UARS -- bedridden for 1.5 years, sick for 3.5

[Okaythen]

My first symptom was profound fatigue that felt like it came on suddenly, after two weeks of severe work stress. This was back in early 2015. Subsequent sleep test revealed sleep apnea "characterized mostly by increased upper airway resistance." The microarousal index was 47, mostly induced by sleep disordered breathing. My RDI was 29. My condition slowly worsened until I became bedridden -- I currently spend about 80-90 percent in bed. Symptoms are debilitating fatigue, severe anxiety, and associated symptoms.

I have tried APAP and BIPAP, an oral appliance, and am currently on straight CPAP with a pressure of 7. I have been on XPAP for 2.5 years.

My sleep doctor is insistent that my sleep loss/condition is purely psychiatric in nature.

I've had a sleep endoscopy and it showed collapse at the tongue, soft palate, and epiglottis.

I have been hospitalized 4 times in psych wards, tried 17 different medications. Two months ago I underwent surgery for a trachestotomy. I tried the trach for 4-5 nights and woke up each morning with frightening symptoms -- legs numb, chest and whole body tight, heart racing. It was the poorest sleep I've ever had.

So I have predominately UARS.

Anyone care to guess what might be going on?

My conclusions, one of the following:

1) Chronic Fatigue Syndrome

2) Low arousal threshold with CPAP fixing obstructions but disrupting sleep

3) Somatization

[ChicagoGranny]

My sleep doctor is insistent that my sleep loss/condition is purely psychiatric in nature.

You should have immediately left him.

Two months ago I underwent surgery for a trachestotomy.

How did you come to have this? Was that sorry sleep doc involved?

What is the status now? Did you have the trach removed?

[Okaythen]

I have two appointments with two different sleep neurologists upcoming. Hoping to switch doctors.

Two different ENTs came to the conclusion that the trach would be worth trying.

I still have the trach but don't use it. Haven't had it removed yet. I just cap it off and use CPAP at night.

[ChicagoGranny]

I have two appointments with two different sleep neurologists upcoming. Hoping to switch doctors.

Good. Just be aware that UARS could cause all of these problems:

Symptoms are debilitating fatigue, severe anxiety, and associated symptoms.

That's not to say you don't need some psych help after all the trauma you have been through.

Good luck.

[greatunclebill]

stay away from the ent's and further away from the neurologists. find one good board certified pulmonologist that specializes in sleep medicine.

[Sheffey]

stay away from the ent's and further away from the neurologists. find one good board certified pulmonologist that specializes in sleep medicine.

That's bulldonkers.

My ENT did a wonderful thing for me - turbinate reduction and septum straightening. It was life changing.

And my sleep doctor is board certified in both neurology and sleep medicine. He is excellent and fully supports my use of Sleepyhead to manage my CPAP therapy.

[raisedfist]

I agree with uncle bill. In my opinion you would be best going to your nearest university teaching hospital. You probably to see someone board certified in both sleep medicine and pulmonology. I can't imagine doing a tracheotomy on someone prone to severe anxiety...unless every other option was explored and failed or if it was a medical necessity because of respiratory problems.

What machine are you using? If it's an APAP, have you tried running your machine in APAP mode instead of a fixed pressure?

It would be great to see your data from SleepyHead - there are a lot of smart people here that may be able to help you out.