Journal of Migraine Sufferers

I have been experiencing migraines for the past few months...It starts and wont go away...I have to lay down in a dark room with a wet cloth over my face...I do not know if it really helps, but i am drawn to do it.....Nothing has helped...I am on mediation for hypertension and blood thinnners and i am leary about taking all kinds of medications...DRs...seem to treat me like its in my head because i am a woman....This angers me because that is not how i am.....This is new to me and I am having a hard time dealing with it....At present i go about my life with it and hope it will go away...I am happy to have found this page site and know I am not alone. Thank You for being here.

--LAS VEGAS KITTY KITLV@webtv.net


Hi Ronda. This is a GREAT page. I'm so happy to know that I am not alone in my migraine suffering.

I am a 46 year old female. I have suffered bad headaches since I was 18 and a freshman in college. At the time, my family doctor diagnosed my headaches as tension headaches. He tried several medications but nothing worked until I got Fiorinal #3. It really worked. There were some days I had to come home from class, take the Fiorinal and go to sleep they were so bad. I'm sure now that the worst headaches were migraines. After about 8-10 years, I had to find a new doctor since I had moved. He would not let me have any more Fiorinal. He tried other mild medications but nothing worked. Fortunately I had very very few really bad headaches. He then put me on Inderal and it helped my headaches a lot. In 1986, my headaches got a lot worse and a lot more frequent. (I still had not been officially diagnosed with migraines, just "tension" headaches) I had a headache so severe that I couldn't stop vomiting, light and sound hurt, etc. My husband took me to the emergency room and after waiting 2 hours, I got a shot and some percocet to take home. The doctor there said I had some kind of virus!! The pain came back so I had to keep taking the percocet. Finally the pain went away but I kept getting severe headaches. I had some kind of headache every day. I was diagnosed later with severe sinus problems. Over the course of the next three years, I had 3 sinus surgeries. I still had headaches. I was in the ER several times a month for shots of demerol and phenergan. They made my headache and vomiting worse. Finally I went to a neurologist. He tried me on several medications to prevent the headaches but they didn't work. Finally he put me on Depakote 2x a day. I also take Cardizem CD and Inderal. The combination of those medications has drastically reduced the number of severe migraines. I take Fioricet if I get a headache, which I do about 3 or 4 times a week but the Fioricet helps. I haven't had a headache severe enough for a shot in a year now!! I do spend a lot on medications but it is worth it. I have also had some weight gain. At least I'm not missing work (I'm a teacher) like I did before. I rememember one time when my daughter was about 4 and I had a migraine. I had to come home from school early and get a shot. She was still at day care. She had had an accident and needed stitches. I was too sick with my migraine to come and get her and take her to the doctor so the director of the daycare center had to take her. I felt awful. I felt like a failure as a mother. I also remember when I was having such bad headaches and I called my family doctor so he could order a shot at the ER. He said I was becoming "addicted" to the shots!!!! HA! He said I would have to ride out the headache! Obviously he had never had a migraine! When I told my neurologist about it at my next visit, he said it was not a good idea to be in such pain for so long and that I should have been given something. He said no one should be allowed to suffer like that!! That neurologist who I go to now is wonderful. He is so caring and concerned. I feel I can be honest with him and he is there to help me. I visit him every six months for checkups and blood work to see if my medications are doing anything to my liver and/or kidneys. So far so good. My husband, for the most part is supportive. He gets upset when I get severe migraines, but I think it is because he feels so helpless. NOBODY CAN UNDERSTAND MIGRAINES UNLESS THEY'VE HAD ONE!!!!!

I have found that there are a lot of foods that trigger my headaches. I can't eat citrus foods, MSG, hot dogs, lunch meat, cheese (very limited), I can have a TINY bit of chocolate. I went through an early change, but I still get headaches. I take hormones and at a certain time, I am more likely to get a headache. I am bothered by drop in the barometric pressure and strong wind. I also have to be careful not to change to a high altitude too quickly.

Some of you have said that Imitrex really helped you. It didn't do a thing for me. DHE didn't help and neither did Cafergot or Ergotamine that you put under your tongue. When I get a severe headache I have to get a shot of Toradol and Compazine. It takes a long time for it to work but if I can get to sleep right away, it gets better faster. At least I don't throw up all night with that.

I still wish my headaches would completely go away, but as my neurologist says, they won't. We just have to control them. At least my quality of life is 100% better than it was 5 years ago. I feel fortunate to have such a caring doctor. I feel for those of you who have had horrible experiences. I felt so angry with doctors just reading your letters. Hang in there.

Sincerely,

---Ginny rcald@ruraltel.net


Dear Migraineurs,

I went through a sixteen (16) week test program evaluating Neurontin (an anti-epileptic drug) as a migraine preventer. Initial results were encouraging, however, I have been on Neurontin for two (2) months (1800 mg/day) now and there is no improvement. The drug has really slowed me down and made me feel un-coordinated which I understand is common for a drug of this type.

I went to see my Neuro this past Wednesday and he has switched me to 80 mg/day of Inderal. Anyone had success with Inderal?

My advice is not to take Neurontin unless it is the only drug one hasn't tried.

I thought everyone would like to know. Exchanging experiences is an asset of Ronda's bulletin board.

Good luck everone.

---dbird-phoenix@worldnet.att.net


Hi,I am a 38 year old male, and have been getting migranes since 16 years of age. I have not takin any meds other than Excedrin. I usualy get a strange feeling i cant really describe somthing visual i think,and then i take a couple of excedrin because i know a migrane is on the way. Somtimes i have to fight this for several days with excedrin before the migrane feeling goes away.

