Journal of Migraine Sufferers

Hi,

My story starts when my twins were 2 l/2 months old at about 3:00 a.m. in the morning with a servere pain that I had never experienced even with child birth.

My doctor thought it was a stoke since I had a C-Section with my twins and had my husband rush me to the ER, where I had my first lesson on what a migraine was. They gave me a Demoral shot which made me throw-up and then put me to sleep for the next 24 hours. After that one I continued to have more and more migraines at which time my doctor just kept giving me Demoral pills to take. It was kind of hard being a mom to twins and taking the pills for relief.

Through out the years I have tried so many different things, what ever is out there, I have learned to watch my food and the diffferent chemical's that can cause an attach, and even learned that the heat (Miami, Florida) can also bring on a migraine. I have gone from Demoral shots and pills thru to Imitrix, which time I thought I was having a heart attack because I couldn't breath. But the worse thing I think for me has been having my watch my twins grow up with mommy having a boo-boo in my head, too mommy has to lie down because she had a migraine. My kids didn't understand what this thing was that took mommy away from them. There were so many times that Daddy had to take them and leave me home because I would have another migraine. I have missed birthday's, weddings, all different kinds of occasions. I feel that I have lost years of my life from the migraines, having to lie down in a quiet dark room, and having to dispoint my kids over and over again.

The one thing that has helped me to cope and learn to live with them has been my husband, he has been there from day one, thru thick and then, when I would call him home from work in the middle of the mornings, knowing that I couldn't fuction or take care of the kids. Sometimes I get mad and ask why did I get these?, but G-d doesn't answer me.

I think the hardest thing is trying to prove to everyone that I do have terrible pain, even though there isn't a test out there to show it, and have to disapoint my family and friends, because I couldn't pick my head up. My kids have learned how to help me when I throw-up, watched there Daddy give me countless shots, and the worse of it, having my life go on right in front of me and not being able to join in because of my migraines.

Well that about summ's it up, just wanted to tell my story, and let other's know that there not alone out there. I found talking and comparing notes with other migrainer's really helps me on the low times that I'm feeling sorry for myself.

Sincerely,

---Dorie Teddies918@AOL.com


my fellow sufferers,

I'm 34 years old and have had migraines for 14 years. I've tried ultram, inderal, depakote, fiordinal with codiene, imitrex, feverfew, homeopathy, vitamins, food allergy tests, chiropractic, massage, and prozac-though I use that for the deep depression that I have had for just as long. I'm sure that you all can relate to depression from having to deal with all that one does when living with migraines. Almost everything has worked, in some form, for a period of time. But "they" always come back. The fiordinal works for me, which makes me feel lucky after reading some of these letters in which nothing has worked for them. But, I'm taking at least one fiordinal a day. I can tell that I don't need to take it everyday but when I try to limit my dosage I get a bigger than normal migraine and have to take more fiordinal than I would have if I had just taken my daily dose even if I didn't really need it.

And after taking so much imitrex and fiordinal I feel horrible for days. I'm trapped. And since my doctors don't have any advise I need to know if anyone out there has gone off meds and how it was done. I would like to just go into the hospital and get off the fiordinal, but the idea of not having the drug that I can't live without at the moment is rather scarry to say the least. I do have an appointment with a new neorologist that specializes with migraine sufferers and withdrawal this week, but I don't want to have all my faith in one doctors hands because if he disappoints me I might try to hurt him.

My last neorologist made me so mad the way he treated me. Any advise or information would be appreciated.

thanks,

---ana annabo@worldnet.att.net


Dear Rhonda:

After reading through many of the recent letters I have been moved by the lengths some people have gone to try and find relief from the pain. It is comforting to find others who understand, since so many don't and never will. I have suffered from migraines since i can remember, although the frequency has increased as I have aged. I am 30 years old, and suffer migraines of the 1 to 3 day event type which originate from my neck and creep across the right side of my skull (occasionally left, though). I suffer from the classic symptoms - light and sound sensativity, blurred vision, slurred speech, inability to think clearly, yet somehow have never experienced nausea. My frequency is up to one every ten days, though since I have quit smoking this frequency appears to have relaxed to 1 every 14 to 21 days. I have identified numerous triggers and avoid them as best I can, however, I detest having to limit my life to the world of a protective bubble between me and my triggers.

I have gone to numerous medical experts, but none have helped. In fact, one neurologist put me on a Beta blocker that triggered migraines. The entire experience has caused me to cast a suspicious eye on the entire medical community. I have found that good chiropractic care can reduce my frequency to one every month or two, yet it has not eliminated the migraines, which is my goal.

My ability to work effectively has suffered (employers ignorant of the difference between a headache and a migraine don't take kindly to sick days due to "a little headache.") I find I would rather lie about my condition since some of the people I work with have suggested I am just using it as an excuse not to do work. I can't tell you how humiliating this is sometimes. Since I am a man I also get the complimentary, "I thought guys don't get migraines," thrown in for good measure. In my personnal life I have had girlfriends who either make light of the problem or sympathize greatly. While growing up I had a mother who reacted to my "whinning" by giving me an excedrin and telling me to just go to sleep. The excedrin, by the way, did nothing, and trying to go to sleep with a migraine is like trying to relax while someone applies a skill saw to your head.

