So, yes, I gave in and decided to blog to you guys so that way we can have a discussion of sorts if you have questions about what I write, because the main purpose here is simply to update you on my medical situation, which is always changing.
Then yesterday, despite being exhausted, I went to a regular doctor’s appointment with my PCP – primary care provider. I haven’t been seeing my long time rheumatologist, Dr. Z, very often as she is not in-network. But my PCP, Dr Hannah Phillips, is doing a really good job, and as we get more time together, she’s getting a better understanding of my issues.
In December I went to see her and was doing really, really, not well. I had figured out that this was likely due to increasing the dose of Lyrica a couple months back. I had noticed I wasn’t taking the usual dose for people with FMS, it was a bit low, so we raised it up, and then slowly, so slowly, side effects starting showing up. But it’s so hard to tell if it’s a side effect, or is it just a flare, or am I getting the flu…but she agreed with me to lower it, and some of the most annoying side effects (like loss of urinary control) disappeared, and my energy level improved from a zero to a 2 on a scale of zero to ten, with zero flat in bed.
Okay, now the good stuff – and I have to hurry as I’m getting a migraine, which is what computers do to me.
Dr Phillips thought it was ridiculous that my neurologist hadn’t contacted me about the sleep study yet, since it was done back just before Halloween, so she tracked down the results. It seems I have two definite sleep disorders, so far (since they didn’t do the daytime part of the test, we don’t know it all…).
The most prominent problem is Central Sleep Apnea. This is not the garden variety of Sleep Apnea – no, not me. Most sleep apnea is Obstructive sleep apnea, where there is something physically blocking the flow of air and causing the body to stop breathing temporarily (and usually to snore, too).
Central Sleep Apnea is different and present in less than 1 percent of people with sleep apnea. What it is, essentially, is that the brain temporarily stops sending signals to the muscles that control breathing, so you repeatedly stop breathing during sleep. In the 5 1/2 hours I slept, I had 82 “respiratory disturbance event” which on average lasted 19 seconds, with the longest lasting 28 seconds. However, on the plus side, my oxygen level stayed pretty much stable.
The second problem is commonly called “restless leg syndrome” although it’s more properly called limb movement disorder. In my case, I had limb movements 27 times over the 5.5 hours.
I did not snore at all, and I also never entered REM sleep (I know in me, REM sleep happens between about 8am and 2pm).
What does this mean?
Well, the Central Sleep Apnea is kind of a big deal, as we have to determine the cause. The most likely cause is side effects from medications, and both Dr Phillips and I had already decided to trim down my meds anyway. But if it turns out to not be that, the other causes are basically bad, brain related things, and we’re not going to think about those right now.
So, Dr Phillips and I went through all my meds (and I had brought with me one list for each of the last four years showing the progression of my meds coming and going to make it easier). I had already made a couple changes on my own, like cutting the Lyrica more than we had talked about. But a lot of things I have to keep taking, like meds for my thyroid, etc., but we are backing off on as many as we can.
The problem is, the number one most likely med to do this is my pain meds, and we can’t cut those out entirely. Although, there is another medication that I want to try that’s used for restless legs as well as Parkinson’s. Do you remember that woman from West Virginia we met in Dr Z’s office one time, Mom? She had been on a trial of this stuff (mirapex) there but no one here knew anything about it or would prescribe it. There have been more studies, and I had taken one article in to the doc in December and so she’s rather fascinated by giving it a trial.
Next week (wednesday) I go see the neurologist. It will be interesting to see what she has to say about this. I’m definitely in the market for a new neurologist, since this one didn’t even call to let me know the results and had me waiting all the way to the middle of January. Although, in her defense, it looks like the report wasn’t finished until the first week of December. Still…
Okay, folks, I’m going to bed now. I’ve been on the net too much today, and combined with my achy jaw, it’s migraine time.
Talk at you tomorrow.