Case Histories - September 1996 (4/4)

I am so glad to Know there is a page like this . I've had migraine headaches since I was 10 yrs. old. I suffered daily headaches for years and survived on tons of tylenol , then fioricet , fioricet with codeine, or tylenol with codeine. Finally in my mid 30's I found a neurologist who put me on periactin and ercaf. I actually went 2 years with only 1 or 2 headaches. Unfortunately I gained almost 20 pounds on the periactin. It started eventually to lose it's effectiveness and since then I have been on pamelor 50 mg at bedtime and still take the ercaf as soon as I feel a migraine starting . This has worked for me but I am still getting a migraine 3-4x/wk. I worry that taking ercaf 4-5 tabs a week could eventually raise my BP. Does anyone know if this could be a longterm risk? I've tried imetrex but had side effects to it that really scared me so I quit it. One thing I've learned over the years is that one particular med may eventually lose it's effectiveness, especially the blocking meds. You may do better on something else if you begin to see a change in the frequency and intensity of your migraines. Has anyone else experiened this? Also I found you have to become a very boring person. What I mean is don't get overly upset or overly excited , because as soon as you start to relax a migraine is sure to settle in. A neurologist once told me this and I think he was right. I know my migraines are worse on weekends after a particularly stressfull work week. I would love to hear from other migrainer's especially those of you who have daily headaches . What have you found that helps other than meds, and staying away from triggers? E-Mail me at Jeff_O@Wow.com.

I've been getting migraines with increasing frequency from the time I was about 25. The first ones tended to be stress-related and of the vascular relief type. Now, I get at least two different types. What I call my "mechanical migraines" seem to stem from two very slightly misaligned cervical vertebrae (probably the result of a minor traffic accident several years ago). They are fairly easy to control. They begin as the right side of my neck begins to tighten. The muscle-tightening is accompanied by dull pain in the lower back part of my skull. I can often control these with muscle relaxants and "normal" pain killers, e.g., paracetamol, aspirin, rufen, combined with warmth and support to the neck, i.e., a neck brace or thermal wrap. If, however, this type of headache gets out of control, it will escalate to migraine-like pain that continues for a number of days. Codeine sometimes helps at this point. Triggers seem to include stress, cold, holding my neck at an angle, and sleeping in an awkward position.

My "hormonal" migraines are more severe and less treatable, but more predictable. They occur 2-6 times per month both before and after my period starts. They are accompanied by diarrhea, nausea (and occasional vomiting), auras, a feeling of tightness and burden over my whole body. Imitrex often works well to control the pain, but not always, and it doesn't affect any of the other symptoms. Unfortunately, I had a reaction to my last Imitrex injection (2 nickle-sized hot red spots at the site of the injection), so I fear my days of using Imitrex are at an end. These migraines last from 36 to 72 hours. These episodes are followed by 2-3 days of malaise, i.e., the washed out, exhausted feeling that usually follows a bad case of stomach flu. Chocolate and red wine are the only foods that I have found to date that seem to have an effect on these migraines.

I have found that ice packs seem to help if I can use them in the early stages of a migraine, and if I can spend several hours with my head buried in the ice packs--usually this entails going to bed for the night. I take two codeine tablets and climb into bed with my head wrapped in soft ice packs. Often I awake without any lingering pain. I've also found that making every effort to eat well regularly and to rest during an attack seems to enhance recovery. The biggest aid has been learning not to panic at the onset of a migraine. Now that my migraines are under control, I know I'll survive. My first attack lasted for a month. After that, whenever a headache struck, which was all too often, I reacted with intense fear, which I think actually made the attack worse. Now, I know that I can treat myself, and even if the treatment doesn't work well, the attack will end in a few days. I now rarely wish for a handy guillotine to end the torture. I also no longer force myself to fulfill obligations while in pain. I've learned that if "friends" can't understand, it's their problem, not mine. I have my own problems to deal with--namely, migraines. I'm fortunate, all of my family and most of my friends are very supportive and understanding.

Ronda, thanks for your page. Reading about others experiences is enlightening and encouraging. Does anyone know where I can find a list of suspect foods? I only know the most famous, e.g., cheese, chocolate, red wine, shell fish, etc.

---mlowther@safat.kisr.edu.kw

I know migraine very well. I began with migraines when I turned 30 years old. I remember driving home one Saturday night from a friends house. I had the worst headache I ever had in my life and was extremely nauseated. I pulled over to the side of the road I was so sick. All the sudden a police officer pulled up behind me. Imagine how that looked to him ... Certainly, he thought I was out drinking and I do not use alcohol of any kind, and never have. It was difficult trying to explain my headache to him, especially when I didn't know what was happening myself, It was my first migraine and I was scared to death. I ended up in the emergency room that night and was given demerol and sent home.

That night was only the beginning of my migraines. I suffered for the next 2 years. As time went on, they became more frequent until it was an every day occurance. The pain and nausea was so bad, I couldn't eat, sleep, or function at all. I even lost 30 lbs. I went to my doctor over and over. He was very sympathetic but outside of pain medication; vicoden and darvocet, and running between his office and the emergency room for shots of demerol, he was at his wits-end on what else to do. I felt hopeless. I was on Inderal and Midrin for a while. Nothing seemed to work. I had CAT and PET scans, EEG's, blood tests, lumbar punctures, nothing showed any abnormalties.

