What is going on my most annoying symptom!

[Johnskip]

I agree with you and thankyou so much very informative

sinuses are definitely involved in this process I can feel like a lack of air going to the brain

 

[merylg]

The reason I ask is that there are many different reasons some people have trouble using CPAP. Most of them can be sorted out. Here are some potential reasons and fixes:

The mask is uncomfortable. Tighten or loosen the straps and reposition the hose, if that doesn't work try a different mask.

The mask leaks air and wakes you up. Tighten the straps and reposition the hose, tucking the hose under your pillow can help keep it from pulling to one side, if that doesn't work try a different mask.

You have trouble moving air through your nose. Use nose sprays, if that doesn't work, try a heated humidifier, the heated part is very important.

Air blows out of your mouth and wakes you up. Try using a chin strap, your home care company will have one. If that doesn't work, try the stuffy nose approach above.

If you've worked through all of the above approaches and you just feel like the pressure is too high, ask your sleep specialist about BiPAP or using a jaw advancement device with your CPAP and lowering the pressure.

I talk to a few people with Collagen Myopathy, (Bethlem & Ullrich type) and some have EDS & Collagen Myopathy. They seem to need to use BiPAP.

I've had a few sleep studies too including one at home. They say I snore but don't have sleep apnoea. I have weak connective tissue ?EDS and issues around cartilage degeneration plus a myopathy of some kind. Might be time to have yet another sleep study! @justy I also have a lot of mast cell issues.

 

[Gingergrrl]

Am curious, is there anyone who has trouble breathing exclusively when they stand but can breathe 100% normal when lying/supine or when seated? Am also curious if anyone in this thread w/breathing issues has taken a spirometry or PFT test and if so, are you able to pass this test? Thanks in advance.

 

[merylg]

Am curious, is there anyone who has trouble breathing exclusively when they stand but can breathe 100% normal when lying/supine or when seated? Am also curious if anyone in this thread w/breathing issues has taken a spirometry or PFT test and if so, are you able to pass this test? Thanks in advance.

I have trouble breathing when standing, seated & supine.
I have most trouble breathing on exertion.

In past I have had numerous Spirometry tests & the Pulmonary Function Tests in the box, plus bicycle ride tests. All normal except for a Histamine Challenge Test which showed 'mild asthma'.

I am interested to know who here has had a cardiac echo done? What was your ePASP? (estimated Pulmonary Artery Systolic Pressure)
Were your heart valves normal in structure & function?

My recent ePASP was high-ish and my tricuspid & pulmonic valves show 'minor incompetence'. Previously I had 'trivial mitral regurgitation'.

In past I had pressures measured OK on echo (even done by specialist in Pulmonary Artery Hypertension) & later even had an angiogram where pressures were more formally measured & were OK.

Forgot to say before that I had sinus surgery in past to remove a nasal polyp & to make a hole in bone to improve drainage. Plus I have a deviated septum.

More rently needed surgery to remove piece of tooth root from maxillary sinus! ...long story!

 

[Johnskip]

I talk to a few people with Collagen Myopathy, (Bethlem & Ullrich type) and some have EDS & Collagen Myopathy. They seem to need to use BiPAP.

I've had a few sleep studies too including one at home. They say I snore but don't have sleep apnoea. I have weak connective tissue ?EDS and issues around cartilage degeneration plus a myopathy of some kind. Might be time to have yet another sleep study! @justy I also have a lot of mast cell issues.

how do you know you have weak connective tissue?

 

[Johnskip]

I have trouble breathing when standing, seated & supine.
I have most trouble breathing on exertion.

In past I have had numerous Spirometry tests & the Pulmonary Function Tests in the box, plus bicycle ride tests. All normal except for a Histamine Challenge Test which showed 'mild asthma'.

I am interested to know who here has had a cardiac echo done? What was your ePASP? (estimated Pulmonary Artery Systolic Pressure)
Were your heart valves normal in structure & function?

My recent ePASP was high-ish and my tricuspid & pulmonic valves show 'minor incompetence'. Previously I had 'trivial mitral regurgitation'.

In past I had pressures measured OK on echo (even done by specialist in Pulmonary Artery Hypertension) & later even had an angiogram where pressures were more formally measured & were OK.

Forgot to say before that I had sinus surgery in past to remove a nasal polyp & to make a hole in bone to improve drainage. Plus I have a deviated septum.

More rently needed surgery to remove piece of tooth root from maxillary sinus! ...long story!

I had a cardio echo they said it was fine

 

[Johnskip]

how do you know you have weak connective tissue?

is there a test for weak connective tissue

 

[merylg]

how do you know you have weak connective tissue?

Clinical opinion of Integrative GP (thinks EDS). Clinical opinion of General Surgeon (suggested ?Mixed Connective Tissue Disorder & ?Hidradenitis suppurativa).

Opinion of a genetic counsellor based on family history & my symptoms (thinks EDS).

Seeing a Clin Geneticist about this soon.

 

[merylg]

is there a test for weak connective tissue

This is a massive topic & maybe needs it's own thread. You will find other similar threads already running. Yes there are tests but it is a specialised area.

Use 'Search' facility on here OR go to FORUMS then
Alternative, Co-existing or Missed Diagnoses