Cluster Headache guest book
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The response to this website has been so fantastic, I've had to seperate some of the messages. There were so many wonderful posts from suffers around the world, that it was taking entirely too long for the page to load.

Below are the guestbook entries from October/December 2002. 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 am a 35 year old male and have been suffering from clusters since 1985. I have had a 2 year break from these damn things until 2 weeks ago. They are back and seem stronger than ever.
Todd Okray <>
Stevens Point , WI USA
Tuesday, December 31, 2002 at 18:59:47 (EST)

Happy New Year! Tired of unchanged resolutions? Jesus Christ is the only way. "Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!" 2 Corinthians 5: 17 NIV. Romans 3:23 NIV says "for ALL have sinned and fall short of the glory of God". "God will give to each person according to what he has done. To those who by persistence in doing good seek glory, honor and immortality, he will give eternal life. But for those who are self-seeking and who reject the truth and follow evil, there will be wrath and anger. There will be trouble and distress for every human being who does evil. "Romans 2:6-9NIV. The Son of Man will send out his angels, and they will weed out of his kingdom everything that causes sin and all who do evil. They will throw them into the fiery furnace, where there will be weeping and gnashing of teeth.Matthew 13:41-42 NIV. HOWEVER, THE GOOD NEWS! John 3:16 says God loves us so much that he gave his only son so that we may have eternal life. " ...If you confess with your mouth, 'Jesus is Lord,' and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you confess and are saved." Romans 6:23 NIV"For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord" Romans 10:9-10 NIV. "If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness."1 John 1:9 NIV. Have you accepted Jesus Christ as your personal savior? Jesus is the ultimate healer. He healed the blind, raised Lazarus from the dead, and cast on many demons from the sick that were being oppressed by the devil!
Tuesday, December 31, 2002 at 16:27:35 (EST)

I've been suffering from migraines for over 10 yrs and in the past couple of weeks my headaches did a 360 degree on me. The pain is 100 times worse and this new headache is just different. Several times I almost went to the ER, but then the pain would go away (my migraines last hours even days). My Meds did nothing for me. I thought I was going crazy. My doctor said it sounds like I'm having Clusters & he explain them to me. Since my headaches have changed he want to make sure that nothing else is going in my head, so I'm having an MRI in the next couple of days. I just know there is a big difference between the migraines I've had in the past and these new headaches(Clusters or not). I always thought migraines were the "Biggies" of headaches until these babies got a hold of me. The first few times I thought something burst inside the right side of my head. I crunch numbers for a living, but when I get one of these headaches at work the only thing I want to crunch is my HEAD. I'm very scare Please help! Dorothy
Dorothy Gines <>
Long Beach, NY USA
Tuesday, December 31, 2002 at 13:45:57 (EST)

This is the most informative site that I have been to. I've suffered for so many years and had doctors treat me as if I should be happy I'm not "really" sick. I've been told it's all menopause, been taken off of estrogen (which was supposed to "cure" me) and made to feel as if I have no reason to complain. I've just lived with the headaches and suffered alone rather than try one more condesending, uninterested physician. Thank you.
Sharon Booth <>
Monroe, LA USA
Tuesday, December 31, 2002 at 08:52:42 (EST)

Dear Clusterheads, I have been suffering wiht this BEAST since 1969 off and on..I have had reprives of 1 year headach free-- 5 years---and 8 years. Each time I thought that the BEAST was gone forever and to my dismay the BEAST always returned. Thru the years I have tried everything== somethings would work for awhile but the Beast would eventually render every medication useless. I have lost family, friends, great jobs and everything dear to me..I now have a beautiful wife who is trying so hard to understand but the BEAST in me is driveing her NUTS and she is trying to hold on. You see when I get a CH I have to move and I will drive around ( all night sometime ), because when Iam in one spot being still they really hurt me and I can't stand anyone asking me questions or touching me and this is what people usually try to do to be helpful --so I drive around to be alone and when the pain get's really bad I will find a park and sit for awhile and walk (when I can) and then drive some more..this might go on for a few days..I sometimes have as many as 10 attacks a day. My wife really gets upset and can't understand why I want to be alone and she feels that Iam doing this to get away from her...that's not the case because I love my wife very much and we have been married for only 2 years. She ask what could she do to get me to stay home when I have an attack..I told her that she must leave me alone talking , no touching, rubbing--just let me work my way thru this but when I scream in pain she is all over me and when I quite down she is asking my question after question---she tells me to try the thing's that I have been trying for years and can't understand why I will not take the medications that the doctor has give me over and over again..I had one of the top 5 neruologist in the country to work on me. I have been to Indochronologist, Nerologist,ENT,Special Dental schools, Special Eye Doctor's, spent time in over 12 hospitals with these headaches. I have had CAT scans, EMG (OUCH!!),MRI,Dye injected into my spine, and every medication Ive seen listed on this site. I have spent well over $200,000 out of my pocket to specialist trying to find an answer to this pain and I still don't have an answer. There is one thing that works but it is illegal and I refuse to go down by useing ...well...drugs!!!! I will not name the drug because I would not want anyone to get tempted to try it because after being 10 years clean it is still a temptation for me to use it to get rid of the pain..I will live with the pain first but it is like haveing your hand on a hot stove and not being able to take it off ... but knowing something that will take it off...don't worry though because I will not USE!!! My holiday has been destroyed because of my headaches and as tired as Iam I will not give UP or give in to the BEAST. My wife and other family members tell me that they understand what that the pain is bad but there is no way they can understad without haveing the pain (and I hope they never have it) but they can't understand why I can't call them or use common sense while Iam in Pain--I try to explain to them that it hurt's to bad to call or think straight and they say but you only had a headach (yeah Right!!) and that I should be able to at least show some respect to those who care about me and call or something... From the beganning when I was not in pain --I explained this BEAST to them and told them how I would react while in pain--I can't think about anything but the pain..maybe that's very selfish of me because it appears that I only think about myself when Iam in pain.. HELPME!!! Does anyone else ride around (I only drive while the Beast is takeing a break), bang thier head on something,scream,have all your teeth to hurt at the same time (and I have perfect teeth), sinus pain, the feeling of pins being stuck in your eye, does it feel like your hair hurt,and other pains that I will not mention while the Beast is around . I feel that only GOD can Helpme and I cry out to HIM HELPME!!!
Helpme <>
Bakersfield, California USA
Tuesday, December 31, 2002 at 05:16:31 (EST)

Been suffering for 4 years now but dont get a break. They are twice a day and if I get a day off its a good thing. Had sinus surgery and consulted a nurologist for 2 years. Only thing that seems to help is Imitrex injections but cant get enough for even a week never mind the whole month. Just found out about oxygen therapy as an abortive option so Im gonna look into that. I also heard some good things about Hyperbaric oxygen treatment as a preventive measure
Michael <>
Pompano Beach, Fl USA
Monday, December 30, 2002 at 17:28:37 (EST)

I have entered this site many times, and have benefited on each occurance. Perversely, I have noted in reading these posts and while sitting many times in emergency rooms that there are plenty of people with bigger problems than mine. I was diagnosed with chronic cluster headache in March of 1999. Since January of 1999 I have been in constant pain. My head hurts and my ears ring 24/7, but everything about my health seems normal. Blood pressure, CAT scans, MRI, EKG, spinal taps, nuclear cysternograms and many other witch-doctor type stuff all report a normal guy who complains of pain. It took two months for my HMO to get me to a nuerologist who would say it was a cluster and not some form of epilepsy. It took two years before my wife and I found a doctor who took the time to listen to us and finally come up with the cocktail that would give me relief: verapamil, lithium and keppra, in very large amounts. In those two years I suffered horrible headaches about every three days. Because I had so many sick days, my boss decided I was unwilling or unable to work and I had to watch my career go up in smoke. We spent ourselves in to oblivion, our marriage bent but did not break, and I practically lost my faith. I think what has helped most is to accept this "new" me. That old healthy guy is dead. This new guy can have wonderful days, but allowing myself a bit of depression or getting stressed out with bills, kids or anything else will surely bring an icepick that can easily penetrate my medical defenses. Finally, I had to accept that many many of you had worse headaches than mine, many others had worse illnesses than mine and much worse lives than mine. It helped me get going again, so I could try to actually live instead of waiting for the next inevitable headache. I have to believe that just as there was finally a doctor who would listen to me, there will be one for you. Since I now believe that headaches are intensely personal things, I encourage you to try anything that may offer you hope, but I urge you to take your meds! Finally, you are all very interesting people who happen to share an illness, but we are all much more than that illness, and the posts of hope here at this site show us that we can live with this thing and through this thing but "cluster headache sufferer" does not even close to defining us.
Tom Daniels <>
Peoria, AZ USA
Monday, December 30, 2002 at 14:38:20 (EST)

i also know how you feel, but think of it this way at least you dont have aids or cancer.
joe eusebio
Sunday, December 29, 2002 at 20:04:53 (EST)

I see thier are a lot of others out there that have mind bluring times. Does any one know of a Acuscope or something like it.
Bill Bradford <>
Louisville, CO USA
Saturday, December 28, 2002 at 15:19:03 (EST)

I found this site looking for information on homeopathic medicine and lithium, this for a different condition all together. I found a post of someone who reported success using this combination. I had no idea what he was talking about so I started reading through some of the other messages. I had to stop reading to stop crying. No I do not pity the people who live with cluster headaches. I admire the way I hear you living, going forward, amidst the unbearable. I have bipolar depressive disorder. I rapid cycle and am very hard to medicate. The only comparison I draw here is that I understand not knowing what the next moment may bring. I know what having the rug pulled out from under your mind feels like. Mine happens without the physical pain. According to some of the post some of you experience this because of the physical pain and exhaustion. This is why I cried because in a way I do understand the anger, frustration and all that goes with trying to find a treatment that helps. Let me say first that I follow what my doctor tells me to do. I take my medicined but there are times when that has not worked because they have not found exactly what works. In those times I have received some help from Reiki. Reiki (pronounced Ray-Key) is a method of natural healing based on the application of Universal Life Force Energy (the name Reiki literally means Universal Life Force Energy). There are credible Reiki professionals almost everywhere. Through Reiki I found help, peace, comfort and greater calm. I eventually became a Reiki Practitioner for 2 reasons. Now I can Reiki others and myself too. As is something that may bring relief to someone reading this. Please let me know if you try it and it helps.
Saturday, December 28, 2002 at 12:20:10 (EST)

Geeesh, I'm so happy to know that there are others who suffer from what I believe I suffer from. I guess misery, or in our case, pain loves company. This is my first attack after eleven years. Back then I thought I was just stressing, After all I two girlfriends and taking intermediate thermodynamics for a third time. My headaches was so bad that, at least four times a day I would have lay down for fifteen minutes or more to recover. I had the "neuro quacks" do me for a a pleasant spinal tap to no avail. Today, I'm getting them again...just the one-eyed-jack special. Of course my intellect (or stupidity) tells me not to go to a doctor; what do they know. Surely not my pain.
Troy Joyner <>
Upper Marlboro , MD USA
Friday, December 27, 2002 at 23:03:13 (EST)

Hi all. Just wanted to say that I'm so glad to have stumbled onto this site. I was awake all night lastnight with a crushing cluster. Today, that nerve on the side of my head just feels raw, sore. I am so tired and down. These are really taking a toll on me. I was lucky to have a 5 year break in between cycles --- thought I might have "out grew" them or something. But they're back in full gear. I was hoping to hear back from any of you. It's great to have found a place where people understand that you can actually "give birth" thru an eye!!!! Thanks, Nanci
Nanci <>
Schererville, IN
Friday, December 27, 2002 at 12:56:31 (EST)

Hi all. I've had a 5 year break, thought I "out grew" them or something, but they are back now with a few new twists. Before, I could count on them being gone within an hour. This morning at 12:21 a blaster hit and I was still praying and pacing at 2:30. Anyway, I just wanted to say that I'm so happy to have found this site. I don't feel so alone anymore : ) Nanci
Nanci <>
Schererville, IN USA
Friday, December 27, 2002 at 00:22:15 (EST)

