Mine is unique because of the far reaching damages I have incurred by the medical community since this disease has intruded upon my life.
I am a 42 years old. I am married, and have 4 children. I now weigh 240 lbs on a 5'2 frame. A year ago April, after a 6 day long level 10+ headache I no longer wanted to live. However, I was frightened enough to know that, I was in serious trouble, and after 4 months of pleading and begging my therapist reluctantly admitted me into the hospital for severe depression.
12 years ago I was 105lbs. Extemely happy, athletic and vibrant. I modeled, and owned a successful business. Prior to 1985, I had like most people respected the medical profession and believed they were there to heal people with kindness, compassion and respect. In High School I lost many friends to drug over doses. My first husband's addiction to marijuana, destroyed my first marriage. Drugs and alcohol were destructive demons in my life. I counseled other people on drug abuse, and its effect on families.
Then my migraines began.
In 1984, I was misdiagnosed with a tumor. Imagine the fear and panic one feels given a death sentence. I never had headaches, and these new one came on sudden, were knifelike and debillitating. Like any patient with a 5 year life expectancy, I made lifetime choices. I sold my business, began the process of chemotherapy, and resigned myself to my new life. 8 long months of grief and saddness pursued. I became friends with a woman whose friend had this diagnosis, got a second opinion and found out that it wasn't cancer. Can you imagine my skepticism! I mean how can doctors miss that? She had this woman call me. She referred me to her doctor. Bald and very ill I took a bus to see him. You can probably guess the rest. Many batteries of test later, the results came in....Chronic Migaine, with bouts of severe Cluster Headache. I was elated...then in denial....and then my anger surfaced. HOW COULD THEY?
I got married. My husband and I began a Real Estate Development business. I handled all structual/interior design and sales and marketing. Because he was insured with Kaiser, I became a patient too.
The road to hell had only just begun.
While creating our business and buying up land, I was tossed from doctor to doctor within the HMO. Each doctor had his own protocol and own opinions about head pain. I have taken EVERY drug prescribed to prevent migraine. I was administed EVERY drug to relieve the pain. My life began to spiral down.
Finally a very well known physician, within Kaiser quipped one day, "You know its very difficult and frustrating to see a patient who just refuses to get well ! Obviously, nothing seems to be working, so here is the name of a man here who is willing to deal with you people !" This out of the mouth of a man who has been on talk shows and written books on healing !
I make an appointment to see him. After the exam, he pats my knee and smiles!
"You know I'm the only one here who isn't afraid to use narcotics ! But you have to agree to see me once a week, and abide by my rules as I see fit. You know, no one is going to help you but me !"
Each week I have a regular appointment. Whether I am sick or not. True to his word, if I need a demerol/vistaril injection it is there ...no problem. Ty3 or Vicodin...no problem. After a year of misery, cryptic insinuations and indifference, I felt I had come in from the storm. The frequency of the headaches didn't change. However, because I got the pain medicine as soon as it was needed, I started to get my life back. No longer would I writhe in agongy and tears for 2-3 days. It wasn't a life, but it was my life, and I learned how to carve out an acceptable existence within this context.
And then the cards starting arriving....and the looooooong heartfelt discussions, the pats on the knee, the "You look like you need a hug" behavior increased. And I started to become uncomfortable. I made up excuses to cancel my appointments; vomiting, car problems, etc..... When I would see him, he was remote and distant...and abrupt. If I needed a prescription, he would either not get back to me or lecture me about the dangers of narcotic addiction. Forget the pain shot entirely.
I went to another doctor when I had a really bad headache. He wanted to give me a demerol shot, but said, "I really sympathize with you, you look just miserable, but Dr. So and So placed a note here in your chart forbidding anyone else to prescribe any pain medicine except tylenol for you but him. I'm sorry" He got me.
Of course I was forced to go back to him. He seemed so f---king triumphant ! He knew that as long as that note was in my chart, I could never recieve any pain medicine at all from anyone but him. He had labeled me a drug addict within the system. He was the head of a department, was older, stereotypical distinquished looking, credentialed etc... I was a 31 year old platinum blonde female. I was outclassed, and ostracised. ....and I was in pain...lots of pain.
(I'm beginning to cry again as I type......I remember the anger very clearly...the injustice, the humiliation etc...it is a pain that somehow hides from me, yets jumps out and grabs me when I recall all of this)
The smiles eventually returned , the paternal pats on the knee. I was able to deflect and charm away a lot of his behavior. The prescription pad was brought out, and the note miraculously disappeared from my chart. I returned to school to get a third degree in design. My marriage which had been suffering because of my headaches was improving. The headaches were changing. They became more cluster like, less classic. I would suffer days...weeks in a cluster, and then be headache free for months. However, when the cluster came back, it destroyed me.
