I had all the classical symptoms - frontal head pain always on the left, eye pain, light sensitivity, nausea, vomiting, and of course debilitating pain.
It was not properly diagnosed until I was in my 20's. I was first started on prevention drugs - caffergot, midrin, etc. None of them worked.
Beta-blockers were discussed but were contraindicated as I have asthma. Finally I was given Fiorinol with Codiene which generally worked. The first year that Imitrex came out my doctor would not let me try it because he had heard rumors of a few deaths. One year later, the literature was unable to link those deaths to Imitrex so I was allowed to try it. It was in subcutaneous autoinjecter form then. The positives were that it was effective in over 90% of my migraines. Slight negatives - the injection hurt a bit, and sometimes I experienced some chest tightness which always went away. When the pill came out I tried it but the relief wasn't as good so I went back to the injection. I always have Imitrex on hand now for my migraines. I no longer have to rely on narcotics for relief.
I started suffering terrible headaches at the age of 6 and suffered until my probably my mid 40's with most of the typical symptoms listed in your site. I was led to believe that it was my own fault--either because of diet or worrying too much, etc. Usually I was told that I got one because I was constipated (ha). It is a funny thing that at this point in my life I can't say I have been bothered with that complaint in recent memory (and probably never was).
My childhood was not what most would call trouble-free and enjoyable. My mom died when I was nine and Dad remarried the following year and I always had lots of responsibilities at home including watching after a younger brother. I suffered through my teens and 20's with horrendous headaches and usually I was incapacitated for at least two to three days with each episode. Of course, this wreaked havoc with my career and family life. Usually if taken early, medication such as aspirin might help alleviate the headaches, but the majority of them just had to run their course. I can recall one particular incident when my fourth child was a baby which had me literally "banging" my head against the headboard of the bed and my husband became so alarmed, he wanted to take me to the hospital. I just remember thinking that the pain from hitting my head was far less severe than the excrutiating the pain of the headache.
My father suffered headaches most of his life but I don't hear him mention having them much anymore (he is 79 now), so maybe he "outgrew" them also. My personal experience leads me to believe that hormone levels dictated the frequency and severity of my headaches. I have not had one in years now and don't really remember the last one I had. This would bear out the statement in your site that frequency seems to be reduced with age. All I can say at this point is that I don't miss those terrible agonizing episodes and an occasional headache from eyestrain can't match headaches in my past.
Keep up the good work and thanks for letting me tell a little of my headache history.
I have tried so many different medications and combinations of medications (Midrin, Cafergot, DHE 45, Amitriptyline, Darvoset, Fiorinal, Elavil and so on and so on). The DHE 45 got rid of the migraine but it left me unable to function so what was the point? The Fiorinal never got rid of the migraine but it allowed me to go on with my day - feeling quite happy. After taking it for ten years I became addicted and was taking so much that it got completely out of control. It took me six months to get off it. I am currently taking Imitrix injections, the first drug that has ever worked for me, Stadol and Depakote. I thank God for Imitrix - it is a miracle, however, it does not work for me all the time. I take depakote as a preventative medication and it also allows me to sleep in. I use Stadol so my system does not become immune to the Imitrix. Stadol is a little strong for me, it makes my skin itch and makes me feel very strange so I add water to the bottle and then use it and it seems to work. I have not told my doctor that I do this - I think he might think I am crazy. I also have a concern about Stadol. When I take it, I have the urge to keep taking it. This is a very strong urge and I am afraid I might be using it too much even in its diluted state. Has anyone else experienced this desire or need to keep using it?
My head hurts more days than it does not and I only use the Imitrix when they start to become "unfunctional" or almost "unfunctional" migraines. I usually just try to deal with the rest or use the Stadol. Like most of you, my migraines are usually on the left side of my face which causes excruciating pain in or behind my left eye. It seems I have so many triggers but I will list just a few: MSG, the smell and taste of peppers (bell, jalapeno, chili), onions, perfume, various odors, light (fluorescent, glare, sun, reflections), altitudes, rain (change in barometric pressure), wine, sleeping in, nutrasweet, etc. Can someone tell me how to tell your Mom you do not want to come over because she wears too much perfume? Or your co-workers? Do we even have a right to ask them to not wear any?
As I am getting older, I am starting to get the visual migraine stuff. I have been fortunate so far. I can be just sitting and all of a sudden thousands of sparkles seem to be falling from the air. It is pretty wild. While reading other migraine sufferers stories, I noticed many people lose their vision. I do not in my waking life but I often lose my vision in my dreams. I thought this was very interesting. I keep a dream journal and have never associated this with my migraines but now I wonder if it is happening to me on the nights when I wake up with my most severe and unfunctional migraines - does anyone have a response?
I have the best husband in the world. He deals with all this so well. I get a little, okay very, irrational and very, very short tempered when I have a migraine and he just understands.