Hi. I had my first attack about a month after I delivered my daughter in 1990. I had no idea it was a "headache" as the pain always felt like it was in my teeth. I went from dentist to periodontist to Ears, Nose Throat specialists until I finally ended up at the Neurologist (approx. one year later). Shortly after, the clusters disappeared. I thank my lucky stars that I was over the "experience" with pain worse than childbirth (I did have one visit to the ER). Mostly I screamed and took any available medication. About 2 weeks ago, I experienced it again. I will be calling the neurologist tomorrow. For the last year I have been on/off prosac, zoloft, celexa for PMMD. In 1990 I wondered if my attacks were hormonal (due to childbirth) and now wonder the same thing (between being 41 and all the various medications). I dread the thought of going thru this again :(
Robin Tobias <itsacluster_again>
Souderton, PA USA
Thursday, December 26, 2002 at 23:00:31 (EST)

I suffered with cluster headaches for 3 years. I have now gone 42 years and not had a full blown one. At the first signs of one I apply pressure to the back of my neck and it goes away. This usually takes 2-3 minutes. I started to get one last week but the pressure worked as usual. I wish all of you luck with yours. The pressure works for me. bye, terry
Terry Chancey <>
Troutdale, OR USA
Thursday, December 26, 2002 at 06:28:22 (EST)

I am a 38 year old male, my first bout with cluster headaches was a year ago while on vacation. I had no idea what was happening to me. When I returned from vacation I went through a battery of tests, and was diagnosed as cluster headaches. The doctor put me on steroids for a few days, and gave me a prescription for Butalbital. After a few weeks, the headaches went away and I felt great. A little more than a year has passed and they have started again. My attacks are at different times of the day this time and I am looking for help.
Stephen Maffei <>
Mantua, NJ USA
Wednesday, December 25, 2002 at 15:11:02 (EST)

I want to say hello and reccomend everyone use Nardil. It is a miracle drug!!!!!!!
Wednesday, December 25, 2002 at 07:09:19 (EST)

Sorry, I forgot to leave my e-mail address. Dawn Wisser
Dawn Wisser <>
Monday, December 23, 2002 at 23:03:04 (EST)

I don't know if I'm on the right site or not. My son is 5 years old and has been suffering with headaches for as long as he was able to tell me that was what was ailing him. He always holds his hand over his right eye/temple. He cries, whines, rocks and sometimes bangs his head. He yells over and over, "It hurts!" I was thinking migraine but recently became aware of cluster and now am not sure. I have had him in for MRIs, x-rays and cat scans. The doctors tell me there is nothing wrong. He seems to have them for a few days to weeks and then they go away. I can't seem to find a pattern for when they will come. He hadn't had them for many months and then he started again in Sept. He was getting them every day, but usually only one. They normally go away after about an hour, but I thought it was because of the Tylenol/Motrin. Many times he will throw up after I give him medicine. He was a forcep delivery so I recently tried a chiropractor. It seemed to work miracles. They stopped almost immediately after treatment. Then they started up again. So much for my miracle cure. Are there any moms out there with the same problem? It is so hard to watch your little one in pain. I just don't know what to do for him.
Dawn Wisser
Monday, December 23, 2002 at 22:31:31 (EST)

I have read several stories which remind me of years past. Last year I changed the way I handled the beast and I would like to share it with you all. Until reading some of the stories I had almost forgot what it was like then for me. Now here is what I do each night for about 6 weeks a year. When I feel it coming on (if I can catch it in time)I walk calmly (sheilding my eyes from the painful light) to the bathroom and draw a very hot bath. Remaining very calm (repeating quietly "back off...easy now" (that doesn't help but I do it anyway) I sit with head between my knees splashing water on my face until i feel I can relax a bit more and then i lay back. Generally in 30 mins it is gone. Never becoming a full blown 10 (as I call it)I will do this 4 to 6 times a night. I hope and pray someone who reads this will try to remain calm and get in a hot tub and find some relief this way as well. The only way it works for me is if I can catch it before it reaches what I call a level 3. If I am sleeping to hard and I dont catch it in time then it becomes the full blown monster. Last year I was able to catch all but 1 in time. This year I missed 1 two nights ago, hopefully I will catch the rest in time. So go soak your head.
Steve Clark <>
Monday, December 23, 2002 at 01:09:34 (EST)

This is a wonderful site. I have suffered from migraines, sinus and cluster headaches since I was in my early twenties. I am now in my 70's and am happy to say that over the years these headaches have seemed to lessen in intensity and duration as well as in occurances. I do believe that they were mostly caused by stress and tension. I never found anything short of getting a shot that put me "out" ever helped me, and some of the medications actually made the headaches worse. I hope and pray that someday there will be a cure for these headaches that will work fast and the results will last long. There has to be a cure out there somewhere!
Carol Enyeart <>
Oak Harbor, WA USA
Sunday, December 22, 2002 at 15:52:47 (EST)

I want this not to be a story of despair (which understandably is often the case with cluster) but rather I would wish that it might provide hope and encouragement to some. My story, I was 34 and a Captain in a major airline in Australia, I was ambitious and bullet proof. I was divorced and my three children were living with me, it was hard work but I could afford the nanny and I was loving my life. We were all very happy. I then began to suffer from cluster headaches, this is not something which can be swept under the carpet, I thought I had a brain tumor. I was lucky enough to be sent by my doctor (a good friend) to a neurologist who had done headach research with Prof. James Lance ( a world leader in cluster headache)and Prof. Lance then took over my treatment. The ramifications of cluster on the flight deck are obvious and so I lost my medical certification and my career. I spent the next three years suffering around 4 to 5 bouts of cluster every year ( each around 4 to 6 weeks) and feeling very sorry for myself. I lost my family, my income and my house. I then relised I had to get over this, I began to study and although the clusters made it hard, with the understanding of the university I was able to complete my MBA and began my own consultancy which has proved to be very sucessful. I have remarried, ( to a wonderful, undrstanding and caring woman, who although often confused is coping with and working to, understand cluster.) We have recently had a baby boy and my three children from my first marriage are living with me again. I have built a new home and was recently appointed CEO of a medium sized (250 employees) civil works company. Please don't missunderstand what I am saying. I am now 40 and have lost many thind and not a few years to this thing. I understand the completely debilitating nature of this disease and the desperation which you feel when having an attack. I despise my oxygen tank, that constant reminder that I have this disease, I hate taking my medication, I grieve about the fact that often my choice is pain or feeling half drugged. I stll get very depressed at times and still want to die when I am having an attack. But I won't die!! thats the point. Pragmatism is not a bad trait I will and must live because the greatness of my life and family and freinds far outweighs this thing. We may never win this war but little victories will make the pain that tiny bit more bearable. . Continue to investigate the latest treatments, stay involved with groups like this wonderful web site but don't let this thing win, fight and live inspite ( or if you like just to spite) it.
Sean Agnew <>
Sydney, NSW Australia
Sunday, December 22, 2002 at 14:36:03 (EST)

thank you for this site.
gentry mcmanus <>
houston, tx USA
Sunday, December 22, 2002 at 02:47:08 (EST)

I had really bad cluster headaches for a long time and Iused to get on this site to try and find something to stop them. Nothing seem to help. My doctor put me on imitrex nasal spray and that helped some. I finally went to the health store and they recomended that I take Solaray-Mega B-Stress timed release supplements, 3 per day. After 3 days my headaches stopped and I haven't had one for 11 months. I hope this helps someone else. Let me know. I don't sell these and maybe another brand would work. good luck, Jay
JAY <>
La Junta, Co USA
Friday, December 20, 2002 at 01:38:00 (EST)

my husband is a CH suffer. He is 40 years old and has been suffering fo over 20 years. Nothing seems to relief him of the horrible pain. I realize we are not alone. Any input would be greatly appreciated. Let's make a difference!!!!
Laurell Amedeo <>
Rochester, NY USA
Thursday, December 19, 2002 at 21:39:33 (EST)

How do I join your group?
don myron <>
St,John's, NF Canada
Sunday, December 15, 2002 at 19:55:03 (EST)

I just found this site and I am so happy to know that there are others who go through the same thing. As I read the other entries I tthink, "Shoot, that's exactley how I feel". I just feel like crying and banging my head against something. And since I have an AWFUL time sleeping it makes the headaches worse........I HATE IT!!!!
Mike Betchel <>
Fresno, CA USA
Sunday, December 15, 2002 at 16:07:10 (EST)

I had been a cluster sufferer for at about 15 years. It started somewhere around 12 or 13 and pretty much stopped after I was about 28. I had been to doctors, hospitals and no one understood or could help. The folks at U o M understood though and recommended MHNI. But at the time I was in the throes of pain and did not hear. My uncle suffers from them chronically and told me about MHNI in Michigan. I went there and it was expensive, I was about 26. They put me through the rigors of tests and then gave me a chemical cocktail that I took for about 2 years. A Combination of Prednisolone, Verapamil, Cafergot, ergotomine, indocin, thorazine and some others. I remember getting my scripts at the local pharamacy and thinking, the guy thinks I'm schizophrenic. But after about 1 year on the scripts, I could sleep through the night. I would get some break through headaches here and there and when I finally went off of them, I was free. I've been free for about 12 years. Can it be? I suffer now from migrane Aura's but no pain. I still get twinges in the right side and still live in fear that they will resurface. So far so good. I am grateful for those people at MHNI. I remember when I called they said it was an 8 week waiting list. I said never mind, I will be dead by then. They got me in within the week. I was ready to die. I would suffer 4 to 6 at night, with the occassional one in the car on the way to work. It was pure hell. I would scream, cry, writhe, bang my head and finally resign myself to the torture. My right eye would swell, my eye would weep and my nose would run. I would use scalding hot water bottles on my right eye area. No one could help me, least of all myself. I tried biofeedback and imagining myself in a better place called heaven, but suicide would not get me there! It makes hellraiser seem like a cakewalk. I'm sorry for all of you whom have no relief. I don't know why I have been lucky, to be free, but thank god I am. I made some changes in my life. I don't schedule to much to do. I keep my life simple. I do not take any recreational drugs anymore. I do not drink much, maybe once a month. I get plenty of exercise and eat rather healthy. I voice my anger, I don't bottle it up. I don't rush anything.( Something I learned from the ch. because you can't count on being on time and I think it exacerbates the pain.) Maybe they should do a study on me. Why are they gone, maybe something changed in me, or I did something to change the course. It could help my uncle who is utterly chronic and depressed. Just wanted to let you know though that at least one of us is free and maybe it does not have to be a life sentence. Good luck to you all. I will keep tabs on you. I don't want to lose touch with this site. It may be that sometime I will suffer again.( I certainly hope not!)
Lisa Dawson <>
Saline, MI USA
Saturday, December 14, 2002 at 14:40:05 (EST)

My best friend has just been diagnosed with cluster headaches. Because I have lived with a severe physical disablity all my life, I am somewhat better prepared to understand his condition, but fortunately my life has been pain-controlled. I'm not sure how to help him.
cbsues <>
Lake Saint Louis, MO USA
Saturday, December 14, 2002 at 13:52:20 (EST)

