Journal of Migraine Sufferers

Just found this it! I just read the case history from "Roger in the UK", and I have to say that I might as well have written that message myself!! The symptoms are IDENTICAL to mine! Although I feel my case is extremely mild compared to most, I am glad that there is a spot where my feelings of sitting in a dark, quiet room until the pain goes away can be understood.

I am a 23 year old college student and have been suffering from occasional migraines since I was 9 years old. Like someone else said in their case history, I too remember trying to explain to my parents how I had lost part of my vision that day while sitting in my 4th grade class! I said to them, "Have you ever sprinkled water onto a TV screen? Well, everything looked like I was looking through a wet TV screen, lots of glimmers and colors, but no clear picture". I think they thought I was making it up for attention...

It wasn't until my teen years that they started taking me seriously. My parents divorced during this time and needless to say it was very, very stressful for me. I started getting migraines more often. After a trip to my doctor's office, my parents and I were told that these headaches and "vision problems" were the result of our nemissis, the Migraine. After discovering some stress management tricks on my own, my migranes seemed to come less frequently.

As I got older though, I also began to notice that when I would have as little as one glass of wine, or one beer, I would get a terrible migraine the next morning! Especially, like Roger said, during stressful times (finals weeks, before deadlines, big meetings). I have now learned to avoid drinking any alchohol if I have had a long, tiring day! I know normally people relax with a drink after a long day, but in my case, that would only lead to a longer next day!! I have learned to drink smart: only after a full meal, when I'm relaxed, and never too much!

The funny thing is that it was only after I had been suffering from my migranes that my mother started suffering them as well (about 4 years ago). Hers are as few and far between as mine, but now she knows how I feel! Then, it was not until 3 years ago when I traveled to Guatemala to see my family for the first time in 8 years, that I learned that my grandmother, aunts, and cousin on my father's side also suffer from migraines!

Fortunatelly, now my migraines only come 4 or 5 times a year (which is 4 or 5 times too many..) and I have been able to cope with them by only taking an over-the-counter extra extra strength pain reliever and locking myself in a dark room! (Unfortunatelly, no one has come up with the idea of a "portable dark room" so I have found my self occasionally suffering some excruciating pain in broad day light ...)

Thanks for the opportunity to add my 2 cents!! All of you are in my thoughts...

---Elisa S.

Hi Ronda & all the fellow migraine suffers! My name is Angela. I have been plaqued with migraines as far back as I can remember, my father says they started when I was Three, pretty young huh? My first diagnosis was that I had epilepsy, NOT!!!! I currently take Stadol NS, Lorecet Plus and Imitrex for the pain. I take Calan daily to help prevent them. I have very bad periods of one after another then suddenly I'm free for a month maybe. I am going through a bad spell now and was so happy to find this page. I feel I can share my lonliness and fustration and actually be understood and not frowned upon. I don't want to go into a long spill about my history, but trust me I have tried everything.

I have finally found a doctor who is sympathetic and kind. He nevers questions the reality of the pain and makes sure I am given a shot of Stadol if I'm suffering. My problem now is what the headaches are doing to my relationship and my career. The past three weeks I have missed three and a half days of work and on the weekends(the past three) I have had to go to the emergency room for a shot of Demerol, which totally drains me. The last headache took a toll on my boyfriend he was just so fustrated he made it seem as if they were my fault and I should control them. Mind you I avoid everything that triggers, I read and educate myself as much as possible. But the ignorance of other people hurts. Sometimes the emergency room treats me fine but somtimes they accuse me of faking to receive narcotics, imagine that I'm laying there crying and puking and they think I'm faking. My answer to them was not pleasent so I won't repeat it, but it sure is hard to be nice and polite when your head feels like its going to blow up. My boyfriend says I get very out of control and irrational. No DUH!!! I tell him if you could just feel my pain once you would understand, but in reality he won't. So please somebody give me some feedback. How do you help someone to understand a pain they have never felt.

In conclusion I would like to tell you what I heard on the news tonight it said some doctors are treating migraine sufferers with a drug called Lidocane nosedrops(not sure if spelling is correct), can anyone tell me what kind of drug this is and has anyone tried it or know about it. There have been no studys so its a new concept. Thanks! My E-Mail address is

Hi. Kudos to you for starting this page. It's a shame that something like this has to bring people together.

