Letter to a sleep clinic

[SquirmingSusan]

I hope and will send up prayers that you find someone close that you can help you with dignity and honesty.

Lynne

I got a partial answer to that prayer yesterday at the pain clinic. I saw a different doctor who was very knowledgeable about RLS. She looked at my chart and commented on how many medications I've tried and noted that I must be pretty desperate. Then she looked at me and said "You need to get some sleep!" She suggested upping my bedtime dose of methadone, but I didn't think that would help. I told her that Unisom works the best for knocking me out, and that I can take it if I can keep the RLS knocked down. So that's the plan for getting to sleep.

Then she wondered why I wasn't on Provigil to help me stay awake during the day. I told her I had asked several doctors and they had all said no, but I would sure like to try it. She went and found me 2 weeks of samples and wrote me a prescription for it, along with my methadone.

Some days I just have to think, there is a god!

Oh, and along those lines, there is a chaplain job that just opened up very close to my home, 21 hours a week. It's at a UCC assisted living facility, and that's my denomination. The competition for ministry positions in the metro area here is fierce, but I'm going to put my name in. The description sounds like it was written for me. So with some help from above, and some medications to tame the RLS beast, I can dream of going back to work. Do I dare?

[SquirmingSusan]

One more post and I'm going back into my sleep-deprived stupor. I'm in the middle of trying to shift my circadian rhythm and this is the farthest I've ever made it into the process. Tonight I'm supposed to be asleep by 6pm (oops, already late); tomorrow night by 9pm, and then I should be on a relatively normal schedule.

And then with the Provigil to help me stay awake during the day, maybe it will stay that way. Although it didn't help me stay awake today, but I'm running on sleep deprivation by staying up 3 hours later each day...

Well, it's worth a try. G'nite.

[ViewsAskew]

All of the above sounds just lovely.

[dogeyed]

I need to add here that sometimes the over-the-counter sleep meds, like Unisom, will aggravate RLS. I used to take those from time to time, until I noticed that. I think the doc's advice of getting more methadone at night will be sufficient to keep you asleep, and you're working on bedtime, so hopefully that eliminate need for Unisom.

[Neco]

I totally forgot about this post, and I know I was supposed to take a look at it and see if I could clean it up.. Although it sounds like maybe you have a good idea already about what you need to cut down and leave in, etc..

So I'm still here if you need me, but I guess I'm saying it looks like you seem to have it under control.. So sorry for forgetting though.

[pedrime]

Susan I am so happy to read your update! Your new doc sounds wonderful! Please keep us posted on the Provigil and the job opportunity.

Meg

[SquirmingSusan]

Hey, remember this letter? I delivered it in person, today. I figured while I was there, I might as well let them know what happened to me there. I just printed it out and signed it.

Why did I go back to that clinic? Long story short: No local sleep clinic will take Dr. B's "order" for a sleep study followed by a MSLT, without becoming one of their patients, and that means waiting for a month to see a doctor, doing a complete intake appointment, and then letting that doctor make a diagnosis. Phooey on that.

So I called the old sleep clinic yesterday and they said I could get in with their new physician's assistant today. So I did. She just listened, nodded, and seemed pretty clueless about refractory RLS and narcolepsy. I brought the green "Clinical Management of RLS" book, so when I told her who my new sleep doctor is I could point to the cover and say, "this guy."

She looked at the book and said that she really needed that book. I was surprised, and said that she should already have it, being that she worked in a sleep clinic.

Anyway, it was a short, pleasant appointment, and she wrote the order for the sleep study and the MSLT. I go in next Thursday and stay through Friday afternoon. I've been reading up on narcolepsy and many things in my life are starting to make sense. If the test comes back negative I'll be so bummed. But I don't know why it wouldn't show narcolepsy. The big test is if you have REM sleep right away when you fall asleep. Heck, I took a "nap" today and lay there awake, but relaxed, and having a couple 5-10 second long, very colorful dreams a couple times a minute. That can't be normal, and yet it happens to me all the time.

I just always thought that people with narcolepsy fell asleep face first into their dinner, or in the grocery store. Who knew that chronic fatigue and all day long sleepiness were it's main symptoms.

I'm so glad that I went to see Dr. B.

[ViewsAskew]

The big test is if you have REM sleep right away when you fall asleep.

No way! I know there are many things I should respond to first, but Susan, this happens to me ALL the time! I've always wondered how I could spend so much time in REM when I can't get to 3 and 4! I lay down at night and am just barely asleep and I'm dreaming. I usually wake up in about 5 minutes knowing that I've been dreaming and thinking that it couldn't have been a dream. They are not completely dream like, though. They are more like lucid dreams. So, maybe not the same thing.

