Journal of Migraine Sufferers

Hello Ronda,

I am sitting at my computer in a darkened room at 1:30 in the morning with a very tolerable throbbing in my head. The lessor headache which is the "hangover" that remains after the migraine monster is back asleep. I am 46 and have had migraines for 28 years now.

The first migraines began shortly after a skull fracture incident at work at age 18. This may have "set the stage" but I was also living in a very severe alcoholic household and I was taking street drugs to help me escape my father's alcoholic abuse. The migraines came back while I was detoxing myself from my drug use.

The migraines went away for four years until my left arm was crushed in an industrial accident at age 22 (different employer). They came back during a paperwork war with Workman's Comp over missing checks that they said I cashed and I know that I didn't.

The migraines went away again but returned when my wife's alcoholism problem entered its late stages. (She now has 14 years sobriety). I had 11 years of relief!

No more headaches until 1993 in the aftermath of my mother's passing. I was her home care contact for Hospice and did not get the headaches until after her funeral and estate (handled by me alone) was brought to closure. It is now 1997 and I began my latest migraine adventure shortly after the ending of a 13 week labor dispute in which we lost over $10,000 dollars in wages and many other contractual gains made over the years.

Like most people who write you, I have taken every medication possible and none helped for very long. Imitrix worked wonders during the last set of migraines but I usually wait so long to go to the DR. that the cycle is probably on the downside anyway. I am about to "give in" and make another appointment with the neurologist who helped me the last time.

My migraines began in 1970 as the type which begin with an aura over the left temple. They now begin at the sinus area over the left eye. All other symptoms remain the same. Dizziness, stomach upset, but no vomiting this time. Scalp massage seems to help if it is through enough. I know that stress is a major trigger for me because I do tend to push myself too hard and take on more than I should.

The strange thing about this cycle of headaches is that I only get them while I am sleeping. If I am awake and moving I may get a dull throbbing (like I have now and which I ignore) but I will probably get a migraine within 45 minutes of falling asleep.

Do migraine patterns change over the years? Or could this be something else?

Thanks for listening - you can include this e-mail adress Onpar316a@aol.com

---Jerry


Date: Thu, 25 Dec 1997 21:33:37 -0500 Dear Ronda's Home page,

I've been reading everyones stories for hours. I have suffered from headaches/migraines for 8 years. It's so sad that we have to live this way. I've been to several doc. and no luck yet . I've been on lots of medications. Narcotics seem to work the best, BUT doc. won't prescribe them because they think we are "druggies". NOT!!!!! We only want relief. Living with daily severe pain is no life at all. I'm 25, married, and have a little girl. It's so hard being a good wife and mother when I suffer the way I do. I would love to hear from others that are in the same boat as I am. E-mail me at dtarter@kih.net or fax me at(606) 787-6779 Attention: Jennifer!! I'm trying a new doctor the middle of Jan. He's suppose to be really good. Wish me luck. I just want my life back and be happy and at least (semi) pain free. Best wishes to all of you that suffer like me.

---Jennifer T


MY NAME IS TRACY VANCE, I AM A SENIOR IN HIGH SCHOOL. I STARTED HAVING MIGRAINES WHEN I WAS ABOUT 13. THE FREQUENCY AND THE INTENSITY OF THE MIGRAINES HAVE MORE THAN TRIPLED, THUS, MY LIFE HAS CHANGED DRAMATICALLY. WHEN THE HEADACHES STARTED, I WENT TO MY FAMILY PHYSICIAN. WE RAN TEST, HE GAVE ME PAIN PILLS, AND SENT ME ON MY MERRY WAY. YET, THE PILLS EFFECT WORE OFF, THEREFORE, HE INCREASED THE DOSEAGE. BY MY SOPHOMORE IN HIGH SCHOOL I WAS ON 13 TYPES OF MEDICATIONS EITHER DECREASING MY MIGRAINES OR EASING MY PAIN. TWO MEDICINES IN FACT HAD CAUSED ME TO BECOME A MANIC DEPRESSIVE AND GAIN WEIGHT. I USED TO BE THIN, ACTIVE, HAPPY-NOW-I AM MISREABLE. I HAVE GAINED OVER 100 POUNDS IN 3 YEARS, MY MIGRAINES ARE STILL WITH ME, AND I TAKE MORE MEDICATIONS. I HAVE WENT TO SEVERAL PHYSICIANS AND THEY JUST GIVE ME MEDICINE. IN ADDITION TO THAT, I USED TO HAVE A 4.0 G.P.A., NOW IN MY SENIOR YEAR, IT HAS DROPPED TO A 2.01. BECAUSE OF MY GEADACHES AND DOCTORS APPOINTMENTS I HAD TO MISS SEVERAL DAYS IN SCHOOL. WHAT HURTS THE MOST IS THE FACT THAT I CAN'T GET ACCEPTED TO ANY ACCREDITED COLLEGE BECAUSE OF MY GRADES. I FEEL AS IF I HAVE BEEN ROBBED OF MY ONCE PROMISING FUTURE, WHICH WAS TO BECOME A FORENSIC PATHOLOGIST. I HAVE NO SOCIAL LIFE NOW, I AM ALWAYS SAD, AND IN FACT I HAVE TRIED TO COMITT SUICIDE. MY PAIN IN MY HEAD CAUSES ME TO WEAR SUNGLASSES ALL THE TIME, STAY INSIDE, NOT LISTEN TO LOUD MUSIC, NOT GO TO THE MOVIES OR DATES, WEAR PERFUME, AND IT CAUSES ME TO QUIT READING AS OFTEN AS I LIKE TO. I JUST WANT PEOPLE TO KNOW THAT THESE THINGS HAPPEN TO PEOPLE LIKE ME WHO ONCE HAD IT ALL. NOW, I AM TRYING TO PUT THE PIECES BACK TO MY SHATTERED LIFE. I GO TO A DIET DOCTOR AND I HAVE LOST SOME WEIGHT, I BELIVE MY DEPRESSION IS GETTING BETTER, AND I MYSELF AND DECREASING MY MIGRAINES MY STOPPING THE PAIN BEFORE IT STOPS. I TAKE SEVERAL SHOTS IN ONE DAY, I TRY NOT TO GET STRESSED, AND PRAY TO GOD THE PAIN WILL CEASE. I ONLY HOPE THAT I CAN ONE DAY HAVE A NORMAL LIFE. AND TO THINK, I AM ONLY 17. THANK-YOU.

