I was really glad that I found your site, it is really comforting to be able to see what other people are going through and knowing that you are not alone. I am 28 and have been suffering from migranes since I was 4 years old. The first migrane that I ever had was in the summer and I was playing outside in the hot sun, one minute I was playing and having fun the next minute I was lying on the ground and screaming in pain. First I was told that I was suffering from sun stroke. After that day, I only got mayby 6 or 7 in a year and I was told that I would outgrow my migraines. Well that day has not yet come and for the last three years my migranes have become more frequent, now I have daily headaches and my migraines no longer last for only 1 day. Until about 7 years ago I would suffer through my migranes by staying in a dark room(taping my pull down shade to the wall to make sure no light would get in), yelling at anyone talking or walking in the house always unable to sleep due to the pain.
Then I heard about these demerol shots I could get to help me fall asleep. This was the start of an endless struggle to find a medication that would work for me. The medications that I would try would work only once or twice if I was lucky and never again. Then I found Stadol. The Stadol and gravol sometimes helps me to get through my day at work. Usually I end up having to get a demerol shot to actually get rid of it after about the third or fourth day. I find that my life is being taken over with the migraines. I am a day care supervisor and have a very understanding boss, so I am able to leave the centre when the noise level at work is too much to handle. With the migraines so frequent now I am scared that my understanding boss will not be so understanding for very much longer. I find that I am controlling my treatments by asking for certain medications and for referrals to different things, but I do this hesitantly. After talking with other migraineurs I find that it is hopeless. I know people that have gone to migrane clinics, neurologists, herbalists, natural paths, etc and they all come back saying that it is hormonal. Usually I, my husband, or close friends can predict when I will have a mirgraine attack come on by the time of the month and the weather. My husband gets scared of the medications that I take to control my migraines and he tries to get me to go through it with Tylenol #3, which is hopeless. He makes me feel guilty for taking the Stadol or Demerol. We just started talking about trying to have children and I am scared to death about knowing what I will take if I have an attack and am pregnant. If anyone out there knows of a medication that is better than Tylenol #3 and safe to take during pregnancy please let me know. You can email me at hr@trow.com.
My mother suffers from cluster/migraine headaches. She has for many years, from age 30 to now 67. This is a common thread in the journal entries.
The cluster headaches I have are often triggered by post-stress conditions. The completion of exams, the finding of a job after a layoff, the healthy birth of a child after a difficult pregnancy are all examples of this.
Finding competent and sympathetic medical help is very difficult. My suggestion is to forget the family doctor and head for the neurologist, and to keep shopping until you find a competent one. I wasted many years being experimented on by my well-meaning family physician. Men have particular problems with migraine/cluster because we are not supposed to have them, according to popular opinion. Readers of your page know this to be a fallacy. More public knowledge is needed to educate the populace about migraine/cluster and the devastating effects from it.
Imitrex is not the wonder drug we all waited for. Most of us cannot take it indefinitely, and many of us suffer bounce-back effects and disturbing blood pressure problems. However, I still carry the needle with me always as it is the key to getting home from wherever that attack might occur.
The squeaky wheel gets the grease. We need to unite and become a political force to make people aware of our problems and put pressure on the government to free up research money for our cause. The internet may be the vehicle we need, and pages like this the gathering place for fellow sufferers.
I have been suffering from severe muscle related headaches. They are not classed as migraines and drugs do not help, massage seems to help but is very, very expensive. The Muscles im my neck go into spasm usually when the barometer changes rapidly (like today, the temperature increase 15 degrees in a couple of hours). The muscles then pinch the main nerve that goes under the scalp and usually my vision blurs and/or I can't speak properly. The headaches usually last from 2 hours to 5 days, I can never tell. I am a professional musician and usually have to "work" whether I have a headache or not (the show must go on). Anyone out there with a similar condition, I know I can't be the only one. Contact me at: jennifer@netinc.ca
---Jen
I don't really know what catagory of headache I suffer from but thought your page would be a good place to start. I have been suffering from a constant low grade headache for over a year now. It's a band of pressure that wraps around my forehead from temple to temple. It is almost always there. I've seen neurologists that have prescribed a ton of meds, which haven't worked. Darvon has been very affective but I haven't been successful in finding a doctor who will prescibe as much as I need. These doctors are so damned affraid of getting me addicted that they would rather see me live in pain. At times I think I would rather have a good strong migraine once a week and be done with it for a few days rather than living with a constant pain that is close to driving me nuts. After reading many of the letters people have sent you I'm backing off on that wish. I would be interested to hear from anyone who suffers from a similar headache. Also I would be greatfull if someone could refer me to a San Francisco Bay Area doctor who isn't such a weenee about prescibing opioids. I can be reached at coopertl@ix.netcom.com. Best of luck to all you migraine sufferers!
