Journal of Migraine Sufferers

Hi Ronda and fellow migraineurs (I didn't know there were so many of us!!).

I began having headaches 16 years ago after head trauma from a car accident. For 10 years they were manageable with occasional fiorinal, and I was able to work and function well most of the time. Then 6 years ago I had a hysterectomy (ovaries removed also) for endometriosis. Then my headaches became severe and much more frequent, and I began having migraine-types about 1-2 times a month. I have tried every preventative and almost every abortive medication out there. I've tried spinal blocks, occipital blocks, TENS unit, moist heat (helps some), cold packs,etc., and even had spinal fusion and discectomy C5-6 for ruptured disk. I have also spent 1 week in an in-patient pain treatment/counseling program, where I was taken off all meds to prove that I was not addicted to them, and was taught ways to deal with pain and stress in other ways. I had continuing counseling and was taught biofeedback following discharge. This was a year ago, and my headaches are still getting worse and more frequent.

Also, I have never found an MD that is willing to prescribe enough pain meds and am frequently treated like a "drug seeker" at the ER when I go once every month or two for a shot of demerol (this is the only thing that works for a severe migraine for me). The meds I am currently on are Inderal, Elavil at night (helps me sleep), Fiorinal for mild-mod headaches, and Stadol nasal spray for severe headaches/migraines. My MD routinely tries taking me off all meds because he thinks I'm getting rebound headaches. I know this is not why I have headaches, as I take myself off meds at times and there is no change in the headaches. I'm sick of being treated like a "drugie" by MDs and family and friends. I am doing the best I can with a painful problem and am trying not to let it take over my life, but it is hard, as many of you know.

I live in Upland, CA (near Pomona and San Bernardino) and would love to hear from someone around here and find a better MD or better meds, if there are any. Also, I haven't been able to work for three years and am just now applying for SSdisability. I have a hard time just taking care of my 5 yr old daughter, husband and household. I'm beginning to feel desperate, I don't know how much longer I can take the pain, isolation, feelings of inadequacy. I hope there is a soon coming cure for headaches/migraines. Good luck to all of you, and thanks for all your help so far (the journals are very supportive to me!)

P.S. Imitrex gives me severe chest pain, and midrin doesn't help much.

Feel free to e-mail me (Pam) at tpgraham@earthlink.net


Dear Ronda

I have been reading your case histories and find them interesting & helpful(Its good to know that there are others in pain and I'm not alone). There is a clear theme in these histories: DOCTORS DON'T KNOW HOW TO TREAT HEADACHE PAIN. There seems to be no studies done on the use of analgeisic drugs for pain relief from headaches. (only terminal people can have pain relief because the are going to die anyway.) I am a 32 year old South African male. I have suffered daily headaches for the last six years. I normally have about 20 headaches a day which come in waves of 15 to 20 minutes. Then I also get killer headache about once every 2 weeks which lasts for hours and is totally blinding. I don't have the classical signs of cluster headaches because the pain is more on the right side of my face & eyes. I also have neck ache and sometimes my whole spine is sore. I also have myofacial pain.

I have had just about every procedure to find and fix the cause. I have had nerve blocks on my neck, a bite plate, natural medicine and I have been to a pain clinic to "manage my pain." (Pain is managed and not cured supposedly. Narcotics will destroy you and pain is caused by the painkillers!!). Ha Ha! funny joke! Go home and throw away the pills - You are just a drug addict! You a very depressed person, and you just have a low pain threshold(from taking all those pills). You are a weak person. (I'd like to see them have a headache for one day!!!). I have been off painkillers for months to prove they don't cause the headaches, yet I am still in pain. I am on amitrypteline which helps a bit, as well as an anti-histamine and Nsiads (which don't help).Cafergot helps at times. I have tried about every drug on the market including Imigain. I also take about 6 pain pills a day (If I have more than 6 I get rebound headaches.) The only drug that really destroys my pain is pethidine.