Hello all, Today Iím happy to share with all of you, (who like me have suffered or are suffering from cluster headaches) about my current discovery of the use of negative ions to control the Serotonin levels in our systems. A little history about me is in order. I have been suffering with migraine since I was ten (54 now) and suffering with cluster headaches for 9 years. Generaly my cluster headaches start around December or January but I have pain in the back of my neck and top of my shoulders for about 2 months before the headaches realy start. I believe now that it is part of my cycle which lasts any where from 5 to ten weeks at a time with pain on the kip scale of 7-10 one to three times a day. I sleep during the day while I have been working nights for 26 years. I am writing today because I have allready gone thru the pain cycle in my neck and I have not yet started my cluster headache cycle this year. As a matter of fact I have not had any pain for about 2 weeks. I feel very good at the moment. I have recently purchased 4 room IONIZERS to put negative ions in the air I breathe. I have done extensive research on the web about the benefits of negative ions and health. Even though it is still early to tell how much I can benefit from this. I believe it is keeping my Serotonin levels in check and I am free of headaches at the moment. I do take alot of different medications and I have been on zoloft for a year and a half for depression. I included excerpts from two different web pages which may give you an idea of what I have found. I hope no one minds that I posted these. Everything I have read now makes sense about the air Quality and feeling sick in a closed up house in the winter. I believe it is what is helping me at the moment and I am willing to try almost anything to fight getting these horrible headaches. This is not advertising but I did buy 4 Surroundair Neo-Tech air ionizers.They seem to work very well. I would be happy to talk with any one interested in my results. Jay Green When there are too many positive-ions in the air our bodies produce an overdose of the stress-response neuro hormone "Serotonin" in our systems (the chemical that initially helps us sleep and exerts anti anxiety effects, produced from L-tryptophan). Serotonin was the newest discovery, first "found" in 1950, it is one of the more powerful of the neuro hormones produced by the body, causing significant physiological changes, and has a massive effect on the nervous system as well. Serotonin is our body's response to threats that we can perceive through our senses. Emotional stress seems to produce it too. An excess of positive-ions causes the overproduction of Serotonin in mammals and that, initially at least, causes hyperactivity which rapidly leads to (biochemically speaking) exhaustion, anxiety and perhaps depression. Neg-ions, a product of nature that have no known harmful side effects, do the same job as chemical tranquilizers that do have side effects, not all of them desirable. Serotonin is not found in the urine of "normal" people except when they are under considerable emotional stress or anxiety. "Serotonin irritation syndrome" includes; hot flashes, irritability, sleeplessness, pains around the heart, difficulty in breathing, a worsening of bronchial complaints, irrational tension, and anxiety. It is clear that those of us who are ion sensitive are more likely to produce overdoses of Serotonin in our bodies and this explains most, if not all of our problems. Acute Migrannus Neuralgia, or Horton's Migraine, is one form of migraine - there are seven or eight known of - that turns up in men as often as it does in women. The connection between Serotonin and migraine seems obvious. The Serotonin Irritation Syndrome is defined as a significant disturbance of normal nervous system activity and/or the malfunction of various metabolic processes which is characterized by abnormally high levels of serotonin (5-Hydroxytrlptamine or 5-HT, a highly active neurochemical) in the human bloodstream1,2. The direct effects of poor air quality in causing sudden excessive release of serotonin into the bloodstream were first discovered by Krueger3,4, and subsequently verified by many other scientific investigators5,6,7,8. It has also been found that a number of other biochemical systems are also affected adversely (e.g. catecholamines and other amines, prostaglandins, thyroxines, etc.)6, but since the change in serotonin levels is the easiest and fastest to measure, the variety of individual reactions to and symptoms of poor air quality (which include headache, asthma attacks, slow thinking or even fainting spells due to reduction of blood circulation in the brain, heightened sensitivity to pain, moodiness and emotional irritability) are generally lumped together under the clinical term of Serotonin Irritation Syndrome. Whatever form it may take, this SIS phenomenon is triggered by an excessive number of positive electrical charges in the environment, whether stationary (static) or carried by minute gas molecules or particles (positive ions).
Jay Green <>
Holliston, MA USA
Saturday, December 14, 2002 at 08:28:07 (EST)

Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. Itís not a miracle, but itís been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on ďredirectingĒ blood circulation in order to retard flow to the head. This is done by trying to ďsendĒ blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, itís very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. Itís important to keep at it THROUGH the pain. This will be difficult, but itís the only way this technique will work. Donít let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, itís very hard to focus, but I think itís always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand
Charlie <>
Jamestown, NY USA
Friday, December 13, 2002 at 00:41:57 (EST)

Just wanted to say that there is something to the Water X3 treatment. I have noticed a large reduction in the intensity and duration of my Torture since using the water X 3 treatments.Thanks for the tip. Rick
Rick Martin <>
Maryville, TN USA
Thursday, December 12, 2002 at 17:32:22 (EST)

I'm presently nursing my girlfriend for cluster head aches and have found that face towels moistened and heated in the nuk for 1 min. on high helps alot, some times I have to alternate hot towles with small water bottles frozen. She's presently on predazone and that sometimes helps, but not this time. we've searched all maner of pain clinics and it was amazing how many nuroligests have never heard of cluster head aches. One nuroligest wanted to byopsie the artery at the temple regon,,NO WAY was I going to allow that to be done, they claimed it would tell them if she was having clusters or not when you could clearly see she had'm. her web addrss is any other advise is welcome.
Bear Hughes <>
Las Vegas, NV USA
Tuesday, December 10, 2002 at 23:02:53 (EST)

Hello, what a relief to find this site! I had my first CH 3 years ago, when I was just under 8 months pregnant. That pain is undescribable to someone who never had one before. I panicked, screamed, cried, and rocked back and forth as my hubby looked on helplessly. Went to the hospital, after making sure I wasn't in labor, the doc sent me home. Had another attack early a.m., and coincidentally or not, I went in labor and had my baby. After several meds, the CH's went away. Three weeks ago, they came back. After two bouts of meds, they are still coming and I'm terrified. I wont be able to get more treatment till after the 1st of the year. I know my family thinks I exaggerate, thank goodness there are others who know and understand my pain. Would be glad to correspond with others dealing with this. My addy is Here's wishing everyone a painless night of sleep!
Mandy <>
Mt. Olive, NC USA
Tuesday, December 10, 2002 at 17:33:17 (EST)

can anyone tell me how oxygen helps only if it"s 100%?
Donald Kendricks <>
Willow, ak USA
Tuesday, December 10, 2002 at 17:01:19 (EST)

Hi-I've been here several times, now I have a problem I never thought I'd have. I'm pregnant at week 6 I started a new cluster cycle. My Doctor (Kudrow) is stumped. He promised me that it would stop if I ever became pregnant. I'm taking imitrex pills, 100 mg, but splitting them in half. The oxygen doesn't work for me, it just pushes it off for 15 minutes, but the doom never goes away. I can't take Lithium and Caffergot, so I'm suffering from 3-5 headaches nightly. What's funny is my Obstetrcian told me to take 2 tylenols. Luckily, they don't hit when I'm working. Does anyone have any advice? Have any knowledge of the effects of Imitrex on a fetus in the first trimester? Please respond. I'm truly at my witts end.
Katie Neal <>
San Pedro, CA USA
Monday, December 09, 2002 at 21:05:11 (EST)

Great site so many like minded people. Iam 44 had this thing for 30 years, hit 10 more times than not. Longest attack 8hrs yes 8 effin hrs. Ive been round the block and back with it. Tried everything beaten ma head black and blue, yes I know that doesn't solve anything. Have read many notes on here I have to say that chewing analgesic drugs will not get rid of it or even help. Look my Docs a good guy and he lets me have Morphine needles the full trip and that doesn't touch it. Stick to the Imigram or Naramig (take as much as like over a short period my attacks last about 6weeks and I can do easy 10 jabs a day) my friends it wont cure it but it sure as hell helps and dont forget your Oxygen. Thank god for the N.H.S. if you live in England get a P.P.C. (Pre-payment certificate) it will cost you £32 for 4months and nothing more to pay no matter how many scripts you go through. I got myself £72 worth of goodies the other day and having that P.P.C. brought me a bit of joy. Loads of ice on your head is great if only to see how much of a different kinda pain you can take.Did you know that in Mexico they call it the suicide desease, seems it's worse at altitude they actually kill themselves over it. Best tip I can give is to breath gently and just focus on your breathing and make your pain your friend not your enemy. Christ what do I know it always beets me!!!! Does any one know if it ever goes away like with old age. Well off for another Naramig
Nige Cowan <>
Manchester, England
Monday, December 09, 2002 at 10:05:02 (EST)

Damn, it hurts!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! why Me?????????????????????????????????????///
Kenny <>
Oakland, CA USA
Sunday, December 08, 2002 at 17:17:25 (EST)

I'm 19 years old and have been suffering from CH for about 2 years. I am currently in a cycle, dreading the next visit from the beast. I get them twice a year, spring and late fall. They last 2-4 weeks. No one knows what the pain is like. I tell people I have cluster headaches, and they think I have a regular headache... not quite! Only my Mom knows what I go through because she is there to help me through it. She is my angel! My fiance knows I have cluster headaches, but has never seen the beast. He doesn't know what he's getting himself into (poor guy). The CH affects my entire life (I'm sure most of you can relate)! Last week I missed 2 final exams, 2 days of work, and spent plenty of my parents money on prescriptions and doctor's appointments. Tuesday I go for an MRI, and I go to a neurologist sometime in late December. Maybe I will find a combination of prescriptions to help ease the pain. Thank you for the support and such a wonderful website! I know I am not alone. Please pray for me and my family during this difficult time in our lives!
Leslye <>
Sunday, December 08, 2002 at 04:10:07 (EST)

Greetings from Northern England. I'm pretty sure I qualify for your excellent site which over the course of the last hour's initial browsing has confirmed one thing for me at least;that I'm not alone. I'm 40, have three children ,an understanding wife and teach Psychology and ESOL at the local college. I have endured winters with The Beast for the last 20 years...though I believe my first ever experience was in late summer,1982. For ten or so years I laboured under the misapprehension I had migraine...I used to feel a fraud turning up at casualty in an ambulance and telling them my doctors had diagnosed migraine. Since then it has been called CH most often, though before finding this site I myself thought I probably had trigeminal neuralgia,triggered by the cold winds that beat down on us every Winter from the West Pennines. I now see that many of you have similar. seasonal variations. I was considering having MRI prior to reading this site; I'd have to pay £600 to have this done privately-there's a 2 year waiting list on the NHS-but now I'm sceptical...many of your contributors seem to have learnt little or nothing from their scans. What do you think? For the record,I ask my wife at least twice a year to murder me, such is the pain behind my right eye. My clusters typically last for between three and four weeks though I'm about to celebrate 5 weeks this time round. I get anything from 1-6 headaches a day. Sanomigran(Pitzofen) has been used from time to time as a preventative but seems bloody useless for me.I use a tablet called Clotam Rapid(Active is tofelnamic acid)which is effective for about ten days(provided I take it at the outset of The Shadow).But tolerance of it increases pretty rapidly when it's time for the Imigran(sumotriptan) jabs. They abort(for me)consistently, but you can only have two a day, which is a living nightmare in a five headache day and has often led to hospitalisation.Yesterday my GP saw me for the first time in the mist of a particulaly evil strike...I was sceptical when he offered a new(to me)steroid,Prednisilone. I asked him how it worked but didn't listen to what he said, I was in too much agony to take it in! I've had 30mg a day twice and the facial pain has completely gone(replaced by a weird empty feeling on the right side of my face and a shadowy vibe elsewhere in my right hemisphere).I'm too sceptical to assume case and effect, but what do you good people think? Is prednisolone my holy grail - and does it keep you awake all night(it's 6am as I write this)or is it just a coincidence? And do you reckon I should splash out for the scan? Either way, it's an enormous comfort for me to have found this page at last. I look forward to printing off examples of your experiences to show sceptical acquaintances and work colleagues. And my friends and family, though without them, I feel sure I'd have jumped off Darwen Tower years ago. Thanks for providing such a fabulous forum at which to sound off.Best wishes to all you Clusterheads!!!! Please get in touch. Rich x
Richard Hanlon <>
Darwen.Lancs., UK
Saturday, December 07, 2002 at 00:23:22 (EST)

My name is Jerry Larkin and I have been sufering CH for about 18 years, I have a 6-8 week episode every 14 months. it is as regular as clockwork. Although I have over a year to be headache free the thought of the CH's coming back is never far from my mind. It sure is nice to have this site. It is full of info that I did not know. I finally discovered what type of headache I was having in 1998. A very good doctor finally told me that I was not having migrans but CH's. Since then I have tried many kinds of medications but only one has slowed the CH's down. The medicine is sansert. Without the sansert I have 3-4 headaches per day and with it I have only 1 per day on average. It does not however make the pain less. I also breath 100% oxygen During the attacks. It seems to make the attacks shorter. I'm glad to know that other people can relate to the pain I have,but I wish nobody else would ever have to experience this hell.
Jerry Larkin <larkin5@cox-internet,com>
Siloam Springs, Ar USA
Friday, December 06, 2002 at 00:23:54 (EST)

just found this site.i'm 34, been fighting the beast since i was 14. was pain free for two years untill nov.9, 6 to 8 times a day . then comes the dreaded night. you guys know the pain, the fear, the self destructive thoughts. but we gotta keep going, i wish i could say i'm glad you all are out there,but i don;t want anyone to have to bear this pain we all share. you are in my thoughts and prayers
shannon brown <>
panama city , fl USA
Thursday, December 05, 2002 at 23:56:07 (EST)

