Journal of Migraine Sufferers
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:

  1. Has anyone had a withdrawal reaction after frequent use of Imitrex?
  2. Has anyone had a withdrawal reaction after frequent use of Imitrex?
  3. Has anyone ever tried nitrous oxide for relief of a migraine (possibly in combination with Imitrex)
  4. Has anyone who has detoxed from narcotics then tried Stadol? Did you become addicted? Did it work?
  5. What other medications has anyone used to potentiate DHE or Imitrex? What do you use for a "knock-out" medication when all else fails?
  6. 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.
  7. 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:

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

i am so glad i found you! i also suffer from horrible migraines that last usually three full days!!! i've been having them for quite some time now and i now have been able to somewhat control them. i used to get them twice a week but now i've controlled them with inderal, exercise and proper eating but i still get one or two a month usually around my period.

i hope you guys have some help for me out there!!!! i don't use any aspirin or anything 'cause they don't work so i usually take the !@#$%^&*()_+ pain!!! FOR THREE DAYS!!!

hope to hear from you soon,

---j jax00@ix.netcom.com

Ronda, your column is a lifesaver. I have had common migraines for thirty years. Get worse as I get older. Thought menopause would stop them. No way. Took all the typical medications with no real relief. Now I use Imitrex tablets (hate the injection) with firoinol. Up to 100 fiorinal per month. This is not good. I moved and also got new coverage. I am using a new doctor who is telling me that I am addicted. How can that be addicted if I can go without it for a day or two, and if I am lucky, even three days, if I do not have a headache??? I know my prior doctor was quite liberal and suggested I take something immediately before the headache sets in. I went from 30 to 50 to 100 per month. I lost a career which was very lucrative and worked very hard to develop, and now I am a computer operator and do telephone service. It is torture to work some days, but I never let my headaches allow me to miss a day of work or else I would be in trouble psychologically. I have daily headaches most of the time, but am being told they are mostly rebound. So....what do you do???? If anyone knows, maybe some meds out there, I would appreciate your help. Somehow, although I like my new doctor and he does "listen" I can tell he does not quite "get it."

However, I know I am taking too may fiorinol and I am trying to cut down. Believe it or not, other than the above, I am in good physical condition. Very active when I fell good, and have kept myself in good shape. Just want to be happy. HELP????

---BADO89@aol.com

Migraine Headaches run in both sides of my family, my grandmother on my dad's side had headaches until she went through menopause. My mother, brother, sister and myself all suffer with headaches. I am currently taking imitrex and tylenon 3 for pain relief. I have had side effects from the imitrex and would like to know if anyone else has had the same symptoms. When I get a migraine I'll take an imitrex and the pain will usually go away, however when I wake up the next morning the headache will be back, this may go on for 3 or 4 days. When I take the medication I often feel disoriented, a 'fuzzy' brain (eg. like I have had a couple of drinks and everything is out of focus.) My eyes feel puffy and the area under my eyes is tender. I often wonder if this medication also effects your short term memory, often simple things that I do everyday take a minute to register. Please tell me I'm not crazy.

---Deb dgraves@city.nanaimo.bc.ca

Hi Ronda. Wonderful page and a nice place to visit when you feel so alone. I have suffered migraines all my life (I am 39 now). When I was 2 years old I was in a bad car accident and fractured my skull in seven places. I guess that was the starting point. I too have been treated like a "drugie" through the years. I am a Judicial Law Clerk and raise and train horses. I live on a large ranch in Oregon. I tell you this so you don't think I am living on the streets, stealing for drugs since that is how I am treated half the time my doctors and nurses.

I have tried most medications. The ones that have worked the best for me are Fiorinal #3 (pretty strong stuff), Ultram (new stuff) and a demerol shot as last resort. The imitrex makes me feel like I am going to explode and sometimes works, sometimes doesn't. It is very difficult for me to have a doctor or nurse, who do not personnaly themselves suffer from migraines, talk to me in a demeaning tone about, "now what you need to do is quit depending on those pills...what you need to do is find a hobby...what you need to do is try over the counter tylenol...get the extra strength!" Oh please I think as they ramble on. I try not to go to the doctor or emergency room because the whole fiasco of telling the doctor what is wrong, listening to the lecture and then waiting for them to decide what they are and are not going to do is almost worse than the headache! I understand the professions concern about addiction, but when you are suffering you just can't worry about that, you just want it to stop! I have a great family who understands and a husband who sticks up for me. Recently I was given the drug ULTRAM then abruptly the doctor decided I shouldn't take it because it may cause weightloss (I am little). I couldn't believe it! Here was something that was finally helping me and instead of taking it away because it was bad for me, he thought maybe it would cause me to lose weight, etc. Well, I set up a conference call with him, my main doctor. I did this when I wasn't suffering from a headache so I could speak with them without being sick.

We discussed everything and I told them how I felt. It really helped us all understand my migraine illness and hopefully has made them more sensitive to those who truly DO suffer. Who knows....but hang in there everyone.....

