Journal of Migraine Sufferers

Dear Ronda,

I have been reading your pages, including the case histories. It has been most useful to see other people's experiences, and know that one is not alone. I am a 35 year old schoolmaster. About six years ago I had a few days of intense pain on one side of my head, which I assumed was dental in nature. I ended up having my wisdom teeth removed, but the pain did not immediately go, lasting about six weeks in all. When it returned, the same time (Spring) the following year, I went to my GP, and then a specialist who said that it was cluster headache. By then of course it had disappeared, only to recur the following year. I have been in this bout for two-and-a-half years, and my mood varies from the resigned to the desperate. The attacks, two a day mostly, but up to four, have the symptoms one normally hears of: red, watery eye (with pupil changes), runny nose, pain up the artery beside the eye, and the lancing pain in the eye. I have managed to keep working through the worst of it, with sympathetic colleagues and boss. I have been hospitalised, MRI and PET scanned. I am on Verapamil, which has made the attacks slightly less severe in the main. I take Imigran injections to abort an episode, which works pretty well (ten minutes at most). There seems to be no end to this bout, however. In February this year, I went to sleep after an injection, and woke to find my eye still bloodshot, and the vision severely impaired (couldn't focus sufficiently well to pick up a cup). This, it was determined was a CSR (Central Serous Retinopathy - burst blood vessel in back of eye). It is supposed, I am told, to get better of its own accord, and has improved mildly. The eye specialist said that it was unrelated to the Cluster, something about which I am extremely dubious given the fact that clusters are obviously linked to blood pressure changes. (Part of his reasoning was that he had never heard of such a link - has anyone else had a similar experience??) One other thing, I notice most of the info on the net is North American - does anybody have any good UK links?

---Simon Bower 113022.545@compuserve.com


Hi

I am a 34 year old male, and have suffered the following since my early teens.

First stage - Visual problem not so much of an an aura but the inability to focus properly on a complete word of text or features of a persons face. At this stage I have no great problems with speech.

Next stage - Numbness of hand and speech starts to be a problem. Speech becomes slurred, as if I was drunk. I feel that within myself I am OK but I have a great problem conveying my thoughts to others.

Later stages are Headache (but not that severe) NO Nausea.

Personally I think my Migraine is Stress related, however there was a long period between my late teens and early thirty's when the only attacks I had seemed to be linked to recieving a blow to the head whilst playing rugby.. These attacks normally occured some time after the initial blow. However recently the attacks have become more frequent with no obvious trigger other than Stress due to work.

I should also add that the initial attacks in my teens coincided with studying for exams. I was admitted to hospital at this time for some tests. No conclusive information was given other than in their opinion no medication would be suitable.

I am concerned as the attacks have become more frequent is there some form of relaxation methods which could help. I vaguely recal a documentary on the television indicating some form of procedure which could help once the visual stage had started and prevent the attack continuing.

It can be quite embarrasing having an attack whilst out in work or even out shopping as due to the slurred speech and inability to communicate people assume that I am drunk.

My mother also suffers with Migraine but with different symptoms, Aura and Blinding headache she is in her late fifty's. No other members of my immediate family suffer.

Regards

---Richard Herdman 106527.736@compuserve.com


Thanks for the website! I suffered from horrible headaches daily for 28 years. These blossomed into full-blown Migraines 2 or 3 times monthly, requiring trips to the ER of the local hospital. I saw specialists, went to university teaching hospitals, migraine headache clinics in three states, and had every test imaginable performed on me. The only result was more and more pain medication, most of which had no effect on the pain.

When I went on a liquid protein diet (to lose weight) my headaches suddenly disappeared. For 3 months, while on the diet, I had not one little head pain. While still on this diet, I began a methodical testing of Migraine "trigger foods" to see what might prompt a migraine. The only thing that caused a rapid and painful response was Monosodium Glutamate (MSG). For 5 years now I have been migraine-free, as has my 27-year-old daughter, as long as MSG is kept out of dietary intake.

Problem is: MSG is HIDDEN under dozens of other names in ingredient labels: hydrolyzed protein, autolyzed yeast, carrageenan, "Natural Flavors", etc., etc. After four years of research, I have constructed a website to help the public determine if MSG is also their "migraine trigger".

The URL is: http://magicnet.net/~btnature.

There are no products sold at this site -- it is only for information to help fellow migraine sufferers. I hope you will visit this site and include this as a possible link for readers. THANKS!

---H. M. Borzelleca btnature@magicnet.net


Well, this will be my second entry.

I'm siting at my desk at work and my head is pounding. I'd have to say that this one has been caused by stress. My friend and I have been fighting through e mail all day long because I broke up with a close friend of hers. I thanked her kindly for giving me a headache. I can't work well, and my mind is boggled. I have to think really hard, which hurts to remember how to do what it is I'm suppose to be doing. There are 5 people in my office all talking at once to each other, and as many of you know, that is making it work. I've got less than an hour to go, and yet I don't know if I can make it. I may end up running to the bathroom before 5:00 hits. Does anyone have a gun? Maybe if I shoot myself in the foot, the pain will overcome my migraine. The aroma of popcorn is enough to make it 10 times worse. Why am I cursed with these damn things?????

