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Difficulty breathing + feeling of "lump" in throat

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Mariah, Aug 16, 2015.

  1. justy

    justy Donate Advocate Demonstrate

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    are you in the UK? I saw a very unpleasant immunologist in Cardiff who made the original 'temporary mast cell activation' diagnosis, but am going on Thursday to see a professor in Southampton as it has got worse and I am never going back to the insultant in Cardiff that my GP speaks to about my case. The new Dr was recommended by someone in the Lyme community - its a private appt. If you would like I can PM you his name and let you know the outcome?
     
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  2. aquariusgirl

    aquariusgirl Senior Member

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    yes please do & good luck
     
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  3. maryb

    maryb iherb code TAK122

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    I hope the new consultant can give you some answers @justy, be very interesting to see what he says. Good luck with the journey, its a long one....hell every one is for us:)
     
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  4. justy

    justy Donate Advocate Demonstrate

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    Thanks Mary - unfortunately the Gamma Globulin has now caused an increase in itching so have stopped it until after I see the new allergy specialist. now I cant take the GG AND i'm back to itching 24 hrs a day and still on double dose anti histamines. Oh well. Onwards we go...
     
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  5. maryb

    maryb iherb code TAK122

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    Oh that b...dy itching, so wish you could get it to stop permanently. What a nightmare symptom, well aren't they all really.
    I have to now decide whether to go back to the cranio sacral therapist (who has a mouldy waiting room) on Thursday, do I risk my heart palps coming back for the sake of some improvement in my head pressure....decisions decisions.
     
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  6. Mariah

    Mariah Senior Member

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    @justy I`ll ask my doctor to do tests for the chlamydia infection, even though I don`t really think this fits any type of infection at all, but no harm i testing :). I must say I am skeptical to chronic Lyme as a concept, but at least I don`t have that. Before I got skeptical I was tested ;). I must say I`ve barely heard of mast cell activation before, and never knew much about it. Read a little bit about it now. I don`t have any rashes, allthough it seems you don`t need those for the syndrome. It just doesn`t fit all the other allergenic-like symptoms, I have none of those. I would think this is "just" a symptom of my ME, since I`ve had it varying in intensity from the firsts sign of my ME began to show till now. I believe my ME is pretty autoimmune i nature. Wishing you luck, and hope that you find the answers you need! Thanks for the suggestions! :)
     
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  7. alkt

    alkt Senior Member

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    i like the way you spelled consultant seems a lot of people would spell it that way. best wishes.
     
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  8. aquariusgirl

    aquariusgirl Senior Member

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    @maryb, what's the head pressure? My mom has suffered from that for years ...
     
  9. daisybell

    daisybell Senior Member

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    @Mariah have you ever been assessed for something called paradoxical vocal fold movements?
    It can present with severe shortness of breath and globus. It occurs when your vocal folds in your voice box don't open wide for you to breathe in, but sit too close together. This means that you feel that you can't get any air in....
    It's usually related to reflux but not always. If you think that might be a possibility, I would consider an ENT referral or asking for a referral to a voice therapist....

    Just thinking aloud here really!
     
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  10. maryb

    maryb iherb code TAK122

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    @aquariusgirl
    its constant but worse when I lie down which neurologist and physio say is related to inflammation coming from the spine. I went away after a month on IV Rocephin (some abx also reduce inflammation) but its back with a vengeance at the moment. Always worse when I'm not good.
     
  11. maryb

    maryb iherb code TAK122

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    I agree with @daisybell - my ENT did a vocal cord check and also the throat area with a small camera, totally painless, and to boot he was the nicest consultant I've ever met:) Just found some inflammation though in my case.
     
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  12. MadeleineKM

    MadeleineKM Senior Member

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    Sounds similar to my problem. I have lyme and low vegf and high calcium in the blood which can make these symptoms. My troat and tongue also get without feeling and then I cant swallow, this makes it even harder to breath. Hope you will become better:)
     
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  13. MadeleineKM

    MadeleineKM Senior Member

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    Forgot to write that the airhunger became better on Cefuroxime
     
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  14. Mariah

    Mariah Senior Member

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    @daisybell I was actually just at a ENT doctor about two months ago for something else. I didn`t mention this, cause it didn`t bother me that much at that moment. He did look down my throat, but only the way my physician would. So I doubt I would get another referral so soon. How would they go about finding out if this was the case, and would there be anything to do about it?
     
