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 January 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

hey..my birthday was three days ago and guess what i got.you guessed it, at 2 am in the morning i woke up with a happy birthday headache..lol...yee haw 8 weeks of hell to come..i couldn't believe how lucky i was this thing must really dig me..lol..oh well i'm 39 and have had them 20 years now so who gives a rip i'm used to them now ..they hurt like hell but, i've never taken anything for them i just ride em out..i think i got the high pain tolerance from my mother nothing bothers her...ok so anyway i just wanted to say hi to everyone and let ya know i feel for you all :) mike
mike <icubooboo@aol.com>
duluth, mn USA
Sunday, March 31, 2002 at 15:09:28 (EST)

I have been suffering from headaches since I have been about 10 years old. I am now 25, and the headaches continue. My doctor has always classified them as migraines, however, with the research I have been doing, I am now convinced that they are cluster headaches rather than migraines. All of my symptoms match that of the clusters. When my headaches first started, I would go through a cycle for about six weeks or so, then they would go away for six or eight months and return again. Always on the right side of my head, centered around my eye. I can truly sympathize with everyone who has posted a message here. These headaches are from hell and can be extremely hard to deal with. They interrupt all of your normal activities and your life! About seven years ago, I started having problems with my heart. My doctor put me on Atenolol (Beta Blocker) to try and control the tachycardia I was experiencing. I have noticed that since I have been on that medication, I have been able to go for longer durations between clusters than I had before. I just started a new cycle of headaches a few weeks ago, but until then I hadn't suffered since June, 2000! I take Imitrex injections, but run into problems because of how frequently my headaches return each day (between six and eight times)and I can only take two shots in a 24 hour period. Needless to say, I end up with frequent trips to the ER for medication to control them. I am working with my doctor now to try some different treatments to help break the cycle and get the headaches under control. This site and others have been very helpful with information that I can take back to the doctor to try! All I can say to everyone is hang in there! I know these headaches are truly a battle to deal with!
Chele Patrias <mcpatrias@attbi.com>
Coon Rapids, MN USA
Sunday, March 31, 2002 at 11:07:13 (EST)

Wow i did not know that there were so many other people that has been going through the same hell i have been going through for some 25 years now.i have been using imitrex for about 8 years now just wish it wasnt so hard to get the doctors and pharmacys and my insurance companys to reconise that this is so helpfull.i have just started on predinzone today 80mg a day then tapering off after a week . my nuroligist feels this really will help. my cycle is about 3 weeks from the end if it runs its normal trend.thank god.i have been dealing with the beast for a long time and like so many of you have tried almost everything . we need to keep on going on because thats what we do. just so many people that do not understand what PAIN is all about..well its time to kick some BEAST ass. ya'll be carefully out there and hang in there its allmost over .( for now )Thanks fellow cluster heads.
Joe Zeth <jtzeth@aol.com>
New Market , Al USA
Saturday, March 30, 2002 at 10:08:58 (EST)

does anyone have knowledge of using 10 grams of melatonin in treating clusters. dr atkins mentions in his book "vita nutrient solutions", a study in which 10 grams (10,000) mg was to treat clusters with some success. after 15 months of no headaches, i am having 2 to 4 daily for the last 3 weeks. i am using imitrex injections but seeking alternatives. thanks much, joe edore jedoresr@nac.net 973-764-6417
JOE EDORE <jedoresr@nac.net>
HIGHLAND LAKES, N.J. USA
Saturday, March 30, 2002 at 08:36:09 (EST)

I've suffered with cluster headaches for over 20 years and the only thing that I've had any luck with are steroids. Only they won't give me many at any one time. Clusters have got to be the most debilitating HA.
Scot Burke <scotrock2000@cs.com>
Las Vegas, NV USA
Saturday, March 30, 2002 at 00:00:49 (EST)

I am one of you... I am in my third year. This has been the worst. They startd in early Dec, and have not let up. I am glad I found this site...
Anthiny Ministeri <aminiteri@msn.com>
Merrimac, ma USA
Friday, March 29, 2002 at 18:38:14 (EST)

I am a cluster headache sufferer.
John Gates <continuo22@aol.com>
Indianapolis, IN USA
Friday, March 29, 2002 at 17:15:54 (EST)

My doctor said that I was to young to have cluster headaches I am 31.
Danny Valdez <dannyredwood1933@aol.com>
Las Cruces, NM USA
Friday, March 29, 2002 at 07:58:29 (EST)

