sleep or I am afraid to sleep knowing in an hour or two that I will be awaken with yet another and pace my floors for the rest of the night trying not to wake the rest of my family. how does everyone cope with work? I am finding it hard. At least working in a shool system they are the most compationate and understanding and they unfortunalty have witnessed my pain and had to bring me to the ER too many times. I miss work to much and I cant think of not working the rest of my life but some times I think that I cant keep going. I have felt suicidal many times over this past year and just want some relief. I pray for a remission.
I got a new cell phone because the battery was getting very hot and I was getting these funny headaches over my left ear. Got a new phone and still the funny headaches were still coming.Told my nurse friend and she told me it was a cluster headache. I do get migrans,and if I take alot of meds right away it will at some point go away. These cluster ones are different,(don't last as long as some of you) and my heart goes out to you,they come and go and very painfull. Now I have somewhere to come. Thank you.
I have been reading these posts for awhile now and like many others, I find a lot of comfort in knowing that its not just me with this problem. I have been having cluster headaches for 3 years now. I get them 1-4 times a day and only get the occasional 1 day break from them. For a long time I thought it was due to a deviated septum and bone spurs found on a CT scan. Finally, I spoke to a doctor in Austin who diagnosed me with CH. These headaches are by far the worst pain of my life and like many others, I am often afraid to leave the house or go anywhere in public. It really scares me to think that I may have to deal with this the rest of my life. It affects me at work (my attack times are 10am-2pm and 6am-10am) and at home. My wife is very loving but has no idea how to deal with me when I have my attacks. I made sure to fill out the surveys so I can pass along what info I have to others and lately I have had a good amount of success with zomig.
Is there a support group for CH in South Africa.
To all fellow sufferers !
I thouhght I was, and felt very alone for the last ten years
Reading your stories is like reading an biography of myself.
Be Strong ! There is light at the end of the tunnel.
I would rather have this than beeing blind or HIV pos,or
a thousand other things ...(and still say "WHY ME ???
I am the good guy")
Be Strong !!
It is so validating to see information, data, etc., to demonstrate that I am not alone. I hope to learn a lot from all of you and also hope that I can provide relief (even if it's only comic) from time-to-time.
My name is Mike and I to am a "Clusterhead". I had no idea what that meant until just a short time ago. It's gives me a little peace of mind (excuse the pun) knowing that there are othere people out there that are experiencing what I am going through. I didn't mean to say that I'm glad that anyone else suffers from this horrible syndrome, but I never thought anyone could possibly understand the pure and unadulterated agony a person goes through with these types of headaches. I have to say one thing. I am a fortunate man. I have a terrific wife who loves me very much, and she has tried to help me get through these eppisodes by whatever means necessary. I only hope each time one goes away that they never return again. Until that day comes I will continue to read this sites forum and pray and hope for every sufferer out there, and until that day for everyone. Take Care, They Stop Eventually. Mike P.
Have had Episodic CH for 25 years. Initially at 5 yr intervals now down to 2 yrs for the past 10. Excedrin, O2 help about 70% of the time. Sansert works pretty well(3-4/day), but have to get in Canada now, no longer available in USA; prednisone worked once, but seems ineffective early in an episode. Seems like I have to have a few really bad occurences before the episode ends. Usually last about 2 months.
