In case anyone who is listening cares -- I saw a different provider today in the sleep clinic (instead of the provider who gave me the absolutely awful experience last time) and the result was pretty much the same. All he had to offer was "You have a CPAP. Your apnea is treated. I'm sorry you still...

In case anyone who is listening cares -- I saw a different provider today in the sleep clinic (instead of the provider who gave me the absolutely awful experience last time) and the result was pretty much the same. All he had to offer was "You have a CPAP. Your apnea is treated. I'm sorry you still ...

I posted updates after 3 and 6 months on CPAP, when I was still feeling terrible, and I was told to keep with it. I'm back again. It's been a full year of near 100% compliance, and I have absolutely miserable sleep, I wake up feeling like I've been punched in the face, and my ESS is around 14. Is t...

Another doctor you might think about consulting is Dr. Steven Parks. He is in New York, I believe, which is a little closer than Australia. He writes books, has a website with info, and from what I have heard an expert on UARS. With technology today, you might be able to send him your sleep tests r...

You mention every sleep medicine I can think of except Restoril (Temazepam). Just a thought. It's in the Benzo family of drugs (like ativan/lorazepam, xanax/alprazolam, etc). I think it comes in a 15mg and 30mg. *edit* wikipedia mentions restoril should be avoided in people with sleep apnea. I'm a ...

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on. Right -- so it stops working for sleep aft...

Doc, keep up the work... I am in your shoes since 2010, so 8 years (wow, just realized its been a long time) I am dealing with VA so things just take longer, it took me 3 years to see an actual sleep doctor and another year to see a neurologist.. she had me do an MSLT sleep test to check for Narcol...

For many people who take antihistamines for things like allergy and chronic hives, tolerance to the sedating effect is viewed as a good thing, where they can take the antihistamine long term while suffering less of the sedation side effect as time goes on. Right -- so it stops working for sleep aft...

Hello drfaust. I'm sorry I have nothing helpful to offer, I just wanted to say thanks for this thread. Sometimes it helps a little just to know there are others who understand what we're going through. My stats are different than yours, but I've also been laughed at by doctors, been mildly assaulte...

I agree with benadryl -- when I do take it, I sleep wonderfully. There are a few things that help me like that -- benadryl and klonopin primarily, and ambien to a lesser extent. But I don't want to take them too often for fear of building up a tolerance so they no longer work. Is there a specific r...

Thanks for the link -- I'll read this carefully! For most of the year I was on a fixed pressure of 8 (with the 3 EPR on the Airsense 10). I only recently went in and opened up the settings so they go from 7 to 11. I might try going back in and restricting them again -- but I didn't do well, even whe...

I use the headspace app for meditation. It's helpful and I enjoy it. I also have a heart rate variability biofeedback device for my phone, which helps you train your parasympathetic nervous system (your "rest and digest" system) to engage. They're certainly useful. But my sleep is still horrible. I ...

Thanks so much, Arlene! I have a wonderful psychiatrist who is helping me work through all of this, and I'm waiting on a referral to see a different sleep physician. I'm ok taking things to help -- I just know that they stop working after a while. That's what I'm scared of. The day that medications ...

I should also add that with ambien, I actually sleep much better. I don't talk, I don't have nightmares (I have vivid, but normal weird innocuous dreams), I don't get aroused during the night and I wake up feeling refreshed and like I can tackle the world. But obviously that is not a long-term solu...

drfaust, That is horrible that neurologist treated you like she did. Sheesh! I just emailed Dr. Eckert today and wanted to see if he knew anyone who might help in the US. I will let you know if he responds. Thank you!! I sometimes wonder if I might have a mild form of narcolepsy. I don't know, thou...