A Wake Up Call

It took many phone calls to finally get the doctor who did my first sleep study to send a copy to the new neurologist. It doesn't seem complicated, does it? It was. Luckily, I managed to get them sent before I went back for the results on the recent sleep study.

In 2006 I had the first study done. I had moved a week before, and was definitely deep into chronic fatigue as a result. I went into a "normal" (stage 3) sleep for 9% of the time. I never reached the deeper, stage 4, sleep, at all. Not for a minute. The rest of the time I was lightly sleeping or awake. All night long. It was a somewhat normal sleep for me.

This time, I felt I had slept more hours. I certainly gave it my best try, since I know they need to read the brain waves. They also read waves off my legs, but if it makes them happy, who cares?

Results? He was explaining to me some of the results in terms that I really don't totally understand. I suspect he was talking out loud to himself more than anything, trying to digest what he was looking at. I didn't fit his preferred pattern, and he was a bit confused. Finally, I said that I had slept 9% of the time last study, and asked how much I had slept this time.

"None. Zero. No minutes at all." I was confused at first, until he told me that I did not ever sleep deeper than stage 2. I was basically coasting all night up and down from awake, stage 1, and stage 2 sleep. People can be in stage 1 and even stage 2 sleep and swear they never slept at all. They are very shallow stages.

So, it seems I have a good reason to be tired most of the time. Who knew? He also thinks that lack of adequate sleep is probably playing havoc with my memory. I think he said that, I don't remember for sure.

I get to try a different medication to help me sleep, hopefully getting me to a deeper sleep. I might even have it by tomorrow, but probably not.

I would prefer to be taught to sleep, if it can be done, without any medications at all.

According to the doctor, even people who swear they have severe insomnia will generally drop into a good sleep within 5 minutes during a sleep study. I had to take more medication that normal just to try to sleep for him at all, and I didn't doze off at all for 25 minutes. I had even added a Xanax so I would be relaxed in the foreign environment.

I think he is still shaking his head. Sorry. I tried.

I asked if he has sleep problems. (Yes, same as I asked the foot surgeon if he has foot problems.) This neurologist is also a psychiatrist, I believe, and some sort of an electrical engineer and has degrees in all kinds of odd things. He said yes, he does have some trouble getting to sleep because practicing medicine these days is very stressful. He wishes he could try the medication I will be getting, but it's very controlled and he doesn't qualify for it. Then he changed the subject.

He still doesn't want to deal with my "vertigo." He said he wants to deal with the sleep issues first and he feels some of my issues will resolve if I can sleep. He again said he thinks he knows what it causing it, and said either he doesn't think he can fix it or it will be very hard to fix. Or both. He was mumbling at that point. Probably tired.

When I left, I asked for copies of my records. The receptionist told me she isn't allowed to give me a copy of my first sleep study. I let her talk for a while, sadly said those are my records, and I should be allowed to get them, and what do I need to do so I can? Meanwhile, she copied them along with everything else and handed it to me. She also told me that I will be receiving copies of my case notes every time I have been to see the doctor.

I have the typed notes from the first appointment. I need a medical dictionary for some of it. However, this I do understand:

"She had an episode of acute disseminating encephalomyelitis, autoimmune encephalomyelitis...The question now is whether she has a progressive demylinating disorder...Deep tendon reflexes are trace to absent."

Tired people will sleep for the nap times, he said. How many minutes did I sleep at 8 am, 10 am, noon, and 2 pm? Zero. Not even stage 1 sleep. I was awake; couldn't even doze.

I tossed out the fact that ST was in the process of moving when I had the study done and that I miss him very much. It's the only time thedoctor smiled at me.

This line I am OK with: "I don't think I can justify doing a LP at this time because I don't think she has had any recent attacks or episodes."

That means he isn't planning to do a lumbar puncture and suck some spinal fluid out. I am OK with skipping that experience. I have refused to have it done before, and will continue to for as long as I can. Nor will I easily consent to nerve conduction tests. I am just not into pain.

Meanwhile, my head feels like it's bouncing along on its own private little cruise in a storm, and "we" don't want to deal with that yet.

I am sure hoping that getting some sleep can get me off this ride, but who knows?

This entry is more for me to be able to come back for the information than anything. I am not feeling miserable or nasty or crabby or anything. Yes, I miss ST, but I understand he had to move. He understands how I feel.

Meanwhile, summer is slipping away. In two weeks it will likely be cool here. It's hard to imagine, but it is going to happen.

Hopefully, I can sleep through some of the colder weather this winter.