Hello, my name is pete and i'm a cluster sufferer. Makes it sound like an addiction. Well where to start? I'm 37, have had the devil in my head since i was 18. Thought it was the wisdom teeth at first. Little did i know. I really can't remember the last time i was pain free. My wife tells me it was a year ago...but i've givin up on keeping track. I went to the doctor once when i was about 23-24. He gave me the cat scan and ekg bit and then put me on some beta blockers and vicadine. Well being in the construction field, the viks weren't really an option an the bets blockers were to expensive. So I haven't been back to see a doctor, I don't have Insurance. I called the headache clinic in Houston and they told me that the first appointment was going to cost around 700 dollars so that's out of the question. But you know, I have had these headaches so long now that it's like being married to it. There's good time and bad times. Times when you really have to work at keeping it toghether. Nowdays, I really try to keep my headaches to myself. When you say people don't understand our pain your right. But when they live with someone who has the's a whole different game. The youngest one i have is 9. She doesn't get it. I know it has got to be awlful for her to see her father beating his head on the floor crying and asking god to take his life. I have figured this out. I now try to keep the pain to myself. I hide away from the friends and family basicaly to protect them from having to go through this with me. I don't know i may be crazy, but i'm sure glad that i have found this site. I was reading the home page and couldn't even finish, due to the tears in my eyes. Now i know what my family sees and goes through when i'm pacing chanting dancing crawling swearing moaning crying screaming beating. They live with it to and it breaks my heart. Sorry. I'm venting.
peter taylor <>
Baytown, tx USA
Thursday, December 05, 2002 at 23:46:52 (EST)

Thanks for the web site. I am having a headaches again and am finally seaking help -- I have health insurance now. The information is so appreciated! Good luck to all of you!
Sue Vezeau <>
Santa Barbara, CA USA
Wednesday, December 04, 2002 at 02:14:35 (EST)

Ahhh, Just got through breathing 100% oxygen. So far it's helping. I've had clusters for 8 years now. How I am still living....unknown. I've done everything from banging my head on a brick wall to almost commiting suicide. The only reason i haven't is because I have a beautiful daughter who needs her daddy. I don't know if this will help any of you but I have been doing alot of meditation for the last few years. Tai'Chi has helped me alot. It is a wonderful meditation. It's sort of a breathing treatment when you have the attacks. It has alot to do with mind over body. Though it takes intensive training to get it to work. It's worth a try anyway. It has helped me block out some of the pain. Though i have not yet been able to completely stop the pain. I don't think that is possible. The pain is just too horrible to completely block out. Just know all of you that there is one more man out there who knows the pain you go through. I take pride in being a man, but I have rolled on the floor crying like a baby many times. One more thing and i'll hush. Whoever that was that sent the message about people complaining about i'd like to break your face, but i still don't wish you the horrible pain that i have in my head.
Tuesday, December 03, 2002 at 01:13:30 (EST)

There is no escape, much of the time I feel alone. I've sufffered from migraines for years, now they have become complex, cluster migraines.I can never see enough darkness,the sounds around me just get louder and I'm not responsive to medications.I never know when one will hit, I on average get 3 migraines a week, which last never ending hours.I try to keep up a good front but that's easier said than done.Much of the time I know my family hasn't a clue how I feel, how frustrating on my part.
C. Stephens <chera;.stephens@ns.>
Shubenacadie, n.s. canada
Monday, December 02, 2002 at 23:45:05 (EST)

I am 31 years old and have been suffering with clusters since the age of 14,it seems there is no remedy.Is there any one out there that knows something i dont know.
carmen cammarata <ccarm4>
orlando, FL USA
Monday, December 02, 2002 at 17:15:01 (EST)

To all you who do suffer from these headaches i only hope that they can find an effective treatment because if i get regular headaches from time to time i can only imagine that what i seen on TV about cluster headaches i would go out of my mind. I can only suggest that you may try alternitive treatments like chinese herb doctors or (and i know many may object) marijana use. I don't adovocate abuse of this herb only that it could be useful to you. and to the people who are i do not use it myself but have seen that people do benifit from the medical use of it. i only write this to give you some hope and that although i do not suffer i have thought of the sufferers with simpithy.
peter <>
long beach, CALIFORNIA USA
Monday, December 02, 2002 at 15:14:45 (EST)

Try Feverfew its the best
Lindy <Lindy_janew>
oxfofd, ct USA
Sunday, December 01, 2002 at 23:29:17 (EST)

Oh my god!!!. I just read your intro and I may as well have written all of it myself. It's nice to know there is somewhere I can so just to talk. My episodes started when I was a teenager. I'm now 34, married and a mother of 2. I was not diagnosed until about 6 yrs. ago when I went to a headache specialist in NY. My attacks occur 2x per year usually in the fall and summer. They last about 2 weeks and alway come at 2am ( I can set my watch by it). I'm actually in the middle of a cycle now. I am exausted. My right eye, nostril, neck and shoulder are all affected. I'm afraid to look at the computer screen while I type because My eye is beginnig to ache. Only ptrue sufferes of clusters understand what true pain is. I have given birth naturally twice and would do it every day if I could pass on the cluster. They only advantafe is that I have built quite a tolarance to pain. I am burning a hole trough my stomach w/ all the asprin I take. I don't think it actually works but it makes me feel like I'm doing something to help myself. I've gone to a Chinese herbalist ( he gave me the most discusting smelling drink), I've had MRI's Cat scans, seen by a dozen neurologists and no one can help. The only relief I have managed to get is from an over the counter medication that I tried when I visited Italy. It is called AULIN and is manu. by Roche. My friend is in Italy now and she asked what would I like her to bring back for me (Gucci, Fendi) I said Aulin please. So far it's working .I don't want to jink myself. I'll keep you posted.
Nancy Picone <npicone@bear>
brooklyn, NY USA
Wednesday, November 27, 2002 at 15:39:47 (EST)

Hello, I am 30 years old and have been suffering from these CH for the last 7 years. I had migraine headaches prior to that but for the last 7 years they last for weeks at a time. They started out a week or two at a time and now I am in the 8th week straight. It seems that every year they last longer and longer. I was so happy to find a place to reassure me that I am no insane. I was beginning to think I was bringing these on myself by worrying about the pain at night knowing that shortly after falling asleep I would be jerked out of bed with the worst pain I have ever felt.(I have two children and child birth is nothing compared to these) I have used several medications including imitrex shots, nasal sprays, maxhalt, soma, verapimil, prednisone...etc. Even though they tend to relieve the pain they don't break the cycle. I know like the rest of you I dread for the nights to come thinking if I could just stay awake I would not have to suffer through the pain. Thanks to all of you for sharing your situations, it helps just knowing that it is not my imagination. If anyone has any suggestions please let me know.
Kristi <>
Twin Falls, Id USA
Wednesday, November 27, 2002 at 12:04:41 (EST)

mugu <>
keve, lome TOGO
Tuesday, November 26, 2002 at 13:33:32 (EST)

Hello, My name is Barbara Henn and I have a grown daughter that had migraine headaches for a really long time, she went to doctors and they prescribed a heart pill for her and she said she thought her chest would collapse, she stopped taking them, but came back to headaches every day. A co-worker that was having migraines told to get FEVERFEW a natural herb, she was a little skeptical about getting them, and would they really help her, but she did and she went without a headache since she starting taking them, she told me she can't believe it, how she would suffer from headaches everyday, and now she is free of them. Hopefully this may help someone else out there. Barbara
Barbara Henn <>
Hamburg, Pa USA
Tuesday, November 26, 2002 at 06:30:15 (EST)

Well, where do i begin. I am 25 years old and have been suffering from CH for 9 years. To begin with I did not know what they were. Teh family doctor i was going to was clueless. he referred me to a ear, nose, throat specialist who said i was suffering from "severe sinus headaches". Well that was some BS. I do not blame him for the misdiagnosis. The visual symptoms were not there (swolen eyelid, watery eye, runy nose). I had no idea what a CH was or that it even existed. This was my diagnosis for the first 6 or so years. I used narcotics to deal with the pain. They did not work too well. It was not until roughly three years ago i was referred to a neurologist by a doctor i was seeing at a colege i was attending. I was then diagnosed with CH's. One would not believe the relief I got from knowing what it was. Teh only bad thing is that the intensity seems to increase with each episode. I am in an episode now that has been ongoing for three months. It pisses me off that not much is known about CH's. Teh price of drugs used to treat the CH is another area that is upsetting. One almost wishes the makers of these medicines could experience just one episode, but truthfully i would not wish this on anyone. This website has been of great comfort. I will end it with that. Randall
Randall Davis Jr <>
Ocean Springs/Starkville, MS USA
Monday, November 25, 2002 at 14:35:20 (EST)

new e-mail address....steam still works!!
dviscarde <>
calvert, tx USA
Monday, November 25, 2002 at 13:13:56 (EST)

I've suffered with CH since I was about 23. My remissions are usually 5-7 years. I've been in remission since 9/94, and the headaches started back 3 nights ago. I am so glad to see this website, there wasn't anything like this even 5 years ago.
Rosemary Stedman <>
Vicksburg, MS USA
Monday, November 25, 2002 at 09:46:37 (EST)

Monday, November 25, 2002 at 05:08:43 (EST)

Hi Folks, very pleased to have found you, sad to know there are so many of us dealing with this BEAST... First time I found your site last week the sories I read made me cry. Have had the BEAST for almost 6 years now, doesn't seem to be episodic, cause IT keeps hitting me at random times throughout the year, but usually in the middle of the night and/or shortly after waking up. All started after a butcher of a dentist ruined my left jaw. Can relate to all of you when you say you slam your heads against the wall. Usually my dance does not last that long, cause in no-time the pain wears me out, only thing left to do is lay down, and suffer in silence wherever I am lying at that moment. Reach level 10 in less than 30 minutes and may take 3 to 4 hours before it stops. Still after an attack my head (behind the left eye and jaw) seems to be drilling on for a while. No possibility of sleeping through IT, the BEAST is just too bloody painfull. At the end of another beating I feel totally knocked-out and exhausted, sometimes get hit by a second one after only two hours of sleep. The times I am painfree there is the dread, the constant awareness that IT will hit me again at any time... Feel for all of you who have several BEAST attacks every day, I know your desperation and pray for all of us. Want to thank the initiators of this site for all the information to be found here and all of you who are sharing with and supporting eachother, will be a regular from now. Only those who live with the BEAST can understand... and I understand, just like I know you do... Wishing you all painfree days and nights, be strong and take care
Murat <>
Rotterdam, Netherlands
Monday, November 25, 2002 at 03:55:58 (EST)

My name is Cheylene Jubb and I am 19 years old. I have been having migraines since I was 9 or 10 years old. So they have been going on for almost 10 years now. My first sign of my headache is when I start to get light headed, my right arm starts to go numb and get all tingly. Usually the lightening flashes don't start until my head is spining, I can't make them go away either. That is, until I start to throw up, and than I pass out for a day or so. Many medications do not work, I have been on soo many herbal, and really expensive medications, and none have worked for me soo far. So please someone help me,
Cheylene Jubb <>
Houston, BC Canada
Monday, November 25, 2002 at 01:32:42 (EST)

Damn the beast! The last episode of CH I had was in '94 and I thought after all this time I was free...guess not. The internet in '94 was not the wealth of information that it is now - I'm amazed at the similar experiences of CH sufferers and the simlarities in thoughts, doubts, and coping skills - great web site it helped me! Gonna cope cause I have no other choice.
Chandler, AZ USA
Monday, November 25, 2002 at 00:12:23 (EST)

I checked out your site as my husband has had cluster headaches for 10 yrs now.He has had all kinds of tests on his head, and all different kinds of meds..He has been taking imitrex, but now even that is not keeping them at bay.He is 72 yrs old, and I really think he is getting mighty discouraged with the pain he has to put up with.By showing him your website, hopefully he will know he is not alone with these horrible painful episodes he goes thru.I will be checking out your website often..Thank you Marge
Marge Lambert <>
Clifton Springs, NY USA
Sunday, November 24, 2002 at 15:04:36 (EST)