Hey. Guess I'm yet another victim of cluster headaches. I've had them since the age of 16 and am now 47. I was in remission for approximately 3 years and now their back in "full force!" I'm not sure if it's due to my age or what, but the intensity of the headaches are so extreme and painful. Pain doesn't even begin to describe it. And now, for the past two days, after my 3-4 headaches during the night between 1:00 a.m. and 5:00 a.m., the last cluster continues and turns into a classic migraine lasting most of the morning and early afternoon. I don't know what the heck is going on. Since the beginning of my clusters, I have seen more doctors and have been put on more medication than one could imagine. The last drug I was on was amitriptyline which did work; however, I ended up taking such a large dose (350 mg daily)that my physician said it would have an effect on my heart, so he took me off. I then went 3 years without a cluster, but they found me 3 months ago and still going strong. (hoorah) Everyone tries to tell you that they understand when you say you have a "headache" but oh, they don't know unless they too are a cluster sufferer. And of course, everyone says that there must be some medication to help. (Haven't found it yet) Even several doctors that I have seen never heard of clusters. (That's scary) And of course, I have all the symptoms...pain on one side of head, tearing eye that seems like it's inflammed and on fire, piercing pain down my side of my face, through my jaw, along my neck, arm goes numb, shakes, heat flashes, heart pounding, can't talk, drooling from mouth, grabbing my head, crying, screaming, thrashing, seems like I'm having a seizure and just wanting to die die die. When I'm lucky with a cluster spell, my very supportive husband and soulmate is there right by my side helping my to try to cope. He turns on two fans, gets me icepacks, undresses me (hot flashes), rubs my body tenderly, and talks soothing to me to help me relax relax relax until the cluster has come, climaxed, and died down. And as I collapse with sheer exhaustion, he covers me up, kisses me softly, and tells me that he loves me and wishes he could take the headaches away from me. And he's there ready for the next cluster. I'm so very thankful for my husband. And I'm glad to know that I'm not alone and when I'm having a cluster spell, someone out there is having one too.
hay you all itís me again. Cluster head. Just sitting here drinking some hard suff.banging my head
on the key board .o ya i know that drinking is the number one no no bring on a attack every time
my headache's have not started yet this year. and itís time past time .just picked up the codeine to
day o donít move to new Hampshire. there is no help here for paying for hospitals bills. they tax the
shit out of you and all you are left with is shit in your hand because you canít afford the toilet paper
im not kidding .donít come to this state if you poor.!!!most of us are i canít work. haven't had anything
in ten years. moved here to find a cheep place to live. had to right wrong. well im lucky im not on the
streets ,o well time to go for now be back soon eggie
Thank you for this site, I am alone with this, I have been having them a long time and now I feel some sort of relief to know how much information is out there...
Clusters were a big part to my partner leaving me. I now have my 'old friend' visit me during the night. I wish I was completely alone.
I have just been diagnosed with CH 4 days ago, after almost 2 years of daily horror. At first they treated me for depression and when I tried to explain to the doctor how awful it was I used the telephone as an example and asked her to imagine how it would feel if I wacked it against her head, well she tought I was becoming violent and gave me bigger doses of Effexor and because of the twitching in my leg she added Neurontyn. The medication didn't help. The monster came back everyday with full force. I felt cursed. I didn't know anybody who had these terrible headaches. A lot of people, friends, family thought I was making too much of a big deal with these bouts of headaches and that I was becoming a real nutcase. I lost many of these friends. I know you can't feel somebody else's pain and I truly wish it didn't exist but here I am with you all and it saddens me to know that so many people know exactly what it feels like. When I first came to this website a couple of days ago I cried and cried when I read your stories.Finally I was not alone with this and there is a name for my condition but I still feel that this kind of pain should not exist. What good can it do? Why does it occur?
What it has done to my life for the past 20 months is unreal. I ended up losing pretty much everything. I was homeless for ten months and finally with help from good friends I have a place to live and hide when the monster comes. Mine come every day starting from around 5 p.m. to 1 a.m. . Since the medication I was taking wasn't helping I developed this routine of ice packs and cold water towels on my head and neck and all along my spine. I hide in the bathroom and let the water run to cover the moans. I can't move when it happens my whole spine seems to freeze. I can't sit I have to stand up even though my legs hurt like crazy and don't feel like they can support me. I can't even open my mouth or move my head so I don't understand how some people pace or scream. I will be seeing the doctor on Monday and finally have a diagnostic from the neurologist:CH. I hope we will find something to help me because this is not a life. I pray for remission as I found out from your site that it exists. I also pray God that all this pain, yours and mine may at least be used to alleviate some of the horror that exists in our world. It's a paragon thought but i need to find a reason or some transcendant use for all this incredible pain.
Anyway it is great to have all of you to reach out to and I hope to have better stories to tell you soon.
Thank you for reading me.
This site was a fantastic find for me! Many Kudo's to my kid's bartender in Edwardsville for passing the name along. Sometime I hope I can stagger into your place and converse.