He would never acknowledge them as a cluster, even though I had all the classic symtoms. I never recieved oxygen, even though I requested it. It was business as usual, except it took an even more bizarre twist. He had determined that I was under enormous stress, and needed to immediately stop everything I was doing. He wanted me to quit school (too much stress), quit going out (too much stress) and..... quit having sex with my husband because....you guessed it....too much stress.
Well, I did quit school and going out, but I obviously didn't quit having sex with my husband. A few months went by. I told him I wasn't having sex, that I was just sitting on my couch (eating bon bons, of course!) leading my stress free life. Nothing too dramatic occurred. He went away for a month. During that month, I discovered I was pregnant. I was elated. Even though I'm a high risk pregnancy, I wanted a big family, and was willing to endure the restraints that were needed to bring it to term. Stupid me that I am, when he returned I told him and he was furious! "You lied to me! You were ha ving sex when I specifically advised you not to! Well young lady I hope you are willing to accept the actions for your behavior!" He walked out of the room.
One of the good things about being pregnant, was that my headaches were almost non-existant. In the 5th month of my pregnancy with my 3rd child, I started running a low grade fever...I was tired all the time, and was bruising all over. I went into St. Teresa Kaiser, and was seen by a female doctor. My chart was in another facility. She was very polite, treated me, and sent me home. One week later I was back, same symtoms. This time she had my chart in her hands. In front of my husband, she berated me about my "addiction"....even though I hadn't taken any pain medicine for 4.5 months. Here I was, very sick, black and blue all over....and she didn't even care.
Two weeks later, I went into pre-term labor and was hospitalized in Santa Clara Kaiser, the high risk facility, to stop the contractions. Inadvertantly the lab ran a platelet test. I had 18,000 patelet count. Normal is 150. An oncologist was added to my team of specialists. I was asked why I wasn't seen for my bruises or fever. I told them I was seen twice. The oncologist was very angry, telling me that they could have prevented the platelet loss if it was caught earlier. Instead I endured 3 bone marrow tests, and remained in the hospital for another month. All sourced back to the abusive medical care I recieved for my migraines. I never was so angry. I had endured very paiful invasive tests because of that doctor. I never went back to him.
My son was born. I breast fed him (med free) for 6 months. Once the breast feeding stopped within 1.5 months my headaches returned with a vengence. I wentback to Kaiser, and was referred to a new doctor. A new younger doctor came on staff. He was willing to start all over again. He was kind, and respectful. No longer was I patronized, or abused. I was treated as a partner in my care. On Super Bowl Sunday in 1989, I had a killer headache. My husband and daughter were in LA, and my best friend was hosting a superbowl party. I called the after hours clinic, and my new doctor told me to come in immediately. I drove myself to see him. He wanted to give me a demerol shot. I explained that I couldn't take it, because I didn't have a ride. He asked me when I could return, (it was 3ish) I told him around 6:30-7ish. He told me he would be gone, but gave me the injection slip. He told me to return no later than 7:00 with a ride. I took the slip, and barely drove home. AT 6:45 my girlfriend took me back to the clinic, wheeled me into the waiting room, and she put the injection slip in the tray. I was sitting with an ice pack in my hand, an emesis basin with vomit in my lap. My old doctors nurse stormed into the waiting room,...and screams at me, "Who do you think you are you,.... DRUG ADDICT!" and she threw the injection slip at my face....!!! I knocked over the pan, and my girlfriend started screaming at her.
A week later I got a phone call from the head of psychiatry. I was referred to them as a candidate for the alcohol and drug rehab clinic because of my sev ere drug addiction problem. I was stunned. She wouldn't tell us who reffered me. Weeks later, when my husband threatened to sue, we found out it was the old doctor i had been seeing. Since my last visit with him, he wrote a 3 page report about the problems he encountered with me.
His sickness and vengenance knew no bounds.
(burn story here)
(dr. pantiga here)
I have taken Midrin, Torodol, and presently Imitrex tablets. (My HMO will not allow me to use the injections). I feel that there has to be something out there that can help me more quickly relieve the pain. I am interested in finding out about any new medications or experience of others.
My name is Geneviève. I have had migraines for at least 5 years.
My doctors seem to think it is due to my neck. I am looking for fellow migraine sufferers who have the same neck problems.