Great to find you all. Had been free for quite a while until 2 mornings ago. Stopped taking Isoptin 240 from two a day to one. Woke up at 5:00 with the burning nose, same side as usual. Obviously back to the 2 a days. The Cleveland Clinic Headache Program really saved me back in 84. Took a lot of prescrip changes but finally found the right stuff. Had been sober for just a year and the monster came around. Had no idea what was happening to me. Clinic said welcome to the club. A lot of recovering alcholic males suffer from our friend. Strange I never got them while I was drinking. Anyway--enough of me right now as this is my first time here. Want to take some time and find out the rest of you. My only advice is if the meds are working don't try and out smart them. It's not worth the pain. Have a great night.
Saturday, November 23, 2002 at 20:03:31 (EST)

This has to be the best site i've ever encountered with information on cluster headaches. I had no idea what was happening to me as the doctors don't explain very well.
Vicky Smith <>
Saturday, November 23, 2002 at 16:39:27 (EST)

I`m just finding out right now that I`m not the only one besides my dad that also knows and understands thanks everyone I will be aregular from now on.
jim <>
aurora, ont canada
Saturday, November 23, 2002 at 09:00:39 (EST)

I just heard the term "Cluster Headaches" and did a web search to find this site. My headaches come day & night. If I catch them soon enough, aspirin works. If not, nothing works. They always start on the right side behind my right eye and move on back until my neck also is in great pain. If I am driving, I've got to pull over until the stabing pain leaves off. I've had MRIs and CAT scans but nothing shows up. My Dr. tried a cortizone injection into my skull behing my right ear. Didn't work. Next he tried steroids. They worked but my blood sugar would not come down below 200. Can't do that. Topamax was next but glucose went sky high. Now back on aspirin until blood sugar comes down. Is this "Cluster Headaches?"
Gary <>
Mpls./St. Paul, MN USA
Wednesday, November 20, 2002 at 14:20:07 (EST)

Although I knew it, I'm sorry to hear ther's so many of you out there. I also suffer from chronic cluster headaches. I go to my neuroligist monthly, and all he does is up my medications or prescribe new. I was taking Stadol Nasal Spay, but that seemed to cause rebound headaches. It has affected my job, social life, and even the little time I have to relax. I have had them for about 5 years now, and I quit drinking alcohol a year and a half ago. I was tired of getting a headache and vomiting. What other alternative do I have but to deal with this? I just thought I should tell my fellow sufferers of Cluster Headaches my deal. Thanks, Steve
Steven A. Acquilano <>
Geneva, NY USA
Wednesday, November 20, 2002 at 12:03:45 (EST)

I have really bad migrane headaches.I can't seem to find a doctor in my area to help me with the medication i need. My family doctor referred me to a nueroligist. I cant afford the nueroligist.i'm just looking for a regular doctor who will prscribe medication to help me.Does anyone know of a doctor in the indianapolis area who will help with migranes?Thank you
Kimberlie <>
carmel, in USA
Monday, November 18, 2002 at 19:48:32 (EST)

hello to you all with CH, I cant tell you how happy and sad this site has made me. when i found it i just cried, what a relief to find others that seamed to care so much and know what the hell is going on inside my head !! I'v had the demon for 6 years and you guessed it! i'm in the middle of one now, 4 weeks strieght with little time to think about the next visit. tank after tank of 02, shot after shot...trying not to over shoot my self looking for a moment of peace. i think we have to pull togeather, numbers do matter if we are to get the medical field to listen, please join OUCH with active support anyway you can and keep letting those who are seeking help know that they are not alone and we understand what they are going thru. share this site with your family, friends, and co-workers. get the correct information out about ch in hopes that we can someday have pfds...gotta go and thanks.....brian
Brian wagner <>
kalkaska, MI USA
Monday, November 18, 2002 at 14:15:34 (EST)

I had the experience for the first time this weekend of witnessing what my boyfriend goes through with one of these episodes. I'm an RN and I have to say I've never felt more helpless in my life in not being able to do anything for him to relieve his pain. All I could think to do was to leave him be and try to be as quiet as possible. He told me about this website so I thought I would check it out. I think it's a great support system for CH sufferers. Keep up the good work and I'll be back!
Terri <>
Topeka, KS USA
Monday, November 18, 2002 at 12:51:09 (EST)

I have suffersd from migaines for 11 years.Tried everey med possible,been hospitalized at least a dozen times.Imitrec worked in shots for awhile. zomig maxalt and all the rest.they have tried me on anti depressent also.Nothing,just last week i was admitted into the hospital my migraine was so severe.17 days straight,also let me add that i was taking axert and inderol,the Dr. finally tried iv DHE45 it took around 36 hours and it broke somewhat..2 days later it completly broke,i finally was sent home,and bamm another one somewhat mild but? so i got a script for MIGRAINAL..used it that day,it is now 2 days later and i cant really say i am completely free but i am going to work today..which is a accomplishment.All i can do is say a prayer that i can make it through every day as i have the past 2.peolpe just cant understand when i say i have a headache again...if anyone has any more info PLEASE help me........CUBFANROSE11@AOL.COM
Monday, November 18, 2002 at 08:10:05 (EST)

am a ol-pro first one at 17 yrs last on now at 59 yrs. been thru all medications and treatment almost died. an my friend still want's to visit. well nasal spray sparling insurance co says so. for my body i usually ride them out. ol-pro you know thanks just found the site 3 nites ago
Monday, November 18, 2002 at 02:04:12 (EST)

I'm 26 years old and been suffering from migranes for years now..I've been on medications that don't even work..The pain is so bad it doesn't matter if the room is silent or not, thats how bad the pain is..
Ann Dejesus <>
Meriden, ct. USA
Saturday, November 16, 2002 at 12:29:53 (EST)

This is a dream come true! I am a 28 year old male who 36 days ago got a headache and it never went away. I awake in the night and begin pacing around the house as the pain increases. I begin puching myself in the face and tie belts around my head as tears pour out of my eyes. My poor helpless girlfriend who has watched this recent horrer completely take over my life can only roll over and place the pillow over her ears as her helplessness fills her dreams as she falls back asleep. I have gone to the Kaiser emergeny room four times, seen my regular physician five times and been refered to the TMJ clinic. I am, or as of now was, taking six medications, none of which are on your list and have found no relief. This is the worst pain I have ever experienced and the hours it is gone I often catch myself fearfully fixating on the possibility of another episode. I have, in the past 36 days, contimplated suicide and understand how it is possible to go insane from intense pain. I am praying to GOD, something I have never believed in until today, that this is what I suffer from. I feel for everyone who suffers from this and hope it goes away soon for each of you as I do for myself. I don't know how strong I am or how much more I can take. Thank you so much for this information. You may have truly saved my life and placed hope and determination back into my spirit. I'll be thinking of you all......thanks. My name is Chris by the way. hope to hear, share, and learn more with everyone soon.
Sacramento, USA
Friday, November 15, 2002 at 09:19:53 (EST)

Hi every body .I am 45 years old pediatrician from palestine ,i am suffering from cluster headache 17 years .yearly i have clusters during October,November with one to 3 attacks daily lasted for approximately 1 hour. For me i found that a combination of verapamil sr 280mg every 12h with lioresal(biclofen)5 mg every 8h works excellent abortive treatment.
Dr.Ayob Hamdan <>
nablus, na Occupid Palestine
Friday, November 15, 2002 at 06:03:32 (EST)

Hi, my name is Jackie and I'm 19 years old. I wanted to post ths message in hopes someone could tell me exactly what a cluster headache is. I've been experiencng vey painfl headaches almost everyday for the past 5 months. They usually occur around the front left side of my eye. I keep thinking I have some kind of tumor or aneurism. I went to see my doctor when I first started experencig them, and he told me that they were probably just migrains. If anyone has any info, please e-mail me!!!
Jackie <>
Grand Prairie , TX USA
Thursday, November 14, 2002 at 13:34:22 (EST)

I think that I experienced my first Cluster Headache. I am not normally prone to headaches of any sort. Over the weekend I was sticken with such pain to my right eye and right brow that I thought I was having some sort of stroke. I could not walk and yet I could not hold my legs still due to the immense pain. It lasted about 1 hour. I could only lie them with clenched teeth, legs kicking, and hands pressed on my temples. I spoke with a doctor yesterday and she said that it could have been a CH.
Rebecca <>
Richmond, VA USA
Wednesday, November 13, 2002 at 16:01:31 (EST)

I found migraspray at walgreens and i have been using this products just for my headaches alone. i dont get migraines but i have given to others who do get them. i have never used a product that makes it go away in less than 5 minutes. i carry it with me every time i travel. what a product. its the best....i will continue to buy it for the rest of my life...if only more people knew about this product instead of buying all of those prescriptions otc pills. thank you don
Wednesday, November 13, 2002 at 09:49:35 (EST)

Can anyone out there tell me how much is to much Goodys PM? I have a friend that I think is abusing them and may be harmful. I know he took a whole box in 1 day (which is 8 doses). Any help will be much appreciated.
Tracy Sirman <>
Wake Forest, NC USA
Tuesday, November 12, 2002 at 10:47:37 (EST)

I've been suffering from migraine for 12 years (since I was 14 yrs old) and have suffered from a painful headache that has the symptoms of a cluster headache for 7 years now. For years I've wondered what this painful headache was that I seem to only get every October or May every two years. It seems to be different from a normal migraine that I get, although the pain still affects the left side of my head. It's like a stabbing pain that sometimes wake me up at night where I feel like my left eyeball is about to explode. I can't lie down as it seems to make the pain worse, and yet I can't do anything else because the pain is just so unbearable. I suffer in pain for about 20-60 minutes at least twice a day and for a period of 4-6 weeks, and then it's all gone. My next attack will then be in another two years. I've been to so many doctors and have tried other things ie. physiotherapy, acupuncture, herbal medicines and yet I still suffer from this pain. I recently went to see a Neurologist in order to shed some light on what I'm feeling. I explained in detail what the pain was like and described it as a cluster headache. His response was "Don't call it a cluster headache as it is not. It can't be because cluster headaches only affects men. It's just a very bad migraine headache so I'll write you a prescription for an Imigran Nasal spray". After leaving the clinic, I didn't know what to think as all the other doctors diagnosed it as a cluster headache. I've done the cluster quiz and my result stated that I do suffer from cluster headaches. I've been to so many websites and the pain that I feel describes that of a cluster headache. Since I'm a migraine sufferer, I know the difference between the two headaches that I suffer from, but because I am not a specialist (like what the neurologist had told me), I cannot diagnose my pain as a cluster headache. I feel so confuse. I have been spending a lot of money in order to prevent my pain, and the only specialist I have seen told me that I do not suffer from this type of headache as I am a woman and not a specialist. I feel so sorry for my husband as he has to see me suffering in pain, and he has been very supportive the whole time. Thank you for this website as I now know that there are other people that suffer the same pain as me.
Amy Badger <>
Sydney, NSW Australia
Tuesday, November 12, 2002 at 00:43:16 (EST)

When i found your site last week i sat and cried.I am 29 years old and have been suffering with CH for 7 years on and off. I genuinely though i was the only one out there and that i was going mad. I'm now in touch with someone else in my town thanks to your website. I know the fact that other people have them does not take the pain away but it's just reassuring to know i'm not the only one who sits rocking and beating me left temple at 3am. Thank you
ANN <>
kent, uk
Monday, November 11, 2002 at 05:56:22 (EST)

I am hoping to get some information on cluster headaches. My brother has been waking up in the early morning hours with intense pain in his right temple area. He went to the emergency room and was given an cat scan. They told him he might br having migraines and sent him home with codeine. The headaches still continue and appear to be excruciating. We are very concerned and hope someone can give us some information or direct us in the right direction. My brother is 30 years and he did experience similar headaches the last 3 years. Just not as intense. Thank you.
Rocquel <>
Sunday, November 10, 2002 at 19:31:48 (EST)

have had CH for over 15 years, but did not get an accurate diagnosis until I finally went to a neurologist about 5 yrs ago. I usually get the pain daily or sometimes twice/day in fall/winter lasting one to three months. some years I luck out and get none. Imitrex shots work for me very well to abort a headache, but nothing seems to prevent them - have tried many, many meds. In my third week of current round and am grateful to others for sharing their experiences on this board. it helps...
kevin <>
seattle, wa USA
Sunday, November 10, 2002 at 01:17:39 (EST)

