My Doctors Had No Idea…Or Several incorrect ones.

Hi! I am a 67 year old female who has lived with headaches for as long as I can remember. As a child, my mother told me that my headaches were “growing pains” and that they would pass. My sister’s thought that I was faking headaches to get out of doing chores. I felt terribly misunderstood! I remember my maternal grandmother putting tea bags (she called them tea balls) on her eyes and putting her head lower than the rest of her body and having to be quiet when she had her frequent headaches.

I went to college in the 60’s and discovered recreational drug use. I found that I felt better when I was high, which was why I believed for many years that I had “simple tension headaches“. While in college, I tried horseback riding for the first time and fell off the horse, hitting my head and sustaining a concussion. I wore a cervical collar for a short while and was given Darvon. When headaches seemed to be getting worse, I was sent to a neurologist, who did x-rays and seemed almost disappointed when he told me that I was normal. He said that I was experiencing tension headaches. The doctor in the college infirmary agreed and gave me Valium. Over the next few decades, I lived with this diagnosis or was labeled as “drug seaking”. I used to even joke around and say that “It was all in my head”.

In the 1980’s I was having back and neck pain and after MRI, and Catscan was diagnosed with scoliosis and several ruptured discks in my back and neck. I was then referred to a pain management specialist, who treated me with steroid injections, epidural injections, nerve blocks and trigger injections in my back and neck. He also gave me Baclofen and Vicodin and Depacote for my headaches, which he diagnosed as Occipital Neuralgia. He really did try to help and had a lot of heart. One day, he was working with a pain fellow, training her to interview patients and she asked me to describe my headaches. When I did, the two of them asked several other questions about my headaches and they came to the conclusion that I had two kinds of headaches – occipital ones and migraines. They asked me if any of my close relatives had migraines and I told them about my maternal grandmother and aunt having bad and frequent headaches. I didn’t know if they were migraines or not. Since then I have learned that my sister has a kind of migraine that causes distortions in the vision without headache, my cousin’s daughter on the maternal side of the family has migraines with headache pain and a first cousin on the other side of my family has migraines that cause vertigo without headaches The pain management doctor continued to treat my headache, back, and neck pain for many years with injections, as mentioned above, Vicodin and Baclofen.

About two and a half years ago, a different pain management fellow came to the conclusion that my headaches were not being properly treated. She was horrified when she asked how often I had headaches and I answered that it was hard to say because they never went away, that my life was one big headache. I was then referred to a headache institute for treatment of my unrelenting migraine. The first thing the neurologist did was to insist that I stop taking both the Vicodin that I’d been taking for years and that I have my psychiatrist get me off of Clonopin and Lunesta he was giving me, as she felt they were causing migraines. I did this in baby steps, tapering off these drugs slowly. Next she had me stop using artificial sweeteners. This was hard for me as I have an incredible sweet tooth and had recently been successfully dieting. She gave me Gabapentin but then had to lower the dosage because I was getting dizzy and had fainted twice. I felt better for a while but then it seemed that this new regimen was loosing its effectiveness. Next she ordered a Cefly for me and again, I did well for a while but then gradually, my migraines started to increase again. That neurologist moved on and I was assigned another one at the headache institute. She felt I was a candidate for Botox and so far, has given me one treatment. I will have another later this week. It seems to have been successful at controlling my migraine symptoms and I hope it will continue to do so. I saw an ad somewhere for Theraspecs and I wear them outside, in florecent ighting nd when I have a migraine. I use ice packs on my forehead during headaches, often while using heat on my neck.

My migraines have been the bane of my life. Because of them, I’ve missed out on doing things that would have been fun, I retired early from a social work career, I decided not to have children, and have attempted suicide. When the headaces were “all in my head” I didn’t talk about them and I hadn’t even an inkling that other symptoms I experienced were related to these headaches. I thought that vertigo, confusion, ringing in my ears were all signs that I was “loosing it”. I worried that the way words would temporarily disappear from my vocabulary when I was looking for them meant early onset altimeters disease. It was such a relief to find in your newsletter and in talking with my migraine specialist that it is all migraine related. Thanks for being there to teach us, Migraine.com.

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