I have not posted on my blog since 2011. I started out in my teen years to mid-twenties with migraines 4-6 times a year. Really bad and lasting for almost a week but I got by. I had other chronic illnesses that were more at my top to deal with. I have Hypothyroidism and NCS (neurocardiogenic syncope).
My thyroid wasn't working at all - and I kept being miss-diagnosed with mental issues - bi-polar, etc. It was a long path that after two suicide attempts and many problems of me hallucinating, etc., led to my Mother and sister putting me in a Psych-Ward against my will at age 23. No one ever checked my blood-work for thyroid issues and I dropped so much weight I was down to 80 pounds at one point.
My NCS causes me to pass out - it also had not been diagnosed at that time, just pushed to the side.
I was angry with my Mother and sister at the time for having me committed. BUT - it turned out in my favor. I was considered at-risk so was being watched 24/7 and in the line for lunch I had an NCS episode and passed out. By the time they woke me and got me into a wheelchair and then took my blood pressure it was 60/40 meaning it had been a lot lower when I passed out.
The doctors' got concerned and moved me to telemetry where my life was saved. Telemetry did a full blood screen and found my hypothyroidism. Apparently I was so bad they said they didn't know why I wasn't in a coma or worse. It was the worst case the hospital had ever seen.
Most people with hypothyroidism gain weight and have high blood pressure. I was underweight and always and still have low blood pressure. Which happens in about 10% of patients but still wasn't a good enough reason to be miss-diagnosed for 5 years!
My hypothyroidism finally being treated and all the mental issues went away. Except for my Anxiety Disorder and Attacks which I still have and make migraine worse. We still had to deal with why I passed out. After tests - it was NCS - there are many kinds of syncope - NCS is where when your adrenaline is pumping (normally your blood pressure increases) my blood pressure drops down to about nothing and I pass out. I had an entry in here more about my NCS. Anyway, your body corrects itself and you are back but not great. It can also cause what might look like seizure movements but are not.
So, we are dealing with all this and then I start having migraines even more often 1-2 a month from mid-twenties to early thirties. And some that last up to 2 weeks. But I am a single mother, finishing college, while working full-time,, and then off to my career. I was always a go-getter, mostly because when I didn't have a migraine, I felt I needed to do as much as possible before another came along (I Know I was likely causing more by doing this but I had so much work and family. And I loved my boys, of course, and I really loved my job.
Now during this time I am having tremors, which my Mom has too, and turns out to be Essential Tremors or Familial Tremors by another name. Supposed to be mild until much older. Unless you start having chronic and then constant migraines which jumped my tremors into overdrive.
Early thirties to late thirties I begin to have chronic migraines - I begin to have trouble telling where one migraine ends and the next begins. When I am semi-pain free I work as hard as I can. I am even working through migraine pain as much as I can. I keep lights in my office off and avoid conference room meetings. And I learn to fake not being in pain fairly well, even though I want to crawl into a cave. One Partner in my firm, I could never fool, she could see slight swelling around my eye and forehead.
In 2008, I go on short term disability and spend most of that time in the hospital here in KC. Then I go to MHNI (Michigan Head and Neurological Institute) and am in that hospital for 3 weeks. See in January of 2008 I got a migraine and it never went away. They managed to get my pain down to a 2-3 on a 10 scale and told me I could slowly go back to work but then only work 40 hours a week. (I was a CPA and when I went to 40 hours a week, they cut my salary. Odd, I know, but they did, even though I did still keep working about 50 - 60 hours a week. This worked out until my pain got more and more with one partner (I changed to working directly with clients to being the international an state advisor to the Partners and Managers with clients with these issues. And I did on-line training. So I was working not directly for the one partner who I found out had been taking credit for years for my ideas and work. And once I was out from under her, others discovered my talents and caught on - and would double check with me what she had told them on her own which at times was wrong.) So the more she as a Partner put pressure on me, the more my head could not stay at 2-3 and got worse and worse and worse.
By 2010, I went on full-time disability. and then things only got worse from there. By 2011, I had too much trouble with the looking at computer screen, thus, I could not keep up with my blog or keep up with the migraine and chronic illness on-line communities I was a part of.
Then came an inability to even read! I used to read 20-30 books a year and dropped to none. My wonderful husband and his family continued to buy me books I like so I wouldn't give up hope. I can't thank them enough. I refused to do listen to books because I just have a way of hearing characters myself and didn't want someone to change that.
My neurologist and her physician's assistant never gave up hope. I would never be without a pain, but to reduce it as much or for as long as possible was always the goal. They sign me up of call new prescriptions without even telling me because as soon as they were on the market for them it was Go-time. After so long they never would let me give up hope that at least I could get back to reading and computer.
By the way, I have vasospasms so I can't take any kind of triptans.
Aimovig after a few months I was reading! I was thrilled. Still horrible pain but READING!!! in small bursts because too much caused migraine to explode to ionosphere.
Then this year Vplexy, - off Aimovig - Vplexy is the newest treatment - an IV treatment every three months. And here I am updating my blog. I still have tons of pain but I am HERE!!! I did not DISAPPEAR!!!
So this is my story or some of it anyway - there is the loss of friends and family who don't understand, and pain continues to haunt my life but I am trying, and that is something to celebrate.