Is there any other cause for this? I don't think I have any other narcolepsy signs, but then I've never looked. I do have what I call sleep attacks - and have had them for 30 years. But, they come and go and it's always a peculiar feeling associated with them and I don't "just" fall asleep. My whole body gets limp and lethargic and and I feel like I MUST go to sleep. I yawn continuously, about every 15 -30 seconds (they are HUGE yawns). These episodes last about 45 minutes from start to finish. The first sign is often that I want to eat and usually something high carb. I think it's my body telling me that this is coming and I need to wake up.

OK, I am totally taking this thread elsewhere, I am so sorry.

It really sounds like this was the best thing that could happen for you. You're really getting to the bottom of this, finally. Yippee!

[SquirmingSusan]

Wow, Ann. Going right into REM sleep like that? Normally it takes 90 minutes of sleep before people go into REM sleep. People with narcolepsy take a lot less time to get there, and spend much more time dreaming. That's why the definitive test for narcolepsy is the Multiple Sleep Latency Test. First you do a regular overnight sleep study, and then they get you up in the morning, and then have you lie down to take a nap every 2 hours. Narcoleptics will usually take less than 10 minutes to get to sleep, and will have REM sleep during the short naps.

I'm just worried I won't be able to stay awake between all those darn naps. But it rarely takes me more than a minute or 2 to fall asleep when I'm sleepy. Unless I'm taking Provigil or Nuvigil. The it takes much longer to actually fall asleep, but not to start dreaming, LOL.

I am just so terrified that my body will act completely normal on the day of the MSLT, and it won't show a thing, and even Dr. B will think I'm just lazy and crazy. After all these years of struggling with this crap, I'm scared to actually hope that we've gotten to the real problem.

Have you had a sleep study, Ann? You may just want to call Dr. B's office and see if you can get one scheduled while you're out there, and while you have health insurance.

[Wayne]

Did you include or imply that their might me legal action as someone suggested.

Hinting at any kind of legal action or even worse bad publicity by calling the local news station will get their immediate and undivided attention even if only short lived.

[SquirmingSusan]

No Wayne, I gave them the letter as first posted here. I lost the original to make the changes that people suggested. It's pretty forceful (maybe too much so) as is. I'm relying on this clinic actually giving me the sleep study.

But if they screw with me anymore, I still have the letter and could forward it on to the state medical board...

[ViewsAskew]

I have had a sleep study - before this started happening, though. It's only been the last year or so I've noticed it. It's very weird.

As I said in the other thread, I can't have any tests out there as my insurance won't cover it - only stuff here. If he wants something, I have to see if I can get it here in the remaining 19 days of coverage once I get back.

And, yeah, it's really weird. I just did it on the train coming home tonight. My BIL's dad died and we were at the wake. I had a "sleep attack" and decided not to read anymore and just take a nap. I was sort of aware of the conversations going on in the train, but was also dreaming. I'm not sure it's REM - but I'm dreaming. So, either you can dream out of REM or I get to REM in a minute or two.... Once I've slept for about 3 or 4 hours, any additional time I'm sleeping is mostly continuous REM. If I awaken at 10 AM, fall back to sleep and awaken at 10:15, I'll have been dreaming.

I doubt it's narcolepsy, but it's something associated with screwed up REM.

[SquirmingSusan]

As I said in the other thread, I can't have any tests out there as my insurance won't cover it - only stuff here. If he wants something, I have to see if I can get it here in the remaining 19 days of coverage once I get back.

Ugghhh.

And, yeah, it's really weird. I just did it on the train coming home tonight. My BIL's dad died and we were at the wake. I had a "sleep attack" and decided not to read anymore and just take a nap. I was sort of aware of the conversations going on in the train, but was also dreaming. I'm not sure it's REM - but I'm dreaming. So, either you can dream out of REM or I get to REM in a minute or two.... Once I've slept for about 3 or 4 hours, any additional time I'm sleeping is mostly continuous REM. If I awaken at 10 AM, fall back to sleep and awaken at 10:15, I'll have been dreaming.

I doubt it's narcolepsy, but it's something associated with screwed up REM.

I'm pretty sure that dreaming=REM=dreaming. Sleep attacks, dreaming right away when falling asleep, dreaming before actually being asleep, super vivid, long dreams, excess daytime sleepiness (EDS) - all symptoms of narcolepsy. There are people with narcolepsy who don't have cataplexy.

The only other sleep disorder with crazy REM stuff that I know of is REM sleep disorder (something like that) where people aren't paralyzed in REM sleep and act out their dreams.

But I am no sleep expert. I defer to Dr. B; he'll have an idea of what's going on with you. Give him a hug for me; it's the first time in years I've had hope of functioning again. On second thought, don't. Use every bit of his focused attention to get answers about your own sleep issues.

I've been reading a bit on a site called "Talk About Sleep." They have good info on a variety of sleep disorders, and forums on each one.

One of these days I'm going to give up my career as a "doctor" and go back to my own vocation. It's tiresome to always have to try to figure out what's wrong with me because the doctors don't have a clue or don't care. If all my doctors were as competent as Dr. B, I could just trust them with my medical issues and go on with my life...