Feb. 17th, 2009

fortunavirilis: (House-MD)
I believe my body has decided that Lyrica is made of fail. The dizziness has not gone away. I'm passed out by 9pm every night (and I mean passed out). I am hungry ALL THE TIME- my mind goes: 'you don't need any more food', but my body goes 'MORE ANYTHING NOW'. I hate this since I've worked hard to lose weight and this is going to ruin that. And- the drug isn't helping. Yes, my partial seizures seem to be better. But my myoclonic seizures are just as bad as three weeks ago, if not getting worse. Now both shoulders hurt all the time and make horrible popping sounds in the morning and I don't even know what to take to make it feel better. It feels like I am progressively getting closer to dislocating one or both arms (in my sleep even!). It hurts badly enough that I can't do a good upper body workout (even with almost no weight) at the gym or sometimes even lift my arms above my head.

The myoclonus getting worse led me to check the web for facts on Lyrica- and I found something very interesting. Both the Epilepsy Foundation and the NYU School of Medicine Center for Epilepsy say that people who experience myoclonic seizures (or absence seizures) should NOT take Lyrica. Lyrica may make the seizures worse or prevent other medications from effectively working. Well, there you go.

I have a doctor's appointment already scheduled for Friday. Hu is coming with me. I'm going to confront my neuro about why he keeps changing my meds instead of just changing the dosage on anything. I want to know why he prescribed Lyrica when research shows he shouldn't have. I want to grill him until I'm either satified he had a good reason and it just proved not to work OR I determine he isn't enough of an epilepsy expert to treat me. In the case of the latter, there are two epileptologists within a reasonable distance that my insurance will cover. The catch- neither practice at the hospital near my house (one is in Martin County and the other practices at the hospital in Wellington). So if I were ever hospitalized, I wouldn't be near my house OR they wouldn't have rights there to treat me during my hospital stay.

I just feel like I'm not getting answers, I'm just getting drugs. And we're no closer to knowing what exactly is wrong. My stats sheet says temporal lobe epilepsy, myoclonic seizures, and seizures. The doc thinks the white spots on my basal ganglia might have something to do with my seizures- but that is not my temporal lobe! But I might well have Juvenile Myoclonic Epilepsy (misleading name- the top end of the disagnostic range is 30 and I've been seizing for several years now, maybe more than I can recall based on progressivly increasing severity and not knowing what to look for until recently, and am only 29) which is causing everything and I feel like he hasn't even considered that. I mean- I've been having the myoclonic seizures longer than the partial or possible absence seizures (he won't call them that, but I think I have had a few). In fact, when I moved to Florida in 2006 the myoclonic seizures (which I didn't have a name for at the time) were so bad (and my arms hurt so badly) I could barely drive my own car. And at that time I don't think I was having active partial seizures- that came in 2007. And I don't think I had my first absence seizure until 2008. Things are getting worse and he seem to want to explain it.

So I want to know:
1. Why the drug swaps instead of dosage changes (on things that worked last year)?
2. Why Lyrica when it is contra-indicatory for myoclonic seizures?
3. Why TLE (when I have no MRI evidence of TL damage- diagnosis was made by on seizure descriptions alone, but I do have damage to my basal ganglia) and not JME?
4. Long term what is the plan here? Is there a plan?
5. Why am I worse in the evenings (dizziness, cognitive impairment, myoclonic seizures)? Is it the state of my brain or the fact that I take all my other meds and vitamins (including the Cerefolin) in the morning?
6. If I get this dizzy/spacy should I really be driving? Since myoclonic seizures are general seizures, does that change my driving? (For the record- I only drive to and from work because this worries me so much, but I don't have another way to get there besides driving myself. On the weekends and at night I either walk where I need to go or Hu drives). The doctor says I'm fine to drive, but I question that.
7. Does my doctor think he can effectively manage my case- ego aside- when he isn't an epileptologist?

How do I decide to change doctors? Is it a bad idea to have a doctor that doesn't practice at your local hospital (which is 10 minutes from my house)? Is it reasonable to expect answers from a neurologist? They, as a group, aren't known for bedside manner.

And that's the state of the brain for this week.

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