---nmoeller@telegroup.com


Hi Ronda & fellow sufferers,

Thank you for this site! I am 36 and have had migraines (4-6 times a year) for the past 11 years. I get 12 hour intense episodes (usually wake up with one) where the nausea & vomiting makes me feel like I'm going to die. For me the the nausea is the worst part and I can't digest anything for 7-8 hours

Question 1. Why do they start later in life? I'm wondering if my diet has changed dramatically over the years.

Question 2. I've already realized that beer, wine & some cheeses trigger migraines & have cut them out for the last 3 years. That helps, but could my 3-cup a day coffee habit be contributing? (Please say no!)

Question 3. Would I be a good candidate for Imitrex? Will I be able to take it in pill form if I'm naseaous?

Any thoughts would be more than welcome!

many thanks again for the site!

---Andrew afstudio@best.com


I am writing on behalf of my sister. My sister has suffered from headaches all her life. It seems they have gotten worse as the years pass. Currently she's had a headache (or cluster) for the past two weeks, she has gone to every hospital, doctor, and gooroo in Wyoming. She has tried acupuncture, oxygen treatment, cocaine treatment, massage therapy and all the pills in the world. Her doctor knows of a specialist clinic/hospital in the Chicago area. The doctors in Wyoming do not seem to know alot about the issue at hand, we are searching every avenue. And desperately need help. She, my mother and I would prefer to have her close to a family member..would you know of a good resource in Phoenix or San Francisco or the related areas? We are trying to find a place by Sunday, September 7th. Thank you in advanced for your help.

---Heather Allen HAllen@mediamap.com


Reading the other case histories is like reading my own life story.My headaches are classic left-siders without aura and began at about age 14 and have continued to today. I'm 42. I have gone through periods where the frequency was just occasional to almost daily.

Since my 2 pregnancies, they seem to be more tied to my menstrual cycles where before they were more tied to stress and other factors. I was taking preventatives the first few weeks of both pregnancies and the quick withdrawal was pure misery. I quit both times the minute I found out I was pregnant.

During my 1st pregnancy, the headaches went away about the 4th month. It was like a miracle. During my 2nd pregnancy the headaches increased the entire time. It was unbelievable misery. I couldn't use DHE because of its blood vessel action, but I could use other painkillers.

I went to a neurologist about the 6th week of my 2nd pregnancy to see if there was anything he could do. It was one of those new appts. with an untried doctor. He told me that I had already damaged my fetus and it was too late. He treated me like dog s--t. I left in tears and shame and went across the building to my OB-GYN and told him what happened. I believe the anger of my OB contributed to this doctor being asked to leave the medical center. It wasn't the first time his woman-hating had shined through.

My OB was my lifeline and he allowed me to have Ty#3 and he gave me a paper saying that if I ended up in ER they could give me Demerol and Phenergen. I had to do this 2 times. The first ER doc was nice and it was so noticable how sick I was he didn't question it. The 2nd ER doctor was "one of those." He treated me like a drug-addict willing to harm her fetus for her fix. He made me wait hours in a brightly lit ER room laying on a cold, very small table while he called my OB. He also lectured me while vomiting.

I am happy to report that both of my boys are absolutely perfect. They are old enough now that I know they are smarter than the average bears and have no learning disabilities or any other problems. I was very careful to use the meds only when I had to. I'm telling all this in length to those who worry about pregnancy and migraines. It's hell, but you can have some meds and get through it.

I've tried every preventative without very good results. Amitryptaline was wonderful the first time I tried it, but not the 2nd or 3rd. The side effects are too tremendous weight gain, all-day sleepiness. I kept having to increase my dosage to get results to taking 125 mg a day. So I eventually was having trouble urinating or moving my arms.The blockers, prozac, sansert, etc. have no effect on my headaches, just lots of unpleasant side effects.

I don't understand why doctors will give you all the preventatives, no matter what the dangerous side effects, but none of the painkillers. I read a doctor on the NHF site from St.Johns Hospital who wrote that it was OK to give painkillers to those who have occasional headaches, but not to those who have them all the time. ?!?!?! I wish I could e-mail him my all-the-time headaches because he obviously has no idea how important quality of life is. How important to have as many good days as we can to raise our families and go to our jobs.

My current "soapbox" is that we have somehow gotten mixed into the drug war. I am not a housewife who needs her valium, I am a woman in frequent chronic pain.

Yes, any doctors reading, I know all about rebound. Last year I tried to go codeine and excedrin free for several months. I often had trouble limiting my DHE to 3 days a week. I walked around with that "brick" in my head all the time. I followed the diet to the letter. It was misery, and I finally just couldn't take it anymore.

