Case Histories - October 1996 (2/5)

Another migraine sufferer that went a lot of year without finding any relief. Actually the worst part of my migraine/headache was not in my head, it was the vomiting that accompanied it. For the last four years I have been suffering through monthly bouts and I jokingly called it my 'weight loss program' because I was not able to eat anything for 2-3 days each month. I went to several docters who tried a variey of expensive pills which offered no real relief. One day this past summer I overheard a conversation which indicated that a good anti-histamine could solve the vomiting problem. Lo and behold, a few weeks later I felt the headache and the nausea come on and I immediately got out the Dristan tablets. It doesn't do much for the headache BUT it is 100% effective in keeping down the vomiting. I still feel nausious enough that I do not eat very much during my headache bouts but at least my head is not in the toilet. I sure hope that this can help somebody else out there.

---nature@rockies.net

Hello my name is Leeanna Miller I am 24 years old and have migraines since the age of 4. I've been all over the charts as to all the medices I have tried I have evne been to The Diamond Headache Clinc In Chicago. The last two years have been the worst. I have a headache almost all the time now and am gong back into the hospital on Tuesday to try another round of treatments. on top of all of this I have had a tumor removed from my chest and major jaw surgery. My brother also durring this time was at Mayo Clinic with a massive blood clot on his mid-brain, I think the stress factor might have something to do with it:) I hope thing get better because I'm getting married in Febuary. I would love any suggestions on handling stress, and the such.

Thanks

---Leeanna Miller Leeanna@Juno.Com

Congratulations on your excellent migraine page! I am a physician who knew nothing about migraines until I married a man who suffers from frequent migraines. Since then I've done a great deal of reading about the problem. My heart goes out to migraineurs andtheir families. Not only are lives interrupted and compromised, but finding compassionate medical care is difficult.

We physicians like to be able to cure illness. Migraines are a chronic illness for which there is no cure. That makes some physicians anxious and defensive. Many of the letters on your page stress the importance of finding a provider who will validate the problem and support the headache sufferer in his or her efforts to continue to lead a productive, satisfying life, whatever that takes. If you and your provider can accept the fact that this is a chronic problem to be "managed", not cured, that's one step in the right direction. A forum like this really helps!

Caveat: I am not a specialist in headaches and I do not treat headache patients. My comments are "lay" comments (not medical advice).

I am convinced that migraines are like the story of the blind men and the elephant. We have a lot of data, but haven't been able to put it together to understand migraine headaches and accompanying disorders (nausea, muscle pain).

Aside from the lack of a good treatment or cure for many headache sufferers, there is the problem of "medication abuse". Headaches can't be seen. Drug abusers sometimes use a factitious headache to obtain recreational narcotics or to feed their addiction or to obtain drugs to sell. Unfortunately, our national hysteria about drug abuse has resulted in migraine sufferers being suspected of illicit drug use at almost every encounter. There is a difference between addiction and habituation for medical reasons, such as chronic pain. Unfortuantely, narcotics aren't the answer either. What rational person would choose to be addicted to drugs that cause constipation, confusion, sweats, and the necessity of interacting with suspicious doctors on a regular basis?

Another problem: patients often feel blamed for their headaches. You take too many pain medications (narcotic or otherwise). You don't take enough prophylactic medication (not acknowledging unpleasant or even dangerous side effects). Use caffeine (DHE/Imitrex) for your headache. You still get headaches? Must be rebound. You eat the wrong foods (the list of foods to avoid leaves an option of rice and water). To avoid headaches, don't exercise (but stay in shape to avoid headaches), don't fly in airplanes, worry, get excited, get stressed, sleep too much, sleep too little. Be happy!

It is my impression from talking with people who have migraines that, while a few do have medication-induced rebound headaches, the more common path is relentless increase in the frequency of headaches not related to medication at all but requiring more frequent use of medications for treatment.Certainly it makes sense to avoid known triggers. But migraines are hereditary and we don't know how to cure them. Not your fault if you have bad genes (or whatever else causes migraines).

Still, it's difficult for physicians to admit that we dont' have the answers. And we have to deal with agencies that probe our practices for evidence of prescribing too many narcotics. Insurance companies put pressure on physicians to not prescribe expensive medications, such as Imitrex. And patients sometimes become angry when we can't fix a problem.

I have a few questions and comments:

Has anyone had a withdrawal reaction after frequent use of Imitrex?
Has anyone had a withdrawal reaction after frequent use of Imitrex?
Has anyone ever tried nitrous oxide for relief of a migraine (possibly in combination with Imitrex)
Has anyone who has detoxed from narcotics then tried Stadol? Did you become addicted? Did it work?
What other medications has anyone used to potentiate DHE or Imitrex? What do you use for a "knock-out" medication when all else fails?
Imitrex is much less expensive in Canada. The oral pills, which cost about $14 here for 50 mg come in a 100 mg strength in Canada for around $11 US.
DHE is available in oral and sublingual form in France, Italy, Spain, and Germany. There is an oral sustained release form (5 mg gelules) and a sublingual 5 mg immediate release form. It seems to work pretty well and doesn't seem to produce as much nausea as the IM DHE. Not to mention that it doesn't hurt! They also have a nasal spray (which stings). You would need friends in France. Sometimes a pharmacy there will fill a prescription from your physician here.

Keep up the good work!