When these first hit, I though I was having a stroke and got ready to die. My doc didn't know squat, but did a cat scan of my brain. They said there was nothing remarkable - how insulting! I ended up going to a brain guy who doped me up with an assortment of his favorite pills. During the last cycle, I had to take a bidness trip to Europe - what a mess. A couple days after returning, I was having one CH starting before the last one quit, and ended up in E.R. Got a shot of something strong, ramped up on protriptylene from the brain guy, and popped his narcotics whenevr the pain started. Spent a month or so loopy on dope, stopped buying cigarettes (I didn't even notice), quit drinking coffee (I didn't even notice), and things finally broke. Vigorous exercise lessened pain, but then I'd get another hit an hour later. Oxygen - as soon as I first felt a twinge - seemed to reduce a notch or two on the Kip.
It has now been a little over two years since the last real cycle. I get occasional 1's or 2's. I still am off the smokes, easy on the caffiene. The next cycle might start tomorrow, or (please God) never. Keep up your support, I'm glad someone else is out there who knows how bad this can be.
what a relief to know i am not the only person dealing with this. for the last six weeks these on and off tortures keep plagueing me. from all the wonderful links i have used on your site and the information found on the OUCH website i feel i have new ammunition for the demon with the icepick in my head - thank you.
My CH's started when I was about 10 or 11...everyone said it was due to "eye problems". I have 20/20 vision and always have. I'm now 42. Just 2 years ago, a neurologist finally diagnosed me to have cluster headaches. Just last night I went to the ER with another one. They'd been quiet for a couple of years. 3 a.m....here we go. Fortunately, my wife has been great with these "monsters". In the ER last night, though, I had a WONDERFUL lady doctor, Dr. Peat. She introduced my wife to this website. She now has a better understanding for this "hell" I have been going through off and on, all of my adult life. Two years ago, these were a nightly thing for months. 3 trips to the ER a week for that magic Imitrex shot. I really appreciate the opportunity to vent alittle and hopefully learn alot! I thank all of you and especially Dr. Peat for being here.
had chronic case from 1991-2001 (no more than two weeks releif). then they went into remission for three years. but , now their baaaaaccccckkkkkk!
suffering from ch`s for 14 years,god i hate them,sometimes imagine somebody is sticking pins in a voodoo doll,and the doll being me!know better now,have found deep breathing and gentle swaying to and fro as well as keeping body cool to be coping method during attack.i also develop incredibly thick saliva in my mouth during an attack which if i don`t clear by hand almost stops me being able to breath,it all together feels like a death mask descending,such are the macabre thoughts when suffering from this cranial torture,it is the most insidious pain ,and i hate it,normally pain is a way of telling your body something is wrong,but with ch,it seems to feel like some kind of divine punishment,it makes no other sense,i mean a headache in the middle of the night when the brain is supposed to be resting?illogical mr spock!i find sleeping propped up in a corner helps too,lying flat seems to allow the blood pressure to build in the head.strength and courage to all ch sufferers who may read this,as george harrison once wrote "all things must pass" dave
hi my name is mark and ive been suffering from clusters for about fifteen years i just finished reading some of the guest board and i only suffer from them at different times of the year and my heart goes out to any body else in the world who suffers because if i had the balls i would have put a bullet in my head fifteen years ago please everybody be strong and ill pray for you mark
I was diagnosed with CH about 7 months ago after many Drs appointments and trips to the ER. They thought I was crazy. I finaly found someone who knew what I had (a blessing). They said that they may come and go anywhere from 2 months to a couple of years. Well, guess what???? There back after only 3. The past week of so they have been about a 6-7. I've been drinking lots of water (like everyone here says to do) and it helps, but today I got the grand daddy of them all. I thought my CH were bad before, this was a 9/10. Lasted for about 1 1/2. My family thought I was nuts, running around banging my head on anything, screaming at the top of my lungs. I sure hope the beast doesn't come back like that again. Thank you to everyone who posts on here, I feel that I'm not alone with this things. I sure hope they find a cure!