Doctors are very against the use of narcotics because of addiction. I don't believe that anyone who has genuine pain will get addicted - although they may cause rebound. Even if they is physical dependance, a level headed person will be able to come off it. This fact has been proved with other pain patients. Anyone who knows anything about the safe use of narcotics - Please send E-mail to abrahams@ilink.nis.za It took time to allow terminal patients as well as post operative patients to have adequite pain relief. How long will it take to help a person with migraine????? I can sympathise with people who wish to commit suicide because of headaches, as it seems to be the only way out of pain. Please don't commit suicide - it may get rid of your suffering but will leave your loved ones with perhaps a greater suffering! If you kill someone else it is murder & to kill yourself is just as bad so hang in and trust in the A-lmighty.

Regards from Rabbi Hillel Abrahams. abrahams@ilink.nis.za


I'm 46 and have had severe migraines since I was 20. They have increased in intensity and frequency over the years. I now wake up with a moderate migraine every day and develop a profound one once every two weeks. I take 2 to 3 50 mg tramadol plus 3 to 6 mg Lexotan (anti-anxiety) every day. Once in two weeks, I need 1 Imigran (Imetrix).

The daily medication helps curb the pain so that I can function normally. I took Imigram daily for one month and was happily, completely pain free but I had to stop due to the cost (here in Singapore, it's $25.00 a tablet.

Do you know if Tramadol causes a medication induced migraine? I know Lexotan does not.

All this medication makes me feel like a junkie. I've kept the fact that I have daily migraines a secret from everyone including my surgeon husband.

I'd be greatful for advice from anyone.

Thanks for listening!

---Beth Anne John, PhD Speech Pathology abjohn@ttsh.gov.sg


I love the net. Your service is valuable. Thanks.

I've had classic migraines off and on for at least 16 years. I'm currently 37. I would have a clear, visual aura followed by the migraine. Luckily I discovered Imitrex three years ago. The shot always worked, but I only had a migraine every few months. I recently switched to the pill form, which takes longer but I don't feel like I'm going to be strangled to death. And, I really hated doing the shot. It scared me to death. During pregnancy, I had no migraines - lucky for me. This year, I had two or three classic migraines until last month, and since then, I've been hit six times in the middle of the night (which never happened before) with terrible headaches which I think are common migraines....but do you go back and forth? I mean, maybe I have an aura, but I sleep through it. My scalp feels tingly for the days these are going on and Imitrex doesn't help a whole lot. They last for days, and my sinuses are killing me and I'm having hot flashes at the same time. The first time it happened, I thought, o.k. this is different. But, now two times and I'm getting concerned. And, I know there are many other people with worse cases, so I feel guilty complaining....Anyone have experience with both types of migraines? Is it usually an either/or situation?

Also, a tip about the Imitrex for Cathy Johnston. She was saying Imitrex made her aura last longer. I had an Imitrex sales rep (I used to work at a hospital) tell me to wait until the aura starts to fade and then take the Imitrex because it is known to prolong the aura, especially visual ones. Maybe try it once and see if it all comes out o.k.

A tip for people who work for/with unsympathetic people. Print out some of Ronda's case studies and show these people the physician's interview. This is the 90's. Not the Salem witch hunt days.

Best wishes to all, and especially thanks to those giving diet tips. I think there's more to that than I suspect and I will begin to watch it. Although, a strong cup of Tasters Choice Hazelnut REALLY has helped me when I have a migraine. It's probably just a stupid ritual placebo effect kind of thing, but hey, it works!

---Susan Fisk SVFISK@FACSTAFF.WISC.EDU


Dear Ronda My name is Cathy Johnston. I have 48 years old and live in California. I have suffered from migraine headaches since the early l970s when I was going thru a divorce. However, they weren't diagnosed as migraines until 10 years later. There is no history of migraine in my family, so I thought I just had really bad headaches. I tried several "home" cures - wine, pot, cigarettes - to no avail. Now I don't drink, do drugs (illegals) or smoke. I also cut my caffeine intake for years in addition to other food "triggers". No good.