I feel like I am just rambling but I never had the opportunity to write about my problem to others who understand. My biggest problem at the moment is with my work. I realize that I am lucky because I work through most of my migraines but I do miss approximately one day a month or if the weather is bad or something unusual is going on it might be a little more. My work seems to feel this is excessive and has written a disciplinary notice to my file. Is chronic migraine covered under the Americans with Disabilities Act? Do we have any rights at all? I feel there should be exceptions to the rule for people with illness as we are all not the same. I also feel once a month is not excessive, for me anyway. I really need to know how others handle this. I plan on attending graduate school to become an Art Therapist and I am wondering if I really should invest so much time and money into it if I will just end up losing my job because of this problem. I hate the fact that my head, my migraines have so much control over my life.
Anyway, thank you so much for having this web site. Having migraines can be a very isolating thing at times. It seems very hard for people to understand, even friends and family. I guess it is just easier for them to believe there is nothing wrong with you. They think you just have another "headache". They do not realize the magnitude of the pain or that the pain gets so bad that at times it just seems everything would be better if I just shot myself in the head. I would never do that, but I often think of it as I am sure many people suffering from chronic pain must.
Menstrual migraines / Dieting and migraines -- I wanted to bring these topics up because I almost never see them treated.
If any of you women suffer acute migraines during your periods, or slightly before or after (or at any recognizable point of your cycle), you're not alone. I've spent years slithering out of work at noon on period days, pretending I had unbearable cramps, because people will accept that a lot more readily than they do a "menstrual migraine," which they consider the figment of a hypochondriacal or overdramatic imagination. It's true that non-migraineurs don't understand migraines in general. There should be a national awareness campaign with commercials, magazine ads. On bad days I believe it could be classified as a disability. My menstrual migraines tend to appear with the onset of the period and continue, diminishing, over the following week. They're very bad.
Going on the pill helped, if anything, contain my migraines within a predictable pattern by regularizing my hormone fluctuations... the pill is not to blame in my case. The period is to blame.
There's a book on the topic called "The Hormone Headache" by Seymour Diamond, M.D. which elucidates a theory on hormone-migraine connections; for example, stress causes a flood of adrenaline, and not eating causes the fluctuations of the hormone insulin. According to the theory, any or all or some of these fluctuations can trigger blood vessel activity in a migraneur. Interestingly, red wine contains a chemical that affects the body like adrenaline (that must be why it's the best buzz!). The hormones of the menstrual cycle undergo sharp changes right around menstruation, thus the formidable menstrual migraine.
My good news is that imitrex works well for mine, but even before I'd heard of imitrex, Dr. Diamond's book helped me understand patterns in my headaches so I could do more to deal with them. Unfortunately, because Imitrex is doled out so begrudgingly by my HMO, I never have enough on hand to help with another problem I rarely see mentioned: migraineurs can have real trouble dieting!! When I reduce the fat content of my daily diet to a weight-loss formula of around 35 grams per day, and exercise vigorously, I'm assured of a nice pleasant tomorrow spent writhin' and cryin' in bed. In fact I went on a real fitness spate this winter, tried to cut out butter, milk, cheese and meat, my headache helpers, and go to the gym a couple of hours every day to train like a real athlete. But I gave up my superfitness aspirations eventually cause of the almost daily migraines. Moderation in everything is what my body demands, I suppose, not to mention lots of oils, meats and dairy stuff. Hello Subway.
Just to end on a patriotic note, since the olympics are on: if the government would just tote up all the nation's work hours lost to migraines, they could see the cost and make all the best drugs cheap and very available so we didn't have to feel like junkies badgering our pharmacists and doctors with manic pleas for more, more drugs, sooner, sooner.
Just checked out your web page via a link from the CNN lidociane story.
Maybe my experiences can help others...
I have been a migraine victim for ALL of my 25 years. BTW, I am a white male, if that is relevent. My mother says that I used to get migraines even when I was a baby. While a toddler, I used to complain about having "mad heads". My Mother and her Mother are migraine victims too, so she knew exactly what was going on.
My migraines are the stabbing piercing ones that are behind my right eye 9 out of 10 times. It feels like someone is putty a knife in my eye and gouging it out. It is excruciating. I have wished I were dead sometimes (of course this feeling is gone with the headache). The pain has been so horrible. I get the sweats and writhe in pain. It is awful.
My migraines are caused by hunger, tiredness and stress. If I miss a meal or eat late, I am usually guaranteed a migraine. Same goes for when I am over-tired or under stress.
I am almost always vomiting during BAD migrianes. Sometimes, totally uncontollably. I would puke my stomach empty and keep on with the dry heaves until the pain would be too much. My chest would ache afterwards.
I am now starting to think barometric pressure is a cause too. Does anyone else think so? I always have the warning signs of a headache just before it rains. BTW, it is raining today...