I had cluster headaches for a year (we called it the tumor), a very rough year, and for the last five years I have been grateful every day that they went away, no matter what happened in my life at least I did not have those headaches, lol, the headaches and stabbing pains started about six weeks ago, I just got my first shot of imitrex today, someone should have warned me, lol, my doctor told me it might hurt a little more for a few minutes, ha, anyway the tumor is back, but I am doing better at least for now, I came home and found this web sight, and I am grateful, it helps to know that I am not the only one, thank you
Cathy <Catherineef@earthlink.net>
phoenix, AZ USA
Thursday, March 28, 2002 at 17:56:15 (EST)

I am a 25 yo loving wife and mother of two. I have been suffering from CH's since I was 14 yo. That's 11 years of uncontrolled hell. I too have been to 2 neurologist's, allergist, chiropactor's, and have even asked my dentist to check out my mouth because my teeth hurt when I get my beast. Along with my teeth, my nose, my eye, the side of my head, my neck, and even sometimes my shoulder on the right side get the ice-picking pain. If only it would flip flop so that the right could get some relief but no. I have been diagnosed with sinusitis, allergies, migraines, and finally the cluster's. To releive the pain I use Advil Migrain, Tylenol 1,2 and 3, Demoral (shot in the butt), Zomig, Amerge, Florinal, Imiterx, and some wafer thing that you put on your tongue and let desolve, basically anything I can get my hands on. I have also been on Sandomigrin and I am currently on Amitriptilyne 5x25mg at night. Mine were a different times of the year and lasted anywhere from 2 weeks up to almost 5 months, 3-6 a day. The only time I found for sure that they would stay away was during both of my pregnancies. A week after my daughter was born (2 years ago)they returned for approx. 3-4 weeks and I had been free of them up until about 2 1/2 weeks ago. I am now have anywhere from 2-6 a day. At one of my many trips to the ER a doctor told me that I should stay pregnant and then he laughed, I didn't. I worked at a family run place for almost 10 years and they were very good with letting me off when I got one. I recently left there to stay at home and raise my children. Now I not only have a hard time taking care of my family alone, I am now realizing that I will probably never find another job that can work around the schedule of my head. I too wonder if someone would classify this as a disability. Altough my family loves me I still felt very alone often wondering about ending it all myself but then looking at my kids I say never. Thank you for this site. It is depressing to know that they may never have a cure but also I find comfort in knowing that their are others just like me. Take care everyone!
Jamie Hobbs <turnerandhobbs@gosympatico.ca>
St. Catharines, Ontario Canada
Thursday, March 28, 2002 at 15:19:59 (EST)

Wow. I didn't know there were so many people that go throught the same thing that I go through. I'm only fourteen and I am a migraine/cluster headache sufferer. Reading other peoples entries tells me that what I do during my headaches is not silly but common for example when I would have a cluster headache I would take the palm of my hand and press it against my eye as hard as I could and would grind my teeth and bang my head against the wall. it really puts my life in hold. And with migraines...forget it!! All I could do is pray.
Nathalie-jane <hermosanj@msn.com>
Port St. Lucie, FL USA
Thursday, March 28, 2002 at 12:31:08 (EST)

I think I am comming to the end of a cluster (anout 8 weeks now..), and the attacks are only comming once a day and are usually mild for a cluster headache (i.e only something like a really bad hangover) I am no longer vomiting so I can take the new drug Naramig, which seems more effective than the older Imigran tablets (I used Imigran nasal spray for the early realy BAD - (The someone please just shoot me type) - for the early headaches. One thing I have noticed is that the I can cut the Naramig in half with a pill cutter, and it seems just as effective. So for about $20(Aus Dollars)I can get over 4 mild attacks, and still I have my Imigran nasal spray just in case.. I have also been having lots of Vitamin B12, my Neuro's pet theory is that Cluster is related to a B12 deficency, drink lots of H20 and remember that it will go away, so my suffering brothers and sisters out there good luck and I hope you find something that works for you.
Chris McGowan <cmcgowan@bigpond.net,au>
Sydney, N Australia
Thursday, March 28, 2002 at 06:52:17 (EST)

im a 35 year old male.been having these headaches for the past 15 years or so. just recently been told by a doc that i have 'cluster headaches. they hurt bad1111
nathan kemp
superior, wi USA
Wednesday, March 27, 2002 at 22:16:13 (EST)

Hello, been CH free for 2 years and just started my cycle 3 weeks ago. Been getting by on 2 shots of imitrex a day(fighting with the pharmacist daily). Just went to a Headache Clinic and had a total breakdown(doc was really impressed) Just started Steroids & Lithium. Has any one heard of Raynaud's syndrome being related? Let Me know.
Sandra <campbellsquntm@aol.com>
Quincy, Ma USA
Wednesday, March 27, 2002 at 20:52:55 (EST)

