Wednesday, December 10, 2008

blunderland's a place with 24 hour a day non-stop aura

Hello everyone from Migraineville AZ,
I have migraine disease, that's what a lot of this blog is going to be about at least my experience of living with this disease in its debilitating form, and my fight to live as normal a life as possible. My brain tells the story. Lots of lesions caused by the disease. No one has really answered my question about these lesions. I am just told they are" typical"of migrainated brains. I have had a spinal tap to rule out MS -- there is nothing "typical" about anything that is in your brain and shouldn't be there! What happens to the lesions over time? Can they contribute to other brain disorders?
And finally now the big one. No matter what drug they try or what procedure they attempt, I continue to see aura 24/7. Blue streaks with golden edges, swarms of black dots, especially when I turn my head quickly, golden blue zig-zags, follow the bouncing ball, amoebas of all shapes and colors, pinwheels of silver slicing through my vision, and finally Alice in Wonderland syndrome. When Alice visits depth perception goes to pot, my hand can look huge and the rest of me tiny. It would be a blast if it wasn't so scary. And to all you neurologists out there - why is this my fate, why can't this be fixed, why I am told I have to learn to coexist with it? I have seen constant aura now for seven years, morning noon and night. What switch went off that started the lesions and and began the aura? And to anyone out there who deals with constant aura - please comment.
I was told Lamictal was a good drug for this and it did nothing and it also did not block my migraines. Lamictal was good in only one respect: it was easy to tolerate and the side affects where minimal. But add it to my list of drugs that go in the trash. Sometimes at night - my night vision is all screwed up and it is like I am kind of blind. Last week I walked - nose first into a picture hanging on the wall - I punctured the picture(strong nose LOL) which was a priceless one of a kind Japanese painting. The update with my Lyrica? 3oo milligrams baby! I felt drunk in the morning and whoa - took some Atavan last night and I think the Lyrica tripled my response to it. My words were slurred this morning and my vision was distorted.
And it's way too early to see if this is going to work on my chronic pain and fibro. m. So I had to work, play a rehearsal fully medicated with Lyrica. I though the stand was going to float away. Don't even ask about driving. "Most people tolerate this very well," a quote from my pharmacist. I guess once again I'm not in the "most people" category. But as usual we are left weighing what is worse and certainly I would answer you now that I would take it because I have nothing to lose.
What's some more side affects when I have endured an induced coma, had ketamine make me feel like I was in that long tunnel between life and death and had enough DHE (we're finally all on the same page on this one - for me it does nothing), to kill a horse. And from countless ER and hospital stays my veins are definitely in blunderland. And after all this - and so so much pain in status migrainous the answers for me seem totally inadequate. Sometimes, the only thing that does the trick is the iv zofran (which my ins giveth and taketh away on a regular basis - zofran is not even the best drug for nausea) for the barfing and 2.5 milligrans iv dilaudid to stop the pain - of course all this adds up to an ER visit. For the moment the pain is at a tolerable level. I hate putting those freakin' numbers on it. What it is right now is noticeable but not terrible.
The Lyrica is going to force a nap on me. My record for waking up from afternoon naps to a migraine is not good. We'll see because for all intents and purposes I am a lab rat.
So long from blunderland!


deborah said...

DECEMBER???? Give me a small break will you!! blog SOMETHING

Frank said...

There is a really great site that offers many recent health news articles and research about migraines.