Can anyone recommend a sleep doctor in St. Louis or KC?

[cherylann]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

[Stormynights]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

You have been trying for 2 years. How hard should it be? Good luck finding a doctor. I think your best bet is Dr. Pugsy. Best wishes. (I can see how this looks. I am so sorry.) Note to self, don't post when you have a headache.

[49er]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

You have been trying for 2 years. How hard should it be? Good luck finding a doctor. I think your best bet is Dr. Pugsy. Best wishes.

Wow, nothing like a judgmental response to someone who simply wanted a recommendation for a sleep doctor and who has had the courage to persevere for two years. She is the ultimate example in not given up on pap therapy but yet is getting slammed. I guess you are perfect and have never struggled with anything.

49er

49er

[avi123]

I would look for a physician at the Barnes-Jewish Hospital/Washington University for a Neurologist MD who also holds an MD in Sleep Medicine. This Hospital is # 9 nationally in Neurology & Neurosurgery:

http://health.usnews.com/best-hospitals ... ty-6630930

and

http://www.barnesjewish.org/neuroscienc ... leep-apnea

[Stormynights]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

You have been trying for 2 years. How hard should it be? Good luck finding a doctor. I think your best bet is Dr. Pugsy. Best wishes.

Wow, nothing like a judgmental response to someone who simply wanted a recommendation for a sleep doctor and who has had the courage to persevere for two years. She is the ultimate example in not given up on pap therapy but yet is getting slammed. I guess you are perfect and have never struggled with anything.

49er

49er

I am so sorry my response came out the wrong way. What I meant was that the doctors comments were wrong. It is obvious she has been trying. I deeply apologize for saying it the wrong way. I would never slam anyone that is struggling. Thank you for pointing out my mistake.I meant my comment to be supporting.

[49er]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

You have been trying for 2 years. How hard should it be? Good luck finding a doctor. I think your best bet is Dr. Pugsy. Best wishes.

Wow, nothing like a judgmental response to someone who simply wanted a recommendation for a sleep doctor and who has had the courage to persevere for two years. She is the ultimate example in not given up on pap therapy but yet is getting slammed. I guess you are perfect and have never struggled with anything.

49er

49er

I am so sorry my response came out the wrong way. What I meant was that the doctors comments were wrong. It is obvious she has been trying. I deeply apologize for saying it the wrong way. I would never slam anyone that is struggling. Thank you for pointing out my mistake.I meant my comment to be supporting.

Thanks Stormy for clarifying and my apologies for jumping the gun and not asking for clarification. Obviously, my frustration with my own struggles with pap therapy was reflected in this response.

49er

[SleepingUgly]

I will PM you a recommendation.

[Pugsy]

For anyone wondering...I have tried to help CherylAnn in the past. Long history there but if a person can't sleep with the machine on for any length of time then it is real hard to be able to do much. We pretty much exhausted my meager ideas on how to help.
We thought bilevel might help her adjust to the pressures but it didn't work out.
Gotta get the sleep first...and if that can't be done it really makes for a difficult situation.

But I do have one idea for Cheryl to try...can you normally breathe through your nose okay during the day and is the only time you can't breathe through your nose (and nasal mask) at night? If so try this...take your fingers and press them gently along side the bridge of your nose at the turbinates area where the nasal mask sits and apply pressure simulating the pressure that the nasal mask puts on the turbinates. Apply that pressure for a few minutes...does your nose become congested? If so...does it rather quickly become uncongested when you remove the pressure?
For some people the pressure of the mask will cause congestion and thus create a real rock and a hard place to be in between.
This is why I can't tolerate any mask that fits over the bridge of my nose. The least little pressure on those turbinates totally blocks off my breathing with congestion. Takes me about 2 minutes to go from breathing freely through my nose to it feeling like someone stuffed cotton balls up my nose. Takes about 2 minutes to go back to breathing freely when the pressure from any nasal mask is removed.
If the pressure of the mask itself is part of the problem...gotta find a mask that doesn't cause that pressure.

