sleep study
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November 12, 2007 at 5:01 pm
I know that some of you have experience with having a sleep study done. I was sent to a specialist by my neurologist to have one done which I am scheduled to have tomorrow night through Wednesday. They are doing an extended study because I present with a majority of the seven major sleep disorders. My question is, for those of you who have gone through this, if you were diagnosed with a sleep disorder,was it related to your CIDP and did treatment help you manage the symptoms of the CIDP? I just hope this isn’t a whole new issue for me to deal with. I know that many of us have to juggle multiple disorders and syndromes. I just hope the treatment for this one helps instead of exacerbating symptoms or confusing the whole CIDP symptoms. Oh well, wish me luck. The worst thing will be not being able to sleep with my dog!(and my spouse:o ).
Linda -
November 12, 2007 at 7:20 pm
Linda,
Please keep us posted on this, as my fiance’s neurologist is sending him for a sleep study as well. His consultation should be next week if he doesn’t sleep through it and miss his appointment again! :p
–Shannon
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November 12, 2007 at 8:51 pm
Hi, They did a sleep test when I was in the hospital for PT and OT. I came out fine, and I snore alot (sinus). Good luck and sleep well, maybe take your favorite pillow along. Regina
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November 12, 2007 at 10:25 pm
I had a sleep study done about 5 years ago & was dx with sleep apnea. I tried the C-Pap machine & lasted about 3 nights, as I have panic disorder & my hands were too bad to get it off in the morning. My husband was still working at that time. But I lost about 50# of the 80# I had gained on steroids & started sleeping on my side, so things got better. I would say mine was definitely caused by the CIDP.
Pam -
November 13, 2007 at 12:13 am
[I][FONT=Century Gothic][SIZE=3][COLOR=darkorchid]My wife had a sleep study done a few yrs back & they said she had sleep apnea. Ok the idiots put her on a C Pap machine, & that didn’t last very long with her. It caused her to have Panic Attacks, so that was the end of that. :rolleyes: [/COLOR][/SIZE][/FONT][/I]
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November 13, 2007 at 1:58 am
I wasn’t referred for a sleep study because of my GBS, I would stop breathing and my snoring blew the roof off the house. After the study I was dx with sleep apnea. That was in October 2006. In December I got my C-Pap machine. I just strap it on every night and go to sleep. I haven’t had any roof repairs since.
good night – John -
November 13, 2007 at 2:14 am
I have not had a sleep study done. I was a good sleeper until GBS! Sometimes the pain makes me restless inspite of Rx. Then I take 1/2 an ambien and I get “some” rest. How I would love to wake up feeling refreshed ~ like the good ol’ days gone away 🙁 Usually the mornings are a downer but by afternoon I can “engage” in life for a few hours.
Lack of restful/restorative sleep and the body’s communication gone on the fritz, well, what is one to do? Guess I’ll hobble on over to the tavern and chat with those folks 😀
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November 13, 2007 at 10:16 am
Hi: I had several sleep studies done and dx’d with sleep apnea. I too hated the cpap machine but in the last two years they have come up with several new types of masks which are great. I have no trouble sleeping with my new one. My sleep apnea was not related to GBS.
The sleep studies are kind of a drag as you are wired with a lot of wires and I had trouble sleeping during them. But, overall, I do sleep much better now than ever and feel it was worth it. Good luck tonight. Jeff -
November 13, 2007 at 1:13 pm
Thanks everyone,
I guess whatever new information one can get on their body is a good thing. The more I know the more I can affect. It just seems to me that those of us with GBS/CIDP have constant fatigue and exhaustion so why wouldn’t we not sleep normally. But I also realize that getting proper sleep is vital to restoration of muscle and tissue repair. So…. I’ll let you know. Be well.
Linda -
November 14, 2007 at 1:45 pm
My sleep hasn’t been the same since GBS… I guess because of the neurontin, etc. over the years, I have a bad case of acid reflux now. I recently put these little blocks under the head of my bed. It feels a little strange being tilted up and is harder to sleep (I can’t explain), but I’m hoping it will help the acid reflux and maybe with other sleep factors.