I have taken antidepressants, calcium blockers, ergotamines and other preventative type medication. I have also tried several pain medications. I now use Imitrex (pill form, the shots gave me the heebie jeebies), fiornal with codeine (so I can still go to work). With really severe migraines, I take either synalgos with phenegran, or stadol with phenegran. I'm also out for a good l0 hours. When those don't work, I see my doctor for demerol with phenegran. The last time, I got 200 mg of demerol. Of course, I'm out of work for one day on the drug, one day with a rebound headache, and one day of being a zombie with a drug hangover.

I also worry about the addictive qualities of these drugs and see I am not the only one that has that concern. My pain has led me to bang my head against a wall and, sometimes, to wonder just how much more I can take. I wonder what the suicide situation is on migraine sufferors. I also have a history of manic depression, which is kind of scary given my access to these narcotics. My migraines usually come once a month, but last for approximately a week.

There is no rhyme or reason for my migraines. I've tried keeping a journal of headaches - at the start of my menstrual cycle, at the end of my menstrual cycle, during ovulation, not during ovulation, if I'm excited, if I'm upset. I've yet to enjoy a vacation or holiday without at least one excruciating migraine.

My husband is pretty understanding and is always there with a back, neck and head rub during my migraines. I have told him (because I am not nice when I am in pain) that I wish, just once, he would get one. He never even gets regular headaches and I never get a regular headache.

How many of you have been asked, after your return to work, you were off all that time for "just a headache?" Is migraine a good defense for co-worker murder? Fortunately, most of my co-workers are very understanding and supporting. Also, I am fortunate to have worked for the Federal Government for the past 29 years and the benefits are great - not only time off, but health insurance.

I am at the point where I don't feel there is anything out there that will prevent me from getting headaches, so I want the quickest, most effective pain killer, with the least side effects. By the way, Imitrex works about 60% of the time for me, which is great. However, sometimes, it just prolongs the time from the original aura til I actually get the headache. Headaches are also brought on by heat, exercise and hunger. I have been tested to see if I'm hypoglycemic.

I would appreciate any comments/suggestions from all. Thanks again. This alone was worth my investing in the Internet.

---Cathy Johnston jjohns@spitfire.ccnet.net


After years of migraine headaches, recently my allergist has prescribed for me a medication called, "Midrin." I know that it is a combination of isomethepthene/dicloralphenazone/apap ... I have used it three times now and the first two times worked. The last time didn't work as well and I was wondering if you have heard of any one else using it that might have had the same experience? Additionally, it seems to give me "the munchies." I asked my pharmacist about this side effect and he was unable to answer my question.

This has been frustrating because usually all I have to do is pick up my prescription drug guide or hop on the net to get answers. Either this is a new drug or an old drug or simply a rarely prescribed drug, because I have been unable to access the information I need. Thanks for your help.

Sincerely,

---Cezanne Bomba JB1393@aol.com


I live in Kansas City, MO. I have been having headaches since Dec. of 1995. I have been treated with Imitrex, toradol, Esgic, Naproxen, duragseic and some others and a TENS unit.

Yesterday I took so many esgic I ended up in the ER. The doctor there became very upset with me, to the point of yelling, which helped my head just terrificly. He gave me three or four other meds, I don't know what because I am dazed and he was getting more upset the more I questioned the drugs. This is paradoxical because what originally upset him was my inability to remember all the drugs that had been tried on me.

I feel hopeless. Hopeless because I don't know of a cure and because I am on the verge of loosing a dream job.

My pain is almost continous. I no longer have a life. I think I lost another friend because I had promised to photograph a friends daughter's wedding tomorrow. I can't function so I can't do that.

I am sorry if this is hard to read but the drugs I got yesterday are burning a "hole" in my throat and clouding my world. I am just writing this to get it off my chest anyway.

---Rex rext@micorlink.net


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