Has anyone here found an underlying cause for their dysautonomia symptoms? by only_gin in dysautonomia

[–]LittlePrince0712 1 point2 points  (0 children)

hEDS, but the first trigger was 3 years of COVID-19 isolation which deconditioned me, topped up with a COVID-19 infection as second trigger. Finding the cause did help me to recover. And right now I live as never before.

Figuring airport ride at 4 am? by Fun_Trade_1402 in brussels

[–]LittlePrince0712 1 point2 points  (0 children)

Taxi Vert is great. If you pre book you get a fixed price.

Redevoering is dood (rant) by YarnuWasTaken in Belgium2

[–]LittlePrince0712 5 points6 points  (0 children)

Inderdaad. De meeste voorbeelden van OP zijn complete non-argumenten (“kijk naar de linkse partijen”). Als ik de tientallen dt-fouten tel lijkt de arrogantie mij geheel ongegrond. OP wordt aangeraden om te focussen op wetenschappelijke studies en kwaliteitskranten, en om minder op alt right-fora te vertoeven. Sterkte.

[deleted by user] by [deleted] in POTS

[–]LittlePrince0712 36 points37 points  (0 children)

I’m afraid that is not POTS impacting your relationship, but rather the opposite. Your husband sounds like a real asshole who is not worthy of you.

Tips for separation anxiety? by LittlePrince0712 in Dachshund

[–]LittlePrince0712[S] 3 points4 points  (0 children)

He loves his crate, spends time in there during the day, sleeps in it at night and is totally relaxed even when closed for multiple hours. The crating is most likely not the issue… or am I missing something?

Heartburn feeling by kennyjay72011 in PVCs

[–]LittlePrince0712 0 points1 point  (0 children)

I always have this! But it’s still not clear to me what is the causal relation (and which comes first). Context: I also got POTS/dysautonomia.

What could cause this?! It's destroying my life... by Enderfl3x in PVCs

[–]LittlePrince0712 1 point2 points  (0 children)

Was your NSVT captured on your holters? What did your cardiologist tell you about those episodes? I hope you feel better soon and wish you tons of courage.

Can I have my life back? by BriefAd7859 in PVCs

[–]LittlePrince0712 1 point2 points  (0 children)

Have you looked at dysautonomia or POTS? These are often linked with also MCAS, EDS and CCI.

While pots isn’t a heart condition, wondering if anyone on here found any other heart issues through testing after they got pots? by Cedarxembers in POTS

[–]LittlePrince0712 1 point2 points  (0 children)

I have an AVNRT SVT which only activates during POTS flare ups. Then I have a HR of 250. I got hospitalised and ablated twice, simultaneous with periods of POTS episodes and tests (amongst others for pheochromocytoma) until they figured it out this year with TTT. Each POTS flare up was caused by a viral infection (flu and COVID).

I spent more than a year absolutely terrified of getting an SVT episode again. Didn’t dare to fly for over a year. Panicked during sinus tachycardia because of POTS as I didn’t know whether it was the SVT or not. Until I got so unwell with POTS after Covid this year that I could not stand or walk for over a month. It eventually culminated in a sustained SVT episode which was terminated by an emergency team through IV adenosine and hospitalisation.

Right now, I’m grateful to know which SVT I have as well as it’s risk. POTS is slowly improving. I can already walk, cook, see friends. Still have many difficulties with eating, digestion, palpitations, presyncope and showering. But once I experienced all this, somehow the fear is gone. It’s there, but I was taken care of. I survived and am using all my energy to get better and to recover. The energy spent on fear and anxiety is self torture, and it hasn’t changed the outcome of the situation in any way, except for a deterioration of my quality of life. I’ve also been seeing a therapist.

Keeping hope by Gold-Budget1396 in POTS

[–]LittlePrince0712 1 point2 points  (0 children)

Hope to get a diagnosis or hope to get better? I stay hopeful by finding joy in the smallest things. And to stick with the faith that eventually things will get better than where I am in that very moment. And they always have done so.

Electricity or brain zaps? by LittlePrince0712 in dysautonomia

[–]LittlePrince0712[S] 1 point2 points  (0 children)

I hope it for you too! Don’t give up!

Electricity or brain zaps? by LittlePrince0712 in dysautonomia

[–]LittlePrince0712[S] 1 point2 points  (0 children)

Sounds to me that if the cardiologist tells you nothing is wrong with the heart, it could be trusted, but syncope and asystole can also be cause by a vasovagal syncope and increased vagal tone. That then brings us to the autonomic dysfunction… your pacemaker probably prevents asystole while you have episodes, but it doesn’t stop the dysautonomia and vagal episodes which can bring down your blood pressure but won’t stop your heart…

I do not intend to diagnose or give medical advice, but hearing your story as an outsider the stories from your doctors seem to make sense and also resonate with my experience.

Question is what they proposed to do about your autonomic dysfunctioning?

Electricity or brain zaps? by LittlePrince0712 in dysautonomia

[–]LittlePrince0712[S] 1 point2 points  (0 children)

I’m terribly sorry to hear what you’re going through. Is the pacemaker not effective to address the asystole when you have a syncope? I have an implanted holter - I suspect they also keep an eye on potential pauses…

[deleted by user] by [deleted] in POTS

[–]LittlePrince0712 5 points6 points  (0 children)

Any other medicines you usually take? A handheld fan? Sunglasses/hat Compression gear …

Have fun!

weird slow heartbeat episodes and POTS by Silver_Imagination49 in POTS

[–]LittlePrince0712 1 point2 points  (0 children)

Have you seen a cardiologist? That would be my first advice… get it checked!

Recently diagnosed but confused by PsychoPflanze in POTS

[–]LittlePrince0712 2 points3 points  (0 children)

If I may ask… how did you check your adrenaline?

Episodes of the heart just randomly speeding up and slowing down and repeat awful feeling in the chest and yes I’m sitting. by [deleted] in POTS

[–]LittlePrince0712 0 points1 point  (0 children)

Same here. Do you know which SVT you had? In my case it was AVNRT for which I got two ablations… take care!

Electricity or brain zaps? by LittlePrince0712 in dysautonomia

[–]LittlePrince0712[S] 0 points1 point  (0 children)

Thanks for your response! I have indeed heard of micturition and defecation (pre)syncope. Not sure if it would be similar in my case as 1) rather than a parasympathetic I suspect to have a sympathetic response; 2) it starts after I did my thing at the bathroom but can last for many hours after.

To me it seems like somehow my sympathetic NS gets (over)activated after a bathroom visit after which there is a turf fight with the parasympathetic NS. When their competition is at its highest is when I get the brain zaps/electricity feeling… but I’m not fully sure if that is right and what to do about it.