CFS or Hypersomnia?

[SuzCat]

I'm pretty sure that I have Hypersomnia. I've been exhausted since I was 14 (I'm 35) but it's got alot worse in the last 2 years. I am desparate to sleep ALL of the time. I feel like I'm a jet-lagged mother of new-born triplets.
If I don't nap, I'm a zombie. I can hardly speak, walk or talk and of course, I daren't drive. And I never feel any better when I wake up. It just tides me over for a hour or so. Then the brick hitting me in the head, stingingly sore eyes and desperation to collapse start up again.

I'm waiting to see a Neurologist and get a Sleep Study done. I'm so desperate to have a life, and not need to have 2 or 3 naps a day as well as a full night's sleep. It's getting worse and worse, which is what got my GP to finally refer me to see a Neurologist, after telling me for a year that I have CFS and there's no treatment, I just need to learn to live with it (wonderful).

I've read that people with hypersomnia are often prescribed Provigil, Ritalin and other stimulants. I'd love to hear some success stories of people finally getting the right treatment and being able to live again. I'm running out of positive-thinking and patience. And hope.

Have any of you had Sleep Studies done to assess the fatigue side of your CFS or Fibro - to check if you're getting restorative sleep?

[Haydi873]

I was diagnosed with idiopathic hypersomnia with long sleep time. I had an MSLT of < 3 minutes. My doctor started me on 100mg of provigil after about a year I'm on 200mg. I still have good days and bad but for the most part I can function as a human being. My coworkers exclaim at the total turn around in my personality and my marriage is better for it as well. It took 2 full over night sleep study plus a MSLT (multiple sleep latency test) but it has totally changed my life for the better. I work in health care and I no longer fear that I'm going to inadvertently harm a patient due to sleepiness.

[carfunkle1990]

I have been labelled with CFS but recently was diagnosed with idiopathic hypersomnia. I feel I may have a combination of both because the pain is affected severely by weather and I still get postexertional fatigue etc. Hope you all figure your problems out. I may have to leave med school because of this.

[SuzCat]

Thanks. I rarely remember my dreams and I wonder if that means I'm not getting much REM sleep. Waiting for an appointment for a sleep study...

[Fantasma]

My doc has had me on Trazadone at night to help me get the REM sleep that chronic fatigue robs us of. I have no next day drowsiness from it. It was a simple solution to a simple, but perplexing and frustrating, problem.

Best to you.

[PlateletGal]

Hi Weney,

I believe it was 80% of CFS patients fail the sleep study test. It is due to our illness, but obviously causes us many problems. Some CFS patients have sleep apnea... others do not. Anyhow... here are some links to articles about this :

Sleep Dysfunction in CFS :  http://www.cfids.org/archives/2002rr/2002-rr4-article01.asp


Can Sleep Apnea Cause Fibromyalgia (FM)- and Chronic Fatigue Syndrome (CFS)-like Symptoms?

http://www.prohealth.com/library/showarticle.cfm?libid=7380

[Weney3777]

What do you mean by 'fail the sleep study test'? Do you mean they are diagnosed with sleep apnea? Just wondering, PlateletGal, because my heart rate was also 40 all night long. Could that be anither reason for my chronic fatigue?

[PlateletGal]

It certainly sounds like you could have a sleep disorder. It may interest you though that the majority of CFS patients fail the sleep study test, although I don't see you listing other symptoms right now other than fatigue. For more information... check out our health pages:

http://www.medhelp.org/health_pages/list?cid=39

[SuzCat]

Thanks for responding to my post. I'm going to push for a Sleep Study - I'm at the end of my tether with all of this. Over the summer, when everyone around me was also on a kind of go-slow, it seemed a little easier to cope with being so run-down and wiped out.
But now the kids are back to school and eveyone is ramping up again and I feel left miles behind. The only one I'm keeping up with is my 12 year old cat.

I've got a good friend who has sleep apnea. He uses a Bi-Pap machine when he sleeps, but he still has days when he uses Provigil to get him through. He says it's a god-send. If, like you say, it could just make it easier to bear having to drag this achey, weary body around, that would be a huge leap forward for me.

Here's hoping I can find a doc who agrees! Be well.

[Weney3777]

I mean I HAVE been diagnosed with chronic fatigue!!! Doctor thinks Fibromyalgia, too. Sorry about that. :)

[Weney3777]

I haven't been diagnosed with chronic fatigue. Maybe  Fibro, but my doctor is doing all the tests to confirm. I had a Sleep Study last night and the tech told me I stopped breathing several times, and I only had one REM sleep(after 51/2 hours) all night. I am waiting on the 'official' results next week. Actually, my Primary referred me for the sleep study, maybe yours can do the same?

I have been on Provigil for 3 days now, and it helps quite a bit. I don't necessarily feel more energetic, but the weakness and achiness in my legs and body are more bearable. I do feel alert and I can concentrate better. It's just a slight difference, but it's there.

Good luck!

[SuzCat]

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