The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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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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    Hi @kisekishiawase - I am sorry you are experiencing such uncomfortable and frightening symptoms. I know how stressful it can be and that is not going to help. I lack expertise to truly answer your question. I am only reporting from my experience with being very symptomatic in different ways at different times, but no matter what the cardiac symptoms or how acute they were, not even during a period of low grade infection, over a period of several years my echos were always normal.

    Did you take a look at the link Gondwanaland posted above? (this) It offers some good information for evaluating your symptoms from the perspective of mineral balance. Except where there is a clear endocrinological or other cause, doctors are not likely to want to investigate beyond one or two general tests unless you can persuade them with some kind of evidence, why they should.

    This information is written for the general public and represents the standard approach to evaluating myocarditis:
    http://www.myocarditisfoundation.org/about-myocarditis/ -
    • An Electrocardiogram
      Electrical activity of your heart is detected by electrodes taped to your skin. This activity is recorded as waves that represent the electrical forces in the different parts of the heart.

    • A Chest X-Ray
      A chest X-ray produces an image on film that outlines your heart, lungs and other structures in your chest. From a chest X-ray, your physician learns information such as the size and shape of your heart.

    • An Echocardiogram (abbreviated echo)
      Sound waves (too high-pitched to be heard) are used to make an image of your heart or analyze blood flow. The sound waves are sent into your body from a transducer, a small plastic device. The sound waves are reflected back from internal structures, returning to the transducer and producing images of the heart and its structures.
    • Less frequently, a cardiac magnetic resonance imaging (MRI) scan may be done to diagnose myocarditis. An MRI creates images using a magnetic field and radio waves.

    • Occasionally, a heart biopsy is required to confirm the diagnosis.
    My impression is that most cardiac testing is designed for cardiovascular-related problems, and in the case of certain kinds of heart failure, the interpretation or test methods are skewed in the direction of signs of it in men rather than women. Other tests tend to be mostly useful for long-standing and acute presentations, so unless you present in an acute state in ER - preferably unconscious if you want a diagnosis, it can be difficult to get necessary tests when (inappropriate) preliminary ones are normal and are used as a reason for no further testing. If you are experiencing symptoms that without a diagnosis and treatment will eventually lead to structural damage to the heart that has not yet happened, even tests to diagnose structural damage are more likely to appear normal.

    Not being able to be tested during worst symptoms may be one of the problems. Have you used a Holter? That did not show anything for me, but I recall not being symptomatic during the time I was using it. Maybe it would have made a difference.

    Regardless of the cause, getting the minerals you need and electrolytes balanced can help prevent things from getting worse and maybe even improve or resolve your worst symptoms, so I would still consider that as a starting point while waiting to see any doctors you might choose to see.
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    There may be other ways but that is the way I was tested.

    Sushi
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @kisekishiawase I am sorry I didn't get to respond to your msg yet or to this thread. I wish I had the answers but it seems that the tachycardia in my sleep (in my case) is from dysautonomia. It was my very first symptom of this illness in Jan 2013 (about ten months after having severe mono) and following a second virus that I now suspect was the re-activation of the EBV.

    I was initially diagnosed with IST and then with POTS but now it is more of an all over the place dysautonomia with low BP, low blood volume, shortness of breath and nothing regulating as it is supposed to. I am seeing my cardiologist tomorrow for follow-up and still trying to figure out if I am having microvascular angina (spasms) as part of the illness.

    In general Atenolol controls my tachycardia and I have not had another episode of the extreme tachycardia in my sleep since I started this thread. I have had two episodes in my sleep where it went up to around 105 or 110 bpm but thank God none of the episodes where it goes up to 160's or 170's. Those are brutal and I do not wish them on anyone! I have increased my Atenolol dosage to a 1/2 pill (12.5 mg) both AM and PM and this is helping as well.

    I hope this answers your questions re: my experience and sadly, I don't have any more specific answers than this! I wish you the best of luck in your search.
     
