Need Sleep Study Advice

[essdipity]

My doctor (not the neuro) has suggested I may want to do a sleep study, the usual kind. He will prescribe it, and so on.

The thing is, my sleep has been pretty horrible for years, ever since 2001. That's when I came off Klonopin with disastrous results. Since then I've had a lot of prescriptions to help with sleep, including quite a few for which somnolence is a side effect, but which I didn't need otherwise. In recent years I've had a lot of Ambien or Lunesta. I try to keep sleep meds to once every 3 or 4 nights because I don't want to be dependent. On the nights I don't take anything I wake up every couple of hours, go to the bathroom, and try to sleep again. Usually this works fairly well, though my sleep is constantly interrupted and I feel exhausted in the morning and sometimes all day. It's as if my body gets tired out from the effort of trying to sleep. I know I don't get much of the deep restorative kind. Often even Ambien or Lunesta doesn't work too well either.

Of course I could go for the sleep study, but I hesitate because from what I can find out, it's not likely to do much to solve the problem. They can document all the irregular sleep cycles up the wazoo, but what good will it do? I don't need this for any diagnostic purpose as I'm already on Copaxone. It probably has little or nothing to do with MS anyway.

So people, especially those who have had sleep studies, what do you recommend? If you had the study, did you then find a way to sleep better? Or was it more of a 'rule out' thing and useful for some other purpose?

All help appreciated and many thanks.

ess

[Want to feel well!!!]

Do you have any idea what they are looking for?  I know they look for sleep apnea but there must many things they can observe.

Insomnia is a big issue with me and I now take sleep meds every night.  I was worried about being defendant on them but my current doctors feel sleep is more important right now.  Sleep deprivation is not fun can be big mess.

I feel for you.  Not being able to sleep is awful.

Wanna
    

[wingnut19]

Hi Ess:

I was diagnosed with CENTRAL sleep apnea last year, which believe it or not, was one of my first symptoms.....I have found a few websites that correlate between CENTRAL sleep apnea and MS.  It's very rare, but true....My Neuro told me that the area of the brain that controls sleep/breathing has a HUGE lesion on it, hence the CENTRAL sleep apnea....(he explained it much better than that LOL)
For anyone that might be curious as to why I put the CENTRAL part in caps, is because there is hardly ANY information about this type of apnea and it makes me very angry and frustrated....
Ess, you should probably ask your doc why they want to do this, if there's anything specific..
PS---Didn't you get a HORRID taste in your mouth from Lunesta and Ambien?
Tammy

[essdipity]

Wanna, they wouldn't be looking for anything specific, just investigating my sleep problem because it's gone on so long. Last night was truly terrible.

Tammy, thanks for the information about central sleep apnea. I don't think that's me because it's not as if I feel as if I've slept but really had periods of not breathing. That sounds like an adult version of SIDS. I do sleep, poorly, and wake up sometimes every hour or two, often for long periods. Then I feel rotten the next day because I'm missing so much valuable sleep time. If they tell me I'm depressed I'll scream.

I don't get a bad taste from sleep meds, and didn't know that can be a problem. I just don't sleep.

Thank you both. I hope more members will have comments.

ess

[spastic]

Hey Hon, a sleep study can show a lot of different things.  It can show seizures, restless leg syndrome, if your not going into REM sleep, sleep apnea.  When I had mine done, it just showed insomnia due to chronic pain.  But I have to add, where I had the study done at, the bed was the most comfortable I had ever slept on and I slept pretty good.  Ess, I found that Lunesta and Ambien didn't help me at all, and thats when my Dr prescribed Trazadone and that finally gave me some restorative sleep.  I know you don't like to take meds to help you sleep but you have to think of it another way, like I take sleep medication to make me feel more human the next day.  Don't you think the alternative is much worse?  Not sleeping and feeling more rotten because of it?  I am here for you, Hon.

Many Hugs,

Ada

[Momzilla]

Hey~ I am so sorry to hear last night was so bad for you.  And that this has been such an awful ongoing problem.  Sleep deprivation, or just that feeling that you'd rather be in bed, is torturous!

I have have a couple of sleep studies, each of which has shown I have OBSTRUCTIVE sleep apnea, far different than CENTRAL apnea, and not usually asscoiated with MS.  (Central sleep apnea can be associated with MS, the way I understand it.)  Mine is moderate, where I woke about 225 times during the night due to breathing cessation.  I have Restless Limb Syndrome, and apparently I kick my legs during my sleep.  There's some kind of party going on!  

When they told me I woke so many times, I didn't believe them, and skipped the next part of the study, which was being fitted for the CPAP machine, and trying that for a night with the video and same equipment.  I went another year before I started with the terrible fatigue again, and my internist sent my to a pulmonologist, and HE insisted I do another study.  I don't really fit the profile of a sleep apnea patient, but both my father and brother have CPAPs.  They swear by them.

The next test produced almost identical results.  My RLS was worse.  I agreed to get the CPAP machine, and I so looked forward to using it.  I thought -- this is what is going to change my life!  It was interesting.  It took a few nights to get used to, as the respiratory therapist said it would.  I woke up with it OFF the first several mornings.

Then I noticed, as I got used to it that I started to really have DREAMS again like I had years ago.  I suppose like everyone does.  I hadn't gotten to the sleep stage where you actually dream in a very long time.  It was almost scary at first!  Now it's just kooky.  I have an off-beat subconscious.  And now-vivid dreams, which is kind of cool.

But, and this is one of those more important BUTs... I still go through awful periods of fatigue.  The kind that make you want to cry.  Well, maybe not YOU, but ME, for sure.  I'm not saying at all that the CPAP doesn't have any value.  I don't know how I'd be feeling without it.  I'm afraid to even try!  And the giant turquoise aardvarks would miss me.....

I wonder if your bladder function is part of the problem.  Do you have to use the bathroom when you wake up, or do you just wake up?  I have read that neurogenic bladder is an awful sleepus interruptus for MSers.  

I think the doctor really just wants to rule out the apneas for you.  Especially in light of your new diagnosis.  The study is not that bad, if you can get comfortable enough sleeping for the cameras...  It sounds bad, but it's not!  I was made to feel VERY comfortable every time I went.

Good luck.

*

[Momzilla]

Or should I say,


Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz*

[pennst8r]

I had a sleep study, first part in February. It was that study that FINALLY caught my horrendous spasms on machinery and the camera that spies on you all night. Worth it just for that. I also was diagnosed with obstructive sleep apnea. I am awaiting my bipap and looking for ward to maybe actually hetting some sleep every now and then.

I would definitely recommend doing the test. It may be helpful on more levels than you think.

Penn

[pennst8r]

I could be mistaken, but I thought I remembered Quix saying it was not a bad idea to have sleep study done as part of the work up to Dx/rule out MS.

Penn