I have been having cluster/migranes for the past year. The only medication that helps is a shot of 10 and sometimes 15 miligrams of Nubane. This obviously takes a trip to the hospital and someone to drive me home. The medication works wonders but it has gotten to the point that the people at the hospital think I am a junkie. Does anyone know of a medication in pill form that I can suggest to me Dr. that would provide the same results. Any assistance would be greatly appreciated. DOUG
douglas <ksks911@hotmail.com>
topeka, ks USA
Wednesday, March 27, 2002 at 20:45:17 (EST)

just need to find relief from all the pain, ive been having these headaches for almost 15 yrs now.
james rollins
san bernardino, ca USA
Wednesday, March 27, 2002 at 04:17:11 (EST)

I have just ended a 6 week cycle with my friend Mr Cluster, I am exhausted, however soooo happy they are overwith again, so what will it be 2 years or 5 years until I receive another visit lol Thank god for imetrex and amerge!! These two drugs have helped me imensley over the past few years! Remember when we had nothing? Don't want to ever go back there!! Cheers everyone! K
KellyN <kelly.nelson2@sympatico.ca>
Toronto, ON canada
Tuesday, March 26, 2002 at 20:17:19 (EST)

Glad I found this Page. My Daughter Donna 32 yesterday has been have headache for Years. They are now getting worse and are now waking her up in middle of night. The doctors don't seem to know how depressing it is to her that they can't seem to get them under control. so I am doing some research on head aches and trying to find another Doctor. Any info much Appreciated .. Donna's Dad ED
Edward A. Sweezey <Sweez@yahoo.com>
Spring Grove, Pa USA
Tuesday, March 26, 2002 at 08:55:00 (EST)

Well I guess im new to the community. I Had never in my life had a headache before. until 6 weeks ago.and oh my god what a change these headaches have had on my life.they just wont go away.will they ever? im a supervisor for a construction company. and I just cant function anymore the way I need too.is this going to be like this the rest of my life?
mike ayers <agroundhog@aol.com>
muncie, in USA
Monday, March 25, 2002 at 19:26:03 (EST)

When I read this message board for the first time a few days ago, the tears ran down my face as I could have been the one writing any number of these messages! Finally I have found comfort in knowing that there are other people in the world who understand the pain that comes with cluster headaches. For many years I have tried to explain the hell that I go through for 6 weeks when I enter a cycle, only to see them say in their eyes "hey, it's just a headache, we all get headaches". Only a cluster sufferer could possible understand the agony and fear that that we go through. I am 42 years old and have been suffering from these dreaded attacks since 1986. I should perhaps be grateful that my cycle returns every 3 and a half years and not more often. I rotate between the spring and fall with every cycle. In the beginning, when my head and face begin to feel strange, I always pray to God that it's just a sinus infection yet am afraid to see a doctor because if he says it's not my sinuses, I know the hell I'm going to have to deal with for 6 weeks. Afraid to close my eyes, afraid to leave the house- my comfort zone, dreading the next attack and being totally exhaused and drained from pain and lack of sleep.I sometimes feel so alone ans isolated from the world. I have yet to find anything to prevent an attack, sansert didn't do a thing. I do take cafergot, butalbitol and pound down cups of coffee while pacing and hitting the side of my head during an attack. This seems to be the only thing that get's me through it. I tried Zomig with some success last round, but the doctor realized the doseage required for 3 attacks a day exceeds the maximum dosage of the drug. So for now, I make due with what I can. The inronic thing is that when the cycle is over after 6 weeks, I sit back and say "oh, that wasn't that bad". I do think the attacks affect my memory. I believe I have been spared this spring. I do think I have a sinus infection this time around. I sure hope so. Many thanks for all the information and support you all have given me. I can use it even if I'm not in the middle of a cluster cycle. My heartfelt thoughts go out to each and every one of you. I too understand all too well.
Keith <tb0610@nycap.rr.com>
Schenectady, NY USA
Saturday, March 23, 2002 at 21:00:32 (EST)

I have been in a cycle for over 5 months, averaging 3-8 attacks a day. My doctor finally tried prednisone, I have been on it for a week and pain free.
chuck jensen <chuck528@hotmail.com>
Salt Lake City, UT USA
Saturday, March 23, 2002 at 07:50:50 (EST)