I’ve got a friend who went through a sleep study recently and got one of those contraptions to wear and I believe she is doing okay with it and sleeping better. It is strange looking, but if it helps – we gotta do what we gotta do!
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November 14, 2007 at 10:30 pm
Linda,
Ben isn’t having his sleep study to find out if he’s getting *enough* sleep. He’s having it because, without the Provigil he takes, all he does is sleep. With him, they’re going to try to find out why he can’t stay awake. It’s so bad; even taking 400 mgs. of Provigil/day, he still has trouble staying awake.
I hope everything goes well for you!
Shannon
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November 14, 2007 at 11:02 pm
Well I am home and have not been happier to be. Well not since going to emergency in Sept. The study was really tedious. 21 hours in one windowless, depressing little room. After being wired up like a suicide bomber, with two nose canuals, glue all over my face head and chest I was expected to cozy in and sleep from 11pm to 7am. I got there at 7:30. So after watching 3 hrs of t.v. I hunkered down and had the most uncomfortable night. I could barely move my head, I was itchy from the glue and so uncomfortable not to mention self concious of that camera aimed right at me. The attendant had to come in one time to rewire me at one point. Then after restless sleep I woke at 6:30 because my insulin pump needed to be changed and I was hopeing I would be able to get up and walk around a bit. Instead they brought me this camping food and told me to eat and stay busy until my first nap at 8:30. At that point they make me go back to sleep as if it were night time and after 20 minutes, just when I got to sleep, they come in turn the lights on and resume talking to me as if we were in the middle of a conversation. This goes on all day. Every 2 hours until finally at 4 pm I am unglued and sent home. I felt like I was held captive in a box and when I was finally set free I walked out into the daylight very disoriented and dizzy. No coffee for two days didn’t help. So I guess I would not want to do that little experiment again. Maybe I just don’t have a very high threshhold for discomfort but that just was not pleasant. I also have to admit that I kind of am skeptical of so many people needing these studies done and then being told they have sleep apnea. I mean there were 16 people there last night and thats just one study this week! I don’t know. I just think its a bit of a money maker having so many people go through these studies and then need the cpap machine. I will probably have to eat these words but thats how I feel.
By the way, Shannon, I too was sent because I sleep too much. Like I said earlier, how could we not sleep constantly wlith this condition? So I get results in a week and a half and tonight I am happily home. I hope everyone else is well and healthy. I will post results ASAP.
Thanks
Linda -
November 17, 2007 at 11:10 pm
I can’t wait to hear the results, Linda! Sorry about your unpleasant experience, but hopefully they’ll find something in your study that’ll help everyone on this forum!
Welcome back!
Shannon
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November 18, 2007 at 9:38 pm
Linda,
The sleep study you hadn’t done doesn’t sound like anything like my sleep study. They put me in a cozy room. Everybody was nice, but the bed was very uncomfortable. I really didn’t get much sleep that night. However, at seven o’clock in the morning they released me and sent me home. They said I had sleep apnea and needed a C-Pap . The C-Pap itself worked great. However getting a mask to fit was a a whole different story. I have tried several different types. None of them really worked. About four months ago I found a new gel filled mask that had a very simple holding apparatus. It is very easy to put on and get off. Since then I’ve been able to get a good nights sleep. It’s only taken a few years to get to this point. I hope you have better luck.I hope this makes sense. This is only the second day using Dragon NaturallySpeaking. So far I have found out that it really does not like my New Jersey accent. So if you find any mistakes you can blame the software.
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November 18, 2007 at 10:17 pm
Jim,
you came in loud and clear. That program sounds so cool. Thanks for all your input and support. I am glad your experience was better than mine and that you are sleeping well. Hopefully I will know soon what the deal is with me. It’s going to take them a while to evaluate all the data they gathered from me I’m sure.
Take care,
Linda
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