i was great to find this sit for iam one off you i have been going through a cycle of clusters for 5 weeks and its waring on me.i have a doctor that does not have a clue about cluster migrains ,and i have to do my own resherch on this.they do have better meds now than 8 years ago when it was the er everday and they though i was there for drugs a shot its come a long way .i want to jion a resherch group to help me with this and to help others i just no i have to live with this and pray to the lord everday for the strenght to deal with doctors that think its all in your mind ,and to give me the strenght to deal with the pain on my left side off my head so iam gald thati have found you bless you all and hope to hear from some off you to better myself in this love you all thank you and god bless
I have recently been diagnosed with Cluster headaches. They began for me about 4 weeks ago. At first I was began waking up at night, same time every other night with extreme pain. I was in tears and scared for my life I was in so much pain. They headaches began occuring more than once at night on a daily basis, to the point where I was really scared to go to sleep. Finally I went to see a doctor who diagnosed me with migranes, of which didn't seem right to me as I didn't have all the typical migrane symptons, so I went to another MD, and he then diagnosed me with Cluster Headaches. I have done a ton of reading on these headaches and although I am presently getting them still, it feels good that there are others going through or have gone through this. It helps to hear other peoples stories and how they handle thier attacks. At this time I continue to have at least two attacks in the night and one during the day. Every attack although just as painful as the last if not more, is very scary for me, as I lay there shaking me legs, holding my head tighter then ever, crying and screaming I say to myself "should I go to the hospital". At this poing I have been unable to find something to help decrease my pain. I am exhausted and hopeless as far as these cluster headaches ever stopping even though I know I will go into remission, the attacks really bring you down taking away any thought of ever having one day headach free. I am so happy to have found this site, it is very informative, helpful and supportive. Thank you.
I am 45yo and have had cluster headaches since the age of 24. I have just started another bout of these things and am so glad to have run across this site. Maybe I can help or maybe someone can help me. My clusters are mostly at nite, usually about an hour into sleep. They start out very slow,,,,, one here,,, one there until about a week into them then they occur every nite at every hour or two for a period of about 5 weeks. Then as if the GOOD LORD said "This man has had enough" They stop,,,, all at once they stop and life goes back to normal. Some of the things I do are ritual sorts of things,,,, such as,,, no nuts,,, they are the enemy,,, no pepper,,, no sour cream,,, no MSG,,, and above all,,,,,NO ALCHOHOL,,, and very limited caffeine. I read the thing about water and am going to do that starting tonight. I truly appreciate that info. I am not into taking any meds because for the most part they only make the headaches worse. I have tried them all and then some,,,, but the one thing that I have started about 2 years ago that has drastically cut down on the severity is magnesium. I bump up the one a day to about 10 or more,,, whatever the number is that gives you diahrea,,, then back it off 1. This came from a naturopathic Chiropractor. I have an oxygen assembly and all I can say about it is that it can help in the shadow stage but not so much once the beast hath reared its ugly self. When I am awakened what I do is this,,, and it really does help cut the time of them down,,, so long as those items listed above have been avoided. I MUST awaken quickly and become alert,,, I take my large ice bag and fill it with store bought ice cubes. I then go into the computer room with the lites off and play a relaxing game,, such as snood or bookworm. I cannot simply roll over and hope them away,,, that only makes then a whole lot worse. My bouts last from 10 to 30 minutes generally but the thing that I cannot seem to do is make them go away an leave me alone,,, they seem to want to plague me for 5-6 weeks regardless of what I do. Thanks for taking the time to read this and I will be back,,, probably every nite now for the next 6 weeks,,,, Pray fome as I pray for all that suffer with this.
Hiya im 22 & ive been suffering from clusters for about 8 weeks but it feels like 8 years i wake up in pain most days & go through the day praying for it to go away and wind up with my head in my hands screaming in pain and cryin myself to sleep my doctors just havent got a clue i might as well go and talk to monkeys? anyway ive found 1 thing that seems to stop the attacks when i first started getting them i noticed i hardly got them when i was outside so i got hold of a fan and when i feel the pain comeing on i sit in front of that and it seems to pass a little bit chilly but id rather freeze to death than put up with the pain if you no what i mean? p.s. if imagran didnt help you then your not alone and if you feel like u need a chat 2 some 1 who knows how you feel go to the ouch website take care Dave.