Hello, Nice to know about this site. I have had the Cluster Headache for 15 years, with 3 years of silence. Now the "devil" got me again. I have just startet taking Verapamil. And I hope so much, that it will stop it.
Birgit ōstergaard <>
Holstebro, Denmark
Thursday, November 07, 2002 at 03:57:24 (EST)

Nice to read and understand whats going on in my head.
Steve Lex <>
Toronto, Ont. Canada
Wednesday, November 06, 2002 at 19:07:21 (EST)

Hello. im jon amd not doing so well. i have been wrestling the clusters since i was 19 yrs old, 39 now, I stopped conventioanal meds 6 years ago and went totallly holistic. I have done better than i ever did with western meds, But this cycle is determined to pay me back for my insulence. anyone ever notice that if you get a hand up on these damn things its like they pay ya back. i hate it when that happens. well enough for now i have had 2 weeks of living hell. i will post some things that have helped when i figure out how too. i have been feeling rather alone and scared so please feel free to write me. i need all the support i can get. and i have plenty to give in return. Yours in Pain Jonnymach CH at large
jon mach <>
berlin, md USA
Monday, November 04, 2002 at 12:20:39 (EST)

Im 51 yrs of age and have just started back on my cycle of headaches after being dormant since 1995.The first preventitive I had taken was elavil 25mg. 2 times daily Morn & nite.Left after taking first daily medication.Had Taken this med for aprox 1 month.Being dormant for aprox 7 years I am now trying prednisone 20mg . Seems to work for the first part of my cycle. Iam also taking verapamil 200mg. 2 daily.I suffered with these for aprox.35 yrs.First starting 1 to 5 hrs niteley twice a year.Becomming more frequent over the years.This is my first cycle after 7 yrs,they have come back with a vingance. I was in my 3rd. week of niteley cluster 4 & 6 hr. episodes (every nite ). Prednisone along with the verapamil and 100% oxygen is seeming to lessen the severity . Roof of mouth ,back of eye and scalp still sore as hell after the attacks. Ive taken my guns out of hiding.
Randy Sanders <>
Beaumont, Tx USA
Saturday, November 02, 2002 at 23:12:00 (EST)

Finally found some folks who know what it is like!!! Even my wife the nurse while understanding and very supportive doesn,t really understand, and the docters yeah right,found one the other day that listened and gave some thing that at least tones down the pain and duration of this thing in my head. Grat to know there are others out there. THANKS
Craig <>
Spokane, Wa USA
Saturday, November 02, 2002 at 21:17:36 (EST)

Hi. This is such a 'comfort' to know about this site. And I don't know why. I like people, am married, one daughter, good job, nice friends, beleive in God, do good works (help fight world hunger), take care of myself, etc. Yet I feel very alone with my CH. I don't know of any other sufferers (until now). My wife has seen very attack I've had in the last 15 years. Everybody else (friends, family, doctors, etc) do NOT know my pain. As soon as 'headache' is associated with it then it's like they downgrade the seriousness of it. Even my wife at times seems to get desensitized to it. I've had Level 10 (KIP scale) only 3 times in 15 years (if I had a loaded gun beside me then I would not be typing this). Usually I go to level 9 and am an emotional mess. The look and stares I have gotten, and the constant explaining I've had to do for weeks after have pushed me to isolation as soon as I've felt an attack coming on. My life has been dictated by these ****ing CH. I go into work sick with anything else because I need to save up my sick days for the days when my CH are a high level 9. Up to 2001, my CH mainly occurred during weekends, vacations and I took vacation time for when it occurred during the week. I was able to save up 29 sick days to 2002. This has been a bad year and I've used up 4-5 vaction days and 21 sick days this year due to CH. There is 'tremendous' info on this board which may just save me because I cannot keep up the pace of CH that I've had in 2002. God Bless everyone of you. And thank you. Daryl.
Daryl Dolny
Guelph, On Canada
Saturday, November 02, 2002 at 20:56:17 (EST)

I just learned about this site a few days ago. Once again my father has had these so called demon headaches for at least 25 yrs. He is 65 yrs old and they seem to hit him at any time of the year...I have been reading other people's pain letters and there seems to be a pattern of these things coming every 2 years..this is not the case for my Dad. He is now on his 10th week of severe violent headaches. The last ones he had lasted about 4 months and they started in March of this year...this means my Dad has been pain free for maybe 3 months out of this year so far...He is scared to take half the medications that are prescribed to him as the side affects would scare the H... out of anyone...My question is what does really work? It seems that there are just no answers and for someone who is a Daddy's girl as I am It kills me to see him in so much pain...He is being robbed of life as he can't do alot when he is suffering as he does. Sometimes he has had up to 19 headaches in one day. He has to shut himself in the bedroom with no light or sound coming from anywhere. My Mom is so loving and understanding Bless her heart but as they get older it is taking a toll on them both. I wish there was something that someone could tell me to help my Dad. It makes it that much harder when he's to freaked to try anything. Does oxygen really work? As I have read up on everyone it seems like it does for some more than others....Thanks for listening...
Lori <>
mission, B.C. Canada
Saturday, November 02, 2002 at 18:08:10 (EST)

I'm a clusterhead. I'm tired of these bouts with the beast. I am not a person of routines and therefore am frustrated as I need to monitor everthing I eat or drink. I'm even looking at the soaps we use in the house. Soon I could become another Monk and would have created my own OCB.I need also the watch the smells I come in contact with so as not to trigger a cluster. Why can science give us a questionaire to fill out after an attack and then feed it through a computer to tell us what our specific triggers are? As you can tell I'm in the middle of my attacks and just venting. Thanks for your site. It's good to know your out there.
Ron <>
McHenry, IL USA
Friday, November 01, 2002 at 10:54:48 (EST)

I had cluster headaches for about 4, 5 maybe 6 years and I know how awful and incapacitating they are. If you've never tried Stadol NS, I urge you to try it. It's powerful, so you have to be careful with it, but it provided for me what no other medication did--total relief within minutes. I tried it all, Imitrex, Imitrex nasal spray, oxygen, lithium, on and on and on and Stadol works. If you don't have an addictive sort of personality and you don't operate heavy machinery, try it. It really really works.
Mike <>
Cincinnati, OH USA
Thursday, October 31, 2002 at 22:20:31 (EST)

just glad to know i am not alone
Judy Ortt <>
Princeton, ky USA
Thursday, October 31, 2002 at 10:38:44 (EST)

Boo hoo, boo hoo! I am a 41 year old guy, who hadn't had a cluster headache for about 7 years until about 3 weeks ago. Last night's was the worst I've ever had. My eye is still swollen and red 16 hours later and a phantom is lurking on my shoulder. Last night's began about 3 AM and didn't end until about 5:30 AM. My nose drained and draiend, my eye watered, and I had this really thick, gross saliva. The pain behind my right eye or temple was horrible. I tried hot water, cold water, a shower, cups of coffee, rocking, crying. This cycle is the first in many years, and this time clusters are accompanied by photosensitivity and nausea. The last time I had a cycle, Imitrex didn't exist, so maybe it will work for me. Anyway who wants to chat should feel free to write me. I just found this site today. Ahh, the phantom is knocking, stabbing, I must run. Good luck everyone!
Mike <>
New York, NY USA
Thursday, October 31, 2002 at 00:57:05 (EST)

Well on fine day i got a cat scan and had a bad headache afterwords and it really stunk.
jeremy fazely <>
Oscoda , MI USA
Wednesday, October 30, 2002 at 09:13:50 (EST)

my dad has had severe violent cluster headaches for the past 27 years...He is now 65 years old and we are very concerned about him because as he gets older he is unable to fight the pain...would like to know if there are any support groups out there?
lori ferris <>
mission, bc canada
Wednesday, October 30, 2002 at 03:29:34 (EST)

I have been suffering with headaches that last from anywhere from 15 seconds to one minute or longer. Is this a cluster headache? If so what is the cure. Iam unable to concentrate, I am also afraid to drive when they have been frequent. Can anyone tell me what I can do? I have been to the doctor,he gave me Maxalt-MLT. Please advise!
Tom <>
Basking Ridge, NJ USA
Sunday, October 27, 2002 at 23:55:41 (EST)

I 've had a history of Clusters for 4-6 yrs now I seem to be in my second or third bout with them & they are no picnic with each series worse than the last. I wish I wasn't welcoming myself to your little corner of the world but I have no choice since I've located your little establishment & I've read some of your distingishing messages. Oh yeah they hurt when ever so present & they reoccur often 4-6 mos at a time with ER visits a priority of simply no other choice. Ever had an anuresium folks. They thought I was in the process of one or a likely canidate because of these & I sometimes wish I would. They ask me on a scale of 1-10 Pain wise how I would relate mine of course 100 would be unreasonable so lets just say 75 with no relief in sight well no sight at all unless O2 (oxogen) or conventional medincations in literaliy high doses enough to kick a horse over. & then some. They bring off with Prednisone in a spiralling feed off along with compazine they sometimes work but screws your system up. Oh yeah there's Vicaidan, no use Ibuprophfen 800 mgs & then Perkascet, & something else O2 again & again try breathing deep with these it's impossible. My best relievers are my three dogs Lake, Chicago & Peter Lorre. They help with the pain & alot of it I've been suffering. My latest bout has been three weeks now with one ambulance ride of the six ER visists I've made so far. Three to four years ago they lasted 7 mos. straight... Thank you for listening. Craig of Craig's Escape
craig <craigsescape>
mn USA
Sunday, October 27, 2002 at 19:55:09 (EST)

Hi all, I have just been told that I suffer from cluster migranes, i have been getting them on and off for the past 4 years im now 27 years old.I get a terrible pain in my right eye, my eye waters and goes red, and i get a very bad pain all down my right side of my head, I can't bare look at the tv, pc or lights and my head throbs like you would not beleive. I visited a doctor 4 years ago who told me to visit an Optician and they said that i have sensitive eyes to light and my be a tad long sighted (the weakest -1 or something) well bare in mind i was suffering from these headaches i never knew it effected my eyes. My eyes are actually perfect! This weekend I had an attack at 7am I took 2 headache pills then fell asleep for 2 hours then woke up again with the same pain, with this I went to my doctors with my eye watering and bloodshot, pains, frequency etc and he diagnosed me there and then with cluster migranes. now im not sure what to do!??? Im glad I found this site as it now tells me what I have and how to fight it. Tony. London, England
Tony Hodge <>
London, UK
Sunday, October 27, 2002 at 19:53:17 (EST)

First of all i think this site is wonderful,just found it about three weeks ago.Have read everything i can get my eyes on and thank you so much for that.I am troubled by some of the garbage i have read regarding the duration or shall I say the legnth of time some people get attack wise,that was my number one complaint with all the dr.I have gone to since being diagnozed with clusters.I have several bouts lasting longer than most,4 to 6 hours at a time and was convinced that I did not suffer from clusters,I have seen the best the world for this diseae or whatever you wish to call it and they have all told me the same that I suffer from clusterheadaches.I am very fortunate to have a husband that makes a great living and feel for the sufferer that cant afford his or her medications.I am eposodic,they usually last two to three weeks at a time.Getting back to the long attacks,I just recently asked my dr.regarding it and he mentioned to me that he has several patients that have had longer bouts than mine and they all have clusterheadaches,he would not give me a percentage but he did mention it was low,for those that are wondering what type of dr.,he is a neou and happens to have the largest clust.patients of any dr. world wide. I have also noticed that his name is not mentioned anywhere on this site.HHHHHHmmmmmmmmmmmmmmmmmm.Thank you once again for this wonderful site and God bless everyone who comes to it!!!!!!!
Sunday, October 27, 2002 at 15:25:56 (EST)

Hello everyone some sad news for some of you. The monster is back in my life this fall period, After Six years of silence...
David Shea <>
Sunday, October 27, 2002 at 13:48:34 (EST)