The greatest day that I had was finding this site and knowing there are many of us that can say....hey yeah, I know what that feels like. I felt so lost and alone until I found this site and had a very caring person e-mail me. It is like I have known Judy my whole life and have found out fast what a good friend she has become....thanks to this site. How can you explain to someone who does not go thru these headaches what it really is like. How many times have we said "I just can't take it anymore" and family and friends want to help, but don't know how. I was always a good one myself saying to people, "Hey you'll live, it's just a headache", and now I have ate those words so many times. With this site we do have someone to say that we just can't do it,to cry with, laugh with and just to be there for each other. Again, I thank CH and Judy so much....Gaydene
Gaydene <drsges@theramp.net>
Mendota, IL USA
Friday, March 22, 2002 at 09:02:40 (EST)

I am a sufferer of cluster headaches, unfortunately, there doesn't appear to be a web site in the UK. If anyone knows of one please let me know. I am going through a phase at present, awaking at approx. 2am every morning. I usually take two Propain Tablets (Very Strong) but these do not take effect on a cluster headache until about 1 hour after taking. In the meantine I am crying with the pain and trying to bury my head in dark places. We come over to the USA at least once a year and if there is anything I can buy that is produced just for cluster headaches, please someone let me know.
Pam Hibbert <pamelahibbert@aol.com>
East Tilbury, England
Friday, March 22, 2002 at 08:31:56 (EST)

Dr. Wright's Circulatory Feedback 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. Its not a miracle, but its been very helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on redirecting blood circulation in order to retard flow to the head. This is done by trying to send 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. 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, its very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is 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. Its important to keep at it THROUGH the pain. This will be difficult, but its the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It 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, its very hard to focus, but I think its 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
Charlie <charlies@netsync.net>
Jamestown,, NY USA
Friday, March 22, 2002 at 02:50:44 (EST)

I'm 49 and I had my first episode about a year and a half, it lasted for about a month every time at around 4 o'clock. they've come back 2 weeks ago, once a day. Thanks God I'm not alone.
mario rengifo <mrengifo@camanchaca.cl>
santiago, chile
Thursday, March 21, 2002 at 16:07:18 (EST)

I have just started on topamax, wonder if anyone else has tried this remedy and if it is any use
GORDON KENNAWAY <gordonkennaway@hotmail.com>
Scotland, Great Britain
Thursday, March 21, 2002 at 14:09:20 (EST)

I can relate to the classic Cluster Headache sufferer. My story is as follows: I used to get some form of migraine headache from the ages of 13 - 25 yrs of age. Nothing (no medication) seemed to help with any degree of consistency. It was just something that was a part of my life. At age 25, I started seeing a chriopractor; in which I believe was the reason I stopped getting these headaches. (or so I thought) In 1999 (now age 27) I relocated to another part of NYC & my headache came back stronger than ever. I mean the kind where I was rushed to the hospital for injections on consecutive nights!!. Ultimately they went away again for about 3 years. Now, its March 2002 & guess what? They're back!!! Yes, I've been to the hospital emergency room 4 times within the last 2 weeks, and right now I'm taking inderal capsules, diovan for the blood pressure, and furiosete (which does'nt work)for anything in between. For those fellow sufferers, try to have your blood pressure looked at. We all know that no one really knows what causes clusters, or migraines. My doctor seems to think that mine are related to high blood pressure.
Marc Alston <mdalston@hotmail.com>
Peekskill, NY USA
Wednesday, March 20, 2002 at 19:49:09 (EST)

I've suffered from cluster headaches for almost 10 years. It's nice to know I'm not alone. Thanks for this website!!!
Stephanie Gogan <ScottnStephG@aol.com>
Schwenksville, PA USA
Wednesday, March 20, 2002 at 17:39:40 (EST)

Hi Everyone, I have suffered from a chronic headache, 24 hours a day 7 days a week for the last 18months with no relief from any of the medications or treatments that I have tried. I have had investigations for tumours, migraines, head injuries, spinal injuries, etc etc with doctors seeming keen to diagnose, even if this is not the correct diagnosis. I am unsure if I have cluster headaches but would like to join a support group as I any advice would be much appreciated. I have been browsing this site and was interested by the water treatment therapy - since I have had this condition I have been exceedingly thirsty and at one stage was drinking over 10litres of water a day! However this has not helped the pain at all. I would be interested to hear from anyone who has similar problems or could offer me advice :)Kylie
Kylie <beardkylie@hotmail.com>
Palmerston North, NZ
Wednesday, March 20, 2002 at 16:52:29 (EST)