One day, I was enlightened of a HeadPain Management Clinic at a hospital north of town. Here, they were staffed with a team of Neurologists, Psychologists, Occupational Therapists, Physical Therapists, Dieticians, Dentists, Nurses and other health disciplines who were caring, dedicated and sympathetic to me and my head pain. This place made all the difference in the world for me. I was admitted to this hospital as an impatient where I was introduced to several different medications; DHE, Corgard, Pamelor as well as biofeedback, physical therapy, and occupational therapy. This program really worked for me! I even began to have headache free days and it was GREAT!

Now, 4 years later, I'm doing fantastic! I have many many pain-free days. I'm no longer on any preventative medications, nor do I suffer the severity that I once did. I still get a headache every once in a while, nothing to the extent that I did. The last year, I think I only suffered two migraines and was able to get them under control myself.

I am very understanding and sympathetic to people who suffer with migraines. How unfortunate it is that so few people truly appreciate what is means to suffer with a severe headache. I know the frustrations of trying to convince society, your co-workers, and your family that you are sick because headaches are so poorly understood.

Thank You for this page. I urge people who suffer not to give up hope on finding help. I've come across a good book by Dr. Joel Saper - "Help for Headaches." It also talks about these HeadPain Centers which are beginning to sprout around the country. It's worth looking into.

BE WELL!

---sue@erinet.com

I've now had headaches for 3 and a half years. I'm only 19 years old. People have told me I am one of the strongest people they know, they don't know how I do it everyday and that they wish they could take away the pain for me. In the beginning I said "No, I would never wish this pain on anyone." When even my closest friends say that now I still say no but I think "With no remorse, I'd give them and run."

I've tried pretty much anything that has been suggested to me, Cat Scans, EEGs, Sinus x-rayed, Jaw examined, Eyes tested, Allergies tested, Beta-blockers, Feverfew, anti-depressants all of. The most I received was a couple unwanted pounds, hallucinations, an overdose of painkillers and a loss of faith in doctors. I'd give it and run.

I have what has been classified as a "Chronic Daily Headache." From the moment I wake up to the time I fall asleep I have this horrible pain. I have often told my friends to picture their worst hangover headache and that is what I have everyday of my life. Sometimes better sometimes worse, but always constant. I'd give it and run.

They seem to come in waves over a matter of weeks, progressing until I am reduced to a crying child in a dark room, then receding and gainig. I can handle them on a day to day basis but when I look to my future it overwhelms me. I have no desire to have children the thought of the crying, the constant questions, the smells it isn't possible. Until they go away I will never have a family. I'd give it and run.

My family and friends have been so wonderful and understanding. It must be hard on them, not only that my mood swings are unmeasureable but also to see me in such pain. Yet they rub my back and bring me hotwater bottles for my neck. My boyfriend is always just a phonecall away in the middle of the night to listen to my sobs and reassure me I'm going to make it just fine. I've grown up so much faster than my peers I am not a normal 19 year old. One doctor asked me how I get out of bed each day, I can only do it with the support of my family and friends. I'd give it and run.

I didn't write this for the sob story effect. I am stronger than that, and I will beat this. I've got a few things to try yet, a chiropracter and an MRI scan. What I did write this for was to reach out to the other sufferers, and ask for any help or suggestions. Last night was not one of my worst headaches but I was still that sobbing child in a dark room, I may be strong but I am not superwoman I'm tired of all the pain. If you have any help please don't be afraid to e-mail me Thank you.

---Julie bpaynter@interhop.com

I am 51 yrs. old and have suffered with migraines since I ws 19 -- and I am tired. At this point, I'm not sure how much more the "plumbing" in my head can take! My migraines have gone from 1 every month to 3-4 a week, in cycles. right now, I am in the 3-4/week cycle -- and the last one left me plain old tired of pain. for the last 11 years I have used Cafergot -- I do not want to use a narcotic or synthetic narcotic because all they do is deaden the nerves so you don't feel the pain and then make you feel like you have cobwebs in your head for a day after the headache is over. I tried Midrin once and said no thank you! I used to use Compazine first so that I could keep the Cafergot down, but now I just try to "tough it out" -- again, due to my preference not to use any narcotics. I know that part of my problem is sinus related -- I had surgery 4 yrs. ago to re-build my scarred sinuses (all of them), and that did help, but did not eliminate the problem. I have not yet gone to a neurologist (do I sound dr. & medicine adversive -- amybe I am!, and am going to try a diet that I saw on the web (maybe linked to your site?) -- eliminate milk products, wheat, tomatoes (there goes pizza!), dark soft drinks, citrus, etc. for x days, and then replace them into your diet -- it's worth a shot! 90% of my headaches start between midnight and 3 am!!! -- so I get up many mornings feeling like my body has had no rest. I would appreciate any suggestions you can offer. I don't smoke, don't drink coffee ever, have eliminated a one per day diet Pepsi -- what else is there!

Thanks!

---Stephanie pagebnb@norfolk.infi.net