At the age of 51, I have become another victim of the "demon". My first attack occurred 13/05/02 and I will never forget that awful day as long as I live. Before this, I had never heard of cluster headaches, but can now appreciate at first hand what all sufferers must be going through. The daily attacks continued for sixteen weeks and went as quickly as theyn arrived. BUT after 21 days of respite, they returned and my consultant has now informed me that the pattern of attacks seem to be chronic. He has prescribed several drugs - most seem ineffectual, but some are of benefit to me : Tolfenamic acid helps reduce the pain during an attack Topamax (topiramate) stops the attacks but the side efeects are untolerable Gabapentin assists in repairing the nerve damage around the temple and eye region I am beginning to wonder who to turn to for help - my consultant is 60 miles away and is never available to speak to on the telephone. I am becoming more aggressive towards family, friends and work colleagues but I don't think they understand what I am going through - Cluster headaches - everybody gets headaches!
Steve Cook <>
Scunthorpe, NL England
Sunday, October 27, 2002 at 05:32:21 (EST)

I am suffring from "clusters" for 38 years!!! I am lucky that there were always a couple years or more between one attace and to the next. About 15 years ago I started using oxigen and it hellped very much. Then I got the Imitrex pill which hellped too but made me fill sick in other ways. For the last six years I was not getting any atteck and was sure that it is over, until a month ago, when I got a terrible attack that braoght me to the hospital. Because I was sure that it is not going to happened again I did not get the oxigen and used too much the Imitrex and at a point it stopped helping. I got into a terrible stage of fisicly and mentaly exostion. I suggest to everybody that suffers from "clusters" to use always the oxigen and not to relay only on druges.I think that I am over this one, (or almost...) but I know that next time if it comes I am back to the oxigen!!!
Yudit Farris <>
Kfar-Saba, Isreal
Saturday, October 26, 2002 at 03:02:11 (EDT)

I started having Cluster Headaches at the age of 21, now I'm 55. For so many years Dr.'s and family and friends thought I was just looking for a way to get doped up I just wanted to die because I couldn't make them believe I had such pain. I was around when Doctors finally gave this hell a name. I'm still having them but at least now I'm getting some help and now Doctors are now listening to us when we tell them of the worst pain,I feel could exist for a person to have to endure. I just found this web site two days ago and am truly sorry that all of these other people have been going through what I have for so many years. Thank you for being here, I'll keep trying to cope with this with the hope that someday someone will come up with a guick and sure cure for all who suffer from this suffering we have!
Don Green <>
Garfield, Ar USA
Friday, October 25, 2002 at 19:43:41 (EDT)

I am a cluster sufferer myself, and this site has brought tears to see that it is not just me.
DJ Colson <>
Loxley, AL USA
Friday, October 25, 2002 at 12:24:46 (EDT)

My husband Jayce has been suffering from cluster headaches for 12 years. He has just started with another bout approximately 4 weeks ago. Until this recent cluster he had been headache free for 2 years. We felt truly blessed for the time of him being pain free. The last bout 2 years ago lead us to the Mayo Clinic. The trip was made due to the fact that his pulse rate was dropping to just 20 beats. Needless to say this scared the doctor's where we live quite a little bit. So after many trips to the hosptial, a heart cathurazation to prove there was nothing wrong with his heart, off to Rochester, MN we went. After consulting with the top guy in charge, he explained that the heart rate slowing down was a defense mechanism for his body to slow the blood flow due to the excruciating pain from the headache. I don't know if this willhelp anyone, maybe it will keep some one from feeling as scared as I did. Jayce is now on prednisone, verapamil and lorazpan all trying to break this new cycle of headaches. He is currently taking anywhere from 2 shots of Imitrex(on a good day) to 4 shots aday. If there are any family members out there that have suggestions for coping with the mood swings the prednisoe seems to have on their loved one, I would take any suggestions. This round of clusters seems to be doing us all in. Thank you for letting me spill my guts. Annie Missouri
Annie Ghere <>
Butler , MO USA
Friday, October 25, 2002 at 11:39:31 (EDT)

hi ive had cluster headaces for years.i get them 2 to 4 times a year. but they are bad.i cant talk and dont know the year and i vomited they scare me when i get them cause i loose all my thoughts and hardly can talk.. i end up in the hospitol every time.i feel that i am a lone. and dose any one get them as bad as i do?? the doctors give me shots and oxegen. i am only 38 years old and if any one has any info on this please email me...thank you so much
virginia <>
norwalk, ct USA
Thursday, October 24, 2002 at 20:29:24 (EDT)

hmm, where do I begin, I work in a casino, at times I have to leave the floor to keep from smashing something because the pain is so intense. I hav erecently moved to NJ, have had many drs. in PA, OH, tell me I am crazy, although once my orthopedic surgeon expressed his feelings for me and wrote me a prescription for a highly controversial pain med, that actually worked. other drs, have tried things such as toradol, imitrex, zomig, i have felt like a walking lab rat, oh well, hopefully someday someone will tell me why my head hurts soo bad all the time, and find something to make it stop!!!
michael <>
atlantic city, nj USA
Thursday, October 24, 2002 at 19:29:55 (EDT)

Have suffered with CH for 12 yrs. My best treatment is Oxygen, hot water on side of head in shower, darkness and quiet. Although I also take Imitrex and Percocet while in work or away from home (don't tell my boss) I have a hard time believeing some of these people suffer clusters while writing on these pages. While I suffer a CH I cannot even look at a computer screen. But at least them being able to vent here is a good remedy. Love this site, keep up the good work and thanks for keeping it going. It also helps me when I need to vent. Lets face it, our spouses are sick and tired of hearing about our headaches.
Ron Weldon <>
Gloucester, MA USA
Thursday, October 24, 2002 at 19:08:48 (EDT)

I have just been diagnosed with cluster migranes after experiencing terrible knife-like pain directly in and behind my right eye for over a month. I've suffered with headaches off-and-on since childhood (the kind that make one cry with nausea) but I've never have had any that have persisted day-in and-day-out (especially at night and early in the morning) for an extended time period like this. The pain hurts and my neurologist has prescribed Topamax, Depakote (the big once-a-day tablet), and Zomig (although I try to avoid the Zomig because it can make one feel tired and nauseated). Excedrin for migrane helps at times. I'm also trying to change my eating habits to include more veggies and no chocolate and no cheese (I guess no "fun" foods anymore). I'm also trying to "think" about good things during the pain, e.g., a cricket outside my widow at 5 a.m., a mockingbird singing at 6 a.m., etc. The pain is; however, difficult to deal with (although at times I want to pound the wall and scream--especially at 5 a.m.); however, the blurred vision is tougher to deal with because I'm a teacher and artist. I'm just thankful to God above and my Savior Jesus Christ along with The Holy Spirit that they're with me during the painful times. Everyone who suffers from these terrible cluster migranes is in my prayers. I'm glad that I found this site today. It has been a real blessing. Please don't give up hope...I haven't.
Tommy V. Smith, Ph.D. <>
Rome, GA USA
Thursday, October 24, 2002 at 13:43:06 (EDT)

my father suffered untill his death. i also suffer from these terrible head aches. i've ben told my an array of doctors that i have: migrain,cluster,vasculer. my head felt like it would explode ever time my heart pumped;and inbetween beats the pain would drop off just a little.i've been accused of wanting drugs. i do not! i would like to say that quiting smoking and all alcohol has help very much.
Allan <>
Providence, RI USA
Thursday, October 24, 2002 at 12:00:26 (EDT)

I have been a sufferer for 10 years and finding life very difficult at the moment. Fell very close to the edge but it has helped me finding this site. Very intereted in the Water Treatment and willing to give it a go - anything will help. Would like to hear from other sufferers and any news of any breakthroughs in the states. I used to live in SLC Uthan, I wish I was still there, I would be happy being under the care of the University Hospital which was always researching rare illnesses. Have a good day!!!
Keith Smith <>
Nottingham, UK England
Tuesday, October 22, 2002 at 11:17:20 (EDT)

Been a CH suffer for 3years no relief in site gonna try the water treatment.
Jeffry Frawley <>
Evant, Tx USA
Monday, October 21, 2002 at 06:41:39 (EDT)

I am 64 years old and have had cluster headaches since my teenage years. They recur about every three years. During the period of recurrance, they come about every 2 hours and last for about 3 weeks with almost all of the occurances at night after bedtime. About seven years ago, I found a treatment regimen that reduces the violet episodes to a very tolerable "annoyance" pain. That has changed my life during these periods. I use 1 cc of 4% Lidocaine applied to the left nostril through a syringe with no needle(my headaches are always on the left side) immediately at the outset of the first headache of the night. I then immediately start with oxygen at 6 liters/minute. The absolute key is to have everything ready and begin the oxygen immediately. (I have the tank beside my bed so that I do not need to move to begin the flow.) The combination has changed things dramatically. Instead of thrashing about in an almost uncontrollable state, I am able to lay on my back, breathe throught the oxygen tube, and almost relax. The total time per headache episode has also reduced from about 30 - 45 minutes before I started this form of treatment to about 15-20 minutes now. No longer do I live in absolute dread of the onset of "another season". Also, my wife no longer lives with the same dread.
Phil Tenkhoff <>
Olympia, WA USA
Saturday, October 19, 2002 at 14:19:51 (EDT)

glad i found the site, needed some validation. I've had migraines off & on since i was 16 or so. last year i was diagnosed with clusters, had a streak that lasted about 5 months. finally eased off with inderal la, stopping depo-provera & hysterectomy (that was for a different reason, but the HA completely stopped for the first time about 8 weeks post op). they have started up again, now on day 4. there is so little break between them that they might as well be continuous. imitrex hasn't worked for me since last year, maxalt usually does but to no avail at the moment. amerge also didn't help. went for a massage yesterday, helped a little at the time, but no lasting effect. at least i was able to sleep, thats usually a dicey proposition. currently hiding out at work, i'm short on leave time & my bosses, tho sympathetic, are weary of my needing to leave . me too. thanks for letting me gripe. this sucks.
Linda <>
New Orleans, LA USA
Friday, October 18, 2002 at 11:55:56 (EDT)

Thank you VERY VERY much for the infomation you have provided here. A large porion of it is a repeat of information I have previously (over the past years) found on the net although it is presented in a much cleaner and usable format here. keep up the excelent work. h and did I say thank you...well, thank you! :)
Nelson Valiquette <>
Moncton, NB Canada
Friday, October 18, 2002 at 08:25:09 (EDT)

Hi there again, i think my headaches are over for now, it was a relief to know about this site and, at least, share my experience and read about yours. It is good to know you're not alone in this living hell of cluster headaches. Thanks for this great site. Jesus Moran
Jesus Moran <>
Mexico, D.F. Mexico
Thursday, October 17, 2002 at 23:16:16 (EDT)

I've had them on and off for 25 years and recently have had some success with Excedrin for Migraines (basic ingredients are Tylenol, Aspirin, and caffiene). I've found that if I take the Excedrin in the VERY early stage of the headache and dissolve the tablets before swallowing, I can stop (or reduce) 60% of them. It's a nice alternative with fewer side effects than the heavier medications. Of course, if it's night and I've been sleeping, I usually miss my window of opportunity to take the Excedrin and often wake up with The Demon raging. About 10 years ago I finally discovered - believe it or not - that JOGGING (hard running) works well for me. It's NOT convenient (i.e., it's cold and dark outside) and I know it's difficult for most of you to consider running when your head feels like it is about to explode, but it might be effective for you too. Warning: the first 5 minutes of running are absolute hell! After that, the headache is usually gone. Good luck. My prayers are with you.
Salem, OR USA
Thursday, October 17, 2002 at 21:06:35 (EDT)

Sufferer of thes terrible headaches for nearly 20 years. Would love to hear of anyone living near me. Going through a bout of them just now and my life is awful!
Thursday, October 17, 2002 at 10:18:50 (EDT)

have had migrains since mid 20, no 57yr old so it anyone has any question just ask have had all the meds & still have the headaches mother said they would get better when I get older. dont know just how old that would be KB
kenneth Boyles <>
Austin, tx USA
Wednesday, October 16, 2002 at 22:19:05 (EDT)

