Journal of Migraine Sufferers

This is my third entry into Ronda's Journal. About my own progress-- I quit cafergot and codeine about a month ago,because after about 3 years of regular usage, I felt that these drugs were causing more headaches (possibly rebound) than they were curing. There an intitial priod of withdrawel that resulted in a 4-dayy long migraine that wound up wth a trip to the neurologist. The Doc put me on Amitryptaline, Selesium and anti-inflammatories. After 2 weeks of being a zombie, I quite those too. Now I have been 2 weeks of drug freedom, except for Ponstan, a drug similar to Advil. I feel much better. I have too be extremely strict about my diet: No MSG/Aspartame/free sugars/caffeine/nitrates. I received a very kind letter through on e of my co-migraneurs who warned me about tannins, so I now avoid those too. This diet basically ;leaves me to eat only natural foods, and since I'm a veggie, I'm eating almost all raw foods: fruits, and salads. If I actually stick to this diet, and its not easy, I don't get migraines. MIGRAINE TERMINOLOGY I think as a group we need to cnsolidate and fight for our rights. Our condtion is minimalized and we are not taken seriously far too often. One problem is our language usage. A migraine should never be called a "headache" It minimalizes the pain involved, and is not accurate--a migraine is much more than a headache, it involves visual disturbances, nausea, vomiting, sometimes fever, and emotional changes. Also, the pain is not localized in the s same area as people who get stress headaches or other kinds of headaches. Our migraines are more precisely in the area behind our eyes. Furthermore, minor inconveniences are termed "headaches" in our popular culture, and this leads to even further misunderstandings. So please do not use the term "headache." Always say "migraine." And clarify that a migraine is much more than a headache--it is a syndrome that includes severe pain behind the eyes. Peace be with you
Jonathan <>
Bangkok, USA - Date: 09/14/98 (Mon) Time: 03:48:33 AM
FEW IF ANY MIGRAINES !!! After 20 years of 3 to 6 migraines a month I only had 4 total last year. In the past each migraine came with a day before and a day after of depression. I spent thousands of $$ with Doc's, Chiropractors, Accupuncture, drugs, Massage & Physical Therapists. I have taken Cafergot/Phenobarbatol, Corgard, Imitrex, etc. I took all the tests that told me I had no alergys or alergic reation to anything. Yet I still had thoes 3-6 migraines every month for 20 years until Jan 1997 months ago. I've gotten my life back. I can now enjoy my family, my Job, weekends & vacations.Been there, Done that. Painless after all these years!