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  15. daisybell

    daisybell Senior Member

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    The only way to be sure is to have a proper look with an endoscope with stroboscopy. When I used to work in this area, the team would get people to do things that triggered symptoms and then have a good look.

    You could perhaps try a speech language therapist first, and then they might refer on to ENT for further evaluation. There are some strategies that help manage the condition if it is what is happening....
     
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  16. Mariah

    Mariah Senior Member

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    Read a bit about it now @daisybell , as I had never heard about it. It seems like the condition you are describing entails more attack-like breathingdifficulties and asthma-like symptoms and sometimes wheezing. What I have is non-stop and is there all the time, and it doesn`t come in "waves" or attacks.
     
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  17. Mariah

    Mariah Senior Member

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    Having a bad spell of this lump/tightness feeling in my throat and difficulty breathing again now, complete with some air hunger and the need to hyperventilate a lot. Trying to breathe with my stomach which helps some. Hard getting to sleep when you are concentrating on breathing and at times gasping for air. My problem does not better itself with lying down, so allthough I also have some breathing difficulties with OI/POTS (whatever it is), I don`t think it originates solely from that. I am quite sure it is neuromuscular in nature as @lansbergen pointed out in an old comment in this thread, as I am having a bad spell with muscle weakness and pain in my whole body atm, especially the torso, both back-and stomach muscles. Seems like the throat muscles just won`t relax, is cramping or is relaxing too much. Heck if I can tell. Will ask my ME-doctor when he calls me in a couple of weeks if there are any drugs I can try to relieve this. My experience is that for me it usually get better with time, but not sure if I can cope through it drug-free this time as it is really bad.
     
  18. lansbergen

    lansbergen Senior Member

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    In my opion the neuromusclar problems are caused by an immuneresponse to an infectious agent.

    My improvement accelerated. The bad spot on the back of my torso heals along the arch of the rib in the direction of the sternum. I can clear my lungs and can breath much easier now..
     
  19. Mariah

    Mariah Senior Member

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    Quite sure I don`t have an infection @lansbergen. I think this is just a prominent symptom of my ME, whatever "ME" is. I think mine is autoimmune, but I guess we will know in time. Glad to hear you are feeling that much better! :)
     
  20. ArunP

    ArunP

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    Hey Mariah,

    For background take a look at my story - the link is in my signature.

    I have similar symptoms. I have difficulty breathing and an inability to breathe through my mouth. And I do feel like there is a small lump in my throat. The lump clears if I inhale steam, it feels like it dissolves with the heat. Although it quickly comes back as soon as I stress even a little. (Have you treid inhaling steam? Does it temporarily lessen that lumpy feeling. Works better if you use those carvol tablets. )

    I have difficulty swallowing too. So there are muscular issues too. To make things worse I have nasal polyps and spasmy feeling in the sinuses that make it harder for me to breathe through my nose. And that coupled with not being able to breathe through my mouth has be short of breath for the whole time. It gets harder to breathe if I lie down. I have a chest spasm too. So breathing through the mouth makes that worse. So I never breathe through my mouth.

    I think there might be issues of asthma, autoimmunity and muscular weakness involved. I've been to the pulmonologist and the cardiologist. But nothing came up. I've been to the ENT too but not have had a throat inspection or a scan of my sinuses. I'll be doing that in the next week. Will keep you updated if anyhting comes up.

    Right now, I'm having a terrible time eating. I am eating so much less now than earlier. For the record Clonazepam eases my swallowing and breathing troubles. So mine is a lot muscle weakness related but there is undeniably an autoimmune asthmatic component here.

    Regards,
    Arun, India.
     
    Last edited: Feb 4, 2017
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