Case Histories - January 1998 (1/9)

Dear Rhonda & others,

My 9 year old has servere headaches, & hopefully on Jan 5th when she goes to her second neurologist we can get her some relief. I have never had a migraine in my life, & there just recently has been a cousin (22) also diagnosed with migraines.

My daughter started complaining of headaches around 5 & she had one every 3 or 4 months that lasted about 4 hours. By the time she was 7 they became 1 or 2 times a month & lasted about 10 to 16 hours at a time, so I had her eyes examined twice & she finally got a very mild prescription for glasses. (that didn't help but I couldn't think of anything else it could be) I took her to the doctor dozens of times with no results, then my 6 month old got very sick (failure to thrive they called it he's fine now) & he saw a very good doctor to whom I mentioned my daughter Christi. He saw her the next day & spent almost an hour examining & talking to her & said she had migraine headaches & was very concerned. (especially for an active duty army doctor) Christi then had a (normal) cat scan, & a bunch of other tests run & tried Tylenol, motrin, Indocine, Peryactin, Midrin, ect. (then the army transferred her doctor & we are back at square 1) & most currently Tylonol 3, with codine. Last year she was an A-B honor roll student with an occasional C, & headaches about 1 every 4 days. Now she is 9 in 4th grade, & her report card is filled with D's & F's, she is in the emergency room weekly, for shots & just before Christmas she had a 10 day migraine in which she was seen 4 times. I have doctors who still tell me children don't get migraines, & I have documented proof! I am at the end of my rope, for Christmas she only said she wanted her headaches to go away, & I can't do that.

Currently she has 2 to 7 day's a month pain free, & I try to have her enjoy them, but she usually is so behind in studying that by the time she is done she has another headache. She misses lots of school because of the pain, or the drugs. I hope writing this was a good idea, I have 4 children total ages 9, 7, 4, & 2 & Christi is my only girl & I am always in need of a break. My husband tries his best, but he's not around as much as he would like to be because (if you hadn't guessed) he's in the army. I would like to correspond with any other mothers, or fathers. candyman@n-link.com. Sincerely

---Cathy M.

HI RHONDA, WOW!! I THOUGHT I HAD IT BAD, BUT THERE ARE MANY OTHERS WHO ARE HURTING MORE THAN I. I'VE HAD MIGRAINES SINCE I WAS 5. THEY ARE GETTING WORSE THE OLDER I GET. LIKE MOST OF YOU I ALSO HAVE TRIED JUST ABOUT EVERYTHING. WELL, THERE'S THE ONE ABOUT THE BANANA PEEL I HAVEN'T TRIED YET. BUT I HAVE TRIED LODINE NOSE DROPS, IMETREX SHOTS, FLEXERAL AND MANY OTHER PAIN PILLS MAINLY TO HELP ME SLEEP. WHAT HELPED THE MOST WAS TAKING FEVERFEW AS A PREVENTIVE, PLUS SOME VITAMINS. THAT KEEP MY MIGRAINES TO 1-2 A MONTH. THEY LAST 3-4 DAYS EACH TIME. WELL NOW I'M PREGNANT AND MY DOCTOR DOESN'T WANT ME TAKING IT. I USUALLY GET MORE MIGRAINES WHILE I'M PG ANYWAY, BUT THIS TIME IT'S WORSE. DO ANY OF YOU KNOW IF THERE'S ANYTHING ELSE I CAN DO? TYLENOL DOESN'T EVEN WORK ON MY NORMAL HEADACHES LET ALONE THESE MIGRAINES. PLEASE E-MAIL ME AT seekers@povn.com. GOD'S BLESSINGS,

---CHERYL

Hi Ronda,

I was doing a search under the drug name Avamigran, and your page, along with 6 pages concerning customs seizures came up. We have a friend who lives in Bankok who is a migraine sufferer, and being a long time sufferer myself, I was asking him what he took. I have tried everything including Imitrex and Migranol, and have found that the only things that gave me any relief were the narcotics such as Stadol that knocked me out.

My friend in Bankok sent me a sleeve of drugs called "Avimigran" which are aavailable over the counter in Bankok, and he suggested I try to take one at the onset of an attack, along with two Ibuprofen based pills. To my amazement it has worked every time!

My question is... is this medication available in Canada, and has anyone been on it long term? I was not sent the package, so have no idea what the side effects are, and as I am travelling for the next month, will not be in contact with my Neurologist! any information you could supply would be greatly appreciated.

Thanks,

---George Currie gcurrie@telusplanet.net

Dear Ronda,

I do not know if you remeber me but my name is Aimee and when i wrote last time i was 12. I am now 13 and i still get headaches and still the doctor has no clue what causes them.My docter wants to do ANOTHER EEG!!

When i wrote last time i also said that it (the headaches) did't get in the way of my social life when now they do. I tried out for the basketball team at my school and i got dizzy from the running and over halloween i went to a haunted house that was a little scarey and i passed out just a couple days ago i was sitting in spanish and i got real dizzy and well i felt like i was in a dream and i passed ou in my science class!! I wish that someone would make a cure for them casue getting them more or less stinks .I joke with my freinds and tell them when I grow up i want to be a doctor and discover a cure for migraines.

I have missed tons of school becasue sometimes they get so bad if I stand up I fall back down.