---tracy@itiseasy.com


I've had chronic idiopathic thrombocytopenia purpura (ITP) for the past 15 years, in conjunction with chronic migraine. Many times, an interruption in remission (bruising, bleeding, and dangerously low platelet count) of my ITP is preceded by a week of terrible migraines. For years I have tried to tell my doctors that the ITP and the migraines were somehow connected, but they denied and continue to deny any connection. I had even tried to tell them that the frequency of my migraines is reduced when I am taking steroids for the ITP, but they ignored that. Finally, vindication! Apparently, there are others out there who have platelet problems related to migraine. I feel better knowing I'm not alone.

---mfarmst@nppd.com


Great site!!

I'm a 31 year old female. My migraines started in November of 1990. I can remember the day exactly. My history is similar to everyone else's as far as the drugs tried, not much works, etc.

I have a great Neurologist - I'm happy to say. It took some time to find him but he is very patient and willing to try different things.

I was on amitryptiline (sp?) for several months and although it worked through increased dosage, I gained 25 pounds in about 3-4 months. Then it stopped working and we could not increase the dosage any more.

Up until recently, the only thing that helped the really BAD headaches was getting a shot of demerol. Back in September 1997, the demerol didn't work and the ER doctor tried a shot of STADOL. It worked, so I went to my Neurologist and he prescribed the Stadol NS. This is where my questions come in.

I just turned on the TV and caught the tail end of Inside Edition on a story about Stadol NS and someone's death. (directly or indirectly related I don't know). I only saw 1 story here of anyone using it. It works for me but I'm a bit scared now about what is going on.

Any feedback would be appreciated.

Here's wishing you all a great "headache free" holiday!!!!

---Jennifer.Rowe@mci.com


I was pleasantly surprised to stumble across this website! I have read a number of the letters, and decided I should share my experiences as well.

I find it very consoling to know that there are others out there who understand the life of a migraine sufferer. I have countless friends, family members, and co-workers who say, "Oh, that's too bad," when I tell them I am having a migraine, but I know none of them have a clue as to just how debilitating it really is. I can imagine their thoughts as they turn with a silent chuckle, "I can't believe she thinks she can't function just because she has a little pain in her head." It is very disheartening.

The ironic thing is, I have a high tolerance for pain, and it isn't the pain itself that renders me dysfunctional. It is all the other effects that come along. At first, sometimes even before my head hurts, I feel a serious lack of mental focus. Then, as the pain increases, I have visual disturbances which look like big white fluffy clouds right in front of my eyes so that I cannot see. These usually go away before too long. As the migraine progresses, I start getting very nauseated, and I feel like a rubber chicken. Before I started taking Imitrex, I thought that the shakiness and nausea were from the pain medications I took. I now know, however, that it is the migraine, because I don't take precription pain med's any longer.

For a number of years if I got a headache at work I would try to outlast the headache as long as I could to get just a little more done. However, I have had too many near misses in the car, so I go home now. That is what's really frustrating, it's not just about my head hurting - I literally cannot function! I get shaky and weak, and cannot see or concentrate well enough to drive my car. I HAVE to go home before I get so sick that someone has to come get me. (Which actually has happened several times.) So few people seem to be able to understand this. Because I'm not missing a limb or bleeding profusely, I couldn't possibly be in THAT bad of shape.