I have used all the drugs. Everyone of them. I have had EEGs and even had nasal x-rays done. My sinuses hurt like a son-of-a-b____ when I have a headache. I wanted my doctor to make sure I didn't have any sort of abnomality or blockage in my sinus cavities. I don't, unfortunately. I was hoping for a reason that could lead to a solution. Bummer.
I have found a combination of drugs that seems to be working okay. I take 25mg amityptaline every night and use the Imitrix injectors to eliminate the headaches.
I'm not sure if the amityptaline prevents headaches or not, but it sure gives me a really good nights sleep. The only downside is that it makes me REALLY GROGGY in the morning somewhat cranky. It takes about 1 to wear off.
I tried the Imitrix tablets and found it to work sometimes. I didn't care for the side effects though. I would be really "stoned" for about 3 - 4 hours and sleep a lot during and after. I tried the injectors on a whim and suprisingly it worked much better. That is what I use exclusively now. It works fully 50% of the time, partly 25% of the time and is a waste of $38 for the last 25% of the time. I find that the side effects are lessened and not as long lasting.
I read that someone is using Stadol. I had some bad reactions to that stuff. I made me soooo stoned that I could not function. I would reach for the doorknob and it would be a foot away from where I reached for it. I just could not function. It was almost scary sometimes.
I used to get REALLY BAD caffiene withdrawal and delayed stress on weekends. It was kinda wierd. Luckily my doctor gets the same thing and suffers from migraines too. He understood. I would drink coffee all week; 2 - 3 cups daily. I like my coffee in the morning. On Saturday mornings, I wouldn't have any coffee. This would cause a migraine Saturday afternoon and last until Tuesday. The delayed stress would contribute too. I did this little routine for about 5 months this past winter before I figured it out. Now I have a couple cups of coffee on Saturday morning, eat a good lunch early and not think about work. This has given me back my weekends. I actually have had mild cases of this for the past 3 1/2 years that I have been out of college.
BTW, I don't think the usual foods, red wine, chocolate, caffiene, MSG etc cause my headaches. I don't believe that they do it. It is only the lack of food that causes my headaches.
It has been a long go to get where I am now. I now get migraines, sometimes as little as once a month. I do get the warning signs every second or third day, but rarely the full migriane. No more than once a week now. I used to get them every couple days. :(
My fiance finally understands my migraines and helps me. At first, she didn't understand how I could be writhing in pain for 12 - 36 hours. She used to get mad at me for canning out on parties, family gatherings, committments, etc. She thought I came up with a convienent excuse to get out of going. I am a shy person and the minor stress of going out would be enough to get me going. Of course the other big three triggers listed above would have to be involved. We have that all worked out now. I am more outgoing, try to relax and avoid to triggers to control my headaches, and she in turn helps me to a dark cold room and brings me ice packs for my head. And most importantly, she understands...
That reminds me. I find cold packs on my eye/forehead to provide some temporary relief. If I try some relaxation techniques with this I can sometimes get rid of a headache when it is just starting.
I am not one to dwell on my problems. I just deal with it and live my life. I am happy to help others, but not much for discussing my problem. I hope my story might help someone else...
Life betweens migraines is great, don't let them get you down.
Good luck to you all!
I feel very fortunate compared to many of the folks telling their stories. I've had migraines for about 30 years but I didn't know what they were then. The first day of my period I would get a killer headache with nausea and visual disturbances and nearly pass out. After throwing up and a nap I'd feel fine; cramps were not my problem. I had a few during my teenage years that required a dark room, quiet and cold compresses. This went away when I started taking birth control pills. About seven years ago I had a week of cluster headaches - sharp stabbing ones about 40 or 50 times a day. Finally I went to a specialist, Dr. David Buchholz at Johns Hopkins. He is the one who told me that all those PMS and sinus headaches I had been experiencing were all migraines. In addition to tylenol with codeine, what worked for me was a change of diet - avoiding suspected foods, similar to the list that severe PMS sufferers are instructed to avoid. These include caffeine including not just coffee but tea and chocolate (one of my worst triggers!), alcohol, nuts including peanut butter, MSG, hard or aged cheeses [cream cheese or fresh mozzarella are OK in moderation], nitrites [in preserved meats and bacon], yogurt, bananas, and onions. For some people it is not just one of these foods but the combinantion withothers on the list. I dropped them all out of my diet and then added one at a time to identify the triggers: chocolate and nitrites in deli meat are the worst with coffee very close. Now my daughter has started to have them tooand I'm trying to help her with diet modification plus fiorinal from her pediatrician. My husband has had migraines since childhood. And as others on your page have noted, stress is a considerable factor. Job changes have helped both of us. I have an easy time compared to some correspondents but I hope that some of these observations may be of help.
Hang in there!
PS Did anyone see the exhibition of art by migraine sufferers that appeared in San Francisco about 6 - 7 years ago? I was absolutely stunned to see these paintings of what the world looked like when their aural disturbances were happening -- it was just what I had been trying to describe! We are in this together.
I'm at firstname.lastname@example.org