Julie Rehmeyer's 'Through the Shadowlands'
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Shortness of breath 24/7 : what would help ?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Dechi, Dec 8, 2016.

  1. anciendaze

    anciendaze Senior Member

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    @Dechi

    If your dyspnea responds to treatments for anxiety, that is one plausible answer, but what if it does not? I've already seen "air hunger" caused by antibodies to N-type calcium channels misdiagnosed as anxiety, and that is only one example. Frankly, suffocation is a great way to induce panic, as happens with waterboarding. It works both ways: anxiety => dyspnea, dyspnea => anxiety.

    Try to deal with the anxiety however you best can, but if these all fail, ask for tests of less common causes.
     
    Dechi and Zombie_Lurker like this.
  2. *GG*

    *GG* Senior Member

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    I am French. LOL From Canadian descent though :) I worked ill for 10 years, unless there is a lot more understanding, and I am not just working to live, I could not do much else but work. Quality of life was crap! Hopefully the money will be enough for me live ok on.

    GG
     
    Dechi likes this.
  3. Dechi

    Dechi Senior Member

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    @*GG* So am I. I am from Quebec, Canada ! ;-)
     
  4. *GG*

    *GG* Senior Member

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    Oh, is that where you live now?

    GG
     
  5. Dechi

    Dechi Senior Member

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  6. *GG*

    *GG* Senior Member

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    Ah, cool. Did you ever introduce yourself? Wondering more about your story? I cannot go to CA, don't have my passport any longer. Might get it in the future, when I have more money and am traveling some.

    GG
     
  7. Dechi

    Dechi Senior Member

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    @*GG* Yes, I introduced myself when I joined, 6 to 10 months ago, I can't remember.

    Let me know if you come to Canada (Montreal), we'll go for coffee and chat !
     
  8. nanciswell

    nanciswell

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    I have had constant air hunger for 40 years.. I was almost diagnosed with mitral valve prolapse as two doctors hear the clicking in my heart.. i went on coenzyme q10 and the echo showed nothing wrong . I then had to go off the co q10 as I was sensitivie to it.. I am about to go back on it as my food sensitiviites have been healed..

    Carnitine is another supplement great for the heart ..

    I do well with l-carnitine and not acetyl form .. Others do the opposite..

    I believe it is just from the overall stress my system is under.. Dealing with high heavy metals, glutamates which are excitatory can cause enough stress to make you always feel anxious..
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Dechi, I missed this thread the first time around and am curious if you still have the shortness of breath? I have what is called "orthostatic dyspnea" (in addition to POTS) and I have shortness of breath when I stand but I have never had it seated or lying flat. It is immediate, as in within seconds, (when it occurs) and I do not get PEM.

    I also showed ischemia on a treadmill test in Sept 2014 (about a month before I started using wheelchair) but the cardio at that time brushed it off as a "false positive". However, my other docs felt that it was not a false positive and that I do not get adequate blood to my heart and lungs when I stand.

    Midodrine is helping me again (it does not always work) and it seems to raise my core BP even when it does not always raise my BP on an arm-cuff. But the first real improvement of any kind that I have had to this symptom has come from IVIG (b/c we now believe that auto-antibodies are at the root of this entire illness, in my case).
     
  10. Dechi

    Dechi Senior Member

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    @Gingergrrl Sorry, I didn't see your question, just read your post now.

    Air hunger stopped after a while, I guess it was from PEM. It probably lasted 2-3 weeks. Now I still have it but on amd off. Sometimes it happens when I get up and walk arpund the house, or just from sitting. I can never really find a conclusive reason why. It's just there. It lasts a few minutes and it stops.

    How are you doing ?
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    Don't worry and I had forgotten all about the question! I think I was just wondering at the time if your shortness of breath was orthostatic/positional vs. supine or constant. If sounds very different from what I was experiencing and that it was just a temporary issue for you. Mine is greatly improved from IVIG (although not to the point that I can walk more than a few minutes at a time without wheelchair). But it is much better now along with my overall muscle strength. Thank you for asking!
     
    Dechi likes this.
  12. Dechi

    Dechi Senior Member

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    @Gingergrrl I am glad you're improving ! Slowly but surely, right ?
     
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  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The stress is immune mediated attack on our metabolic system, unfortunately, we are stuck in the wrong form of respiration that is from impaired glycolosis, this is why we can't exercise and basically poison the mitochondria by doing so and get slammed by producing even more oxidative stress, this form of inflammation by the way damages muscles, which is why we tend to have elevated or high normal levels of muscle enzyme markers when our muscles are 'worn out' in a crash, as we are literally 'cooking' ourselves at rest. It can also worsen blood volume.

    This is why graded exercise is a form of harm, you can prove it too with blood tests with a before and after blood draw. Before (pacing your day) and after (ignoring your body for days and engaging in GET until your muscles are on fire). With this evidence, you can sue your local health authority for recommending CBT/GET that harms you on a metabolic level. If you have severe ME, some of your muscle enzymes will be high normal, or high at rest even without any movement. Mine are.

    The pain and shortness of breath are physical, which is why we are plagued by it as our minds cannot reverse a cellular defect as this issue we have affects everything from brain function to cardiac output, blood flow, blood vessel elasticity. Taking supplements for those with deficiencies could help for sure, as could feasting on expensive, but useful ubiquinol (reduced form of Q10) at high doses (400-1200mg). High doses are shown useful in heart failure long term, as in a year plus, as it increases cardiac output (ejection fraction).
     
    Last edited: Jul 31, 2017
  14. Dechi

    Dechi Senior Member

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    @Research 1st Domyou know what exactly to look for in the blood tests before and after ? I know my lactate levels were normal, before and after exercise (no PEM).
     
  15. keenly

    keenly Senior Member

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    Look into thiamine and Dr Lonsdale.
     
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  16. willg

    willg

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    I suggest you look into Chronic Hyperventilation Syndrome (CHS), and take an online test, called a Nijmegen Questionnaire.
    CHS causes a wide range of symptoms, some very unexpected and bizarre (such as numb extremities, twitching upper lip, etc), as well as more understandable ones, such as tightness in the chest, air hunger, painful thorax, etc).
     

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