---Leeanna Miller Leeanna@Juno.Com
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:
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:
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 firstname.lastname@example.org
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: email@example.com
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,
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????
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.....
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.
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.
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.