Last year was hard becase it was my first year in a new school. One day i ws in reading class and i got a headache and i started to shake and i had to be helped down to the nurses office by a teacher and a princable. Its embrassing to be crying and go down with a teacher.

I am still frightened that someday I will get a headache and it will never stop or that i will die from one.I am also frightened becasue still i have never heard a story of someone recovering or getting better for them.

I still visit your page often and i still read and re-read the stories and new stories people have sent you.I still cry from the stories because i have still haven't heard of a recovering person!

Over the last couple weeks I have been debating on creating a migraine news letter!I have decided on creating on and w/ your permission i would like to includ some of your page. i would give you credit for it but it would been nice to inclued maybe some case histories of recovering people! Within the last day or two i have decided on creating a web page AND a newsletter. I need huge amounts of help w/ it but i was still wondering if i could includ things from your page. Please anyone e-mail me at: LynnSleepy@aol.com

I am now on no medicine and still the advil and the other over the counter medicines don't even touch them.

The last almost two years have been hard. As the winter season draws nearer it is even harded becasue the anniversay of when they started is apporching. On the bottom of the page I copyed the first e-mail i sent you.

My headaches still have a "mind of their own." Last time i wrote i was going to a stress Doctor and she says it is not stress.I now don't go the stress docotor but still get migraines.

My mother and i are worried along with the rest of my family becasue we have no clue what causes them.

Thank you for listening,

---Aimee

Thank you so much for this site. I have suffered from migraines almost all my life (am now 39) and have never found any long-term relief. I also had seizures as an infant and child, and was on phenobarbital for them, but luckily those were controlled and I have not had a full-fledged seizure since 15.

For as many years as I can remember, I have been trying to find some way to get rid of, or at least diminish the pain, but to no avail. In the past few years I have been prescribed multiple medications, one to two at a time as a preventive, but so far no luck. I've tried Hismanal, Diazepam, Methocarbamol, Vicodin ES, Carafate, Midrine, Imitrex (but the shots and orally), plus others I can't remember. At this time I am taking Atenolol daily, with Fiorinal as needed.

I tend to get a true migraine at least once a week which lasts 2-3 days, and also have daily headaches. Since our last move I decided not to go back to work in the hopes that this would help. I'm not sure it has lessened the pain, but at least now when it comes on I can lay down in a dark, quiet room; which is impossible when working. My husband, my family and my in-laws are very supportive and don't feel I'm just trying to avoid working. They have seen me at my worst and realize the pain is intolerable. To me it's a joyous day when I don't have a headache and I always mark it on my calendar.

Thank you for this wonderful site. I'll be sure to check back periodically to see if anyone has new information. Wishing all of you a headache free holiday...

---D Garrison (gdgarrison@worldnet.att.net)

Hello and Happy New Year! It's January 1, 1998 and I just found your web site this morning. Maybe this will be a good way to start off the new year (I hope). Thank you for making this web site available!!! This morning, I woke up with one of my "banger" (as I call them) migraine headaches. I took one fiornol with codeine (which my neurologist doesn't like me taking), along with 1/2 of a 50 mg. imitrex tablet. The worst part of the headache went away, but the pressure is still there. I am 45 years old and can't really remember when my headaches started. I believe it was when I was around 16 or 17 years old. Until about 6 or 7 years ago, I only took over the counter meds. Now I take verapimil (daily) as a preventative. For pain, I usually take fioricet, imitrex, and fiorinol with codeine (if and when my doctor will give it to me). She claims that fioricet and especially fiorinol with codeine can cause rebound headaches. But sometimes the fiorinol with codeine is the only thing that works! Imitrex works sometimes but usually makes me feel pretty sick. Sometimes I will take a compazine to help the nausea. Actually, my headaches got much worse about 4 years ago when my internist put me on the birth control pill because of an ovarian cyst that I had. I knew that in previous years, the pill seemed to give me bad headaches and told him so; however, he claimed that this was a mild birth control pill and shouldn't give me any side effects. He said if I had problems with it, I could just stop taking it. Well, I did start having problems. Very severe migraines that made me practically pull the hair out of my head. I stopped the birth control pill, but the headaches didn't stop. That's when I went to a neurologist. The verapimil helped the severity of the pain a lot for a long time. However, lately, I believe I am in pre-menopause (hot flashes, period changes, etc.). My headaches are getting worse again and am ready to make an appointment with my neurologist again. She says there's always new things to try. I don't like trying new meds, tho, because a lot of meds make me sick to my stomach. My father has been a migraine sufferer all of his life. His doctor prescribes fiorinol with codeine for him -- and it's the only thing that has ever worked. In fact, as a child, I remember his headaches being more severe and lasting longer than mine. Since he's been taking fiorinol with codeine, he lives a normal life -- not like his younger days. Maybe I should switch to his doctor - ?? I wish all of my fellow migraine sufferers the best of luck. If you would like to talk to me or have any advice for me, please e-mail me at aab200@aol.com. Thanks,

---Angie

I wrote awhile ago, but my e-mail address was not updated to my new server so I did not receive any return mail. I have a 13 year old son who has terrible migraines and my heart is broken watching him suffer. He has then almost everyday and is on a gambit of medicine. He was even taking out of school because when he desn't have a headache he is "dopey" from the drugs to control them.

Is their any one out there who would like to talk.

A mother who knows,

--ME morehead@infocom.net