Journal of Migraine Sufferers

Hi Ronda and all you fellow headache sufferers out there,

I'm 26 years old and like most of us, have been getting headaches since childhood, and especially since my teenage years (oh no, I'm sounding old!!) It wasn't until last year that they were diagnosed as migraines. Imitrex has been a godsend. It works virtually every time. The problem is for the past month, there have been only two or three days when I haven't had to take it. I finally called my doctor today and he is going to start me on sansert. It sounds pretty scary to me--you can take it for only six months at a time because it can cause something called retroperitoneal fibrosis. Has anyone out there tried it? If so what has your experience been? Also, is anyone experiencing a rebound headache from imitrex? My doctor, who specializes in headaches, insists that imitrex isn't supposed to rebound like some other things can.I'm not so sure.

I've resigned myself today to knowing I have got to do better with the diet. Chocolate is my only trigger I know of for sure. Yet when I tried eliminating all possible diet triggers, I know I felt a lot better. I eat way too much sugar.

Anyway, I AM more than just a headache. Sometimes I have to remind myself of that. It's just great having this outlet, because so much of the time I suffer in silence. It's so easy to do, because at least with imitrex, I can keep functioning. But each time I pop a pill, I worry about what it's doing to my body, and even more about what it's doing to my pocketbook. I even had to take out extra student loans just to pay for the stuff!

Thank you Ronda, a great web page, and thanks to everyone else for your stories and input. I'm having great fun trying to become computer literate. If anyone wants to email me, I'm at lmmousel@unmcvm.unmc.edu. Hope to hear from you soon,

---Lynn


Hello Ronda:

I am a 40 year old male and have suffered from debilitating migraines for as long as I can remember. I get the hemiplegic/basalar variety. Worse than the pain are the stroke-like symptoms that leave me unable to function. Reading through the journal entries sent in by fellow migraineurs was like discovering long-lost family.

I too have been on a long list of medications prescribed by doctors who did not understand the dark reality of dealing with this condition every day. Massage therapy, diet therapy (at one point I ate nothing but lamb, rice, beets, and distilled water!), accupressure, chiropractic manipulation, etc. offered no long lasting benefits.

I especially empathize with those individuals who are trying to deal with feelings of depression and guilt associated with migraine. I'm sure some of these feelings come about because of chemical changes tied to the headache and/or medications we take to attempt to control the pain. My heart goes out to those people who wrote you of how they were just drained, tired, and out of hope. I am there myself. I cannot conceive of what it would be like to go even one week pain/symptom free. But having missed so many things in life that most take for granted I believe I can better appreciate those treasured moments when I am pain free and the sun is shining, and the sky is that perfect crystal blue that lets you see all the way to heaven.

Thanks to everyone who shared his/her story. Here's hoping for a pain free tomorrow.

---Dan

I would welcome any comments/correspondence from fellow migraineurs at bjd.do@worldnet.att.net


Hi:

Like everyone else who has written you, I am also very glad to find your page. I have had headaches/migraines since about the age of nine. Pregnancy exacerbated them then they got better for a while. Now, 7 years after my last child they are getting worse than ever. Yes, I have been through all the testing etc. to rule other things out.

I have been on Imitrex (sometimes it works, sometimes it doesn't, and I get heart palipitations), Inderal (didn't work at all), Elavil (worked somewhat but I gained 25 pounds in 3 months), Fiorinal (didn't even begin to touch the pain, and most recently Stadol (which doesn't help the pain and it makes me feel like there are bugs crawling all over my body!). My doctor has suggested trying Depakote to control the day to day headaches and also to try to lessen the severity of the migraines but from what I have been reading, one of the side effects with this medication is also weight gain. Demoral/Phenergan injections give me the most relief but as one of the other writers put it; too many of the doctors are "weenies" about giving you possibly habbit forming meds.

I would be interested in hearing from anyone who has tried Depakote for migraines or is contemplating trying it. I can be reached at: jen@wmol.com


Dear Ronda,

I don't know if you will remember me, but a few months back my migraines had become so severe that I was suicidal. In cooperation with my doctors, I received better treatment for symptomatic relief and some counseling that got me through that crisis. Part of my support system, the letters and notes I got from the folks here, was very important in seeing me through the worse times.

