Wolff Parkinson White And Pots

[EABarnard]

Hi all

Does anybody on the forum suffer from Wolff parkinson white and POTS?

If so, has anybody had ablation surgery for the WPW?

Did this affect your POTS at all and if so how?

What medications have you found useful/not useful?

So many questions I know! I am feeling so overwhelmed at the moment. Since my last post of being admitted into ICU for shortness of breath, the doctors discovered arrhythmia due to what they now believe is Wolff Parkinson white. It seems the medication I was on for my POTS was making the WPW worse. Is it possible for WPW to be missed on ECG and only picked up now after numerous ECGs, holters etc?

I have been put on new medication for the WPW. The doctor has given me verapamil but the problem with this is that it leads to further hypotension and with my POTS...I need not say more...I really feel horrible. From being fairly in control of my POTS to now not even being able to get up without support, diarrhea two to three times a day and just complete exhaustion...

Has anybody else ever had these two together and if so please give some info!

[gjensen]

I am sorry you feel that way. I also wish that I had something constructive to say or contribute. I had to look it up to see what you were talking about.

If you have any doubts along the way, you can seek a second opinion.

Right now, in the mean time, I would be asking the doctor if there was another option that might be more tolerable. Maybe an option to help you tolerate it?

Maybe, someone on here would have some insight.

Keep your head up. It will not always be this bad.

[EABarnard]

Thanks gjensen! I appreciate your kind words!

[xRobin]

I'm sorry you have WPW and POTS, and that the medication for one is contraindicated for the other. I have no idea if there is a connection.

I had an EKG last summer that had an abnormal interval that is found in WPW but lacking the other element of it. It was repeated and normal. Nobody seemed concerned or even requested follow up! (I got POTS about three months later.) Maybe it can develop in adulthood?

Also, not sure about how ablations affect POTS. Maybe the best type of physician to try to seek out would be an electrophysiologist?

Best of luck to you.

[Lisag951]

My daughter was diagnosed with WPW first, had the ablation done, then they discovered it may not have been WPW but POTS all along, as none of the symptoms improved after the ablation.  We are going in to see the Cardiac Electrophysiologist tomorrow to verify that to be the case.  She has tried all of the medications typically prescribed for WPW and they had no effect on her WPW symptoms but just made her feel worse.  While they are in the process of getting her situated with the POTS treatment, she is still taking the Atenolol, it does not make her feel sick at all.   I wish there were more doctors studying POTS and better treatments.  Its difficult for anyone suffering from it to be able to do most things the rest of us take for granted.  

 

[Sue. C.]

My son was diagnosed in September 2022 with wolff parkinson white syndrome . I thought it was pots. So he had and EKG and it showed the wpw.

He had an ablation last November and it was successful. A month later he is feeling dizzy light headed we go back to doctor oh he needs more fluids more salt.  No diagnosis of anything so I take him to another doctor and he finds pots says he has a mild case well now he worries all the time that he is suffering from other things related to his heart. I am trying to find out what kind of diet helps other POTS patients. He  doesn't eat well in the first place and to top it off did I say in 2021 he had a mild covid lost his sense of smell and never got it back fully.