I don't know what I'd do if the things didn't respond to Ibuprofin. Nothing else has worked, yet for some reason about 90% of my migraines can be controled with ibuprofin, particularly if I get the aura and take the pills at that time. The only problem is I still undergo blurred vision and speach, and lose my ability to concentrate, so coworkers suspect that I am a closet alcaholic. Pain killers, such as codeine derivitives and so on, have done nothing for the pain. In the case of my taking Percosets I experienced the strange sensation of bliss and pain at the same time, if that makes any sense.

I hope that someone out there can identify with my case and can offer me hope that I will one day be free of the pain and associate social problems accompanied by this dissorder. If anyone would like to respond to my posting I may be reached at mr_2@ix.netcom.com

Thank you and good luck!

---Mike C


Hi Rhonda !

My name is Mike and I have had CLUSTER MIGRAINS scence I was 9 years old . Now Iam 36 and every year they seem to get worse.They come every Jan,Feb lasting 2 to 3 mounths. I get them every night while Iam asleep and right now there at a peek ? Iam marreid and have 3 great kids and I PRAY TO GOD they never have to endure the torture and massive pain I have had . I have seen nuroligsts and every other DR. know to man and the only thing I fond that works is Imitrex SubQ. But all is not well even with that , my insurance only pays for 4 shots a mounth, its almost like putting the carrot in front of the horse. $170.00 for 4 shots why not? Even before Imitrex when the pain got to great I would bang my head on the floor or hit my hands or feet just to make the pain move somewhere else.Even suicide became an option , but now I have a morgage so I ruled that out. If any one else suffers from CLUSTER MIGRAINS or just needs to talk email me. I have not found a local suport group yet but soon hope to .

Your Friend in Suffering

---Mike pickels@totcon.com


Dear Rhonda:

My sister-in-law suffers from migraines and since they are not online, I volunteered to see what I could find out. Jeanne has suffered for years, has been through many pain killers (demerol and percadan which no longer work) has had steroid shots (depomedrol) but they are decreasing in effectiveness. Her doctor is now talking about a procedure called thermal coagulation and /or nerve sectioning. I've put these terms into the seach engine and come up empty. Does anyone know anything about these procedures and their effectiveness. My brother tells me she's in extreme pain. Please send any info to Lora at nicholsn@willapabay.org

Thanks


Dear Ronda and others,

I am 22 years old and I have sufferred with migraine headaches since I was somewhere around 13 years old. I have a strong family history of migraines (mother, aunts, grandparents), although many of the doctors that I have seen claim that there is no genetic link to migraines. So far my treatment has consisted of injections of all types, vistiril, demoral, nubane, imitrex. Nothing helps. The narcotics take the edge off of the pain, but I can't live on narcotics. I'm an accountant and I must be at least semi-alert or my clients don't have a lot of faith in me. Before finding this page, I thought my headaches were odd, because of the duration. I only get a headache every 3 months or so, but they last for 1 to 2 weeks. I experience visual disturbances, weakness and tingling in my extremities, and difficulties in speech.

I've seen countless doctors. Unfortunately we live in an extremely rural area and there are very few professionals who understand or will even take the time to try to understand these headaches. I compare the headaches to an army of toy soldiers lined up just waiting to march across my head.

I've reached the point of desparation. I saw my third neurologist this morning and he said to stop taking medication for the headaches and just live with them. As anyone who suffers from this chronic pain knows, that's just not possible. I would be glad to hear about any new treatments, or hear any suggestions. Thank you for this page.

---Monica M. mmcclell@bellatlantic.net


Hi,

I've been reading everyone's stories and I can truly sympathize everyone. The world wont stop for us and we're the ones having to find a way to keep up with the rest of the world the best we can. Yesterday I had it so bad, I wrote on the journal couple weeks ago about my headache and taking Esgic. Right now I'm taking up to 20 of them daily to keep me going, to keep me up with the rest of the world. I have two young children and I work. For the last 4 days I've had it so bad, and yesterday without remembering I knocked out on my desk and the "big boss" had to practically bring me to the infirmary downstairs. It was kind of embarassing but thank goodness he knew my history. I am seeing my doctor today. I'm sure it wont be much of a help but I was wondering what you thought of this plan.. I've seen that some of you went to detox center? Should I suggest going to detox center get these medications off my system then strictly eat very limited choices of food? Will that help? I know each individual reacts differently but the doctors are no help and I seem like to have to tell them what I would like to do and I was wondering if thats something I should try doing. I cannot continue increasing my dosage its not helping my life.

Thank god for a blesssed husband, but I feel badly for him doing all the work, as soon as I get home from work I go straight to bed until morning.

---Tiffany Granfors granfors@erols.com


BACK     INDEX     NEXT