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Permalink Reply by Renee on May 27, 2010 at 11:52am

Hello Leslie ~

I have been using CPAP diligently since Dec, 09 but remain VERY tired. I found out quickly on that the 1st sleep lab that I went to was not going to be of any help and so I switched to another in which I had much higher hopes. At the 2nd one, I was advised that, in addition to severe OSA, I also have severe alpha intrusion - so only 2.8% SWS and ZERO REM - so I, like you, fall asleep quickly but don't get restorative sleep. The doctor at the 2nd sleep center expressed serious concern as yours did, except with my doctor, that's all that happened. After a 2nd titration to confirm the results, which were worse the 2nd time, he then prescribed RX that didn't work, and then said that he would follow-up with another titration in 2-3 years. So I am really glad to read that you had a doctor who kept working with you to find out WHY you remained so tired.

I have heard of IH and have wished that a doctor would consider for me -- trying to get to the cause of the alpha intrusion, conducting an MSLT, and considering the possibilities of IH and CFS.

Since I have now found out that the doctor at the 2nd sleep lab, who had claimed that he was so interested in helping me, is not interested in further treatment til another titration in 2-3 years, I am going to try going to, yet, a 3rd sleep center which is overseen by Neurologists rather than Pulmonologists. Sadly, my experience has been that the sleep centers seem to be set up as commercial enterprises and they expect to simply conduct overnight studies and treat sleep apnea and when someone comes in with a complication that can't be easily and QUICKLY diagnosed - eg: sleep apnea plus maybe Narcolepsy - they are NOT interested in taking time to help the patient. So, as in my case, having severe alpha intrusion and virtually NO SWS and ZERO REM - I have, so far, not been a candidate for treatment other than for my sleep apnea.

So, while I don't know whether or not I have IH in addition to OSA, I sure feel as though I do. It is very good news to read that you have received successful treatment! I am very pleased for you. I can hardly imagine how good you must feel experiencing such wonderful "awake" time but nevertheless it's good to read about it. And it gives me added motivation to keep trying to find the help to solve the mystery to my own tiredness. Glad you wrote.

Best and good rest,
Renee

Leslie Scott said:

I was on cpap for 6 years without improved fatigue. We tried everything. Changing meds. I finally had just thrown in the towel and blamed the fact that I have Fibromyalgia. (and yes, I have alpha intrusion too)

It wasn't until they decided to treat my ADD that they figured out about the Idopathic hypersomnia. (it was almost 4 months after I started the meds when my dd's psychiatrist realized what it was, she actually thought narcolepsy at first) I was started on Adderall. I went from sleeping 15-18 hours a day to being awake 15-18 hours a day. (and it didn't do a thing for my ADD) I have since switch to Vyvance, but to this day, if I don't take my medication, I will sleep 15-18 hours. (today is the perfect example, I have been off the last 2 nights because of weather, and I have slept all day and then slept all night as well). I had to take my meds when I got to work tonight or I would have been out. (and I was only awake about 2 hours through out the day) I did have an MSLT done. My problem was not ever going into REM. I would fall asleep in less than 2 minutes, but never went into REM (during the MSLT or the PSG). The doctor scoring my study actually said to me 'I don't have any idea what to do with you'

Les in CO

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