Hi everyone. I'm a 37 yr old male and I've been in this shitty game since age 19. I was PF for 2yrs and 1 month till 5 weeks ago. I actually thought I had it beat! I wish this site had been around when this all started for me. My history had been pretty predictable, 2 cycles per yr of 2-4 weeks which would peak with k-8's and then reside. This time, after over 2yrs, they started up immediatly in k-8's and have been longer in duration and cycle (5 weeks so far)
I have learned more here in 5 days than in the last 20yrs. Fom mis-diagnosis to trial and error,..been there, done them all,...now it's back to the oxygen. God bless oxygen. I would like to thank the folks who have replied to my forum topics and personal messages, you've been a great help. My prayers are with you all, and more thanks to the creators of this site. I think it's safe to say that you have earned your ticket to heaven. Good luck everyone. Russ
For the last ten years, every second year in September, last normally, 4 a day for one month. This tear 04 lasted one month ( Sept) . Over? No! surprise has reappeared middle of October and still going Nov5/04 "Oh God"
20 years and finaly somewhere to call home. stuck in the middle of another round.
Thank You Bill
Hi, this has been alot of help for me to understand my brotherss cluster headaches, his are chronic right now, and we r all so worried about him that he is going to kill himself, any sugeestions is greatly needed. In the morning we r going to try to admit him in a treatment center, (mental center), because he is suicidle. He has blackouts with his, nothing has seem to help him, docters have givin him about every treatment (medications) nothing seems to work.. Im so worried I see the pain he is in it has taken control of his life and he wants to just check out, and be done with all of this pain. I love my brother please help me..
Hi all. Found this site as my attack seem to have started again so i was having a look round for more info. My headacehs started a few years ago and it took about 3 years till I actually got a diagnosis.
I was working to go to Australia on a back packing tour and was doing some data entry to get some funds together. I had a mild pain in my eye for a few days then, it got worse and worse till it was all I good think about. My doctor kept telling me it was eye strain from looking at a vdu all day. The pain would creep into my eye slowly then build and build. It feels like someone pushing my eye ball out from the inside. It would get worse and worse then just disapear straight away. My eye would sometimes feel bruised afterwards and be red and weepy.
This carried on for 3 or 4 months then just disapeared for almost a year.
It came back with a vengence whilst I was in Oz. At this point it kept waking me up in the night and I just wished I could get back to sleep and block it out.
I had a CT scan which was clear and then it stopped again for 6 months or so.
When I got back to the UK I had an MRI scan which was also clear and still no-one had mentioned the word "cluster headache". The doctors told me it was probably optic Neuritis, which can be a precursor to MS so I was actually sort of releived when a routine visit to the opticians gave me my answer. It tured out the optician did his Phd on the condition so told me quite a bit about it.
Once I new the name I searched for books and internet sites and was so pleased to see I wasn't the only one!The more I read the more I was convinced this was what I suffered from.
It comes on every six months or so now and can last for a couple of months and then dispear again. Its always centred around my eye ( I can't beleive i still have my vision, sometimes it feels like my eye will just burst like a boil. Sometimes I wish it would burst, if it gave some relief!).
Reading some of the stories on this site I am thankful I don't have it as bad as some. I tend to take a lot of Ibriprofen and the doctor has given me some Diclofenac which seems to numb it a bit and makes the atacks less frequent.
Theres is definately a pyschological influence to it though,. If I'm stressed it can bring on a period of headaches,and sometime by trying to really focus and relax I can make them die down.
Horible horible pain though and the word "headache" just dosn't do it justice!
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well im back its been a couple of years since ive been to this site as ive been free of CH for a while now, but they are back again, ive had CH for about 17 yrs now but i do get a break from them the odd year, they usually last 6-8 weeks and only a CH sufferer will know the pain we go through, i take imigran injection which are fantastic but i am taking up 8 in 24 hrs which is very hard to get my Dr to prescrbe, i still dont think Drs are fully aware of how bad this ailment is, i was diagnosed as having migraine for about 13 yrs and was given useless tablets for it, so come all you Drs its about time you took this seriously. the most embarrassing part for me is letting my wife see me rolling around in agony virtually crying out in pain and then an hr later im fine for another few hrs its very frustrating, i usually lock my self away in the bedroom till the worse begins to ease, but this cant be done when you are in work, im only on my 3rd day of this attack and probably got another 7 weeks to go, in this time im starting a new job in 3 days and going on holiday in 11 days so im not looking forward to either of those. please feel free to write if i can be of any help to any new CH sufferers, this site is a blessing cos it just shows you are not alone, good luck to all. trev.
