My very, very worst symptom is back :-(

[Sidereal]

@Sidereal Thank you and that makes sense. I checked my BP about 15 min after the episode and it was actually higher than usual (102/72 which is high for me) so I don't suspect that an extremely low BP triggered the tachycardia. Although anything is possible!

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.

 

[Gingergrrl]

@Sushi

I have had many episodes of tachy during sleep but for me it was Afib. Have you had a HR monitor on during these tachy episodes to make sure it is your regular form of tachy and not an arrhythmia of some sort? I ask because my cardio said that the vagus nerve was activated during sleep and that this could cause tachy (and for me an arrythmia). For the last six months (fingers crossed) taking Taurine throughout the day seems to have prevented it. There are studies that show why this could be true--not only for Afib but for other forms of tachy.

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!

If you still have some LDN, it is simple to dissolve it in distilled water and measure out a very accurate dose with a syringe--just requires some simple math. though I know you would be hesitant to try anything new ATM. Just to keep in mind for the future.

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

And yes, waking up with a heart rate of 180 is about one of the worst symptoms I have experienced! I fully sympathize.

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

 

[taniaaust1]

@Sidereal Thank you and that makes sense. I checked my BP about 15 min after the episode and it was actually higher than usual (102/72 which is high for me) so I don't suspect that an extremely low BP triggered the tachycardia. Although anything is possible!

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'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.

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.

 

[Sushi]

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.

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]

@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.

 

[taniaaust1]

@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.

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.

 

[halcyon]

I ask because my cardio said that the vagus nerve was activated during sleep and that this could cause tachy (and for me an arrythmia).

It's the other way around, vagus nerve activation will lower heart rate.

 

[melamine]

@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.

 

[Sushi]

It's the other way around, vagus nerve activation will lower heart rate.

Maybe the cardio wasn't talking about the effect on normal heart rates but potential triggers for Atrial Fibrillation?

Sushi

 

[NK17]

@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 .
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]

It's the other way around, vagus nerve activation will lower heart rate.

@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?

 

[halcyon]

@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?

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.

 

[zzz]

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.

Maybe the cardio wasn't talking about the effect on normal heart rates but potential triggers for Atrial Fibrillation?

As the vagus nerve has strictly a relaxing effect, I don't see how it could trigger atrial fibrillation.

 

[jerrymcfadyen]

@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!

 

[Sushi]

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.

I just saw this, though I don't know if I am understanding it correctly.

Abstract
INTRODUCTION:
Parasympathetic stimulation is known to promote atrial fibrillation (AF) through shortening of atrial refractory periods. We hypothesized that baroreflex-mediated parasympathetic stimulation via phenylephrine (PE) infusion would increase AF rate as measured by dominant frequency (DF).

 

[halcyon]

I just saw this, though I don't know if I am understanding it correctly.

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.

 

[Sushi]

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.

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.

 

[Gingergrrl]

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.

@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?

 

[Sushi]

@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?

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

 

[Gondwanaland]

@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...