My headaches are so bad I do not even want to think about one. There are few things in life that I fear more than one of those headaches. Mine have progressed over the years to a new level, I have now what is know as an cluster optic migaine. You are walking, driving, reading or what ever then your vision is like looking through broken glass. The first time it happened I thought I was having a stroke.
Marissia Seals <mlsjcs@aolc.om>
Rogersville, AL USA
Tuesday, March 19, 2002 at 12:04:23 (EST)

Wow I can't belive i have found a site with so many other sufferers I too have suffered Cluster headaches for about 20 years now for the 1st 16 or so I was being treated for infected sinuses.It is 11pm saturday night and what am i doing sitting here waiting as i know i will be having a bad one as im into my 2nd week now of the cluster too scared to go to sleep as i know i will be woken by the pain upto number 10 on the scale for me this week only good thing is they cant get worse only better another 2 weeks and they should be gone until next time this is my longest period with out them it has been 3 years normally i get them once a year so a break of 3 years was a blessing i thought i may have beat them but no they returned.It is comforting to hear and read that others go through the exact same thing and that im not alone as i do not know another person that suffers from them.In the past when i was younger and working at my 1st job when leaving school I was put on a written warning for taking the a few days off work as i was told by my boss that he suffers sinus and doesnt need to take time off,God if he only knew the pain i was in every night,I also lost a job on my 1st shift as a waiter when i was about 22 a head ache hit me just as i was starting my shift only a short one about 20mins i worked through it it left me drained and my speach slured and i was accused of drinking whilst working so i never got another shift at that job.Im just glad to know now that what i have does have a name and that there are other sufferers as i was feeling i was the only one
Glenn Annesley <glennannesley@hotmail.com>
sydney, nsw Australia
Saturday, March 16, 2002 at 07:17:49 (EST)

I have been suffering with cluster headaches for 20 years. My clusters last for 2-3 weeks. They come in the spring or fall, every 12 to 18 months. I take Tylenol and Hydrocodone. I also use as ice bag on my eye during an attack.
Michael Bronson <michaelbronson@yahoo.com>
Northbridge, MA USA
Friday, March 15, 2002 at 20:42:21 (EST)

I've been crying off and on all day. That would be because "The Beast" came back to visit me after being away for the past three years. Wish it would stay away! It wasn't to bad last night, maybe a 3. But I know what comes next. And I'm scared. I don't know if I can take this again. I've had this on and off since I was 10. I'm 45 now. That is a long time to deal with this. The last time "The Beast" came for a visit, I had just left a Bruce Springstein concert and was driving down the Mass Pike with my best friend, holding the left side of my head and praying for an exit so I could get out of the car and let her drive us back home. Thank you (you know who you are) so much for that!! I might have crashed if you weren't with me. I'm scared right now, and praying that maybe I'm wrong and it won't happen. (It always starts with denial. Maybe "IT" will just go away.) But I know better. And I know what the next few weeks of my life will be like. Afraid to go to sleep and wake up with the damn Beast ripping the left side of my head off! No sleep! Having a CH hangover in the morning and being late to work, and talking to people and slurring my words, and having them think I'm a drunk. And knowing that the "10" is comming. That is the worst. Knowing that I'm going to have a few of those is the worst part. The night walking, head banging, wishing I had enough of a mind left that if I could find a gun, and if I could load it (which, at that point is impossible........you can't even walk!) I'd end all that pain!! But, I know the routine. Somehow you suffer through all the pain, go about your business, and just pray for the cycle to end. And pray it doesn't happen again. But you know it will. And, once again, you deal with it. Fact of life when you are a member of the CH club. Guess it's time to suck it up and take care of business. Time to go and battle "The Beast" once again, and kick it's sorry ass into a three year remission once again!! Think of me as I go forth to battle "The Beast" once again!! It is a noble fight!!!!
Tom Sakowski <Mental8@99main>
Mansfield Center, CT USA
Friday, March 15, 2002 at 19:53:36 (EST)

hello,im jody. i dont know just how long i,ve had miagrains, im now 52 yoa and i remember coming in from playing outside as a child, before school years and asking my mom for asprin. my mia starts behind my left eye and within a day moves to my right eye, becomes major at that time and last approx 5 days. during that time i cant hardly function for the 2nd & 3rd day. usually by the 5th day i begin to feel better & the 6th im ok. i can usually go 2-3 weeks before the next one hits. i always have a headache that never stops, these i can live with, the miagrains are slowly increasing in intenesty as time goes. i take imitrex injections & tablets which makes it worst for an hour or so ,i really hate that becouse of the added pain. i believe if i didnt take anything it would still go away in a few days. i have imitrex & pain pills and i dont like either. my worst one ever was this past tuesday. i was at the gym and walked 2 miles thinking it would ease up a bit, it didnt it just got worst so i went home, took an injection, ana broke out in a heavy sweat, got sick at my stomach, and actually thought i was haveing a heart att. i dont know what else to do. i have also tried acupunture , didnt help. can anyone help? thanks jody.mar 14 2002 7:pm
jody wolfe <rjwolfe777@aol.com>
birmingham, al USA
Thursday, March 14, 2002 at 20:00:02 (EST)

