ironhands

Ok I'm Compeltely Fed Up With Doctors.

29 posts in this topic

I have UARS and N with C.

The CPAP machine hasn't helped the EDS at all. (I've been using it for approx. 8 months.)

I do find that I have more mental clarity in the morning since I started using CPAP.

I'm going to continue using it, I definitely breath more easily over night.

As my doc explained, if the machine makes me feel even 5 or 10 % better...even if it's just in the morning....grab what I can get..... it's worth it.

 

I hope you find the CPAP helps you.  It would be great not to have to be on meds!!!

 

Just an aside....if your humidifier has dried out overnight you might be leaking.... are you using nasal pillows?  You might be breathing through your mouth overnight.  (our jaws naturally relax) Check out the papCAP online by Pur-Sleep...it's a great way to train yourself to sleep with your mouth closed.

I found eventually I didn't need to wear it.

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I'm using a wisp, and checking my logs in the morning, there's generally only one OA event per night so not a worry.  I have a mirage as well if I get worried about mouth breathing, but seems fine.  I generally clench my jaw pretty hard at night and wear a mouthguard.  Humidity is fine, I fill it nightly and keep it on 4-4.5.

 

I do agree with the clarity, but still pretty lethargic/physically tired.  I'm more alert, but still yawning

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I wonder if you started taking a whole bunch of naps...with the CPAP machine on....could you dig yourself out of your sleep debt faster?

I'd be tempted to take a week off work and sleep as much as I possibly could....just to try to kick the EDS to the curb as quickly as possible.

Wonder if it would work????

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I know this is a little old but I wanted to share my similarities with this thread.

"Generally talking N you hear about *0602, but the second largest genetic marker is 0301 from what I've just read, and hypocretin levels still show relatively normal in CSF."

That is exactly the same situation I'm in. My orexin was not average but above the 200 threshold at the time. I know HLA isn't a strong marker but I was HLA positive for both types.

Alongside thyroid antibodies, high TSH/low T4 and Malignant Melanoma stage 2c (that HLA is the sunshine gene).

My first ever MSLT showed latency of around 4 minutes (this was close time wise to onset of my symptoms that came along with a TSH on Thyroid of 56).

Five years later my MSLT is above 8 minutes but PSG showed immediate onset REM. Conclusion? Not narcolepsy, apnea instead. Despite my first test result coming closer to onset of symptoms.

So now I have to struggle on with untreated Cataplexy (now don't qualify for treatment) and I have to deal with APAP not working and a struggle to get the AHI down to get Nuvigil even though I know Nuvigil resolves the EDS of my N that is now all of a sudden not EDS/Narc.

I hope you're doing well. I just wanted to share that I did have a Narc diagnosis with above threshold hypocretin/orexin after AHI was ruled false positive. Now new MSLT has been ruled defunct so had Narcolepsy taken off my record.

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