Little Girls DO Get Headaches Dr Aronow!

My migraines started when I was 11. One day I woke up with a blinding headache that just didn't go away. Every week when I went to my pediatrician for allergy shots my mom told him about the headache, but he just waved her off. Finally, one Saturday as we were leaving, he had heard enough. "Little girls don't get headaches" he shouted at me in front of a waiting room full of people, "you're just neurotic". I may have only been 11, but I knew what neurotic meant. I also knew that the pain I was feeling was very, very real, and I was frightened because it just wouldn't go away. The doctor's words stung, and made me feel as though I was somehow responsible for causing my debilitating pain.

It was 4 years before I got treatment. When my mom came home from work 1 day to find me pounding my head against the wall and screaming, she took me to her own doctor. He put me in the hospital and ran some tests to rule out tumors, etc.

 
With a diagnosis of migraine, he suggested I see the doctor who had just moved in upstairs from him. This doctor had opened up a new kind of clinic, one dedicated specifically to the treatment of headaches. The doctor's name was Seymour Diamond.

Dr Diamond did help me quite a bit, albeit indirectly. He put me on so many meds that I became anorexic and my menstrual cycles stopped for almost 3 years. That period of time is the only time in my life since I was 11 that I have been migraine free, and it led me to make a very bad decision about 20 years later.

When my periods came back, so did the migraines, and with a vengeance. In fact, after all of my pregnancies (live births and miscarriages), the headaches got worse. Sometimes they were double-sided or all over my head and I was sure I was having a cerebral hemorrhage and was afraid I was going to die. After about an hour of this I was even more afraid that it was just a migraine and I wasn't going to die, but might have to live with this off-the-charts pain indefinitely. I prayed for death.

I didn't go back to Dr Diamond, but I saw so many other doctors over the years. Neurologists, endocrinologists, chiropractors, gynecologists, osteopaths, homeopaths, psychiatrists, acupuncturists, you name it, I tried it. The migraine diet, the gluten free diet, vegetarian diet, the diet and supplements Edgar Cayce recommended for folks who got headaches. I never gave up seeking treatment. I held fast to the promise that so many doctors told me, that when my estrogen levels began to fall, between ages 35 to 40, my headaches would improve.

In a cruel twist of fate, when my estrogen levels dropped and perimenopause set in, my headaches actually became much worse. I began missing several days a month from work.

Desperate, I went back to the Diamond Clinic in 2002, this time seeing Merle Diamond, Dr Seymour's daughter. I saw her for 10 years, which included 3 stays at their state-of-the-art inpatient unit in St Joseph's Hospital. During my first stay, we found that I was very anemic, which could be a contributing factor to the headaches. I found that I needed a bowel resection to correct this, and made the (bad) decision to have a total hysterectomy along with it in the hope that my migraines would stop. They didn't, and I am sorry I had the hysterectomy.

I got into the clinical trial for the occipital nerve stimulator. It seemed to help the first year, but by the second year, it wasn't doing much, and I had it explanted. That seemed to be the case with many of the study's participants, I was told. The study required 4 surgeries which while minor, have left my neck and back looking rather like Frankenstein.

In late 2011, my chronic daily background headaches morphed into chronic daily migraines (average of 3 -5 on good days). My last stay in the Diamond inpatient unit was in Feb/Mar of 2012, and after going through their 3 day DHE protocol 3 times, they were unable to break my headache. I went home feeling exactly the same as the day I was admitted. I have been unable to work since then, and am currently on disability.

The weather is my biggest trigger, and my head will ramp up sometimes 3 - 4 days before rain or snow hits (average of 7 - 10). Sudden changes in temperature also bring on worse pain, and being out in hot weather, or very sunny weather will also trigger a worse headache.
I am afraid to drive very far. I have become very forgetful. I'm not as alert as I used to be. Not as smart as I used to be. It's very frustrating for me as well as for my husband. I feel basically housebound, and I desperately want to live my life. I have a 92 year old father and a 15 month old grandson who live 10 minutes away from each other but 90 minutes away from me and I would love to be able to drive over to see them once or twice a week. I want to go to Bible Study at Church. I want to go shopping. I am afraid to drive.

In February of 2013 I woke up one morning in excruciating pain that was, believe it or not, NOT a migraine! It actually was concurrent with my migraine, and was, I found out later, coming from a pinched nerve in my neck. I had surgery on that in April of 2013.

This past April I had surgery on my severely deviated septum, really in high hopes that it would actually help my migraines, because I've always had problems with a stuffy nose, and the fact that the turbinates in your nose swell when the barometer changes explains weather triggers. I was so hyped!! I thought it really did help for awhile, but then the headaches came back full force, so I think it just "confused" things for awhile.

I am so very weary of playing the every-old-drug-is-new-again game. the neurologist I'm seeing now has me on the very first drug Dr Diamond put me on in 1975! I'm also taking a handful of other drugs I've taken before which never worked either. Why should I expect them to work now? The thing which also worries me is that my faithful Imitrex seems to not only have stopped aborting the headaches, but on the last 2 occasions that I used it, my headache got so much worse that I ended up in the doctor's office for emergency treatment. I switched to another triptan, but that isn't helping either. Migranal doesn't do me much good either.

I read on Migraine.com about the Jefferson Headache Center and made an appointment there for this coming October. I'd greatly appreciate any helpful comments you guys can offer as far as what to bring with, stories you can share, what to expect, etc.

Shalom,
Julie