I now have an interesting bit of medical history relative to migraine and iron deficiency anemia that I would like to share with you and your readers.

All of the male members of my father's side of my family are migraineurs. In addition, we all suffer from mild (borderline) iron deficiency anemia. In serum ferritin tests, for example, a result of 30 or higher (up to 300) is considering within a normal range of iron levels. My family members have serum ferritin levels of 24-25 typically. A couple of years ago I came across a couple of articles that related iron deficiency anemia to migraine headache and to a condition called "restless leg syndrome." After discussing the articles with my doctor, he agreed to put me on an iron supplement (an oral iron salt) and see what impact it had. The results were impressive. My serum ferritin levels rose to 88-90, my restless leg syndrome improved materially and, most important, my migraine frequency dropped down to twice a month from 6 or 7 a month. As you can imagine I was very pleased.

Then, about 6 months ago, everything reverted to my old condition. My restless legs got very bad and my migraine frequency picked back up. It was such a material change, that my wife kept asking me if I was remembering to take my iron. I assured her that I was.

At the time that I began the reversal, I also began taking a medication called Prilosec (for acid reflux). Two weeks ago, I came across an article that indicated that Prilosec was so effective in reducing stomach acid that it diminished the bioavailability of iron salt supplements. To check to see if that was my problem, my doc ran another serum ferritin. It had fallen to 9 from a high of 90. Needless to say, I discontinued the Prilosec and am looking forward to an increase in my iron blood levels and a corresponding improvement in my migraines and the restless leg syndrome.

---Larry lsolove@netset.com


They started when I was about 22 and for a decade or so were extremely predictable. Once a year, nearly always in January, I would have a month where I would wake every night in the early hours with a pain in my right eye/temple that developed into a raging beast and lasted for a hour or two. I only once consulted a doctor and he tried a variety of remedies but without success. So I reconciled myself to putting up with them. In my late thirties they became less regular and I would sometimes miss a year or two. Recently although the bouts still last a month or 6 weeks they occur only every three years or so. About ten years ago I consulted a doctor who was knowlegable and he diagnosed it as cluster headache, a variety of migraine and suposedly the most painful, and prescribed deseril and caffergot which worked well for a couple of bouts but then didn't. During the last bout I consulted again and was recommended oxygen. this was extemely successful in that after a few minutes of breathing it the pain disappeared, but it would return. Nevertheless, at the cost of being more or less awake during the night I could avoid prolonged pain. The bouts are not precipitated by anything that I am aware of, food, climate, or worry but come out of the blue. That's it, end of story.

---petert@pip.com.au


Hi Ronda--

Thanks so much for your migraine page. Reading other people's stories really helps--though it's discouraging to see that doctors don't really have much of a handle on migraine relief.

I have had migraines since I was in my early 20s--It didn't occur to me that this is what they were --I thought I just had `really bad' headaches. You see I have memories of my mom lying in bed for days at a time with the lights out and ice packs on her head. These weren't *that* bad. Well over the years they became increasingly bad. I finally went to the doctor. I started taking fioronal when I was in my late 20s. My doctor, at that time, also wanted to start me on beta blockers--I was reluctant I thought I could handle the headache pain. I come from a long and stoic line of migraine sufferers. My aunt (who also suffers, as does one of my cousins and so did both of my maternal grandparents) once told me the only thing to do is turn the lights out and sleep it off.

So time elapsed --the fioronal was working ok, but I was also taking tons of advil and excedrin as well. I was under considerable stress at the time-thus getting more headaches-well my stomach started burning a lot--and I started throwing up sporadically. Finally one night I was up sick all night. I went to the doctors the following morning to find out I had a case of gastritis--no more NSAIDs for me --and an Rx for fiorocette. Now the headaches have been frequent and kind of bad so I went back to the doctor who gave me Reglan to take with the fiorocette. It works *ok* but not great. Sometimes the pain just doesn't go away with the fiorocette. She suggested taking 2 at a time. I don't really want to get hooked on fiorocette (a problem my mom has). Now she wants me to go on low dose (40mg) beta blockers just around my menstrual cycle --that's when they are absolute killers.

