Are you diagnosed with POTs? I have some questions

Hello everyone,

If you are a member who is diagnosed with POTs and willing to answer some questions for me, I would be most grateful. I believe I might be dealing with this, but don’t 100 percent fit the diagnostic criteria. Basically, my heart rate will jump 30 to 75 bpm per minute higher than it was sitting to standing or laying down to standing, but then rapidly begins dropping again within seconds. My heart rate is often too slow at rest. I deal with fatigue, headaches, excessive sweating, heart palpitations, chest tightness, feeling nervous, occasional dizziness, I have had black spots and felt faint before but have never passed out (this has only happened a few times), my feet do turn purple on occasion (not often I don’t think), poor concentration, shakiness, a feeling of instability in my balance (especially in the morning), nerve pain, joint pain, etc. Does any of this sound like potential POTs? I have a friend who is diagnosed with this who feels I might have it. I went to a cardiologist who basically told me because my stress test came back fine and because it doesn’t happen every single I time I stand up (it happens most often though), to basically drink more water and move on. Should I go to someone who will look into it more? Thank you all

[KayHimm]

Hi Brooklyne-

The test they usually use to confirm POTs is the tilt table test.

Hope that helps.

XX K

[jiankang]

There are alot of you tube videos on pots. Try Dr Sanjay Gupta York Cardiology you tube video on Pots. I think one usually finally gets a diagnosis of Pots only if one one is clear of all other illnesses that may also cause the same symptoms.

[Hidden in reply to jiankang]

Thank you so much! I will watch those

[Agt12]

heya!

I have pots and postural hypotension-took me years of symptoms to get diagnosed!

My new gp eventually referred me to a cardiologist who did a 48 hour ecg and an echo to rule out heart problems, bloods to rule out other problems then a tilt table test which is diagnostic.

The tilt table test was not fun to have but it is how I got diagnosed. There is also a poor man’s tilt table test which sometimes worked for me and sometimes didnt. For me this was mostly because of my anxiety in hospitals and drs appointments so my blood pressure and heart rate were ridiculously high to begin with and jumped all over the place! It definitely sounds like you could be dealing with pots and I think it would be worth trying to see someone else if you can. Dr Sandra Gupta also does a lot of helpful YouTube videos about what it is how to get diagnosed treatments etc.

I know the cardiologist you went to sounds a bit dismissive but drinking tonnes of water and adding extra salt to my diet did help with my symptoms somewhat, carrying around salty snacks for when you feel dizzy etc-also might be worth tracking what makes symptoms worse in terms of certain types of food and then trying to cut them out.

I think the treatment for pots is usually a beta blocker or midodrine, I’ve heard midodrine works really well and actually makes quite a big difference. I’m currently on Fludrocortisone for the hypotension but I think midodrine would be next to try!

It is a surprisingly common condition yet a lot of drs don’t know much about it and have preconceptions is anxiety related etc so if you can see someone who knows a bit more about it like an autonomic dr/specialist nurse you might get further

Hope this helps, feel free to message if you have any questions x

[Hidden in reply to Agt12]

Hi! Thank you for all this amazing information. I do have more questions so I will message you as soon as possible! =)

[Boeingbabe]

Yes, it sounds like you have a sub type of pots, most probably postural/ orthostatic hypotension plus some hypetadrenergic responses. I'd recommend the tilt table for dx or active stand test while you're waiting. If you feel rotten in the a.m , when upright but much improved in the evening then its v likely u have O.H. other differentials to be ruled out pheocromocytoma, thyrotoxicosis, adrenal issues, cfs leak, sporadic intercranial hypertension. Avoid betablockers, midodrine v helpful, compression socks etc.

[Hidden in reply to Boeingbabe]

Hi! This makes sense. My case is odd. I’m classic pots for the most part but my elevated heart rate only lasts 5 to 20 seconds when I stand, and then begins dropping rapidly again. It can go from about 110 back to something like 53 in that same amount of time. I need to see if my bp machine is accurate, but if it is I’ve been noticing that my bp becomes too low when I sit for too long, but not when I stand. 🤔 are there other subtypes of pots?

[Boeingbabe in reply to Hidden]

Yes , many subtypes. Yours sounds like neurogenic perhaps? If you're on a betablocker I'd reassess that..... your heart-rate is higher as its trying to compensate for O.H. is my guess. Raise your bp and the heart won't have to over compensate, so id be requesting a low dose midodrine 2.5mg 3 times daily, avoid lying down after and dont take before bed as it can increase supine bp. If the palps kuck in nebilet 2.5 will redu e that, but not so much you have low Lows.

[Boeingbabe]

Just to add, covid and vax injury can cause pots, as can Lyme disease ( can cause + ANA also ) surgery, injury and autoimmune conditions +