Russ Allen, Jr
Bakersfield, Ca USA - Date: 09/13/98 (Sun) Time: 09:46:33 PM

Hi, Most of my headaches are caused by onions, garlic, and chives. When I eat these things, the headache doesn't start until 4-24 hours later. It will last for 3 days. I'm 49 years old and figured this out on my own by keeping records of what I ate. So, I read labels and eat foods not known to contain onions, garlic and chives. If the food taste really good, chances are that I made a mistake and I pay for it later. To ease the pain, I try to sleep in the recliner, slightly reclined. Now that I avoid these foods, I am even more sensitive to them. I haven't heard of anyone else with this problem. It's difficult to figure out because of the delayed reaction. I think the problem is that I am unable to digest these items correctly.
Jim I. Robbins <>
Grand Prairie, TX USA - Date: 09/13/98 (Sun) Time: 08:53:48 AM
Hi everyone I'm back writing in the journal again in hopes that I can find out about a migraine drug called zomig. Everyone has been so great out there about sharing there experiences and what they know about some of the migraine drugs that I was hoping to find some people who have used zomig. I was talking to someone about zomig and they said they thought it was similar to imitrex but someone else said they heard it didn't work as well or as quickly as imitrex does. So if anyone out there knows please let me know. Also, does it come in pill form or shot form or both? Is it also as expensive as imitrex? Being as I'm always looking for new and better medicines I'm sure I'll be back in the journal real soon. Thanks everyone for your help. Carol
carol <>
north syracuse, ny USA - Date: 09/13/98 (Sun) Time: 12:42:30 AM
Hello! I did not know I would find so many stories that sound like mine. I felt as if I was the only one with so many migraines and a life so un-normal; however, having constant migraines and pain feels normal to me. Everyone thinks I take so many meds but they are the only things that help. I currently take Imitrex injections, the pills did not work and the nasal spray wasn't as effective. I am almost 21 years old and have had migraines since I was about seven. I never thought they would get as bas as they do. I was in the ER on wednesday and I've been there two other times since May. I go to school full time and I work part time. I am constantly stressed out having to call in sick to work, and miss classes which put me really behind in school work. Then I feel like I will never get my degree and that my life is basically reduced to one big migraine. It feels good to be able to get this off my chest as I usually feel that people think I complain with no good reason. Sometimes I think that most people spend half to three-fourths of their lives in bed and crying from such pain, I know I do. I honestly don't know what to do. Migraines affect my entire life, all of my decisions and what I actually get a chance to do. I am a really good student but my teachers don't take me seriously because they think I miss too many classes. Most of my college professors are so in-understanding. Get this...I have a Topics in Math class and I missed an exam, my teacher said that it was really conveniant for me to have a headache on a test day. I was appalled as I had to go to the ER room that day. He continued to tell me that he did not give make-up exams for any reason even as I showed him my hospital note, and he told me that I had penalized myself. Can you believe this Jerk?!?!? I left the class full of tears for I could not say anything to such an ignorant comment. I later went to the office of Disabled Students (ODDS) and the director took me out of his class and put me in someone else's. Anyway, it feels good just to complain for a while to people who actually and truly understand what it is like to have a life which seems to be full of pain. i get so depressed sometimes and feel that somehow it is my fault. My fiance is most supportive and so is my family, but I often feel life is passing by and i still have a migraine and can't go outside or do anything. It is very frustrating. Anyway, thanks for reading, if anyone ever wants to chat or elave me a message, please do. Maria
Maria <>
sarasota, FL USA - Date: 09/13/98 (Sun) Time: 12:38:50 AM
I usuallly get migraines about twice a year, I have had 6 in the last 3 weeks. My lifesyle has changed dramatically and I stay stressed out, But now I am getting them even when I am relaxed or don't have much going on. I am allergic to the "migraine" medicines. My doctor gave me sedatives. I can't take them, I have 4 children, a new husband, I go to college full time and work. Sedatives?! Yeah right, I wish. Anyone have any suggestions? Thanks, Paula
paula h <>
KY USA - Date: 09/12/98 (Sat) Time: 06:43:38 PM
I have had migraines for more than 15 years, I am 28. I have just moved here from mpls,MN and have had a very difficult time finding a doctor than will reat me, it is especiall hard because I do not yet have insurance and i have had to dole out $400 buck for consultations in which they only tell me there is nothing they can do for me, ...this is because i have been on every preventable med out there, I am allergic to all anti nausisants, DHE, and imitrex,and because I have had three open heart sugeries for a congentital heart defect, this only coplicates matters more( it has been questioned if this does not in some way connect,perhaps somehow with the blood flow to the brain) I have been to several pain management clinics all over the country as well as headach programs all over the country. I have tried every homeopathic and alternative treatments I have ever heard of for migraine, such as accupuncture,chiropractic,magnets,i had an applied kinesiologist...the list goes on, i have had every test available to no avail, thus last year I went to a pain management specialist who finally gave me my life back and although it is very contraversial( an I very much understand why) after much deliberation I agreed to go on chronic pain narcotics. I know many people disagree with this but I only want to be able to function and have something of a life, I have iratractable migraines, constant with vomiting,photophobia, sesitivity to sound,lightheadedness and dizziness as well as skin sensitivity,atypical skin problems. I have no triggers, I have no triggers, I have tried all the food diets etc,and I only rarely get an aura but as my headaches are constant it doesn't matter, well anyway i guess the whole point of this is that there is some comfort in knowing there are others with simalar lives, if anyone has any advice or knows of a good doc in LA please e mail. thank you for your time, tess.
tess <>
LA, CA USA - Date: 09/12/98 (Sat) Time: 06:06:52 PM