I get annoyed when non-migraineurs tell me they've had a bad headache and know how I feel. The research is now showing that migraines are a whole different phenomenon than headaches. The pain is horrific. I have screamed and vomited in ERs while being lectured by an ignorant doctor about pain medicine.I am so tired of the treatment by the medical profession. I am lucky to have a very understanding doctor at the present time, but I have been to so many jerks.

I have tried biofeedback at $90/hour without any result. I have tried acupuncture for 16 treatments, which was pure torture. I went to a homeopathic doctor who gave me so many bottles of stuff I was swallowing all day. None of these things helped at all.

I've had friends give such sage advice as to masturbate regularly. One told me that she had a friend who went to ONE hypnotherapy session and has never had another migraine. Goody for her. Most of these pearls of wisdom make it seem like we are responsible for our headaches we are either doing something or not doing something to cause them. (I spent the next month masturbating in a hypnotic trance but still had migraines - ha ha ha ha ha)

Yes I believe in management like a diabetic must manage. I never drink alcohol or eat chocolate because these are big triggers. I regularly go to a massage therapist, a chiropractor, take herbs and follow the diet. I do video workouts regularly (on my good days) and take walks. I do everything the book says to manage my chronic condition but I must have medicine, too. Because while I can control the frequency to some extent, I can't 'cure' myself completely.

Of these treatments, I feel the chiropractor is essential. He has helped me not feel like my neck is screwed on too tight. I also seem to be getting some results from the combination of herbs I'm currently taking, although it's too soon to really tell. I take feverfew, of course, but I think I'm getting the results from St. John's Wort and Evening Primrose Oil. My PMS doesn't feel as bad this month ergo less frequent headaches. I'll post again on this later to see if I'm still getting results.

DHE and codeine are the only two meds that I can get results from. I have a real love/hate relationship with DHE. I have all the listed side effects including a temporary worsening of the headache and the nausea. I know I'll spend a lot of time sitting at the commode after my injection. I keep a comfortable chair in the bathroom just for this. I'm frequently moaning & screaming The injection itself is very painful in the after-burn.

I'll be honest, I'll take anything offered at the time of a headache. Well, short of heroin I guess. When my father died of cancer I was the one who cleaned out his hospice meds. There was morphine and those duralgesic patches. I read a post asking about those before. I got no migraine relief from either of these. They just knocked me out and made me feel terrible but gave no migraine relief. I threw the rest down the toilet. I am not interested in these drugs for fun like the doctors seem to think. I am only interested in one thing -- will it get rid of my headache.

I am most allergic to nubain. I didn't know this until I had surgery and the doctor put this in my pump. I had the most horrible headache when I woke up from surgery and nothing is quite like not being able to quit vomiting with a brand new surgical scar. Every time I would use the pump my headache would increase tenfold. I had told the doctor I was a migraineur long before the surgery and he knew that nubain could cause headaches in some people. I quit pumping that device until the doctor gave the OK to get the nubain out of there. That took him about 6 hours to decide. God, what a doctor will put you through to keep from giving you morphine for a couple of days.

I ended up in an ER a few months later and I told the doctor there that I was allergic to nubain. He said he had never heard of this and refused to give me anything else. I let him give me the nubain. Big mistake. Never again.

Imitrex wasn't a success in my case, but I'm looking forward to the new meds coming out this year. It is really exciting that research is being done. Since DHE can cost about $10-20 a headache depending on how many injections it takes, I guess they have realized there is money to be made. I don't care if their motives are capitalistic, I'm just happy they've found a motive at all to help us. My insurance company won't cover DHE. What fools. I need to find a new insurance company.

I almost forgot...I picked up this Migraine phamplet at my chiropractor's office the other day. I quote,

"The history of migraine proves that it is only a matter of time until the chronic, recurring migraine attacks lead to serious emotional instability or outright mental breakdown."

I swear, I started laughing out loud. I've had these damn things 28 years and haven't broke down yet. Unless you consider wanting to amputate your own head a breakdown!!

My mother died of a defective blood vessel in the back of her head. She had known about it for 15 yrs. but it was inoperable because of the location. My father died of a 7-month cancer on a Saturday in February 1993 and my mother's head blew 5 days later right in front of me. She was dead within 3 hours. She didn't have migraine, in fact I can find no one in my family who has had it before me. But I feel this is the way I'll go. One day, my head is just gonna blow. She took no meds, exercised, ate right, did everything right and she died at 61. But she had great quality of life and this is what is important.

If the meds are causing damage I'm really sorry docs. But quantity of life is nothing without quality of life. If I have the choice to live only another year pain-free or ten more years with 3-4x a week migraine, then give me the year. I love my sons dearly. I love my husband dearly. But I am no good to anyone vomiting and screaming with a washrag attached to my left eyeball.

This is a tremendous site and thanks to you, Ronda.

---vandyvil@camalott.com


BACK     INDEX     NEXT