I would like some advice on what you have done to help those migraines due to neck pain.
Has anyone tried acupuncture?
Thanks for your help,
---Gen marsgen@infobahnos.com
One day last November 96, my mom suggested that I quit drinking diet coke. I did, and guess what. My migraines stopped. I did experience a few more since them, which allowed me to identify additional triggers, such as hotdogs, aged cheese, wine, chocolate, and I noticed when I get overheated, and start sweating alot, I have to keep drinking water, or I'll get one. So you see, the aspartamine (Nutrasweet) was causing daily migraines and masking any additional triggers. Once I stopped drinking the diet coke, I was able to identify the other.
I'm happy to report, I don't suffer migraines any more.
I really hope that my story helps someone, anyone! I never dreamed that Nutrasweet would be that dangerous. :( I remember the warnings, when it first came out.
I think all food triggers should be labeled with warnings.
BTW, I've tried cutting back on the inderal, and have been unable to. I could probably stop taking the Elavil at night too, but I find it hard to fall asleep without it.
I have suffered from migraines since I was ten years old. My father has them, his father had them, his grandfather had them, and so on. I have had several migraine "episodes" in my life, all with different symptoms.
Starting at age nine, I had infrequent (every 4-6 months) attacks that started with a "spinning light" type aura. This aura lasted about 5-10 minutes. Exactly 11 minutes after it disappeared, I would get an extreme headache with strong light sensitivity. It felt as if my brain were sliding in my skull if I moved. These lasted about 24 hours. These episodes lasted about 2.5 years. Triggers were unknown.
At age 16, I had another episode. About every 5-6 months, I would get an aura for about 30 minutes. Rarely did it result in a headache or nausea, and if so they were very mild. This lasted for 2 years. Triggers were irregular meals, lack of sleep and stress.
At age 20, I had another episode. Every 2-3 weeks I got an attack of mild head pain and severe nausea with no aura. There was occasional light sensitivity. Attacks lasted about 12 hours. This lasted for 2 years. Triggers were stress and lack of sleep.
At age 25 I started my current episode. 4 to 6 times a week (yes, per week) I get severe light sensitivity, medium head pain, and severe nausea with no aura. Untreated attacks last for about 8 hours. I have been experiencing this for over three years so far and still going. Triggers are irregular meals, lack of sleep and stress.
I never took medication for my migraines until this last episode began. I generally dislike taking medication unless I have to. Since this began, I have tried ergotamine, Imitrex, and a wide range of the blood pressure/migraine medications as well as aspirin, codeine, tylenol etc... Only the ergotamine and Imitrex had any effect at all. Imitrex worked well, but made me so high I giggled for 10 minutes straight (I am NOT a giggly type of guy). I flushed the rest of the pills. The ergotomine works GREAT! One pill is almost always sufficient to stop an attack if I get it in the first 15-30 minutes. Every month or so I go off it to prevent rebound headaches. Not fun.
About 8 months ago, I started taking prophylactic "over the counter" supplement called Tanecet (at least in Canada) made from the Feverfew plant. Normally I think most holistic herbal remedies are crap, but this worked well. It has reduced the number of attacks by about half. However, this may also be due to my switching to a less stressful job at near the same time.
Please feel free to E-mail me at rervine@ns.sympatico.ca
We have tried everything to try to identify some triggers. Not much luck. I've tried Inderol, Neurontin, Verapamil and a couple of other things and am now on Depakote and Stadol NS. (I've also taken Imitrex, both in pill and injection form). I'd eat a little s____ if I thought it would help and not kill me with side effects. The Stadol NS miraculously takes the pain away but puts me in orbit (or should I say on the floor, since I usually pass out.) I don't know what the Depakote is doing except making it so that I can barely put one foot in front of the other and I fall asleep or want to at any time of day. It is AWFUL trying to make it through a day like this. That's the problem I had with Inderol. My heart rate and blood pressure were very low and I have low blood pressure anyway.
I'm now waiting for blood test results because my gyn suspects I am anemic. (I don't eat much because I get sick when I do and I get sick when I don't, so I don't.) We're considering medication that will stop my monthly cycle since it may be contributing to the migraines - and other problems.
So many people with migraine problems. It just amazes me and it is nice to know there's a place to read other people's experiences with different medications, etc.
I hate living this way and often have "Sherry pity parties." But I try to recover by looking with people with lupus or cancer or other problems more serious than mine. And I try to remember, "this, too, will pass."
---Evatt@Tempest.coedu.usf.edu
