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Sleep Study? for fatigue
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Sleep Study? for fatigue

Hi all,

I just got back from appt with nuero. He wasnts to send me for a sleep study as we were discussing my fatigue issues. Is this a common step? Anyone else ever go through this for fatigue with MS

He sid this will determine if I have sleep apnea or if he can discuss medication for fatigue

JibJen
22 Comments Post a Comment
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3986919_tn?1352129583
Hi,

To answer your question: No I haven't heard of the sleep study for MS.

My MS specialist and neurologist KNOW I experience pretty severe fatigue and they never once mentioned to have a sleep study done. (they don't know I had a sleep study or that I use the CPAP) forgot to mention it to them...

I had a sleep study done back in April, before my MS symptoms began...(I was dx with asthma.... the pulmonologist asked if I had fatigue or did I snore..I said yes to snoring and fatigue sometimes...) That is why I had the sleep study.

I failed the test do to sleep apnea and snoring...I stopped breathing every two minutes ALL night for up to 30 seconds each time! I was excited about getting the CPAP machine....thinking I would have more energy ect....

Unfortunately it was right after I got my CPAP machine is when I starting getting the "MS" symptoms.

I still use my CPAP every night. Unfortunately for me it didn't help with the fatigue associated with my MS symptoms....

I don't regret having the study done and getting the CPAP machine. I know it is beneficial in so many ways...just didn't help "MY" fatigue. That doesn't mean it won't help you :)

Sounds like your doctor would rather try to treat you "naturally" before treating you with drugs. :)

Hope this helps,

Laurie  :)
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956292_tn?1334058469
Hi,

Thanks for your insight and sharing..He said it is more to rule it out so we can then determine if medication is an option for my fatigue. He wants to see if there is more than MS fatigue first

who knows..I hope I do not talk in my sleep while I am there ..LOL
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3986919_tn?1352129583
LOL!!!!! That is what I was afraid of!! The nurse said I just snored really loud!  :)

Laurie  :)
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956292_tn?1334058469
hahahahaha...I will probably do that too :o)

I am afraid I will have a hard time sleeping with someone watching me..I hope it is a female though I would probably not feel as weird....
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3986919_tn?1352129583
I had a female nurse...I hope your place was as nice as mine..Looked just like a hotel room. There was a small camera mounted on the wall. NO where near as "scary" as I thought it would be :)

You can even bring your favorite pillow and or blankie...the nurse told me hilarious stories about what people (adults) brought to sleep with!

The hardest thing is to try to sleep with all the wires they "GLUE" on you!! It took the nurse about 45 minutes to glue them all on!! I did sleep though!
Good luck! when do you go?

Laurie  :)
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Avatar_f_tn
I don't think a sleep study is exactly common for MS patients and probable MSers, but it's a good idea nonetheless. If you have sleep apnea, there are good treatments that don't require meds. You're doctor is smart to do this as a rule-out sort of thing.

Don't worry, the staff at sleep centers have seen it all. I hope you do manage to get some decent sleep while your head looks like Medusa with all the wires attached. Just don't wash your hair for at least a day or two before you go. You will have so much sticky gunk in your scalp that you'll need a long and vigorous shampoo afterwards to get it all out.  

ess
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Avatar_f_tn
It is permissible to ask that no camera be present and no one observe you, that they deal only with the information from the wires.  That was my request.  Unfortunately we changed insurance plans and I never went for mine.  I wasn't willing to wear a C-PAP or B-PAP anyway!

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900662_tn?1380159390
I'm a cpap user and still suffer from fatigue,  the health benefits of using the cpap go beyond snoring

Blood pressure improves and your mind is receiving the rest it needs also.  


When you do the sleep study some people are lucky and they can nail the problem in one night, I had to return to be fitted and regulate the pressure.   It was the most awful type of sleep.

It take a few weeks to get use to the cpap,  and you'll need to return to your Dr a few weeks later  with  data card.    THe card reveals how many  hours and records the days you use the cpap..  


The first few nights i threw off the mask, I stuck with it tho.
I use the nasal pillow and  have a pressure of 15,  with a heated hose and humidity .   You'll learn about all of that.


Best of luck and better sleep to you
John
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751951_tn?1406636463
Hmm.  You know, Laurie, I went on CPAP shortly before my symptoms began -- from whatever cause they might have originated; I am still unDx.

I still remember my two (successive) nights at the sleep center as a strangely relaxing experience, almost like a mini vacation.  I guess it was due to the stress I was experiencing at home in those days.  I had a regular workday between those two nights, too, and that job was among the most stressful I've held.  A getaway, I suppose, despite the interruption.  The place was calm and quiet, and I had a TV if I'd wanted to use it.  I also had my laptop and the hospital's Wi-Fi, so I could "talk" with folks like you!

When I use the CPAP, I sleep better.  I know that regular use is good for me, but have gotten out of the habit of using it since I remarried 3 years ago.  Lulu54 has scolded me appropriately, (she's a community LEADER, remember! ;) ) so I am trying to work back into that practice.  In addition, I have lost about 40 pounds since then, so I suspect that my nighttime breathing is somewhat better anyway.
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3986919_tn?1352129583
Wow! what a coincidence! You too got your MS symptoms right after using the C-PAP?