Has anyone else done this? She said she has had some success with this with some other patients. She said if this doesn't work then we'll increase the dosage. It just seems to me that starting at such a low dose that it could take 6+ cycles to get to a dose that's good (if it works at all).

---Kathy kath@hrl.harvard.edu


Dear Readers,

Finally somewhere to vent out the frustration of this condition. I am 30 years old as of last week and a wife and mother of 3 boys (ages 9, 7, and 4.) My M.D. has been entirely patient with me since I began treating the migraines through him in November of 95. I have suffered from them on and off since I was 16 but they were so few and far between until 95 that I never seeked treatment. Since 11/95 I have tried Midrin (which to me was doing less for me than an Advil or Tylenol did.) Then I went on a preventive medication of Propranidol (it's a low dose blood pressure pill used for preventitive treatment for Migraines.) Finally I had such a horrible headache one day that I couldn't drive, or see and couldn't even be a Mom to my kids. I ended up in the Dr.'s office and received an injection of Sta-Dol. By the time I left the office I could barely breathe from the side effects of the medication. On the same day I was given a nasal spray of Sta-Dol to take as needed after the medication wore off that evening. The side effect from the nasal spray was as bad if not worse than the injection.

The next step was to take Imatrex. Unfortunately it makes the headache lessen while its in my system but does not completely make it go away and I end up taking Tylenol with Codeine as a back up to the Imatrex. I am so upset about these headaches because I think my husband is getting very sick of me being sick and I feel so inadequate not being able to take care of the kids. I work 2 small jobs and I don't feel stressed out at all, which is what everyone says is probably causing them. I enjoy working, I enjoy being a mom and I love being married. So why is my brain in such a mess. It has me to the point of depression.

Yesterday, I had another very bad migraine attack and my mother in law drove me to the doctor, I was given an injection of Nubain (Nalbuphine). It helped at the time and put me out of commission until this morning. I still felt farely drugged but well enough to take the boys to school and go to visit my sister in law. The truth is I had a tinge of a headache left after the Nubain wore off and felt panic stricken it was coming back, which ultimately by 10:30 am it did. I called the doctor again and he said that since it wasn't yet gone he was calling the pharmacy and prescribing Valium for me. I am very nervous about taking all these medications but at the same time, I am out of commission with pain or without pain, so I would at least prefer to do it without pain. How do we get people to realize this is not all in our heads (no pun intended).

My doctor and his staff are probably the only ones that truly understand how horrible these headaches are. My husband feels... he gets headaches and deals with them so why can't I, my mother, sister and father in law are fully sympathetic but I am sure it is very trying on them because they are always there to help me out when this happens. I know that this is what family is for but I feel so bad asking them for help. I am fairly an independant person when it comes to taking care of my boys and when headaches began to effect your daily life and interfere with your daily routine it is not only frustrating to me but I end up very disappointed in myself as a mother and wife. Thank you Ronda for letting me vent. It felt good ... I still have the migraine at this time after taking a valium so I need to sign off the computer now. Hopefully when this episode is over the doctor will find out something from the Cat Scan he wants to schedule. I would appreciate any feedback sent to RayCooper@worldnet.att.net. It's my husband's internet address but he will save anything sent to me. Thanks.

---Maureen Cooper


My name is Rick, I am from Madison, Wisconsin and I have had migraines for the past 7 years. Most of the time I have them 16 - 18 hours a day about 5 - 6 days a week.

My Neurologist has but me through all the normal drug therapy, encluding Imitrex. I have been using between 1 & 2 Imitrex inj. daily. About 460 over the last 7 years. Over the past months or so, I have been getting a reaction from it. Along with the burning on the back of the neck, I am now having strange orders being relessed from my body, and also I am finding it very hard to rememmber things.

I am on no pain killer's for the migraines. I am looking for releif. If there is anyone that might haave any ideas Please talk to me.

You can reach me at E-Mail: rbresset@waun.tdsnet.com

Thanks

---Rick Bressett


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