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What is going on my most annoying symptom!

Johnskip

Senior Member
Messages
141
I wake up with an out of breath feeling it's awful It feels like i cant get enough air through my neck up to my brain! I'm thinking it's definitely not proper gas exchange it doesn't happen every night but alot I hate it! And no it is not Anxiety !!!!!!!
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Yes sleep apnoea is a possibility, as is asthma or MCAS. I didn't realise for ages I had MCAS and had a lot of breathing issues. It wasn't until I started having more severe symptoms and got some meds for it that I realised the breathing issues had gone too.
 

Johnskip

Senior Member
Messages
141
Sounds like obstructive sleep apnea syndrome. Go see a board certified sleep specialist for an evaluation.
Sounds like obstructive sleep apnea syndrome. Go see a board certified sleep specialist for an evaluation. If you test positive there are effective treatments.
Sounds like obstructive sleep apnea syndrome. Go see a board certified sleep specialist for an evaluation. If you test positive there are effective treatments.
thankyou so much for responding I had a test a while back they said I have mild sleep apnea I have the machine could not get used to it and still ran into same problem but I guess I will get another study done thanks
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
thankyou so much for responding I had a test a while back they said I have mild sleep apnea I have the machine could not get used to it and still ran into same problem but I guess I will get another study done thanks
What bothers you about using the CPAP machine?
 

Johnskip

Senior Member
Messages
141
Yes sleep apnoea is a possibility, as is asthma or MCAS. I didn't realise for ages I had MCAS and had a lot of breathing issues. It wasn't until I started having more severe symptoms and got some meds for it that I realised the breathing issues had gone too.
what is Mcas and how did you treat it?
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
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.
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
couldn't breathe had to rip it off alot of nights!
See my last 3 suggestions. If they don't work, it is possible that the pressure on the CPAP is set too low, if that is the case you could still be having some apnea and a reevaluation by your sleep specialist would be in order. That's any easy fix.
 

Johnskip

Senior Member
Messages
141
I think you are right. I concluded that many years ago. Lately it is much better.
I definitely think it's gas exchange because I do have the shortness of breath issue no matter what I do but it most prevalent at night when my body is trying to recover and I also think if I rested all the time I would not have this problem
 

Johnskip

Senior Member
Messages
141
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.
thankyou for responding
 

Gingergrrl

Senior Member
Messages
16,171
Do you know if your PFT showed pulmonary restriction or obstruction?

Sorry, "OP" means the "Original Poster" (who started the thread).
 

Mohawk1995

Senior Member
Messages
287
Since CPAP has been recommended, that seems like the most likely culprit. I wear one with the "Nose Pillows". I don't think I could tolerate any other kind of mask. It also has the heated humidifier integrated into it. Works well for my sleep apnea and I have a lot fewer bruises from my wife elbowing me in the middle of the night LOL!

Also since it appears that sleep architecture is dysfunctional in most ME/CFS patients, adding sleep apnea to the process can only make that worse.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I've had instances recently where I've woken up choking and couldn't get my breath. I have a narrow throat and have severe sleep apnea but these choking episodes only started recently before a new diagnosis of hypothyroidism. It's possible since hypothyroidism can cause the tissues around the throat and neck to swell that the choking is related to hypothyroidism.

I have a CPAP machine but I wasn't using it the times I choked.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I wake up with an out of breath feeling it's awful It feels like i cant get enough air through my neck up to my brain! I'm thinking it's definitely not proper gas exchange it doesn't happen every night but alot I hate it! And no it is not Anxiety !!!!!!!

Most likely air hunger. Like you can't get a satisfying deep breath. There is a specific name for it.
Fairly common cfs symptom but one of the most annoying.
 
Messages
79
Location
Seattle
air hunger is classified as a type of pain in some systems.

the discussion here is interesting - it's from an angle i don't know very well as my breath and sleep issues are not related to apnea but are instead caused by sinus blockage and PEM and i am listing my issues and how i deal with them here in case they apply:

1. asthma
2. tendency to over-breath and hyperventilate during PEM episodes
3. enlarged turbinates and deviated septum
4. bacterial/yeast overgrowth during PEM that pinches off my sinuses
5. seasonal allergies that clog my sinuses

this is how i am dealing with it:

1. practice buteyko breath exercises - this really works btw - just focus on elongating the pause between breaths. it really pays off!
2. i had surgery to reduce turbinates and reshape septum three weeks ago. it gave me awful PEM but now that's passed, i'm really glad i had it done - i breath much better.
3. flonase - nasal steroid when allergies are active - used to take all the time and now after surgery, only during allergy seasons.
4. breatherites - i have stopped using these since the sinus surgery
5. sinus rinse - the netti pot or the canned saline solution - this also really pays off.

i realize that this does not apply to apnea - but many people have both apnea and sinus issues. in fact, it's not possible to get a good test for apnea performed while sinus issues are in play.

and i want to bring up one more possible issue: sleep paralysis. i have this occasionally too and it can can cause the feel of suffocation as well as panic and odd hallucinations. there are enough statements in the above posts that could be seen as consistent with sleep paralysis so i thought i would mention it as a possibility.
 

Johnskip

Senior Member
Messages
141
air hunger is classified as a type of pain in some systems.

the discussion here is interesting - it's from an angle i don't know very well as my breath and sleep issues are not related to apnea but are instead caused by sinus blockage and PEM and i am listing my issues and how i deal with them here in case they apply:

1. asthma
2. tendency to over-breath and hyperventilate during PEM episodes
3. enlarged turbinates and deviated septum
4. bacterial/yeast overgrowth during PEM that pinches off my sinuses
5. seasonal allergies that clog my sinuses

this is how i am dealing with it:

1. practice buteyko breath exercises - this really works btw - just focus on elongating the pause between breaths. it really pays off!
2. i had surgery to reduce turbinates and reshape septum three weeks ago. it gave me awful PEM but now that's passed, i'm really glad i had it done - i breath much better.
3. flonase - nasal steroid when allergies are active - used to take all the time and now after surgery, only during allergy seasons.
4. breatherites - i have stopped using these since the sinus surgery
5. sinus rinse - the netti pot or the canned saline solution - this also really pays off.

i realize that this does not apply to apnea - but many people have both apnea and sinus issues. in fact, it's not possible to get a good test for apnea performed while sinus issues are in play.

and i want to bring up one more possible issue: sleep paralysis. i have this occasionally too and it can can cause the feel of suffocation as well as panic and odd hallucinations. there are enough statements in the above posts that could be seen as consistent with sleep paralysis so i thought i would mention it as a possibility.
I agree with you and thankyou so much very informative