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What is going on my most annoying symptom!

Discussion in 'General ME/CFS Discussion' started by Johnskip, Mar 17, 2017.

  1. Johnskip

    Johnskip Senior Member

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    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 !!!!!!!
     
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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Sounds like obstructive sleep apnea syndrome. Go see a board certified sleep specialist for an evaluation. If you test positive there are effective treatments.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    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.
     
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  4. Johnskip

    Johnskip Senior Member

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    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
     
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  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    What bothers you about using the CPAP machine?
     
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  6. Johnskip

    Johnskip Senior Member

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    what is Mcas and how did you treat it?
     
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  7. Johnskip

    Johnskip Senior Member

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    couldn't breathe had to rip it off alot of nights!
     
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  8. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    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.
     
    merylg likes this.
  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    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.
     
    merylg likes this.
  10. lansbergen

    lansbergen Senior Member

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    I think you are right. I concluded that many years ago. Lately it is much better.
     
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  11. Johnskip

    Johnskip Senior Member

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    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
     
  12. Johnskip

    Johnskip Senior Member

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    thankyou for responding
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    Besides MCAS, you can also have SOB from POTS and neuromuscular weakness of lungs & diaphragm (but not sure if this pertains to the OP).
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Do you know if your PFT showed pulmonary restriction or obstruction?

    Sorry, "OP" means the "Original Poster" (who started the thread).
     
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  15. Mohawk1995

    Mohawk1995 Senior Member

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    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.
     
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  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    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.
     
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  17. Murph

    Murph :)

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    Like you I also couldn't breathe and I knew it wasn't anxiety.

    However, it was anxiety.
     
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  18. gregh286

    gregh286 Senior Member

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    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.
     
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  19. serusaert

    serusaert

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    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.
     
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  20. Johnskip

    Johnskip Senior Member

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    I agree with you and thankyou so much very informative
     
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