---Susie flennike@empnet.com

I have suffered from "classic migraine syndrome" since I was about 12, 20 years ago. I am fortunate that my attacks are not frequent, rarely occurring more that about once per year. My headaches usually last four to six hours and I vomit about every half hour for the first two to three hours. I have had a number of different pain relievers prescribed, but because my migraines are so infrequent I rarely have any medications with me when the attacks come, and I seem to have a lot of trouble getting urgent care facility doctors to take me seriously when the attacks do come. Those are my gripes - but I also have a suggestion I would like to offer:

I have heard that increased physical activity can aggrivate the condition. However, I believe that consistent regular physical activity can help avoid migraines. About six years ago I started an exercise program - nothing too intense, just aerobics and light weight training three or four times a week, no more than a half hour to an hour each time - and I noticed that the migraines stopped coming. Completely. I thought maybe I was through with them. Then about sixteen months ago I had a baby. I kept up my exercise program through my pregnancy, but after my daughter was born I suddenly had a lot less time on my hands and I stopped exercising. Suddenly the migraines are back. Two in the last six weeks in fact. I'm working now to get back into an exercise routine and I'm hopeful that I will again be migraine free. I hope that someone else will find this helpful.

---Casademas@aol.com

I just finished reading several case histories on migraines. My son, who is 12, is at Walter Reed Hospital in Washington D.C. with his father. He started have nausea and headaches in February of this year. After weeks of tests, CAT scans of head and stomach, MRI, various trials on medications we were just lost as to what could be his problem. After all tests came back normal, they started to think this was psycological. This really angered me and my husband since we knew our son better than anyone. Jimmy (my son) was hospitalized in Denver Childrens with more tests coming back negative. He was seen be a GI specialist and Neurologist. Jimmy not only was having severe headaches but was vomiting from 4 to 11 times a day. He was out of school and just could not function properly for months. I requested a second opinion from another neurologist. The first test they ran was an EEG. They told me that Jimmy's EEG came back positive and was diagnoised with a rare form of epilepsy. BENIGN BILATERAL OCCIPITAL EPILEPSY. He was put on Depakote and told it could take months to work. Well we went through months of waiting (the medicine was started on 4/1/96). Finally on July 3, Jimmy had his first day of not vomiting. That continued until the middle of September. When the headaches and vomiting returned, we immediately had his Depakote level checked. It was very low. His neurologist increased his medication over the course of two weeks (meantime he is still our of school).

The headaches had worsened (24 hours of dull aches and several times a day of severe sharp pains) and the vomiting continued 2-4 times a day. Jimmy's pediatrician spoke with another neurologist at Walter Reed Hospital (the best military hospital in the world) and he wanted to see Jimmy. So off my husband and son went. Now they are leading more towards Migraines. They are going to do another EEG and compare it with the original EEG done in April.

My son has been seeing a bio-feedback doctor on a weekly basis and this does help him. He thinks the world of this Doctor. I suffer from Migraines as well and thought that it was not a continuous problem. That it came and went. My son has no refief from the headaches and vomiting is a daily thing.

They have started him on a beta-blocker for the headaches and have now started him on Zofran for the vomiting.

I would love to hear from anyone who's child or themselves have similar symptons. Having this happen to your child makes you feel so defenseless. He is a brilliant child who has exceeded in school and sports. He is a well rounded child.

---Cleooko@aol.com

This is my third attempt to write this case history tonight. It keeps disappearing mid-thought (hope this is not too repetitive!) I'm not sure where messages go when they disappear, but . . . After having migraines for the last thirty two or more years, I'm definitely an "expert" about some things having to do with migraines. I've taken prescription drugs for the fifteen years or so, and have seen countless doctors and specialists. I have taken many abortive medications in all strengths and forms, and have tried beta blockers, callcium blockers, anti - seizure medication, and antidepressants as preventatives. I have had some short term success with some things, no success with others (like the beta and channel blockers), but no long term success. Imitrex was a wonderful addition to the drugs available for this condition, but I now suffer from very high blood pressure, and so am unable to use it safely. At this time, the only pain relief comes fron Stadol NS. I've heard that it is not good to use, but when there is nothing else that works, what can you do?

At this time in my life, I have at least one severe migraine per day. Some last only a few hours, others last all day (and then some). The pain at times is so overwhelming, I don't know what to do with myself. I have tried self hypnosis and biofeedback without success. Exercise only makes the pounding worse. My senses are all out of whack during an attack; I'm bothered by lights, sounds, and smells. Flashing lights (strobe type effect) can set off an attack any time. Even the beautiful sunlight filtering through the leaves of the trees as you ride along in the car can trigger an attack. I have identified certain foods which may act as a trigger, such as too much orange juice, raw onions, or excessive chocolate. Strong perfumes or other odors also have triggered episodes. The local hospital treats migraine sufferers as nuisancesand use demerol for the pain. Demoral does nothing to stop the pain - it only numbs the rest of you for awhile. Personally, I am hyper for days after such injections. A hospital about an hour from here will use toradol and decadron, usually more effective, but spending hours in an emergency room on a regular basis is no way to live.

I have been hospitalized four different times to brak particulary severe cycles of migraines. I used to go to the New England Center for Headache Treatment in Connecticut and had some success there. However, the distance is now too great, my insurance will not pay even a portion of their charges, and the doctor I saw egularly is no longer there. I have been considering contacting Montefiore Hospital in NYC or a headace center in the Philadelphia area for help. Is anyone familiar with either place? I am desparate for help.

In addition to the migraines, I suffer from a connective tissue disease and chronic fatigue syndrom. With all the physical problems, I have a problem with depression as well. Some days are very difficult to face, knowing that for most of the day, I will probably be in pain. My family has been wonderful and very supportive, but I'm tired of my physical state controlling our lives (no pun intended!). Please write if you are familiar with either of the two headache centers I mentioned or if you have some suggestions for something I haven't tried. I look forward to connecting with others who understand the pain that defies description. My e-mail address is GGIB2757@WARWICK.NET.

PS My name is Bev Giblin and I teach first grade.

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