UARS friendly physician

A doctor who does not believe UARS is a distinct syndrome will just put you on CPAP.

Does anyone know of a sleep doctor who believes in the UARS syndrome (aka hypersensitive nervous system) in California? I am willing to drive far, or fly.

I know of Dr. Guilleminault, but it's difficult to see him.

How about calling Dr. Guilleminault's office and if they can't give you an appointment, explain your difficulty and ask for a referral.

Removed my post

1041 wrote:A doctor who does not believe UARS is a distinct syndrome will just put you on CPAP.

Does anyone know of a sleep doctor who believes in the UARS syndrome (aka hypersensitive nervous system) in California? I am willing to drive far, or fly.

I know of Dr. Guilleminault, but it's difficult to see him.

Dr. Guilleminault does not believe that UARS is treated differently than OSA. What exactly are you looking for? There are no other treatments for UARS besides those available for OSA.

I have an appointment with Dr. Guilleminault but it's so far in the future.

If I had a UARS diagnosis confirmed before I see him, I could go straight to "Given my personal nasal and mouth structure issues, what treatment do you recommend?"

1041 wrote:If I had a UARS diagnosis confirmed before I see him, I could go straight to "Given my personal nasal and mouth structure issues, what treatment do you recommend?"

The only options I am aware of (and these hold for OSA also) are: xPAP, oral device of one sort or another, surgery of various sorts, Provent, (soon?) Winx, um... What am I forgetting?

SleepingUgly wrote:The only options I am aware of (and these hold for OSA also) are: xPAP, oral device of one sort or another, surgery of various sorts, Provent, (soon?) Winx, um... What am I forgetting?

Nothing.

Actually, I think I already know what the outcome of my meeting with a UARS-experienced doctor will be. "Yes, septoplasty/bilevel/oral devices would improve your sleep somewhat, but not completely."

I hold out hope for tracheostomy. I want to feel RESTED, not just better.

1041 wrote:Actually, I think I already know what the outcome of my meeting with a UARS-experienced doctor will be. "Yes, septoplasty/bilevel/oral devices would improve your sleep somewhat, but not completely."

Why do you think they will say that PAP will improve your sleep somewhat, but not completely? I've never heard a doctor go into xPAP confident that it won't work.

I thought Dr. Guilleminault coined the term UARS precisely to distinguish a subset of sleep disordered breathing sufferers that were not responding to CPAP.

1041 wrote:I thought Dr. Guilleminault coined the term UARS precisely to distinguish a subset of sleep disordered breathing sufferers that were not responding to CPAP.

I've never heard that, and I've read a lot of his articles.

Can't find the quote. But I really get that impression, from all UARS researchers not just Guilleminault. Here is one mention:

In "Upper airway resistance syndrome: still not recognized and not treated" by Palombini et al, in the second to last paragraph it says "UARS patients usually tolerate nasal CPAP less and become quickly noncompliant."

"Upper airway resistance syndrome: still not recognized and not treated," by Palombini et al. refers to a study by Guilleminault et al. in 1995 where 98% of UARS patients "rejected [CPAP] as a long-term treatment modality." It also cites Rauscher et al. which studied UARS-like patients in 1995, and 19% out of 11 stuck with CPAP.

Are you tolerating CPAP, 1041?

Tolerating is the perfect word. I have no trouble using it, but it doesn't remove my fatigue. Sometimes it's almost TOO perfect how I fit the UARS mold.

1041 wrote:Tolerating is the perfect word. I have no trouble using it, but it doesn't remove my fatigue. Sometimes it's almost TOO perfect how I fit the UARS mold.

Is your CPAP data good? Is the CPAP disrupting your sleep?