My very, very worst symptom is back :-(

[Gingergrrl]

@Violeta, I wrote this thread in 2014 (although it has been revived a few times). I no longer have any cardiac symptoms at present and am in remission from my treatments. We do not know if the remission is temporary or permanent until I stop the second treatment which is still approx every 3-months.

Also, I do not believe that @melamine is active on PR any more but am tagging her just in case so she can see your questions to her. I am also hoping that she is okay and we used to chat a few years back.

 

[Violeta]

I didn't look at the date of the posts! I'm glad you no longer have cardiac symptoms! Thank you for tagging @melamine.

 

[Gingergrrl]

I didn't look at the date of the posts! I'm glad you no longer have cardiac symptoms! Thank you for tagging @melamine.

No worries @Violeta! I often see very old posts get revived and sometimes I worry about the person from what I read and then realize they are from 4-5 yrs ago like this one! Thanks for being concerned about me and I have not had any return of POTS or cardiac symptoms (and am hoping Melamine is doing better, too).

 

[Belgiangirl]

OMG!! @Gingergrrl I have the very same!!
I already have this since I am 18 years!!

In me it works like this: I feel it coming, it feels like falling asleep but my head is markebly lighter, then I do fall asleep and am somewhere in between dreaming and awake, then all the sudden my heart is racing like mad .....
Also I am paralysed!
First time i had this I thought this was the end...
Heat is also a factor, as like stressors who leave me a full night without sleep, that evocate it clearly. I am extremely hot during this 'racing' while I want to escape, I might dream that I am escaping and my live goes on.... while I am still laying there ... then I realise that I might still lay there... Anyway at some point I succeed in moving a finger or something with very very much effort and then I jump-like awake and throw everything off me so the heat also stops: then it stops all the sudden. Leaving my heartbeat still clearly worried and "wobby".

I may have several attacks at one night (actually morning since they will rather occur after a night of very poor or no sleep).

To evokate it on a holter or intentionally I don't dare. It it to scary to me to do that.

The very very same!! Told this to so many doctors, some close friends, no one believed me, no one could explain. But it is the exact same thing as you explain here...

I use inderal (propanolol) if my hearts is behaving strage (unfortunately have other heart palpitations, bradycardy, tachycardie, arhytmia's too...) usualy it goes very parallel with my tiredness level. The more tired: the more crazy jumps my heart will make and let me know it is not okay anymore...

 

[Learner1]

That does sound very weird!

It sounds like it is related to your nervous system. Have you discussed any of this with a neurologist, particularly one that treats dysautonomia?

Things you might look into:

1) do you have any structural abnormalities in your spine that could be caysing symptoms in particular positions?

2) do you have autoimmune antibodies affecting your muscarinic, nicotinic, adrenergic or cholinergic function which migh cause symptoms like that? The CellTrend panel or Mayo panel might identify something treatable.

3) might trying different meds that affect the function of systems in 2 above help? Or autoimmune dose IVIG, if it's autoimmune?

4) do you have some sort of vagal nerve problem?

I'm not a doctor, but as a patient, these are areas I'd look into. You sound very believable to me.

Best wishes...

 

[kisekishiawase]

This is also my question. I also create a thread about it. For years im.also confused about the attack during sleep. Even if during days its fine.

Sorry hopefully we can find a solution/we can fix it


Edit: wait...this is outdated?‹

 

[kisekishiawase]

@Learner1 what does it have to do with muscarinic, nicotinic, adrenergic or cholinergic autoantibody?

 

[Learner1]

I'm not a neurologist but have been exploring these topics, which seem to affect many ME/CFS patients. Attaching some files for you.

This page translates to English for me using Google translate:

https://www.celltrend.de/en/pots-cfs-me-crps.html

These would be discussions to have with your doctor. I had my blood drawn in California snd sent to

 

[kisekishiawase]

I'm not a neurologist but have been exploring these topics, which seem to affect many ME/CFS patients. Attaching some files for you.

This page translates to English for me using Google translate:

https://www.celltrend.de/en/pots-cfs-me-crps.html

These would be discussions to have with your doctor. I had my blood drawn in California snd sent to

Hello thank you for the links/attachment. Yes i do remember on other thread discussion with @Gingergrrl too
I feel suspicious with the autoimmune and heart issue since i have AutoImmune too but other antibody.
But what gets me down is the test hard to achieve and conventional doctors dont believe it

you mention about spine, does it have anything to do with it? Also how do i test for vagal issue?

 

[Learner1]

The test has been validated by researchers. My neurologist, a dysautonomia specialist had never seen the test, but began using it eith other patients after seeing mine. Dysautonomia is becoming recognized as an autoimmune disorder.

Yes, problems with either the spine or its connection to the brain can be related. For info vagal nerve involvement, you might look at Michael Van Elzakker's recent talks - you should be able to find them on YouTube.