A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

My very, very worst symptom is back :-(

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

  1. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,176
    Well, I'm not saying it did but checking your BP after the fact won't tell you much since extreme acute stress like this will raise BP.
     
    ahimsa likes this.
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,532
    Likes:
    24,614
    USA
    @Sushi

    It's a great question and I have done three separate Zio Patch studies (which is a continuous heart rate monitor and a very cool device) at the beginning of 2013, then almost a year later and then mid 2014. Each time I wore the Zio for about a week and it captured probably 20-30 episodes (if not more) in my sleep and all were sinus tachycardia. The episode last night was identical to the other ones.

    I had been taking 2000 mg Taurine at night which started to give me insomnia so I switched to 1000 mg of Taurine in the morning or afternoon and it is working great. It is supposed to get the Magnesium & Potassium into the cells in addition to the cardiac benefits. It initially made me sleepy and no idea why it switched to insomnia!

    I don't rule it out in the distant future but not up for it right now.

    I agree, it is the absolute worst of everything I have experienced. I am so glad it stopped for you!
     
    NK17 likes this.
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,914
    Likes:
    12,767
    Sth Australia
    It would of thou gone up by the time you checked it after an episode of tachy so may appear far higher then it was while you were asleep. So this cant show at all what it was like before the episode if far too low BP triggered off the whole tachycardia episode.

    I guess the only way to figure that out would be if you were having lots of episodes of tachy and was being monitored at the time to see what occurred BP wise immediately before. This things can be quite tricky to catch and work out.

    It could "the same thing" but being done throu a "different cause", with dysautonomia stuff.. so any different things can trigger it off.. or certain things in certain combos (that is where the hormones may play a part in your latest incident) eg if your meds caused this latest episode plus hormones

    Im not saying this is what has happened but I'd think this would still be a possibility.

    It took me years to figure out that this thing, this thing and this thing all together worsens my dysautonomia when individually the things were fine but coming together.. they just werent and could lead to me on a floor unconscious.
     
    Last edited: Dec 12, 2014
    Gingergrrl and Sidereal like this.
  4. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    What about taking smaller doses throughout the day? That is my strategy anyway as the studies usually say you need to take 3000 mg + daily for the cardiac rhythm benefits.

    Sushi
     
    Gingergrrl likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,532
    Likes:
    24,614
    USA
    @Sidereal and @taniaaust1 Thank you both and I understand what you mean now. It is very possible my BP dropped in my sleep and the tachycardia was trying to correct it (and by the time I measured it, it was too late.) The only thing I don't understand is that I am taking the same amount of Atenolol and it was working great so not sure why that would suddenly drop it? And after the ep, I took an extra 1/4 Atenolol and it didn't happen again. I apologize if my questions are really basic and just trying to grasp it all.
     
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,914
    Likes:
    12,767
    Sth Australia
    I often ask the same question of "why" do I get severe diarrhea with the onset of my period (rest of time I have IBS-C) but it only happens with it only 2-3 times a year, some years I get very lucky and my period will only trigger it off once (till recently when it was triggered by a crash)...but it definately can be a trigger. Same with my period pain.. I always get pain with my period but a couple of times a year it is so bad Im bawling with it with the pain killers not working. Why?

    Same with my period mood swings which happened the worst day before my period.. some times they would be extremely severe to the point I got into trouble with the police, I even hit a salesperson at my door during one! ..but many of my periods I wouldnt go into mood swings at all. (That one I finally figured out, that turned out to be caused by a combo of PMDD (hormones) and my insulin issues (excess insulin spike)..so diet came into that too).

    The rest of those "whys" I still havent figured out yet, why occassionally I get a severe symptom with my period but most other times fine etc.

    I really really hope you can figure it out if it is a combo related thing as that stuff can be incredibly hard to figure out and often isnt figured out.
     
    Gingergrrl and zzz like this.
  7. halcyon

    halcyon Senior Member

    Messages:
    2,306
    Likes:
    5,390
    It's the other way around, vagus nerve activation will lower heart rate.
     
    zzz likes this.
  8. melamine

    melamine Senior Member

    Messages:
    341
    Likes:
    376
    Upstate NY
    @Gingergrrl - I had high titers of EBV, coxsacki b's and Adenovirus last checked. Heart infections are quite rare and doctors are not likely to test for it unless they have some concrete reason to do so, The fact that you have responded to the Atenolol suggests to me that it's something else. I personally would be considering some of the other suggestions on here and I would want to get the cortisol test asap, because if that's a problem it's something that can be treated quite safely and can make a real difference.
     
