Potts syndrome

[Dolly1234567]

hi my ablation was last year , I am

Having one more for investigation reasons just incase my SVT has came back so suspect high HR’s recently on my Apple Watch. My consultant thinks I have POTTS syndrome which is mild and now well managed with 2 litres of water daily and extra salt. Any one with experience of POTTS.. also I am on bisoprolol until my investigation and have started with silent migraines again (without aura and strange smell in nose then occasionally headache later ) any one had the same as this too?

[CDreamer]

Yes and yes. PoTS - Again now well managed with hydration and electrolytes.

I could not tolerate Bisoprolol at all and for me was the worst drug possible so now have a red alert on my medical file not to ever be given it. Along with PoTS, I am also hyper mobility which means that the last thing I needed is a vasodilators. I also have autoimmune, which is a common cluster of co-existing conditions.

You may find information on the STARS website useful heartrhythmalliance.org/sta...

The headache and strange smell - how often? When this happened to me it was a sign of a TIA and nothing to do with PoTS however I did have other signs of a TIA such as confusion, brain fog and some one sided weakness but as that is usual for me FAST signs weren’t much use as a diagnostic for me.

Have you had a Tilt Test?

Best wishes CD

[Dolly1234567 in reply to CDreamer]

Hi ! No tilt test … what is TIA ? Thanks

[CDreamer in reply to Dolly1234567]

Trans-Ischemic Attack. ie:- mild, mini stroke.

[Dolly1234567 in reply to CDreamer]

I have contacted my doctor, and googled this, just smell alone doesn’t point in the direction of an TIA, it could be a form of migraine without the headache, or phantomasia .. I will await the GP to call me back. That may have been the case for you, but I wouldn’t jump to that conclusion just because I have Potts and I had an SVT (hopefully no longer ) I don’t have AF, so not the same risk factors

[CDreamer in reply to Dolly1234567]

Of course not, I do have AF and at the time was not on anticoagulants. I was just explaining what happened to me as the olfactory hallucination was just one sign. PoTS has no link to TIA that I know of. I know for sure it wasn’t a migraine but of course could be for you.

Hope all goes well for you.