I have suffered migraines for as long as I can remember. I used to come home from first grade with a "sick" headache, and I can remember having them even before I was in school. I am now 28.

Fortunately, the last few years have brought an improvement in my quality of life. I started taking Imitrex injections about four years ago. I tried the tablets, but my digestive system goes in neutral when I get a migraine, so it doesn't matter what I swallow. The injections will usually give me some relief within 30-45 minutes. It is very important, however, that I stay laid down for about 1.5 hours, because if I get up too soon, the headache comes right back. I urge those of you who've tried the injections and felt that they didn't work to try this. Take one and just stay in bed and lie very still for a while, even though you may feel like the migraine is gone.

I have also recently tried the Imitrex nasal spray. It works, but it takes longer than the injections. I have used it twice now and the first time it took almost two hours for my symptons to go away. The second time it was a little over an hour. I ususally feel at least some relief from the injections within 10-15 minutes. My quality of life has improved dramatically since I've started taking Imitrex. Before, I took Excedrin every day, three at a time, about twelve to fifteen per day to try to keep from getting a migraine. I would wake up every morning with a headache. Some days I would get lucky, and the Excedrin would work, but often I would get a migraine anyway. If I felt the tiniest twinge in my head, I would run and take more Excedrin. When I got a migraine, I would take prescription pain killers.

What helped bring about the change was my stomach problems. One day my stomache just hurt so bad I couldn't function. I went to the doctor, who ordered an endoscopic exam. According to the gastroenterologist, the only person he had ever seen with a stomache in worse shape than mine was a sixty some year old alcoholic smoker (I was 25). I still have to go in to have biopsies done periodically because there was so much scarring in my stomache that I am considered a high risk for stomache cancer. The ironic thing is, those pain medications I took never really worked. They dulled the pain a little, but they never made the migraines go away, yet I kept taking them in a desperate attempt to find some relief

After my ulcers were diagnosed, my only options were to take Tylenol or the Imitrex to treat my migraines. The Imitrex had been already been prescribed for me, but I would wait until I was falling down sick to take them because I hating giving myself the injections. Before long, I found that I wasn;t waking every single day with a headache. I now blame the Excedrin (which contains caffeine.) I think what I was getting might be what is called rebound headaches.

I still get headaches about twice a week, but I now take Tylenol first. (catching it early is vital) If that doesn't work, I just take an injection or nasal spray.

I have identified some of my triggers, but many are still somewhat a mystery. The way I think of it is, there is a point system. When I go over a certain number of points I am going to get a migraine. I get some points for not eating breakfast, not eating red meat in any given day, eating foods with MSG or Nitrates, eating certain types of chocolate, eating too much sugar or eating sugar before protein, changing my sleep pattern, etc.. I get more points for getting too hot, too much physical exertion, sleeping with too many pillows or on the couch with my neck kinked, or being at the wrong time of my monthly cycle. The kickers, which are guaranteed to put me over the top are alcohol, semi-sweet chocolate, Oreo cookies, etc.. Most of the items in the first two groups taken one at a time will not cause a migraine. This has made the trigger(s) very hard to pinpoint. I have finally decided it works on this point system. If I eat too much suger one day AND have some MSG the next, I will get in trouble. Or if I eat any of the first two groups at the wrong time of the month, I run a high risk of getting sick. I get a couple of points for each no no, and when too many add up, its headache time! My body is willing to tolerate a certain amount of "abuse" and then it is going to strike back.

Well, I have rambled on for quite some time now, and wonder if this will all fit? I would love to hear from anyone who is interested in sharing and would be happy to answer anyone who has questions about how I've managed to get a little bit ahead of the migraine monster.

Also, I am in college and am considering writing a term paper on migraines. I would like to open some people's eyes about what they really are and how much they really affect our society and the country's productivity - which are reasons why insurance companies should feel social pressures to cover migraine medications.

Any one have ideas or insights along that line to contribute?

---Linda.Thrash@us.coopers.com


Hi Ronda,

I've been experiencing migraine and tension headaches since I'm 9 years old. I'm now 40, still having migraines, and am going through early menopause. I was told that once I go through menopause the migraines will ease up. One can only hope.

What I would like to know is how to deal with a relative telling me I have a drug abuse problem. Since I moved close to my family (I used to live on the other side of the country), this one family member tells me that I'm in denial about my problem and I should no longer take any medication since I most likely don't have migraines, never did, and obviously just go to the doctor for the drugs to get high. My response was, "I can only hope you never suffer the pain I've suffered these past 30 years." I love this family member, and don't want to alienate her.

I take Imitrex (which makes my face turn bright red and causes some constriction in my throat, but it's better than a migraine) and I take fioricet for the tension headaches.

I get migraines about 3-4 times a month, and tension headaches almost daily.

I would appreciate any advice or even similar stories from anyone experiencing problems with family. It's wonderful knowing I'm not alone in my suffering (misery does love company) wish you all a healthy and happy pain-free holiday.

---mecole@dttus.com


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