I am 25 and remember me at age 9, describing to my parents a funny feeling I got, and then I got a bad headache. The neurologist said they were migraine.

In high school, I had a bad spell, daily pain and missed two weeks of school. During this time, I heard the infamous "You have a headache? Take some aspirin!" HA--you silly people! I'm about to gouge my eyes out, and you will give my aspirin? Thanks. But I digress.

Around this time I developed what I call my 'other headaches'--I don't know if they are cluster, tension or what. Just open my eyes in the morning and WHAM! I was living in constant pain (although it varied from day to day in intensity) for the next few years.

In college, my roommate couldn't understand how I dealt with the pain. I told her I did not have any choice. She saw me curled up in bed, lights off and doped up on tylenol with codeine (or fiorinal with codeine) and said she wished she could take it away. I said this was not something I would wish on ANYBODY. I slept sophomore year away.

During all of this time I have been for cat scans, MRI, ekg's and I don't remember what else. I have tried ergotomine, feverfew, no chocolate/caffeine, fiorinal, fioriset, vicodin, elavil, imitrex...

My aura hits, usually the same way. It's a freaky, deja vu thing. Everything slows down, and stops and all of a sudden I am in an alternate world, watching everything around me, but not quite affected by it. I listen, and feel I have experience this scene before. In eight grade, I was in class and struck and I said to myself what Laurie would say--and then she said it. I flipped out. That happens sometimes. One time, in summer camp, we were all sitting in a group and everything went yellow. It came in form the side, until I could not see, except for yellow. I stumbled off to the infirmary to sleep it off. I was shivering under two blankets--but it was 90 degrees outside. That was my only visual disturbance.

I get nausea (no vomiting) and that lovely pain. The aura freaks me out and then simultaneously comforts me (I guess cause I know what to expect).

Since college, I have been pretty good. Migraine, and otherwise. When it is overcast or raining, my head hurts. I can tell if it will rain, even if it is sunny. My migraines have slowed down in the past two years. Of course, I still had to leave work when one hit yesterday.

Migraines run on my Mom's side. Depression runs on my Dad's. I have been being treated for depression for I guess about the past three years. I am on prozac and lithium. My boyfriend is incredibly supportive (never offered me tylenol...) Birth control pills have not affected the headaches.

Thank you for allowing me to share. I know I am not alone ("What do you mean you missed two weeks of school casue you had a headache?!") I wish only peace and quiet for everyone.


I've been putting off writing this because the topic is a frightening and depressing one for me.

I've been experiencing migraines for 42 of my 48 years, though I did not have a clasic migraine until high school, when I lost some vision during a French class and had an arm go numb on me. The school nurse called my parents to say I was coming down with polio. I'm sure the woman meant well. That was my first misdiagnosis. I married at age 19 and my husband was in the Army, I followed him around. I began to refer to my migraines as "reactions". During one scary one he drove me to the Army E.R. My arm was numb by then. The doc stuck a pin in me and called me a liar when I told him I couldn't feel it. He also told me to,"Shut up" when I began to cry. At the next Army base we went to, in another state, they ran all kinds of tests on me, from x-rays of my head to EEG's. Their diagnosis was, "Nervous hysteria" and I was referred to an Army Psychiatrist who prescribed Thorazine (an anti-psychotic) and Valium. If I wasn't a nervous hysteric to begin with,I was fast becoming one! :-)

Of course, my migraines continued. After my husband's discharge,I was in line at the supermarket reading "Good Housekeeping". An article about migraines really excited me!! There it was! They described mine perfectly: the aura followed by numbness, usually in one arm and one side of my face, all followed by excruciating one-sided pain and vomiting from nausea.I took myself to a new doc with my self-diagnosis. She yelled at me for playing doctor with myself and then concurred with my diagnosis. We started with Cafergot as a treatment and, after a year of that, I realized it only made me worse, not better. Another town, another marrriage, a new doc. We did bandaid approaches now...codeine in the form of hydrocodone.

