Scobee

Hello, everyone.

This is my first post, and it promises to be a long one. I would like to get some knowledgable feedback and feel that I should provide as much information as possible. This will include a listing of medications and diagnoses not related to my sleep test.

I have recently had two sleep tests due to my sleep problems which included waking up in the middle of the night with inability to fall right back to sleep as well as waking up early in the morning. My first test was recommended by my psychiatrist. She referred me to a nice doctor in a sleep clinic. I went for my first test and they wired me up. It was basically awkward. I woke up throught the night as usual and woke up early as usual. In the morning after the test, I sat down with the doctor (yes, the doctor. I have recently found out that is very rare.), and he discussed the results. I was told that I have partial sleep apnea which can be treated with a CPAP and that I have REM Behavior Disorder. I had heard of sleep apnea as my father has it. However, REM Behavior Disorder (RBD) was completely foreign to me. He simply stated that I acted out my dreams in my sleep. As far as treating the RBD, he wanted to treat the apnea and see if that eliminated the RBD.

So, I went to my second sleep test to get fitted for the CPAP. I also had to be wired like I was the first go round. Now, I just had this huge mask on my face with a hose protruding from it! LOL. It took me awhile to get used to it because of my panic/anixiety disorder. Even though it only covered my nose and not my mouth, I felt trapped and as though I couldn't breath. I finally got used to it and fell asleep. I still woke up through the night and woke up early. In the morning, I met with the doctor again to go over my results.

He stated the sleep apnea was well controlled with the CPAP. That was good news. He also stated that I had some periodic limb movement in my legs during Non-REM sleep. They were about 5 seconds long in consistent intervals... I cant remember how far apart they were spaced. However, he told me he wasn't sure of what or if there was any significance in that. I still had the RBD. This time, he explained it in a little more detail: loss of normal muscle paralysis during REM sleep. He said that we could treat this with a medicine called clonazepam which could replace another medicine I am taking, Seroquel (I'll list/explain later). He then showed me another portion on his computer monitor that showed a lot of crazy lines. He described them as bursts of synchronized EEG waves. There were four sets of them and they were all similar. He said he wasn't sure about them (they could be indicative of seizure activity) and he would confer with someone else (colleagues maybe? I can't remember exactly what he said. I was still trying to process everything.) At the end of it all, I needed to get a CPAP, he would confer with some other people and my neurologist, I needed to talk to my psychiatrist about the clonazepam, and I needed to come back in two months.

Well, after leaving the clinic, I didn't exactly have a warm and fuzzy feeling. I was really curious about the RBD and the EEG waves. So, when I got home, I got on the Internet.

I read about the RBD and discovered that during REM sleep, your brain is just as active as when you are awake. When you're in REM sleep, your body is supposed to be in a general state of atnoia, or muscle paralysis. With RBD, it is NOT. I read that it was first described in 1986, it primarily is found in men 60 years or older, they presume that it affects 0.5% of the population and they don't know the cause. (BTW - I'm a 32 year old female... not even close.) I also found out that of those diagnosed with RBD, 40% develop Parkinson's Disease (not good news for someone with severe phobias.) Also, clonazepam is the "drug of choice" for RBD and is 90% effective.

I also tried to find out info on the EEG readings and everything I read points to some kind of seizure disorder. I have only had one seizure (that I know of) in my life and that was during my sleep when I had a HIGH fever and pneumonia. I don't think I have a seizure disorder. I HOPE I don't have a seizure disorder. However, I can't find any other info about "synchronized bursts of EEG waves" during a sleep test.

Before I post my questions (as I'm sure you're wondering what they are), I am on the following medications and have had the following tests:
~ For my anxiety/panic/depression, I take 60mg Buspar, 40mg Celexa and 800mg Seroquel.
~ For my neuropathic pain (peripheral neuropathy), I'm on Topomax. I just started taking this medicine and am currently increasing the doses (started at 25mg now at 50mg... move up to 100mg by my next appointment with my neurologist).
~ For my hypoactive thyroid, I take 50mcg Synthroid.
~ I also take 84mg of Aspirin.
~ Full blood work done and then some showed: high wbc count (was NOT sick at the time), high platelet count, high LDL cholesterol, low morning cortisol, and high TSH with low T3; my 3 hour glucose tolerance test showed I was hypoglycemic.
~ MRI on my head showed nothing abnormal


My questions are as follows:

Does anyone have any info about the EEG readings that they can share? I don't know what to make of it. Are the bursts necessarily abnormal readings? If so, are they necessarily indicative of a seizure disorder or a neurological disorder? I've tried to do my own research. And since I am a constant worrier, I don't know if I can make it two months until my appointment with my sleep doctor! Any help, insight or direction is greatly appreciated.

Also, regarding the RBD, I am unsure of exactly what the harm is, aside from physically harming myself or my husband during my sleep. The reason I mention this is I wonder if I really need to be on a medicine for it. I mentioned the Clonazepam to my psychiatrist and she would prefer that I do NOT take it because it works on the same brain receptors as another substance... and it would "not be good" for me (those were her words). I read about the next medicine that is usually prescribed and they are tricyclic antidepressants. I'm not sure if those would be "good" for me either. I'm just tired of taking more and more medicines and am questioning the necessity. If one could replace another, that would be great. I guess I'm just full of questions and, despite my research, have not found sufficient answers.

And finally, I have had the CPAP for a week now. I still wake up about two hours after falling asleep. I fall back asleep only to wake up and actually get up again. Another hour or two passes and I go back to bed. And I still wake up around 3:30 or 4:30 am. Any ideas?

I am seriously frustrated. I know you aren't doctors out there. But maybe, MAYBE, someone has seen, heard or been through something similar. My fingers are crossed. Please respond!

Take care,
Erin