    Gingergrrl likes this.
  9. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    Maybe the cardio wasn't talking about the effect on normal heart rates but potential triggers for Atrial Fibrillation?

    Sushi
     
  10. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,517
    @Gingergrrl I'm so sorry to hear that your worst symptom is back.
    Although I don't have any practical suggestions to give you (meds, tests), I certainly understand what you're going through and deeply feel for you :hug:.
    This disease is like a roller coaster ride, a monster one and I've never really liked them.
    Sending all my best thoughts your way.
     
    Gingergrrl and taniaaust1 like this.
  11. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,532
    Likes:
    24,614
    USA
    @halcyon Can you explain that? I know there is a current theory by Dr. Van Elzakkar that the Vagus nerve is activated in CFS but it seems that so many PWC's have tachycardia or POTS (vs low heart rate) so not sure I understand this one?
     
  12. halcyon

    halcyon Senior Member

    Messages:
    2,306
    Likes:
    5,390
    The vagus nerve has both efferent and afferent fibers, meaning signal can be sent both from the brain to the organs and vice versa. The VanElzakker hypothesis is that afferent fibers (those carrying signal towards the brain) themselves are infected and cause an exaggerated response making the brain think there is a severe peripheral infection. It is the efferent vagus nerve fibers that the brain uses to send signal towards the organs, for example to lower heart rate. I don't believe the VanElzakker hypothesis has to do with efferent fibers at all.
     
    Gingergrrl likes this.
  13. zzz

    zzz Senior Member

    Messages:
    570
    Likes:
    2,536
    Oregon
    Just to elaborate a little, the hypothalamus is the source of the sympathetic nervous system; this is the "fight or flight" response that is almost inevitably overactivated in ME/CFS, and is responsible for most of what what we call dysautonomia. The vagus nerve is the center of the parasympathetic nervous system, which is the other half of the autonomic nervous system; the parasympathetic nervous system is responsible for the "rest and digest" response. So stimulating the vagus nerve relaxes those parts of the body that are under control of the autonomic nervous system.
    As the vagus nerve has strictly a relaxing effect, I don't see how it could trigger atrial fibrillation.
     
    Alea Ishikawa likes this.
  14. jerrymcfadyen

    jerrymcfadyen Senior Member

    Messages:
    122
    Likes:
    264
    East Bend, NC USA
    @Gingergrrl, I hate what you're going through. I can't help but I can and will pray.
    I know how scary it is to go through dealing with it some myself, You are definitely in my thoughts.
    Be well soon!
     
    Gingergrrl likes this.
  15. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    I just saw this, though I don't know if I am understanding it correctly.

     
  16. halcyon

    halcyon Senior Member

    Messages:
    2,306
    Likes:
    5,390
    This paper seems to imply that stimulation can lead to AF, but it had to be very strong stimulation. It's unclear if this level of stimulation could be achieved naturally.
     
  17. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    I test as parasympathetic dominant so that might be a factor in that a lower level of parasympathetic stimulation might be needed to induce AF.
     
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,532
    Likes:
    24,614
    USA
    @Sushi What do you mean you test as parasympathetic dominant? How does someone test that and even if they know, how would they treat it?
     
  19. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,388
    Likes:
    21,553
    Albuquerque
    My "bells and whistles" TTT showed that my parasympathetic system was in overdrive...and strangely, that the sympathetic was trying to compete. Both were functioning too strongly, but the parasympathetic system was stronger. My TTT included tests to show the functioning of these two aspects of the autonomic system.

    Knowing that either the sympathetic or the parasympathetic is dominant would help in the selection of medications. This is probably why strattera helped my OI so much as it is a norepinephrine reuptate inhibitor.

    Sushi
     
  20. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,615
    Likes:
    3,595
    @Gingergrrl
    I have just been waken up by a milld version of your symptom... In my case it is related to my new compounded T4/T3.

    Please read this: http://www.stopthethyroidmadness.com/dosing-with-t3-only/

    My next appt w? the dr who prescribed it is on Dec 29, but I am going to email him that link right now, b/c I am sure I need at least a 2nd dose of T3 after12 hours from the 1st one.

    Do you know that when you draw blood for the thyroid tests you have to wait to take your hormone until after the blood drawing? Even so, I am not sure if the results will reflect what they need to reflect in the morning...
     

See more popular forum discussions.

Share This Page