Then, disaster.In January of 1989, in excellent health, I had a right hemisphere stroke. Out of 20 physicians, one Neurologist theorized it was my migraine history that lead to the stroke. I will never know, but it's been 7 1/2 years now. Despite medical predictions,I can walk. My left arm remains paralyzed. I still get migraines. My stroke has left me unable to take Immitrex or other vaso-constrictors, because they are contraindicated for those of us who have had a "vascular event". Hah..sounds like a party, huh?

I have tried Inderal( current), Norvasc, amitryptilene and Serzone (current). In a farewell letter to me, my last husband listed my migraines as one reason he left following my stroke (that was 7+ years ago). For the last 3 months I have been getting 2-4 migraines/week. I take phrenelin for the pain, and as a last resort (2-4 times/month) I get a shot of demerol. I feel very depressed about my migraines. I was feeling extremely alone with it all until I found your migraine page, Ronda. I'm crying as I write this, knowing that others will know my fears and frustrations. The only food triggers which are triggers for me are caffeine, red wine, and colored alcohol.I no longer drink alcohol. Period. Or coffee. Last year I tried espresso for fun nad wound up taking an ambulance ride because I was unable to walk, talk or see nad feared I was having another stroke. It "resolved" into a migraine, but took 3 hours getting there. :-9

My mom got migraines, her mom got them and now my 23-year-old daughter gets them.

I am in the processs of changing to another physician for another viewpoint, as my doc thinks headache clinics are a waste of time. I think if he'd had a lifetime of migraines, he might think differently. I was very disappointed when he said that, taking away yet one more hope. I hope I hear from some of you. I can offer friendship, empathy and support, which is what I want, too. Not sympathy...I'm a winner, but empathy is great!

I am

Thank you,

---Monde Mattioli

Compared to others my problem seems mild. I suffer from non classic migraines on an almost daily basis. In April of 1995 I tried Imitrex and it worked. My first comment to my wife was "This stuff must be illegal." By the way, I am a 53 year old, white, male. Married, two children (boys) and 3 grandchildren. Imitrex gives me relief every time, although with some of my serious migraines the pain does not completely go away but is in the background. I have a question for others using Imitrex. Since you began using Imitrex have the frequency of your attacks increased? Mine seem to have. Although I suspect I am less tolerant of the pain now that I have something that works. I am using both injection and tablet depending upon how severe the pain is. My attacks start one of two ways. I either wake up with a full blown migraine at about 3:00 to 4:00 AM and use a shot or I go from feeling good in the early morning to a mild headache at about 10:00 AM. If I do not treat this symptom with a Imitrex tablet I will get a big one. I read where the typical migraine can last up to 72 hours. I keep a detailed record of medication and some of mine require medication for 8 to 12 days in a row. I am currently using the "foods to avoid" list I found in the internet. Have been following this list for about a week but have not had any improvement. How long does it take? Nice talking to you.

---Chuck Hanson

Since several people asked what the result from my 3 day stay in the hospital for withdrawal from narcotics, I thought I'd post the info here for everyone to read. My case history and a subsequent letter are further back on Ronda's page.

I checked into a local hospital at 10 am, having taken nothing but ibuprofin (and my preventatives RX's) that morning and bringing my #7 headache with me. Although my doctor thought I would experience a massive migraine from narcotics withdrawal, in fact I just felt sickish and slept all day. In the afternoon I got my first injection of DHE (dihydroergotimine) IV. The stuff stings like a !*?%>#<%& (that's swearing), but it's almost an instant migraine cure. The thought has occured to me that maybe I had such an easy time of narcotics withdrawal because the stinging was causing my brain to release endorphins, which are chemically very similar to the opiates.

The second and third days I was taking maximum dosages of ibuprofin and DHE shots twice a day, but I felt pretty good, actually. I also noticed that laughing and chatting with the hospital staff improved how I felt almost as much as the DHE. Aaaah, endorphins again.

Laughing causes our brains to release endorphins, too. So does hugging, a responsibility that my husband is taking very seriously. Smile.