please add my name to guest book. thanks. Looking for info on cluster headaches
nannette pierce <nannurse7@aol.com>
san diego, ca USA
Wednesday, March 13, 2002 at 22:42:53 (EST)

Hello sufferers; I to suffer from CH. At the start of Menopause is when i first started with them.I have had them for ten years now. Over menopause but still have the devils pain. I only get them at night which I'm on a cycle now for three days now. I found relief I use about 8 pillows at bedtime I sleep sitting up. The one thing that causes the pain is blocked sinus cavities. When your flat on your back or side or stomach there is no drainage. Also when I feel the attack coming on at the base of the skull where it meets the neck I apply pressure to where it hurts the most appling pressure and massaging does relieve the pain for me.I do hope these two entries I just entered will help someone out there. Please email me if you do try these and let me know if it helps. Ive been on Verelan which is a channel blocker, singular 1at nighttime and serevent inhaler 2times a day. Im glad to see there are women out there who suffer to since the Dr told me they are mostly found in men. So glad I found this website even and husband read the entries, and understands better what we go through Hoping to hear from someone God bless us sufferers.
Kaye <kmarie@dandy.net>
Villas , NJ USA
Wednesday, March 13, 2002 at 19:06:13 (EST)

I now know what I have. I have suffered from cluster headaches for about 2 years now, and I or my doctor never knew what was wrong with me until now. It was diagnosed as a sinus infection on more than one occasion. My wife just happened to be reading through some articles from a medical journal for school and asked me if these were the symptoms of my headaches. I fit every symptom to a T. I couldn't believe that there was a name or other people with my headaches. It always occurs on the left side of my head with a tremendous amount of pain behind my left eye leaving only my left sinus congested. Now I will know what to tell my doctor next time I have an attack. The last attack I had was in November, but I know more are coming soon. I feel so relieved now that I know I am not the only one.
Corey Rome <coreyrome@hotmail.com>
Luling, LA USA
Wednesday, March 13, 2002 at 12:32:45 (EST)

Dear sir, I am a Holistic Healer and can heal all nasal and headache problems.'Defacto' I have been doing this since 8 years with the success rate of 100% till date with the grace of ALMIGHTY. thanks and regards, Dr Rajivlochann
Dr. Rajivlochann Vijay <rajvdr@yahoo.co.in>
AHMEDABAD, GUJARAT INDIA
Wednesday, March 13, 2002 at 02:31:24 (EST)

Wow...a site dedicated to Cluster sufferers...cool...Yes I am one of you...this started about five months ago...I dread the feeling of onset and the uncertainty of duration...How refreshing to have found this site.
Tom Lalonde <tdlalonde@shaw.ca>
Victoria, B.C. Canada, USA
Tuesday, March 12, 2002 at 17:29:21 (EST)

My father has been suffering from clusters for many years. He is currently 62 and doesn't speak English (we're all Spaniards), so he and my mother asked me to check this site out for them. I just wanted to say thank you to the people managing this website. It's quite refreshing to get some good info. I should know, because we didn't know what to call his awful migraines until a doctor last year finally managed to do the proper diagnosis. At least, now we have a name for it, and know much better which things work best. He's using oxygen and Imitrex, and it's made a tremendous difference! Keep up! And enjoy (as opposed to suffer) your life as much as you possibly can.
Juan Carlos Arevalo-Baeza <jcab@JCABs-Rumblings.com>
Novato, CA USA
Monday, March 11, 2002 at 02:30:19 (EST)

please help my clusters are getting to me
CHARLIE <COMPAQ5020@AOL.COM>
TOMS RIVER, NJ USA
Sunday, March 10, 2002 at 22:59:53 (EST)

