The 12th Invest in ME Research Conference June, 2017, Part 2
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My very, very worst symptom is back :-(

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Dec 12, 2014.

  1. melamine

    melamine Senior Member

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    @Gingergrrl - I was reading some other threads here yesterday and notice your heart symptoms did begin at the time of EBV infection. Infections stress the adrenals and hormonal system in general, and if you were already adrenally stressed, for instance, which is not uncommon, and maybe additionally low on certain minerals, vitamins, amino acids, which is also not uncommon, a bad infection could tip things over the edge, causing chronic symptoms one would not expect from the infection alone. But never say never, I believe. Although a heart infection is the least likely cause, it is not one to be dismissed for that reason alone, but ruled in or out systematically as with every other potential cause. The cortisol test will give you a good foundation from which to assess things. I hope you had a more peaceful night's sleep last night and wish you luck getting the answers you need.
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @melamine Thank you for all your support and so far, Thank God, the tachycardia in my sleep has not returned. I am going to be doing a 24 hour saliva cortisol test as soon as I read all the instructions and figure out the best day to do it. I am also asking my Endo to re-do my entire hormone panel of tests that I had in Oct 2013 since so much time has passed to see where things stand now. My last thyroid test was Sept 2014 so I need to re-check that too. I appreciate everyone who send me messages re: Hashimoto's can slip into hyperthyroid and that is a really good point that I am going to ask my Endo about. I also am curious about low dose Cortef (if my tests show I need it which thus far have not.)
     
    melamine likes this.
  3. Gondwanaland

    Gondwanaland Senior Member

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    @Gingergrrl
    What I thought to be my thyroid hormone replacement turned out to be the PSYLLIUM husks I have been taking this whole week. It apparently is goitrogenic, and my immune system react badly to it. It's a pity, b/c it's the only stuff that helped my constipation so far. It gives me body pains, stiffness, and last Friday I took it just before bedtime and woke up in the middle of the night feeling that my head and chest were being pressured, pushed down against the bed underneath me, arritmia and pain in my shoulders/upper arms. Scary inflammation!

    I first blamed the new T3/T4, but then last night I skipped the psyllium and could sleep well the whole night.

    Now back to ground zero looking for something to help my constipation >sigh<
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    @Gondwanaland In my case, I still don't think my thyroid is behind the tachycardia b/c I had this symptom before I was on any thyroid meds and have had it after thyroid meds (when my TSH tested consistently at 1.0) every month. But I want to check all my Endo/hormone tests to be sure that nothing else is off or contributing to my overall feeling of getting worse. I still suspect my tachycardia is dysautonomia from the ME/CFS and virus itself combined with PEM and low blood volume.
     
  5. Gondwanaland

    Gondwanaland Senior Member

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    I suppose dysautonomia is a symptom from inflammation?
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    I honestly still do not know how to explain dysautonomia except that the virus did something to my brain (I guess inflammation?) that is causing my autonomic system to no longer regulate itself (heart rate, blood pressure, temperature, breathing, etc.) There are many dysautonomia websites that talk about post viral causes and in my case, this definitely applies. My cardiologist says it is all autonomic (and not a traditional cardiac problem) but nothing he has done yet has fixed the problem and I don't think it can be fixed until they figure out the mechanism of ME/CFS and get to the root cause.
     
  7. Gondwanaland

    Gondwanaland Senior Member

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    I hope you can find clues soon about how to address it :hug:
     
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  8. jimells

    jimells Senior Member

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  9. jimells

    jimells Senior Member

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    That's the fifty-million dollar question, isn't it?
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @jimells, if dyautonomia is caused by inflammation, then how do you treat it? I know I am supposed to drink fluids, take salt stick tablets, etc, but is there something else I should be doing? (Are these the same as the immune modulators or microglial inhibitors or something else?)

    ETA: This question is for everyone not just jimells!
     