This all sounds so upbeat and positive that I really hate to tell you what happened after I got out of the hospital. My doctor gave me a RX for DHE and the nurses had shown me how to do an IM injection (not nearly as bad as it sounds). OK, here's the bad news: my HMO doesn't pay for DHE and I still (2 weeks later) need two shots of it per day. It's costing me $130 every five days!! In comparison, my HMO did pay for vicodin, which was costing me $5 a week. When I explained the financial facts of life to my doctor, he called my HMO and requested emergency approval of DHE so I could continue using it. Great. They approved 6 doses a month for 3 months. I actually need 60 doses a month and I seriously doubt that 3 months will be long enough.

The week after my hospitalization, I felt so lousy and was so headachy that those I work with had to agree that I was half the person I had been while using narcotics for pain control. I'm now somewhat better; my energy level is normal, etc. But, I am running a #7 headache almost all the time, except within the first hour or two after a shot of DHE. One day I tracked how many times the headache spiked to a #8 or more (each spike lasting under 5 minutes) and I had spiked 37 times. When I told this to my doctor, he confidently informed me that the spikes were nothing to worry about, as they were part of my migraine. I really, really wanted to say, "no shit, Dick Tracy," but he's a very nice man and I didn't want to hurt his feelings.

The bottom line is this: I'm no better off than I was before the treatment. The only difference is that now I'm giving myself injections of DHE to control the pain (which it does admirably, but like I said, that might be because it stings so much, my own endorphins are what's helping reduce the pain).

I downloaded all the case histories that were posted last week and went over them with a marking pen to highlight symptoms and drugs tried and anything else that struck me as particularly interesting and sent them all to my doctor. The value of doing that is that he says I'm his worst patient (hardest to treat). I thought it would benefit us both if he saw me as part of a group where I am just average and not "the worst."

Anyone who wants to chat with me is invited to write to me at


Hi Ronda and other sufferers.

I am a 46-year old female cluster headache sufferer. I have had cluster migraines since 1974. During the first episode I passed out and was taken to Toronto General Hospital where they finally decided, after weeks of tests, that I might have Trigeminal Neuralgia and it might be best just to sever the nerve in question!

Fortunately, I found a really good doctor who said it was cluster headaches and gave me Cafergot. Then I moved to Vancouver, where I live now, and found a doctor who put me on Sandomigran. Over the years I have kept records of how often, how strong, what I ate, level of exercise, menstrual timing, everything the doctor and I could possibly think of. Nothing seemed to point to anything specific.

I get clusters every approximately 12-13 months, lasting for six to seven weeks, about three headaches every 36 hours. I have tried Feverfew, but with no success. My most recent research attempt is to follow an Ayurvedic diet and lifestyle. As a result, I did not get the cluster that was due in the fall of 1995. I now have one in the summer, which is unheard of for me.

I am so glad to find a homepage for sufferers. I have bookmarked you, Ronda, and will check in every so often.

If there are any other female cluster sufferers in Vancouver, please e-mail me. I know no one else who gets cluster, only friends of friends, etc. Sometimes it scares me how much it hurts. My poor partner can see how much it hurts, but has no idea of what to do. He makes me (at my request) strong coffee, brings me ice packs and worries.

Glad to have found you.

---Clelie Rich

What a great idea this is. I'm glad I found you all. I just had a spinal tap on Monday because my neurologist is beginning to think there is some other origin for my intractable migraines. I developed episodic migraines at age 7 but now at age 28 they have transformed and I live with a constant throbbing/piercing/stabbing pain on the left side of my head and at my left eye. It varies from a level 5 to 10 but most of the time it is at a 7. I've tried tons of drugs - can't even bother to waste time listing them all - the lastest was 8 weeks of Nardil which did nothing but make me miserable with side effects. But I am determined to be hopeful and to live despite the pain. I will never give up looking for a cure and in the meantime I use meditation, prayer, yoga, a special diet and all kinds of little tricks (like naps) to get through the day. Hope we all get well soon. I believe that it will happen - it's only a matter of time. Hate to sound like a polyanna but without hope it is almost impossible to keep going on. And I'm determined to go on and win out over the migraines !! Take care and God Bless.