I have suffered with cluster headaches for about 8 years now and am hoping someday they can come up with something to get rid of them because they are the most painful thing and most people don't understand what a person that gets them goes through.
Just found the site and thought I'd register. I'm 56 and have suffered Clusters since 9th grade. It would appear that I'm not one of the people that will "outgrow" this condition. I have alot of empathy for all of you out there who suffer from Clusters. I have taken Verapamil, Lithium & Cafergot daily for 20+ years and I have 5 oxygen tanks. Oxygen works well for me but can make it alot worse some of the time. Does anyone out there have any other tricks they use when an attack starts to abort the 45-90 minutes of pure hell? Feel free to email me at firstname.lastname@example.org I wish whoever reads this the best of luck at controlling their attacks.
THANKS FOR THE SITE. ARE THERE ANY SUPPORT GROUPS IN S.F.?
I started having headaches when I was a child. They weren't the terrible ones that I had as an adult...just the precursors. My mom always thought that I was just constipated! They tried to blame cheese! ha. When I was about 18 I remember my first real killer CH. I stayed up late helping my brother move to college...got no sleep. This was the beginning of the beast. The headaches were worse in the morning on my days off or when I stayed up late and changed my sleep pattern. One remedy I found effective was to use phenergan suppositories to just pass out and go to sleep. This also helped the nausea that usually accompanied my headaches. The final straw was two years ago when a major CH started after a wonderful dinner out with friends. I tried to abort it with the Imatrex nasal spray to no avail. I vomited and screamed for five long hours and ruptured a blood vessel in my right eye. I went to a neurologist in Houston who finally diagnosed me properly and put me on Topamax and Verapamil. I have not had another episode in two years since. I am even decreasing the amount of medication and it still works. I went twenty years without treatment because during a doctor visit for a major attack, the doctor was across town and was two hours getting to me. I was writhing and throwing up in a dark back room when the nurse walked in and asked if I was OK. I could only say "the pain" and she curtly answered "Well I have a headache too!" The doc finally showed up after the pain was subsiding a little, and all he could say was "Well, what do you want?" I never went to another doctor out of embarrassment until two years ago. I am so glad I did. My life is new again...I can even stay up late! It didn't hurt to add a little prayer with the meds! Take care everyone. There is hope.
P.S...Has anyone ever noticed how a CH starts out like a brain freeze when you eat ice cream too fast? Maybe there is a correlation between the greater palatine nerves, sphenoid ganglion, or the esophagus and cluster headaches???
Episodic cluster bouts every few years since 1968.
I have had CH for over 25 years off and on but always attributed them to my sinuses. Never in a so called cycle until the middle of September of this year. After $15000 in medical tests ordered by my neurologist, 1 visit to a neurosurgeon who I will call my hero, the pain finally has subsided so that I can at least get more than 2 hours of sleep a night. He put me on amitriptyline 25mg x1 a day. I have not had one episode since the second dose of the medication. I can still feel the pain if I rub my forhead but nothing at all like it was. I am told this is a new form of treatment for CH. Hopefully this info will help someone else.
By the way I am now 46 years old...did I hear someone say they may subside after 50!!! I can only hope.
I experienced my 1st CH at the age of 9 years old...remember it like it was yesterday...been suffering on and off over the years and now after 4 years of remission, they are back with a vengence. I was diagnosed (properly) in my late 20's and have seen many, many, dr's. Found a great one...finally! I haven't slept (for obvious reasons) for the past 3 weeks for more than 3 hrs without waking to the demon...7-9 on the KIP scale. I am on prednisone, verapamil, the beautiful Imitrex injections, and strong painkillers as needed. I am fortunate to have a pharmaceutical rep friend that provides me with the imitrex, but as we all know am limited in the amounts I can take daily. Suffering with 3-6 headaches a day...but seem to be subsiding...THANK GOD! I have found ice packs (with no towel wrapped around it) and believe it or not being held and comforted by my wonderful husband helps at times. The two things I wish for is another name besides "headaches" attached to this demon, and the other is that I don't hear one other person say to me "I know how you feel, I get migraines too!" Good luck to you all and drop me a line if you have any "words of wisdom" to share!