  11. jimells

    jimells Senior Member

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    I apologize for not being clear. What I meant was, we don't really know what causes dysautonomia or how to treat it. As I understand it (and my understanding is very, very shallow) the term "inflammation" is so vague and used so loosely that it doesn't really tell us anything.

    I doubt that "dysautonomia is caused by inflammation" means that our brain is painful, hot, red, swollen, and tender, even though Wikipedia describes these as "the classical signs of acute inflammation". So what is "inflammation" in this context? I guess it depends on who's using the term.

    It's the fifty-million dollar question because if we know what causes and how to treat our dysautonomia, we could maybe have a life again.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @jimells You were really clear and I knew what you meant (and was not taking it literally!) but your response had me wondering if (even some part) of dysautonomia is caused by brain or body inflammation, then what supplements or meds do people take for this? Would it be something like turmeric or fish oil or the list of microglial inhibitors? I am still trying to sort out all the different categories of things and how they fit together.

    And this question is for everyone too!
     
    jimells likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Have you tried medical compression stockings? To top of my thigh ones (they were up to 32 pressure ones) only help me by about 15% which doesnt sound much but when one is at a very low level that being able to do 15% more is a big deal.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    @taniaaust1 I tried compression stockings in the past and never noticed anything but they were very tight and uncomfortable for me!
     
  15. Sushi

    Sushi Senior Member Albuquerque

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    The full compression stockings drove me nuts and were uncomfortable for me too. But I wear 80% cotton compression knee socks every day and they do help me a lot. I know our dysautonomia issues are not the same, but it might be worth a try. The place I buy from offers many styles and lets you return them within 30 days--for any reason.

    Sushi
     
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  16. Gondwanaland

    Gondwanaland Senior Member

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    @Gingergrrl I was reading this and thought of you. I hope you can get some insight from it!
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Yeah, I agree they are tight. They can take some time to get used too! so can feel very comfortable till a person gets used to them. I got blisters from mine .. and rubbing my knees too (which removed skin).

    They are also best used in conjunction with doing other things too.

    Pity you didnt notice anything from them. (my improvement with them is very slight but I take any improvement due to how bad the POTS is to me).
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi The only doctor who ever recommended them for me was my former cardio and she said to sleep in them. They were so tight I felt like they were cutting off my circulation while sleeping and I also was not physically strong enough to put them on or take them off by myself and they were a lot of trouble for no benefit (in my case!) What are they supposed to do?
     
  19. Sushi

    Sushi Senior Member Albuquerque

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    He was wrong! (as you have heard) You don't want to sleep in these things! :jaw-drop:

    They push blood back up to the heart and head (that is real science talking!:woot:

    Sushi
     
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  20. kisekishiawase

    kisekishiawase sad

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    Sorry for what youre going through. Im so fed up and hopeless of tachycardia palpitation attack n sleeping. :(
    Have been reading a lot about it , some people experience it and many possible cause from bp, o2, blood sugar, cortisol, hormonal(estro, progest, etc), gerd, thyroid, blood volume, dysautonomia, heart prob, b12, catabolism, etc2. The problem is correctly detect the cause, at least for me. Also many factors correlated with each other.
    Ive read the vagus nerve theory which is still confusing.

    I even google whats happening on your system when sleeping

    There were times i get palpitation, everytime i was doozing off. Got jolt/shock tachycardia in middle of sleeping.(started in 2010 and gone on 2012 then come back when i got worse) And pounding heart everytime after 6 hours sleep. Attack upon waking, etc, etc. Usually its excarbate when im in bad condition and decrease when im in better condition. I feel diet plays some role too. How about you?

    @Sushi To test for which dominance (sympathetic vs parasympathetic) is by TTT test?

    @melamine ive been reading about myocarditis and quite worry about it.
    does blood test, echo confirm for myocarditis? And does myocarditis cause heart issue constantly that isnt relieve by BB?
     
    Last edited: Jan 3, 2015

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