  4. kisekishiawase

    kisekishiawase sad

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    @melamine Hello :)
    Yes ive read that article before im not really good with trial and see method i think the best way is to correctly measure(not with serum) it but i cant.
    I was worried about myocarditis and wonder if ecg, echo, blood test are enough to detect it?
    Ive got holter 24hours but no useful findings.
    @Sushi thanks :) i thought TTT only check for hr and bp?
    @Gingergrrl i hope youre feeling better :angel:
    You say you also get palpitation when supine? Also how long does the episode last and is there a trigger?
    Ive been on a trial of some different types BB from the first generation non selective till the last generation selective one. i found them got different effect. Its great that BB helped you. :) I got varied result.
    I wonder if pathogen caused me this issue :(
    Or is it my heart. Or both overlapping.
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    A TTT done by an autonomic specialist will check for many things. I think I had about 6 different types of autonomic tests during the TTT, plus a short upright tilt (10 or 15 minutes?) and a long one (until you show clear symptoms--often about 30 - 45 minutes). An electrocardiogram is running during the whole procedure.

    Sushi
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @kisekishiawase Thank you and I had my follow-up appt with my cardiologist today and will post more about it tomorrow. It is 2 am here and I need to try to go to sleep soon. I actually do not get tachycardia when supine and lying down (awake) is the only time I can breathe totally normally. I was however getting tachycardia during REM sleep and we still don't know why except that it was an autonomic problem that is Thank God controlled very well by the beta blocker, Atenolol (in my case.) I do believe a pathogen (EBV in my case) triggered the ME/CFS and dysautonomia to begin with b/c I had never experienced this in my life until after having mono.
     
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  7. Awags1986

    Awags1986

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    I'm not sure how things are going for you now with this particular symptom, but I honestly feel like this is also my most debilitating symptom. My symptoms started acutely about 6 months ago, and from the onset I have had a resting heart rate of at least 100. It goes up to 170 if I even walk (no syncope though, or blood pooling) my BP ranges between normal and slightly to moderately elevated. I have such a laundry list of symptoms I can't even begin to describe them all, but being jolted awake with my body being completely rigid, and my heart pounding, with tachycardia (150 ish) all night long for days in end is making me insane. Some nights I have myoclonus wake me up literally all night as soon as I fall asleep(when this happens my heart rate stays around 100) and other nights I fall asleep, and then have terrible dreams, wake up with my body being very rigid, and with tachycardia(150bpm)and extreme palpitations. This happens all night! I sometimes get 1-2 hours of sleep, and have gone night without. Ring able to sleep at all...I sometimes also feel very nauseated when I wake up, and occasionally have tinnitus as well. It usually only last a few days, but has been happening more frequently now :( It seems you have experienced something very similar and I was wondering after a few years how things are going for you in this department. I also want to mention my chest gets VERY sore after the first few jolts awake. I had a ekg, ecg, and stress test done, by they came back normal. I wore a 24 he holter, but of course was not symptomatic that night at all :/ any insight would be beyond appreciated.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    @Awags1986 This thread is almost two years old (when I started it in Dec 2014) and I actually have not had the tachy in my sleep in about 2 years. I take 12.5 mg of Atenolol AM and 12.5 mg PM in case this helps. I truly do not know why this symptom started my entire illness in Jan 2013 or why it finally went away. I wish I could be more helpful!
     
  9. Awags1986

    Awags1986

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    Thank you for letting me know that there potentiallybis hope that this isn't permanent. I need to talk to my cardiologist because every time I bring it up with my GP he says it's just anxiety....of course.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I wore a monitor at least four separate times called a "Zio Patch" and it captured the episodes of tachycardia, both in my sleep and when I was awake. When you are awake, you press the button on the patch and record the details in a book, but even if you are asleep, the recording is automatic. It captured the tachy in the 160's and 170's which was undeniable proof that it was real, and that it was all in sinus rhythm (but it did not explain WHY it was happening). Once I got the POTS diagnosis, things made more sense to me. Although in general, I still have great confusion about my illness and suspect that I always will.
     
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  11. Awags1986

    Awags1986

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    One last question if you don't mind...would this symptom last several days for you? My resting HR is always around 100, but the days where I get woken up every time I drift off last for days(3-4 on average), and eventually it feels like my body doesn't even have the energy to produce tachycardia so by the second or third day I just get woken up, but my heart rate is still 100....at that point I can't even describe the feeling that wakes me....i get almost a rush through my body and my eyes pop open. I'm at that point now after sleeping maybe a total of 1 hr in the last 8 hours. That's broken up into 10-20 minute intervals. I went to the ER once for this and they said it was anxiety and gave me Valium. I took it and it only allowed me to sleep for an hour..then my body just kept popping me awake again. Eventually I feel my body calm down, and I know the next night I will be able to sleep, but I have no clue as to why my body is dousing this...as I know you understand.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @Awags1986 my resting HR is in the 60's and 70's but this symptom was constant in 2013 until I started the beta blocker, Atenolol.
     