Been suffering with what i thought, and what 2 doctors had told me was Migraines, i finally got to see a neurologist this week, he diagnosed me with suffering with Cluster headaches. I have been suffering since i was 15, i am now 27. Before this week i had never heard of these and my doctor has been telling me they are cluster migraines. My last episode was in June, and lasted for 4 weeks with 6 -7 attacks per day, the worst attacks being at night. I have never felt pain like it, i had to stay with my parents in the end because the boyfriend couldnt cope with me crying all day and night and pacing the house, and he just didnt now what to do with me. This time was worst than ever before, i didnt want to wake up, the pain was so intense i just wanted to die! 2 weeks into the cycle Mum took me to A&E because she couldnt bear to see me crying and literally banging my head off the wall, they told me again it was migraines, told me to continue taking my diclofenac, pizotifen, amitriplyn,and imigrane nasal sprays that the doctor had prescribed me at the start of the cycle. I ended up taking upto 12 tablets per day with no relief. Into the 3rd week of the cycle, they gave me imigraine tablets in a high dose and i could take up to 4 per day, these did give me relief, but by the 3rd week, the pain was still intense, but was nothing compared to the previous weeks, i think the only reason they gave me relief was because i was near to the end of the cycle. I dont think they would work when the pain was at it worst. My doctor just said 'i really dont understand how all these tablets that you are taking arent working', i left the doctors crying, not even my doctor new what to do! ( i have since changed my doctor) I only found this website because i needed to find out more about CH as i had never heard of them, and this was the first site i came accros. When i started to read other people stories i started to cry, i dont know anyone else that suffers from CH, and when you try to explain the pain to someone that doesnt they just cant understand how a headache can be so painful. The attack previous to this was just over 2 years and before that 3 years, every time they come back they last longer and are more painful. I am so glad that i now know what it is, and i am not the only person who suffers, i just wish that there was a cure, i cant imagine suffering with these for the rest of my
life:( I am now going to spend as much time as possible reading this website, and finding out all about CH and what medication is the most effective so that i know what to ask for from my doctors ready for my next attack, which i hope to god wont be for a long while.
Just wanted to say that I am so glad that a site like this exists and that we are not alone. 0.1% of the population should make us feel special but I don't get any relief from that. I do, however, find comfort in the answers that I have found during my CH search today. I know that the symptons I have been describing for nearly 15 years are real.
It helps knowing that there is help out there even if it won't stop the pain. It also make explaining this to friends and family easier when I have more facts and information. It's nearly impossible to make people understand the pain and agony. All they see is one eye crying and don't feel what's going on inside my head. It makes me want to scream. I look like a poor little autistic child curled up, rocking back and forth and banging my head - hoping to knock the pain out... each time thinking it's the one that will kill me... I just know it.
So, from one Cluster Head to many... let's toast to being pain free for however long it may last and to an eventual cure.
I just found this site today and think its great. My headaches were in remission for a few years but they suddenly came back this month. Today was a bad one....having 4 episodes. Reading through some of the stories on this site I realize I am not alone.
I am so happy. I have been alone with these headaches since I was 14. I am 27 now, and the aches have only deepend in pain and intensity. I am an episodial CH, I have been pain free for 3 years and 4 months. I have done nothing to create this gap. Since 14, the gap inbetween episodes has increased, but the episodes themselves have increased in Kip pain. I sit at a 8-10 now on the Kip scale. I do not feel sucidle (thank goodness), but depressed. Thank goodness for this site, for I have met wonderful helpful people and I am learning much about my pain.
I thought I was all alone in this hell.I am new here,and it's nice to know there is support.I was diagnosed with migrains,wrong.I just started a new cycle last week after a pain free year.Lucky me.I'm thankful for this site and will be here a lot.MAKE IT STOP!!!
Just wanted to say hi to everyone. Have had these damn things for over 30 years. I also do not know anyone who has had them other than myself. Oh lucky me. My style, to get something that nobody knows anything about.
My biggest gripe is that if you do mention something about these things they come back with oh yes "I have migraines" and they are the worst. Yeah right. Guess thats why all the research is on migranes because they are so common and so bad. Nothing against those type of pain, but let them have one of ours and see what happens. At least they can sleep with theres, they have warning that they are coming and have medications that will help them. What do we have? Each other and alot of pain filled, sleepless nights to contend with.