Anyway, i was wondering if there is anyone out there that can tell me about there aura feelings they get and if they can describe them to me. I get some real strange feelings and i just want to know if there is anyone else that gets the same thing as i do.

Best Regards,

---Brian Harleyman@ameritech.net


I am writing this for my wife. After reading through the majority of the letters it has been a real eye-opener of what she must be going through. I find myself becoming annoyed from her headaches it is almost always the center of our life. Boy I have been an idiot! I don't think that she suffers as much as most of you but any suffering on this level has to be horrible.

She is 35 years old and has had the headaches for about five years now. She has a medical condition that made it dangerous to have children and so we have not had any. This along with other family problems has added to her frequency of the migraines.

We have been to neuroligists, Sleep therapists, GP's, etc. She has tried Amitriptaline, Imitrex, Paxil, Midrin and others. She is so tired of having this be her daily routine of what will I do today that is going to give me a headache. The only thing that we thought we could relate the headaches to was her period. This has changed lately. She is on the "pill" she was on the Ortho Novum and our doctor suggested that maybe it was directly related to estrogen levels and that maybe she was getting too much estrogen and has put her on a new pill called Alesse -28 (A lesser dose of estrogen). This has not seemed to help yet.

The only thing that made her feel better was the Paxil. But the side effect of the Paxil like if she missed her pill then she was dizzy and nasueous for the rest of the day. She got so tired of feeeling dependent on the drug that she quit taking Paxil (which took months of slow weening off from) and now the headaches have reared their ugly heads to the point of almost daily suffering from a "sore head" and at least once a week of the aura followed by a migraine.

She is currently using a combination of Ibuprofen and Midrin and has found some relief but not ever curing her of the constant pain in her head. She is thinking about going back on to the Paxil to see if she can resolve some of the things that are causing her depression but is fearful of the drug itself.

I guess I am writing this for a combination of reasons: 1) to try to re-live her history so that I can be more helpful in finding relief ( I choose not to use the word cure) for her as she is still young and active and she sees her life slipping away due to the constant need for treatment of her headaches. And 2) to find if there is any one out there that is closely related to the things that she feels and/or symtoms she has and to find out what has helped for them.

Please help. Feel free to write us at CraigB@home.com We are looking forward to your comments/suggestions. Thanks for this opportunity Ronda!


Ronda,

My name is Tracy. I am 24 years old and have suffered from migraines since I was 11 years old. The word "hell" does not even describe the pain and emotional roller coaster I go on when I get a migraine. I have full blown migraines. The aura, numbness down one side of my body, extreme pain, disoriented, and nausea. You wonder what did I ever do to deserve such pain. Why can't I just be normal? After 4 days of extreme pain it definately wears on your nerves and emotions. How do you cope with something like this? I have a successful career and just bought a house and am extremely happy. However, when my migraines hit, so do my emotions. Hit rock bottom.

I have a lot of allergies to food and inhalants. Controlling my diet is frustrating but manageable. However, the feeling of being out of control is not.

I am presently on Elavil. A prescription drug commonly used as an anti-depressant when in higher dosages. It works great for pain management. However, I live in a city with many chinooks. The weather fluctuats rapidly. Going from -30 to +15 overnight. The barometric pressure changes very quickly. Causing extreme migraine pain. Lasting until the environment stabilizes. I know if I moved to another climate I would be able to control it more. I have built my life here and do not want to give up all that I have.

It is so nice to know there are others out there that understand. Reading some of the stories lifts the burden that I have carried for 13 years. Any advise you may have would be great. You can email me at theshka@hotmail.com.

Thanks for just listening. ---Tracy


Dear Ronda,

I am now 19 years old and have been suffering from migraine headaches since I was 14 years old. I have been to several doctors, including a neurologist. I would like to go back to the neurologist, but we can not afford it. He had me on antidepressants, Depakote, and other drugs but nothing seemed to help. In fact he couldn't tell me exactly what kind of headaches I had, so I assume they are migraines since I have most of the symptoms.

My headaches never got severe until early 1995 and gradually increased in pain to the point of missing school and work for days at a time. Thank the Lord there are people who seemingly understand enough to put up with me. In April (97) I had a baby and every month since then I have had to go to the ER. All they can do is give me a shot, usually Demoral, but once they gave me Morphine. The shots do not even take away the headache, just make me sleep for maybe four hours (they also torture me by leaving the lights on even when no one else is in there...they must really care).

I would love to go to another ER but I know I couldn't make the drive because most of the latest headaches hit me quick. First it is the pounding, then the nausea, vomiting, then the more serious pounding, and finally the passing out.

Let me go back to my pregnancy. The reason I had my baby when I did was because of a headache. On a Wednesday I developed a headache, but it was still there on Friday. They addmitted me in the hospital because I hadn't been able to eat in three days and the doctor gripped me out for not calling earlier! The reason I didn't call him was because the last time I had a headache he said 'oh well, take Tylenol' or he gave me Hydrocodone, which does nothing at all. The had to enduce and finally went to a c-section.

I just do not know what to do. I can not afford to run to the doctor every time I have a headache or see a specialist. There is more to my story, but this is just an outline. Thanks for reading and listening. ---Carrie T. (Aingelle@aol.com)

P.S. The latest medicines that I have tried are Imitrex and Wigraine...neither have even phased me. Nor has Midrin.


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