Maybe they should have a "warning label".....may cause MS symptoms, discontinue use and consult your doctor....LOL! :)

I am glad you have lost weight...I wish I could...having lots of trouble with that now ....anyway, I was told IF I lost weight they most likely would have to change the air pressure setting...mine is set at "8" right now...

You would have to go back and have another sleep study so they can check/adjust your pressure setting....

You REALLY should go get another study and see if you have improved....so you can START wearing it again!  :)

Laurie  :)
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956292_tn?1334058469
Thanks everyoe for your input. I guess it will be INTERESTING to say the least.

I do not have a date yet as they had to wait for authorization from ins.

I will let you know how I do.

Jibs
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429700_tn?1308011423
I had a sleep study for fatigue, and I know there's several people on this forum that has had one.  My MS Specialist referred me to the sleep and breathing disorder clinic to have one done.  I didn't sleep much because I had to get up to use the bathroom four times, so that meant to be unhooked four times.  

I was also highly stressed out prior to the procedure because I felt this to be my only avenue for getting my insurance to approve the Provigil--the only effective medication for my fatigue that I had been taking.  The insurance company needed proof that I had a sleep disorder before this medication would be approved.  I had a received a letter, after years of being on this medication, that Provigil was not an approved medication for treatment for MS fatigue.  They wouldn't approve the medication.

To make a long story short, the sleep study wasn't a total bust.  I slept long enough for them to get some information.  I was placed on a medication to help me sleep through the night and to help with the constant getting up to go to the bathroom issue.  I now dream--something I don't think I've done in years.  Plus, recently, the generic for Provigil is out there.  The sleep doctor prescribed the generic of Provigil, and it was finally approved.  I no longer consider going through a Canadian pharmacy.

So, to answer your question.  From what I understand from my MS doctor, MS can cause sleep disturbances and it isn't uncommon at all.  I was thoroughly impressed with my sleep doctor.  The fatigue isn't gone, but I'm thinking more clearly and the fatigue is better with the Provigil and the other medicine to help me get a deeper sleep. MS and other brain diseases can cause sleep disorders including sleep apnea.  I would highly recommend a visit to the sleep disorder clinic for the sleep study if your insurance pays the cost (highly costly).  

Best wishes,
Deb
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Avatar_f_tn
My cardiologist wants one to rule out sleep apnea due to my complaints, but haven't managed to put my fingers on the phone dial yet........

Won't do it if Medicare/Medigap won't pay for it because I just don't have the funds.

I don't think you can rule out MS fatigue with it either, I agree with the above.  My Provigil does help a bit, I take the generic and am encouraged that my insurance says its going to be cheaper next year.  Right now I am paying $8 a pill for 200mg.  I tried cutting them in half (scrooge here) but not enough "umph".

Keep us posted but not sure what it can prove other than sleep apnea!
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1781490_tn?1318655065
Hi there
Thought I would chime in
I independently consulted a sleep doc asking if he sees sleep problems with ms pa.  Well yes he says
I had the study and have a lack of ream sleep, landed on lunesta after a couple of bad effects from other meds.
No apnea along with nuvigil it was the best thing I did for ms fatique
I was surprised
Good luck!
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572651_tn?1333939396
Sleep problems and MS go hand-in-hand so much that NMSS dedicated a cover story to it last year or the year before.  Sleep apnea is not unusual and the symptoms present in different ways.  For me, I was waking in the early morning because I had slight headaches. and tiredness would wash over me at all odd times of the day.

The sleep clinic test is not that bad, you just don't get that much sleep. I have had two, and I have CPAP which does make a difference.  But the neuro also prescribed provigil (generic modafinil sp? ) and I also take that.    

We had a good discussion about sleep and MS a couple years ago with a sleep expert, Dr. Park.  

here are a couple links to his discussions -

http://doctorstevenpark.com/multiple-sclerosis-and-obstructive-sleep-apnea-is-there-a-link

and this is the one we had a lengthy thread from people sharing their sleep experiences-
http://www.medhelp.org/posts/Multiple-Sclerosis/A-Question-For-People-With-MS/show/757658


I would definitely do the test and see if the results correlate with your experiences.
be well, Laura
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956292_tn?1334058469


Thanks everyone,

the funny thing is when i discussed my fatigue I was telling him I am always exhausted. I go to bed at 7:30 due to being sooo tired and typically wake up at 6 and sometimes still feel tired. I feel totally wiped out at about 3 and could fall asleep at my desk

Sometimes on weekends I have to just stop and lay down. He is wondering why , if I am getting so much sleep, am I so tired.

I can not recall waking up in middle of night, except IF I have to use bathroom. I probably snore as my hubby says...I do not know if I flop around in my sleep.

Funny thing is there ar times I feel great and have energy and then this hits me like a freight train.. I try to keep active and push through but I am tired.

We will see I guess

Thanks so much

Jibs
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1140169_tn?1370188676
Hi Jib. I remember a couple years ago my Neuro said he'd arrange a sleep study test for me, but it never happened.