They havent a clue about clusters. I just went to another nero 2 weeks ago, I actually had to pay him to tell me I have cluster headaches. Yeah right, now do i get my money back?
He also told me, they will not go away, they will get no better and no, "There is no cure." Told me would just have to live with them. Maybe one day Dear God they will fid a cure. Just hope its not too late. Maybe one day they will look for one for us. Just maybe.
Until then, thanks for this site and hope to be talking to you all often in the future. My cycle ended just 2 short weeks ago. So for now, I am pain free. Just pray for a long time inbetween now and the next couple of months from hell. You guys all know them, the time we pray to just go ahead and die cause if I dont, I may help it along.
If anyone wants to talk will be glad to relate to them and try to help as much as I can.
Until later my friends, Im gonna back off for now. Will catch you all soon.
God Speed to us all and may we always have the wind on our backs and the sun in our face.
Thanks for the website chaps. Nice to know you're not alone when rocking back and forward, banging your head on the floor at 2am waiting for the ambulance to bring the oxygen!!
Almost 3 years without any CH - after having the headache for 20 years. Hopefully thats a good sign. But now the devil is back, but a little less painfull - i think - or wish - or hope? 3 years, 3 lovely years. I dream of 3 more years without CH, or maybe 5....why not? Maybe its the end of the headache, maybe i'm starting a new life? Ohh yes, but i just have to end the headache this time, and then....
I won't stop dreaming, someday my dream come through.
After one and a half years of walking in circles like a maniac and trying every drug on the market i finaly get
oxygen at home now life has started all over and keeps getting better there is hope....
right in the middle of headache season i had gone 2 years and 2 months with out one
Cluster Migraine properties for 11 years. Be there done it God bless all
ok itís me .itís time to pick my brains again. well what's left of it .you all need to see what's in my mind.
letís see maybe itís .could be well you all know on my mind. A F-CKEN CURE FOR CH.well in my case
and only my case no pills have worked and when they do they work for the first week and that all and i
tried them all. the only reason i take pain killers is so i can step out the back door. or beam me up .you
all know what i mean just thinking about CH make me take them o well time to go for now be back soon
i have more to say a lot more .so good luck everyone stay strong we will beat that beast
ok itís me .itís time to pick my brains again. well what's left of it .you all need to see what's in my mind.
letís see maybe itís .could be well you all know on my mind. A F-CKEN CURE FOR CH.well in my case
and only my case no pills have worked and when they do they work for the first week and that all and i
tried them all. the only reason i take pain killers is so i can step out the back door. or beam me up .you
all know what i mean just thinking about CH make me take them o well time to go for now be back soon
i have more to say a lot more .so good luck everyone stay strong we will beat that beast
Nice site. Easy to use.
I am 34 years old have been diagnosed with having a cluster headache. I have had it now for about 5 weeks without any break at all except when i sleep, then when i wake it seems worse than before.Ihave spent over week in hospital where they could do nothing at all came home was first given immigran (for migranes)which didnt work then given co proxamal,metoclopromide,diclofenac and amitriptyline which made me sick. i was told to stop taking all but co proxamal and was give verapamil all this has done is increase the headache and made me breathless.since having this headache it feels as though my head wants to implode and at best just imbearable, i havent got the stage of crying yet but have been near there on a number of occasions and i type it seems to be getting worse. I am unable to work at the moment due to the pain,the blured vision and the pills i have been given .Finding this web site have been a help nowing that im not alone with this.
Hello im not sure what to do my husband is in the hospital now with what they are saying are cluster headaches. hes been having headaches for two months now but the past week they have been constant with no relief. The meds they are giving him aren't working and hes gotten so distant it scares me. hes afraid to sleep. they gave him meds to just knock him out finnaly so he would sleep. is it ever going to stop I don't know what to do and im scared
I was just told about this site 2 days ago. I have been suffering 10+ years with this. I go through a cycle every 2 years like clock work. I am a little later this time around. I thought that maybe just maybe they weren't coming this year. I was so wrong. They woke me up screaming WE'RE BACK. When I went to this site for the first time and read the stories, I cried. I was so relieved that I was not alone and that Someone out there actually knew what I was going through. The absolute fear that a sunset brings, etc. I thank you for being here.
I'm 31 years old and I have been suffering from cluster headaches for 14 years.My yearly attacks began again last night.