Oh BTW..my sleep doc...has the personality of a toad but his PA is awesome. I don't know if she (the PA) might help or not but she can think outside the box...the doctor himself...I don't care if I ever see him again.

[Wulfman...]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

Hi Cherylann.

What humidity level(s) have you used/tried?

I've had similar problems all my life with nasal breathing (possible enlarged turbinates and deviated septum). After learning more about that as I progressed through this therapy, I was angry that neither my family doctor or sleep doctor didn't even ask me if I could "breathe" through my nose or suggest a trip to an ENT.
However, within a short period of time, I found that by using cool "passover" humidification and a full face mask, my nasal passages liked that combination and I could breathe very well at night. I found out early on that too much warm, humid air had the opposite effect with this therapy. So, when I see posts that reflect some of these similarities, I try to suggest a different option.


Den

.

[chunkyfrog]

DH gets bad nasal congestion with any nose pinching from a mask.
He has gotten great relief from Breathe-Right Strips, worn under the mask.
Make sure the top of your nose is very clean, and remember the "off" brands don't adhere worth crap.

[SleepingUgly]

If you can't breathe well through your nose even during the day (even if it's worse at night), consider a consult with an ENT (and an allergist if you have allergies).

[josh816]

DH gets bad nasal congestion with any nose pinching from a mask.
He has gotten great relief from Breathe-Right Strips, worn under the mask.
Make sure the top of your nose is very clean, and remember the "off" brands don't adhere worth crap.

Agree with Breathe Right. For me the Extras are a nightly necessity, even after nasal surgery (septum repair, balloon sinusplasity, amd terbininate reduction). For me, the off brands do not stick and the Extras are very superior to the advanced or standard.

[Stormynights]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

You have been trying for 2 years. How hard should it be? Good luck finding a doctor. I think your best bet is Dr. Pugsy. Best wishes.

Wow, nothing like a judgmental response to someone who simply wanted a recommendation for a sleep doctor and who has had the courage to persevere for two years. She is the ultimate example in not given up on pap therapy but yet is getting slammed. I guess you are perfect and have never struggled with anything.

49er

49er

I am so sorry my response came out the wrong way. What I meant was that the doctors comments were wrong. It is obvious she has been trying. I deeply apologize for saying it the wrong way. I would never slam anyone that is struggling. Thank you for pointing out my mistake.I meant my comment to be supporting.

Thanks Stormy for clarifying and my apologies for jumping the gun and not asking for clarification. Obviously, my frustration with my own struggles with pap therapy was reflected in this response.

49er

You did absolutely the right thing. I didn't go back and read what I wrote until I saw your responce. I was shocked by what you said until I read what I actually wrote. No need for you to apologize.

[avi123]

I've been at this for two years and it is just getting worse. I simply cannot tolerate the CPAP therapy. I have seen doctors in Tulsa and Dallas - both pulmonologists and so-called "sleep specialists". I have tried several different masks but at best I can tolerate it for 3 hours a night and that is very rare. They have adjusted my pressure all over the place and I went from a CPAP to a BIPAP and now back to a CPAP. I first started with nasal masks, but when ENT said my nasal passages were too narrow to breathe through my nose, I switched to full face. Now, doctor has put me back on nasal mask and it is an absolute nightmare. I cannot breathe through my nose and I don't know why she can't grasp that. All anyone tells me is that I'm not "trying" hard enough.

Sorry to rant and rave, but I have got to find a doctor who can figure out what is going on. I live in Tulsa so STL or KC are easy options for me, but I will go anywhere I can get some help.

thanks.

Comment,

If nothing is wrong with your nose anatomy then there are lots of mask possibilities to go on your nose. Even if you can't use your nose for breathing then there are masks to go on your mouth only or full face masks, or total face masks. Even if you can't use either your nose or your mouth then a tracheostomy is in order.
See it here:


http://www.thoracic.org/clinical/critic ... throat.php

Even if Tracheostomy is not in order your body could be put in an "Iron Lung" for breathing. You just need to take it easy and explain your situation. I have never seen your posts before and don't understand the issues.