I've seen him twice since then, the last time just 4 days ago, and didn't bring it up....partly because I don't really want to be told I have sleep apnea, and partly because I just didn't remember to ask.

I also spend from 8 pm to about 7 am in bed most nights. I get up at least once, but usually 3 or 4 times to use washroom. I rarely feel rested and usually have to lay down in the afternoon.

I'll be interested to hear how your test goes.

Good luck

Mike
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956292_tn?1334058469
Hi Mike,

I am not really looking forward to someone staring at me sleeping but if it will help me in long run..what the heck....

I will let you know :o)

Jibs
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1045086_tn?1332130022
Yes, SLEEP DISORDERS DO OCCUR MORE FREQUENTLY in PwMS than in the general population.  Besides sleep apnea, PwMS are vulnerable to sleep requirement disruptions from things like stress, medication side effects, pain, depression, bladder problems, restless limb syndrome and anxiety.  It's yet one more life arena where we need to remain vigilant to maintain a healthy balance.  It’s definitely worth checking out!!

I knew I had sleep problems before I knew I had MS.  I requested (and was ready to demand) a sleep study back in 2006.  I had been sleeping 10-12 hours every night and although I SEEMED to be sleeping soundly (didn't even disturb the bedding) I NEVER felt rested or refreshed.  I'd wake up a few times each night and stumble to the bathroom but the trip barely interrupted my snoozing.  It didn’t seem to be much of a factor in my need for zzzzzzs.  I WAS aware of my own 'loud breathing' from time to time.  OK.  Yes, I woke myself up sometimes :{ but I fell right back to sleep then too.   So there was no explanation for my fatigue.  A physical and blood work were proof.

Eventually my too tired brain added 2-3 hour naps to my daily routine.  I went from tired to nearly non-functional. It was a struggle to stay awake while driving. It was a struggle to get my brain to process simple information.  I was a danger to myself and others.  My blood pressure had risen and my weight was doing the same.  I knew something about sleep disorders and I knew sleep apnea could cause all these things.  I was ready to do whatever was needed to get my life back.

My sleep test showed 81 'events' per hour!  WHAT???  That couldn’t be right.  There aren't that many MINUTES in an hour!!  Besides, my perception had always been that I slept soundly!!  Wow.  Hummm.  I was told I had sleep apnea - primarily of the obstructive variety - and it was making it virtually impossible to get enough REM sleep - a kind we need if we're ever going to feel rested.  (I apparently have some degree of central sleep apnea as well, likely a result of MS - that other yet-to-be-diagnosed thing I had way back when.)

I started using CPAP as soon as I could get the machine.  I hoped the benefit would be instantaneous and dramatic.  It wasn't.  But I DID notice that I immediately stopped waking up for middle-of-the-night potty trips.  Apparently I hadn't been waking up because I had to go.  I was going because I was aware of being awake and figured that's what woke me up!  Who knew?

I stuck with the CPAP machine on the strength of the sleep study evidence and my faith in the sleep neuro guru.  He told me I had a huge cumulative deficit and it would probably take some time to see a difference.  He prescribed Provigil (and later Nuvigil) to help the process along.  I did…. and still does.  I can't pinpoint the moment when I recognized the benefit.  I know it was months later that I suddenly realized I had been wakened from a dream.  A dream?  I hadn't had one of those in years... not that I was aware of anyway.  I guess they happen mainly during REM sleep.  So you don't get much of one without the other.

These days I can go a night here and there without CPAP before I start to nod off with the old sleep deprivation feelings.  Need I say that CPAP doesn’t turn me into a ball of energy?  I guess MS is the thing that makes sure THAT isn't going to happen.   The thing CPAP does (and has done incredibly well) is enable me to drive and work and function in a near normal way.  The reward offered ends up being good enough to make me willing to don the (minimalist) nasal pillow headgear almost every night.  Besides, it's just too frustrating any more to wake up before I'm ready without a realllllllly good reason.
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1045086_tn?1332130022
If I may ask.....
What's so bad about someone watching you sleep?
What do  you imagine you do?

Anyway, I suspect the tech is watching the equipment that is monitoring you more than he/she is actually watching you.  Remember, the techs on duty are probably responsible for several other people who will be invited to attend the same 'sleep-over' (separate rooms, natch!)

I bet the techs get jealous that WE SLEEP while THEY WORK.  Make those zzzzzz's look oh-so-good.  A sleep study feels a little weird but it really isn't very bad as tests go.  Enjoy!
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Avatar_f_tn
not to steal your thread, but since we got off on the subject of generic provigil, which is what they switched me to.........anyone get dizzy from it?  Perhaps have to work up to it like with neurontin?

back to sleep studies...............I wake up at night feeling like I am choking?
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956292_tn?1334058469
WOW - Thanks I guess we can benefit alot from a sleep study.
I guess I was giggling about whetehr I will talk in my sleep during my study

HAHA. but you make good points..I highly doubt they care as they have to stay up and I DO get to sleep. I can not actually remember when I last had a dream..

I will let you know how I make out.
I am so glad it helped you!

Jibs
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