  13. Learner1

    Learner1 Professional Patient

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    @Gingergrrl Being somewhat familiar with your story, but not wanting to put words in your mouth, weren't many of your POTS symptoms caused by your autoantibodies that came out of the vital illness? And then treatment with IVIG and Rituximab have helped you resolve the antibodies, and therefore, the POTS symptoms?

    This is the progression our doctor has explained to me.

    @Awags1986 Have you been tested for antibodies that could be causing the tachycardia or looked into other immune system irregularities causing problems in your autonomic nervous system?

    My POTS symptoms seem to be improving as I go through IVIG treatment, which my doctor thinks is working on resolving the adrenergic antibodies we found. They're not gone, but I'm only a little way into treatment, but I'm hopeful.
     
  14. Awags1986

    Awags1986

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    I haven't, and my doctor has just told me he won't run any other tests until I see psych. This has all been so hard :( I haven't even had a TTT done because my doctor wouldn't order it and m insurance declined me doing it at the Cleveland clinic...luckily my allergist (Mast cell literate) ordered it so fingers crossed I can get that ordered...I may call my doctor Monday and talk about autoantibodies. What kind of specialist would I need to have run those tests? Immunologist?
     
  15. Awags1986

    Awags1986

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    Also, did you experience sleep disruption like this as well?
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Don't worry and you are not putting words in my mouth! But the time sequence is a little different than you described. I developed IST (inappropriate sinus tachy) and POTS within two weeks of the final viral illness in Jan 2013 (which was ten months after having severe mono). I don't believe that I had the autoantibodies yet, although no way to no for sure b/c I was not tested for them until 2016.

    The tachy in my sleep, which was in the 160's and 170's and was pure torture, was in Jan 2013 and stopped when I was put on the beta blocker (first Metoprolol but later switched to Atenolol). With the beta blocker, I was able to continue working full time until Feb 2014 (another full year) until I developed severe shortness of breath and muscle weakness and could no longer walk from my car to my office.

    I did not begin IVIG until July 2016 (about 2.5 yrs later) and did not start Rituximab until July 2017 (about 3.5 yrs after developing POTS and my entire autoimmune chaos of an illness). If IVIG and Ritux had been offered to me 2-3 yrs earlier, I really do not know if it would have helped at that time b/c my illness was initially viral (and I was IgM+ for EBV and other viruses for several years until my doctor believes they shifted into auto-immunity).

    So, ultimately, yes, my doc believes I have "autoimmune POTS" (and the core of my illness is now autoimmune) but I don't think it started out that way. And the beta blocker alone stopped the tachy in my sleep 3 yrs before IVIG and 4 yrs before Rituximab. But I still had POTS and later developed severe MCAS (2015) and a lot of what I was doing was just symptom control, vs. now I believe I am getting at the root cause.

    Edit: But without the symptom control, my life would have been pure hell. I searched from Jan 2013 to July 2014 to find my current doctor who ultimately figured out a plan that has helped me. But the beta blocker is still part of the plan and imagine that I will be taking it lifelong.

    I hope this made sense!
     
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  17. Awags1986

    Awags1986

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    Yes, and thank you so much for sharing. My onset was very acute and the tachycardia/pots symptoms were at the onset. However, I'm not exactly sure what caused my crash. I had been on 4 rounds of abx for a group b strep infection in my bladder and uterus, and had been off of those for about 2 weeks. I had also been on methylation supplements for 2.5 weeks prior as well (though I didn't know anything about methylation at the time, and they had been given to me by a naturopath for my fatigue) I wish I knew what it was that caused this crash....it also has brought with it depression and anxiety which I never had felt in my life prior. I'm amazed how everything can change in an instant...
     
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  18. Learner1

    Learner1 Professional Patient

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    Thank you so much for explaining!! It does seem that the original illness may have started the ball rolling for the autoimmune issues, just as our doctor explained, and I heard again about at the OMF Symposium.

    And, as I've been doing my own investigation of solutions, it does seem that there are treatments that offer symptom control which more doctors are familiar with, vs. those that offer the hope of a cure by impacting the toot cause.

    Its easy to get caught in managing the day to day symptoms which can be serious and inconvenient, but its worthwhile to figure out the root problems and reach for answers to fix them, which can be very challenging.

    It's inspiring to hear from patients who have been able to do both. ;)
     
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