Evening fellow Cluster Heads. Im sitting here in the "shadows". Three weeks into cycle, a new twist this time. Time of day has shifted, intensity different. And I caught the flew from my stepson after week one. I was hoping that the flu might break the cycle, but......nah. I just ended up suffering from both instead. I was in remission for 18 glorious months before this. Before I was in cycle twice a year, spring and fall, 4-6 weeks in cycle, 4-6 times a day. I dont drink any alcohol in cycle anymore, thats a definite trigger for me. But as far a smoking, I have suffered from CH both in times when I was smoking and during periods when I was not....so who knows. This time I have tried forcing water. Natta. Nuttin. No change. I have not gotten a doctor (in 15 years) to diagnose CH, so Im trying tips from this web-site, home remedies, over the counter....and alot of suffering. Has anyone here tried that thing that you can buy that massages your head??? It sort of looks like a headband. You put in on to try and abort I guess....not very practical at work though to be walking around sporting one of those.......god bless all and good luck in your search for relief.......John
John <Engaoe10@aol.com>
Norfolk, VA USA
Friday, March 08, 2002 at 21:23:36 (EST)

I would like to learn more I have had headache cluster for about10 years. I am seeing a good doctor here. Thank goodness.
RV <Happybirthday_1@msn.com>
Greensboro, NC USA
Friday, March 08, 2002 at 11:41:03 (EST)

I have been a sufferer for 32 years Verapimal is my saviour.
ed olander <xchewyoo@aol.com>
corning, n.y. USA
Friday, March 08, 2002 at 11:35:20 (EST)

I have suffered from CH for about 40 years. I am now 63 and was hoping to "outgrow" them. No such luck! I buy my Imitrex from Canada RX at about 1/3 the cost U.S. I use the injectable and divide the syringe into thirds(canada sells the old fashioned type of refill syringe. I have been using Methergine for over a year now but I worry about Retroperitoneal Fibrosis. I have an appointment with a neurologist this P.M., who I hope can come up with a substitute for the Methergine. Unfortunately, there are no cut and dried answers for our "problem", but if you can handle Imitrex injections, go for it!! Also, I have tried aerobic excercise (at2 AM) and can abort the H.A. most of the time. I use my treadmill or Healthrider to get the result. My best wishes to all you Cluster sufferers. Hang in there!!!
Steve Bailie, DDS <skbailie@hotmail.com>
Indianapolis, IN USA
Friday, March 08, 2002 at 11:13:03 (EST)

Hello,I am a new member. My husband has had cluster headaches for about 20 years. We have been together for 4 yrs. He has tried EVERYTHING so I am trying to help. Does anyone have info on botox injections for cluster headaches
eva <perraultgary@msn.com>
USA
Thursday, March 07, 2002 at 15:44:55 (EST)

I'm a 50 year old female who has a 20 year history of episodic cluster headaches. I am interested in hearing from those who have identified triggers that brought on attacks. Also any new treatments that have worked to avert attacks or intervened to stop them. It's wonderful to have found this site and to be reassured you are not alone in the madness! Brett
Brett <bbwalsh@mail.gov.nf.ca>
St. John's, NF Canada
Thursday, March 07, 2002 at 07:49:31 (EST)

Had clusters for several years from age 32. At the age of 54 the ceased for 6 years and have now returned. It was a great 6 years.
Ron Yagla <ronyagla@msn.com>
Watauga, Tx USA
Thursday, March 07, 2002 at 00:43:57 (EST)

Hello everyone, I'm 47 years old and thought I had my last episode about one and one half years ago. My most recent episode started three weeeks ago and can't wait for it to end. I've been a sufferer of clusters since age 20 and thought I was the only one. I couldn't even imagine any one else experiencing the same kind of pain that i was having. It was even harder explaining to my doctor the kind of pain I was experiencing. Only a physician who experiences clusters would understand. I am very pleased to know there is a web site with other sufferers who definately understand. You'll be hearing from me again. Sincerely, scuseme2525@aol.com
richard <scuseme2525@aol.com>
mandeville, la USA
Wednesday, March 06, 2002 at 01:27:58 (EST)

The best help and comfort I've found in helping me through this 13 year agony. Too bad I didn't know about it sooner. Thanks
Tim Stites <TimO2888@aol.com>
Brick, NJ USA
Tuesday, March 05, 2002 at 15:09:11 (EST)