I have learned more about cluster headaches just reading other people's entries than any other source. I have had headaches for many years and was diagnosed with migraines 12 years ago. At that time they gave me imitrex to use, tried multiple times but it gave me extreme heart palpitations and increase heart rate I thought I was having a heart attack, so needless to say I stopped using it. I continued to have headaches may be every 3 to 6 months or so. then early this year I had a series of headaches over a period of about 2 months which I attributed to work stress and a new asthma med, but now looking back at it-it was a cluster episode. I never considered cluster headaches as everyone said only men get them. 4 weeks ago late one evening IT struck- bruising elbows and arms, pulling out my hair, wishing I would just die. now 4+ weeks later after missing work, being unable to function, 2 doctors, 5 prescription meds-I can finally say my head doesn't hurt. I hope after the pain meds are gone I can still say that. I just started doxepin nightly for prophylaxis. It is so wonderful to be able to clean the house, drive my car, even to grocery shop (which I normally hate to do). Thanks for giving me a place to come where people understand.
nancy eisner <>
kenosha, wi USA
Wednesday, October 16, 2002 at 12:40:25 (EDT)

I have been recently diagnosed with cluster headaches, and have been battling them for 3 weeks. I really enjoy this web site. It is so accurate to what I have been experiencing, and it has helped my family to better understand what I am going through.
Clark Youngblood <>
Pensacola, Fl USA
Wednesday, October 16, 2002 at 11:24:51 (EDT)

I go to google and type in "headache same time every day" and wham! with one click of the mouse I find the answers to suffering six weeks a year for the past 20 years. Great website - I've learned so much in the last couple of days. Knowing i'm not alone seems to make my nightly 9'oclocker a little more bearable. thanks
Alan < >
Edmond, OK USA
Tuesday, October 15, 2002 at 23:48:40 (EDT)

I am going to go to the Robbins Headache Clinic in Illinios next month anyone ever gone there? I fear my clusters have gone cronic.
Lee Shultz <>
Milton , WI USA
Tuesday, October 15, 2002 at 19:00:57 (EDT)

Once I went to see my Doctor about these terrible pains in my head, I'm sure she thought I was exagerating and she asked if I would describe exactly what the pain was like. I looked at her and asked if she had any children. Yes, she replied. Well, I asked, could you describe to me the pain of giving birth?. No she replied, enough said I said!
John <>
Tuesday, October 15, 2002 at 15:35:22 (EDT)

Two weeks into my latest cycle of cluster headaches. It does not get any easier! Twentytwo years. God I hate this!
michael moan <>
greenville, ri USA
Tuesday, October 15, 2002 at 13:20:15 (EDT)

Hi there, finally there hope for all CH sufferers even if its only a support group Im 46 years old and have suffered with CH for 28 years and I am so pleased to have found this website. Im in the middle of a bout now and nothing much helps. I have an oxygen tank next to my bed but that only aborts 6 out of 10 attacks. Oh well soon they'll be over for another 2 years or so. But I'll keep in touch with this website. Thankyou. Palma.
Palma Fredella <>
Adelaide, S.A. Australia
Tuesday, October 15, 2002 at 08:07:02 (EDT)

Hi i have been suffering some terrible headach abouth 16 years i started to think it was a brain tumor.i went to mny doctors about this but they cant seem to find the cause of these problems. i went has far has to cut off all my beautiful hair not a inch is left!i am fed up and confused.
michelle <>
London, England
Monday, October 14, 2002 at 13:35:58 (EDT)

Hi my name is Martino and its great to see that i was not alone as a sufferer of CH`s. i am a 28 yr old male and for the past 5yrs have been severely affected by the extremities of pain that CH`s bring. Not only that but perhaps more daunting is the mental `demons`,the depression that has engolfed my life however after another bad patch i have nothing to lose and have decided try every avanue possible. Have found great motivation in all of the letters and hope that as a group we can concur and help in the awareness of such a debilitating curse. God bless
martino pedulla <>
melb, vic australia
Monday, October 14, 2002 at 04:04:40 (EDT)

very helpful website learned more in five minutes here than in twelve years with doctors
barry wiseman
aberdeen, scotland
Saturday, October 12, 2002 at 10:43:08 (EDT)

I am 63 and have had CH since age 22....but, they stopped about 11 years ago, until Thursday night of last week, 8 days ago!! I have had 2-4 every day since then, mostly at night, just as most of the people on this site. For the first 15-20 years, I thought they were sinus headaches and just endured, sleeping in a chaise lounge, sitting up, etc. Then I found a Doctor who had been a resident at Mayo in MN and he knew they were CH. Began Ergostat and used it for years (under the tongue) when I felt one coming on. Then Ergostat stopped working, but I found nothing else that worked and no doctors to consult. Then they went away(about 11 years ago)....I thought I finally out grew them-HAH!! I just found this site this AM after awaking from a CH and am pleased with what is here. If anyone knows a good doctor for CH in the Charlotte, NC area, please let me know. If these don't go away in the next week, I'll have to find one. Thanks!
Don <>
Mooresville, NC USA
Friday, October 11, 2002 at 04:51:06 (EDT)

I'm a 45 year old male and my first CH cycle began about 17 years ago. My "demons" used to come visit about every two years in the fall/early winter and last 6 to 8 weeks but I have been CH free for the last six years...until now. My latest cycle started about a month ago and it's been happening every night since. Over the years I have tried Verapimil, Lithium, Prednisone, countless pain meds and finally got some relief w/Immitrex Inhalers. After about 2 weeks of sleepless nights (fear of falling asleep 'cause I know what's coming) I am totally exhausted. I thought I had read one time that these things get weaker w/age and I must admit that I don't think they are as bad as they used to be but they are still monsters. There's nothing quite like it as I'm sure most of you know. When these things start my life pretty much shuts down except for work. I can't go anywhere or have any kind of a social life because I know at some point in the evening that steel spike is going to jab me right above my left eye rendering me helpless for about an hour or so. Hopefully this cycle will end soon and I can get on with my life but in the meantime I'll be staying awake w/Immitrex in hand and wishing you all pain free nights...this is no way to live.
Jim <>
St Louis , MO USA
Friday, October 11, 2002 at 00:44:35 (EDT)

Have been a sufferer for 12 years Recently started to have treatment from a chiropractor which thank God seems to be working. Headaches are less frequent and VERY much less painfull.
Rena <>
Kirkmuirhill Lanarks, Scotland
Thursday, October 10, 2002 at 05:13:03 (EDT)

I am glad to know that other people are out there suffering from the same pain that I am. At first my doctors tried to treat me for sinus infections or sinus problems. It was not until I was able to show up at my doctor's office in the middle of a headache that I was able to find out that I was suffering from cluster headaches. Your sight is very interesting to me. I have learned a lot from this sight. Everything that I am reading is true to my symptoms and diagnosis. I read that some research may indicate that sevre head tramua may lead to cluster headaches later in life. I had a bad car accident when I was a teenager and had among other things a black-eye and lumps on the right side of my face. I wonder if this may in some way be causing my headaches. I did not start having my headaches until I was in my thirties. My doctors have given my some medicine to help me when I am having a headache. The medicine does not prevent that headaches but it does keep them from being so sevre or lasting so long. Maybe one day research will find a cure for these headaches and I will not suffer another day like I had today or nights like I have had for over a week.
Wednesday, October 09, 2002 at 21:27:21 (EDT)

I have been suffering since I received a swine flu shot in life has been in turmoil. please put me in a program or something that I can be used as a guinea pig.I am re-tired and can travel anywhere. thank you--robert
robert teron <>
a,mherstburg, ontario canada
Monday, October 07, 2002 at 14:11:12 (EDT)

Hi! I'm Mark and have been suffering from CH for 14 years.I normaly get a two year break and when they come they last for 4 to 8 weeks with two massive headaches everyday.Its 2 years since my last ch and I am now in my second week of pain.Everytime I get an attack, I can't believe its nothing more serious than a headache and I really can't stand the pain any longer.I feel for all of you .
Mark <>
Essex, England
Sunday, October 06, 2002 at 15:40:20 (EDT)

my name is melissa i am 31years old i have been suffering from clusters for 10 years, within the last two weeks they have become so severe i can't even function though out my everyday life. Just last night i slammed my head so hard aganist my wall i put a large hole in it sometimes i have also thought of hurting myself in other ways, but i know that i can not because i have 2 kids that i rasie alone. I have been on verapamil for years and topamax for the last year every few months going up in mgs. For the last couple of weeks i have been on high doses of predisone which has made me feel like i'm going crazy they haven't completley stopped the headaches but slowed them down a little, now my dr. has me trying zanaflex sometimes i feel like i don't know if i coming or going becacause of the pain the meds and the ch. But it is good to know that other people are out there who go though what i do because late at night i feel so alone and afraid there are nights that i don't sleep then there are some that when i do i sleep sitting up hoping that will keep them from comimg rarely it works,but i'll try anything just once. I happy to know i have so place to come where other people understand what i go though and stop comparing me to migraines and oh you have a headache.
melissa <>
pittsburgh, pa USA
Sunday, October 06, 2002 at 14:20:49 (EDT)

Hi all, Been hurting in my head for the best part of the last 30 years. When I read some of the stories on the home page I cried. My head has hurt so bad for so long and I have never been able to make normal people understand. I think some of you do. I am in the midst of an attack now that has been going on for about 17 days now with 2-3 monster bashings every 24 hours. I am tired. I have Imitrex injection, but my arm is getting sore from the shots and it is not lasting very long. Insurance lets me have 6 Zomig every 10 days and it helps, a little. Anyway I dont want to complain, just want to say hello. Mark
Mark <>
Knoxville, TN USA
Sunday, October 06, 2002 at 04:27:56 (EDT)

Hi, I have been a cluster episodic for 30 years now. I came upon this site during my latest episode and have found it to be terrific. I won't write too much here but will probably add to the message board, etc.. Need to go stick my head in the couch at the moment.
Noel Brehant <>
Lisbon, CT USA
Friday, October 04, 2002 at 19:13:26 (EDT)

Hi. I thought I was the only one having this devil in my head as nobody seemed to understand the pain I'm going through. I am so glad to speak to people in the know. I' ve had CH for the last 12 years and have been told so much bullshit by the so called medical professionals. My latest cycle started last Saturday and is the worst ever. I thought "Guess who's back, back again. The fu*@#$r's back, back for pain>>>>". I am to scared to eat anything and am starving. Can anyone please tell me what to and what not to eat. Seems to me dairy products are not recommendable. For now it's bread and water...........
Alain <>
Pretoria, South Africa
Friday, October 04, 2002 at 10:58:12 (EDT)

Hi everyone there, i have been suffering clusters since i was 9 or ten, i really don't remember by now, i'm 35 now. I found this site very interesting on the information it contains and in the episodes narrated by all of you. I've just realized i have clusters a week ago. For several years now, every time i wake at night with the pain i just drink a cup of coffee (1 cup with 2 spoons of cafeinated coffee 1 minute on the microwave) and it relief the pain in about ten or fifteen minutes, tehn i go back to sleep. My episodes begin on March and on September mainly and lasts about 2.5 months. # or 4 cups of cofee a day help me to avoid the pain during the day. Thanks for this great site and sharing your experiences with others
Jesus Moran <>
Mexico, DF Mexico
Thursday, October 03, 2002 at 12:09:18 (EDT)

Hello I have had migranes since i was 15 now that i am 28 they have gotton more serve.I thought that i was the only one. I'm glad to find out that other people share these bad migranes,I would like to find a dr. in my town that could help me. For now i'm having to suffer. i wouldn't let my children have these although i have a 8 yr.old that has really bad headaches already. i'm glad to read that there is someone to always talk to thank you for beeing there to talk to.
Ceola Droigk <>
Crane, Tx USA
Wednesday, October 02, 2002 at 20:33:54 (EDT)

My partner has started suffering these 'headaches' again after a break..I didnt know him when he had them b4,but watching him now and feeling helpless is terrible.He has an appointment wiv a neurologist soon and we r hopefully going 2 get some clearer answers but any help from people here as 2 which is the best point 2 start would b fantastic.I've read so many messages here,some of them inspiring,some not,but each helped me understand a little bit more.I hope my partner gets the help and support here that seems abundant.Thanks 4 the site..
leigh <>
Manchester , uk
Tuesday, October 01, 2002 at 06:16:12 (EDT)




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