---krauss.r@ghc.org

I grew up on Galveston Island--a rambunctious tomboy--and never had a headache until I was in my late 20s. At that time I began to experience mild to moderate "PMS" related headaches. Fortunately, these headaches were not debilitating and medication (including aspirin) was not necessary. I went on to have two children, then disaster struck: I was diagnosed with an autoimmune disease of the liver. By 1992 the liver disease had devastated my liver and I underwent an organ transplant. The transplant was successful, but a year and 1/2 after this eventful surgery, I was rear-ended while sitting at a red light. Withing three weeks of the accident I experienced my very first migrane (I was 43 years old at the time--a little old it seems for onset of migranes). The pain was so blinding and the vomiting so persistant, that I had to be hospitalized for 5 days. During that time I was subjected to multiple tests (MRI, CT scan, lumbar puncture, etc.). To prevent dehydration I had to be hooked up to an IV for days. The physicians were kind enough to administer demerol and an anti-nausea medicine (both of which put me in a blissful stuper). When I was released from the hospital, the neurologist who was assigned to follow me, diagnosed my headache as a "migrane-like headache". Over the next three months I had small headaches which didn't require intervention. Suddenly, another monster headache! Another hospitalization-

Since that time I have suffered with these debilitating headaches several times a year. Sometimes I will have three headaches a month, but more often, I will have mild headaches for the duration of a month (or sometimes two and three months), the wham...the BIG ONE.

Here are my onset symptoms:

persistant little throbbing pain on left side of head between temple and left eye (later growes to pulsating pain of great magnitude which makes me feel as though my head will explode)
nausea (followed later by frequent vomiting) * watering eyes
inability to think and communicate clearly * fluid retention (especially in abdomen)

These headaches are not preceded by an aura. Some of my physicians (and I have a lot of them since the transplant!) believe that the headaches were brought on by the accident (which injured my neck). Others think that the headaches are a result of the immunosuppressant medicine (cyclosporin) I take to prevent rejection of my donated liver.

In doing research on migranes, I have found that a significant number of transplant patients do suffer from what is called "cyclosporin migranes". The confusing thing is that these migranes present within the 1st year after transplantation. I have concluded that the cyclosporin does predispose some people to migranes, but the neck injury from the accident seemed to act as the trigger in my case.

Unfortunately, I am not a good candidate for Imetrex (sp?) because my blood pressure has been elevated since transplantation (that is a side effect of the cyclosporin). Although I take mecidine to control my blood pressure, it tends to sky-rocket with the onset of a migrane. I am told that the increase pressure is a responce to pain.

My good news is, I am now four years out of transplantation and my liver continues to function beautifully. I am getting to do all the things I thought I might never live to do, like see my oldest son graduate from high school last May. If I could get these migranes under control...well, maybe that is too much to ask from someone who has already been twiced blessed.

I would be interested in communicating with other people who have accident related migranes or "cyclosporin migranes". Thanks for letting me share my story.

---Detna K. Kacher kacher@ix.netcom.com

Hello, ronda! Wow, it was wonderful finding your Web Page on the internet. I am also a migraine sufferer. It was a relief to read everyone's stories and experiences!

It shows me that I am not alone in the battle against MIGRAINES. I was diagnosed with having migraines in July 1995. Prior to my diagnosis I visited so many doctors, no one could tell me what was wrong. It was quite frustrating when the medical profession can't assist you in telling you what is happening to you. For me it all started in October of 1994. I had daily headaches accompanied with dizziness and a nauseating feeling. I must have tried every pain reliever on the market, but quickly realized nothing was working for me. I knew taking daily pain relievers was not healthy for me, so I took two to three tylenols every few days, then 2-3 advils the next few days, and this continued until December. This is when I decided to take a month off work and go on a vacation and simply just relax. I returned home in January, went back to work in mid-January, but the vacation did not relieve my daily throbbing headaches.

So, I took a leave of absences from my job, indefinitely. I was in no condition to work at all. The dizziness and headaches were intolerable. During my "time-off", I had CAT scans, eye exams, physicals, ear tests, the whole bit. In any case, I thought the headaches would eventually disappear on their own. So, I went back to work. The second day back to work I was promoted. So, I knew I can't miss too many days in my new position. Finally, one day, the headache was extremely bad, it was impossible for me to even attempt to pull myself out of bed to go to work. Although I had achieved this in the past, but this time it was different. Then I fainted.

Quickly after this incident, I finally found a doctor who understood my condition and immediately diagnosed my headaches as migraines. What a relief. Similarly like most of you, I tried anti-depressants, beta blockers, etc. A few worked, but many didn't. So, finally, I was prescribed Imitrex. This is just great, when it works, that is. There are times when Imitrex does not relieve my headaches. I read almost every book on Migraine as well. I am still trying to cope and understand the phenomenon of Migraines. Therefore, how can I even expect friends, relatives, coworkers to understand!? Prior to my migraines, I lived an extremely active life, enjoyed everything and everyone. And I am in my early 20's.

January of this year (1996), I quit my job because migraines really destroyed my social life, my career life and everything else. And now, I just started another new job in the summer, fortunately to Imitrex, I have not missed as many days as my previous job.

So, if anyone out there can support me in coping with migraines, I sure could use the help. You can email at: masaki_hashimoto@bc.sympatico.ca

Thank you!

---Kana

I consider myself an "expert" on migraines. I have had them for about 7 years and they are severe. I have pretty much resigned myself to the fact that I will suffer from these horrible headaches until I die or my body changes in such a way to stop them. I have tried every preventitive, abortive, and pain-relieving medication there is, all to no avail (except the imitrex shot which might work for 4-6 hours). My reason for writing is to warn migraine sufferers about butalbital i.e. fiorinal, fiorocet, and phrenelin. These medications just make things worse. Thy are so easy to become addicted to (physically and pyschologically). My addiction has almost ruined my life, so I am now labeled an addict, I can no longer take the medication that worked, and I still have horrible migraines. Great, huh?

---KAMASALA@aol.com