I convinced myself that my clusters were triggered by the imbalance of hormones since my first cluster occured 4mos. post-partum after the birth of my first daughter 5yrs. ago (the headaches occured every night for three months). I was cluster free until 4mos. after my second daughter was born almost 3yrs. ago (every night for 2 mos.). Hormonal, right?? Now, without a newborn in the house, I'm back in hell again. I'm an R.N. who works 7am-7pm and have 2 little girls who don't understand how a headache and sleepless night can be so debilitating...or why I lock myself in the bathroom in the morning (my clusters usually start at 2-3am and occur throughout the night until around 7am). I'm just very tired. I know that I should be thankful for the good things in life (my husband was at the WTC on 9/11 and alive and well, thank God) but I'm JUST SOOOOO TIRED!!
Dawn <sarivia@aol.com>
East Meadow, NY USA
Tuesday, March 05, 2002 at 08:28:52 (EST)

help i need a cure which can give instant relief
mark spencer <mrkdruid@aol.com>
ting, herts england
Monday, March 04, 2002 at 17:04:19 (EST)

I talked with a woman who suffers from cluster headaches and found I was not current on the info out there on there type of headaches. I have pulled the symptoms on this type and will review it with the staff on the next inservice day. Thank you.
Joleen Huntley, RN, MS <joleen.huntley@bannerhealth.com>
GIlbert, AZ USA
Monday, March 04, 2002 at 14:23:17 (EST)

Hi to all the CHs sufferers and their families too. Im the mother of a 13 year old girl who suffers from cluster since she was 11. This is not my first time at the board, but I changed my e-mail, I want all of you to have it. Shes now under a 4 month period of this !!! pain. She has lost already this school year cause she dont get to sleep at all at nigt, she statrs at 11 p.m and finishes around 4 a.m., so she sleeps during the day. Shes probably having an operation on the trigemine nerve to make it stop in the next month, but still waiting for a miracle before we take the decission. Our live has turned into hell during the last four months, she used to have periodic CHS, but know I guess it turned chronic. ITS JUST NOT FAIR!!!!!!!!!!!!, SHES SO YOUNG!!!!!!! IM SO MAD,. IF ANY OF YOU ARE A PARENT OF A TEEN CLUSTER SUFFERER, PLEASE WRITE TO ME!!!, tell me how to deal with this.In fact this will be her 3rd operation, the other two were of the cephalopalitine ganglion, but neither of them worked. HAS AANY OF WOU EVER HEARD ABOUT GAMMA KNIFE?, that comes from nuclear medicine, its an operation that takes sensibility off the trigemine nerve and its supossed to be defenitly a cure for the pain, its done through radiation, with no anesthesy.Ive got an appoinment next tuesday to find out whats it about, and to know if it can help for CH. If I get good knews I will let you all know . God bless you all, specially children
Marcela <margoc@att.net.mx>
Mexico D.F, D.F Mexico
Sunday, March 03, 2002 at 19:14:37 (EST)

Im 55 years old, and have suffered from cluster headaches for 30 years. I am looking forward to visiting this site often.
Tim Maloney <toby@tc3net.com>
Adrian, Mi. USA
Friday, March 01, 2002 at 23:03:06 (EST)

hello my brothers and sisters clusters headace suffers this is my story i have suffered with these headaces for years have tried all kinds of medicines nothing works when i go to theses doctors i have come to find out that they dont understand because they have never had these headaces so they think that it cant be that bad but we know let me sum this up in a nut shell if you are hurting and there is something that stops the pain or lightings the pain by all means use it and thank god if you cant finds and thing to stop the pain when your headaces come and yes this is the closes you will come to deaf, yes i mean what i am about to say tell that headace go a head and hurst it couldnt be any worster than what i am going through now yes it feels like you are going to die if you can not stop the pain dont give in to it i use my pain and say that if i can live through this________________ you fill in the blank, i can do any thing in life if i put my head and heart in it because i am putting all my head and heart in to fighting this pain i say all that to say this you will surive it will hurt like hell put when it is all over you will be standing yes you and not those dam headace and every time they come back and every time they end you will be stroger after every attack let me try to help in other areas in trying to stop the headaces(dont hold theses thing in your heart-anger,worry,past mistakes,sadness,depression,nothing negative.)put hold these thing in your heart(GOD,thing that you enjoy like family,hobbies,thing that you enjoy as a child,and spouses i know that you fell helpless when we are going through the attacks and there is nothing you can do put pray and get any thing they ask for if they think it will stop the pain,and when these headaces go away do thing like exercise eat right thing that are good for the body,lauhgter,love without falt we can beat this pain only we can because only we know the true pain within our head.and to you frist timer you have and will never experinece any pain like this yes go to the doctors and what ever you think will work and when you have try all the so called cures and i hope they work but if not i want you to think about all i said above.AND MY (GOD)HELP US ALL!
ollie climons <aclimons@bellsouth.net>
canton, ms USA
Friday, March 01, 2002 at 14:27:47 (EST)

 

 

 


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