Jump to content

Pots & Arrhythmia


Desiree89
 Share

Recommended Posts

Hi everybody,

Im a norwegian/danish girl that got all lot of POTS symptoms. I don't know how long I've been having them. When a was a baby I had some sleeping-difficulties(still today), and i did't wake up early in the mornings. when I got angry I didn't remember to breath(my father tok me to the emergency alot because I got so blue and he couldn't get any respond from me) - I was a couple of months. when I got older (and still today) I couldn't cry without hyperventilate, and I fainted( I must have been a terrible baby/kid:). I had anemia when I was 3yrs. I have had alot of stomach-pain, and still today,joints thats hurts and get a little swollen ...

I'm thinking that its maybe connected with POTS/dysautonomia - what do you think?

When I was 13-14 yrs old I startet to have PVC and Reentry nonsustained ventricular tachycardia(VT) from my right ventricle, HR: 210, for about 15 sec, sometimes longer. also got "slow VT", also called AIVR, and bradycardia I starting to faint/syncopes, more dyzzi, tired, headache, low BP, sometimes a little high. I forget to eat because I didn't felt hungry, but I got nausea and vommits a little. At this time my doctor just told me that PVC was normal, I didn't got through

any tests. But when I was 16, cardiologist recognized a VT on the EKG, but my primary doctor forgot to tell me about it, and I didn't get further tests.

When I was 19 yrs old I felt tired all the time, still working and school, I had a lot of syncopes, and more frequent arrhythmia. But at this time I thought I'd just had some PVC. but I was wrong. my mother tok me to the emergency because I was complaining that I couldn't sleep because mye heart was very irregulare. at the emergency they told me that I needed a ambulance to a bigger hospital. when I got there they told me that I had reentry V-tachs and AIVR(in 2 hours I got like 20 nonsustained VT.)

they gave me some selo-zok(betablockers), and I felt fine. They didn't allow me to work for 6 months, because they needed to investigate why I got the arrhythmia.

The selo-zok made me more tired, more dizzy, feeling cold all the time, made my heart brady. bpm: 35-50. that made my headache go crazy. then I stopped taking selo-zok, and PVC, VT, and the other heartrytmh was getting annoying again. cardiologist tested my heart, got a little low ejection fraction(50%), but my heart is structually fine. had some late potentials(if somebody understands that, I dont, but somethings about the hearts re- and depolarizing).

because of the arrhythmia I bought a heartwatch/pulsewatch, I recognized that when I stod up I could get a heart rate on 170bpm, dizzy and sweating, and I also got sinustachycardia when I wake up after sleeping. stairs was terrible.

I googled and found POTS. every symptoms makes sense, but not the arrhythmia thats is getting worse, and doctor cant find out why.

I have found some people with POTS and VT, I would like to meet more. Its not normal to have pots and VT? - or?

I got a positiv TTT, but not any diagnosis. Do you think its a pots or something else?

Sorry I wrote a book, but im kind of frustrated because, my new medication(flecainide) doesn't block the arrhythmia and I just restarted my education 2 weeks ago, and again its getting worse.

Looking forward to hear from anybody!!!

Hope my norwegian-danish-english isn't to bad:)

Sincerely Ida D.

Link to comment
Share on other sites

Hi ida, you mention being (tachycardic on waking ) !.. have you heard of IST inapporiate sinus tachycardia , i have this aswell as pots it may be worth reading about and seeing how it compares to your symptoms there is a website for ..IST - www.tachy.co.uk ......... or if you google "inappropriate sinus tachycardia" there are entries to read about it, IST is rare ....

tilly

Link to comment
Share on other sites

Thanks for the respond Tilly :)

I read about IST, somethings fits, something don't. my resting heart is about 50-60bpm - now and before I started the medication. But before the medication I could have days with resting heart at 90-100 bmp.

When I have more energy, I will contact my cardiologist and demand investigation on POTS, IST & Phaechromocyta...

Does anybody now where to find a good overview of the differential diagnosis to POTS?

-ida

Link to comment
Share on other sites

I don't have a whole lot of information because I'm still new to all this. My primary care doctor just diagnosed me with POTS, and my electrophysiologist earlier this year diagnosed me with IST. I also have ventricular tachycardia; they caught it on a monitor a couple of times now.

I don't know yet whether they're all related or whether they'll all even stick after we sort out my health, but I just wanted to let you know you're not alone.

-Autumn

Link to comment
Share on other sites

Hi Desiree -

Not sure how much advice I can give you but I can tell you what goes on with me. I have POTS as well as Inappropriate Sinus Tach, Atrial Fibrillation, Atrial Tachycardia and have had SVT (Super Ventricular Tachycardia) and episodes of bradycardia. I was on Flecainide for the arrythmias for two years. They did help my arrythmias but I had to go off the medication because the side effects were very bad for me.

In my instance, I have been on heart monitors more times than I can count until the Dr. decided to implant a loop monitor in my chest and I had that in for 2 1/2 years until the battery died. So, needless to say, we have tons of data on my arrythmias. My Dr. told me that the arrythmias are a separate issue from POTS - not caused by the same thing (I was told POTS tachy is caused by bad signals to the heart from the brain (the autonomic nervous system) while the other arrythmias are from my heart's electrical system malfunctioning). I would still have the arrythmias if I didn't have POTS. Having other arrythmias makes the POTS more difficult to treat because treatment for one (like a pacemaker) may really mess up POTS or at the least, not help it at all.

As for the IST, for me it's not all the time. I could have a normal resting heart rate but I would get "IST surges" where I would be sitting down watching TV or something and my heart would suddenly take off. Having POTS makes this worse because if I stand up during an IST episode, the POTS kicks in too and the heartrate will get even higher than it normally would. It's funny because I am at the point where I can tell what type of arrythmia I am having.

Anyway, like Autumn said, you are not alone and I hope you get the answers you are looking for. It's a shame that you had a positive TTT but not a diagnosis. I hope you get the right one soon..all the best to you.

Link to comment
Share on other sites

  • 2 weeks later...

Thanks everybody!

It really helps me to know im not alone.

Like I said before, I dont have any diagnose.

- If im going for a dx, what kind of doctor do I need to see?

if I talk to my regular doctor and say I need to see a specialist, what kind of specialist does that indicate?

Thanks alot for all help!

Ida

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...