New Symptoms

[Chance Quinn]

Hello, I was diagnosed with POTS in my early 20's and it was always an annoyance but nothing major ( I don't fully pass out). Last year I came down with a virus, not covid-19 as far as I know, and my symptoms seem to have tremendously worsened since then, plus several new symptoms have appeared. I finally got a new PCP last year. I hadn't had one in years due to severe medical gaslighting in the military healthcare system so I was very reluctant to visit a doctor. She was very dismissive about my POTS diagnosis on the first visit, but believed me when I returned with a very erratic HR and she saw for herself. She also diagnosed IST at the appt. and referred me for a cardiology workup. The cardiologist agrees I do indeed have POTS, IST and some left ventricle disfunction. I'd like to know if the new symptoms I'm having are common with POTS and mostly I'd like validation that it's not all in my head! Any info is much appreciated. I also have chronic pain from joint hypermobility and GI issues that coincide with the initial POTS diagnosis 20 yrs ago.

1. episodes of extreme fatigue, worsening of general energy levels.

2. Mild nausea in the mornings

3. Severe loss of appetite to the point of almost food aversion with 15lb wt loss

4. Vertigo (not lightheadedness like I might pass out)

5. Air hunger (not new but much worse in the past few months)

6. Muscle cramps (primarily calfs and hamstrings)

7. Burning neuropathy type pain in my feet

[Pistol]

Hello @Chance Quinn - welcome to the forum! -- Most of your listed symptoms sound quite common for dysautonomia. I am not sure about the loss of appetite though since it could be related to another issue. Are you on any medications? What treatments do you do for your POTS - fluid and salt loading, compression garments, dietary adjustments?

[Chance Quinn]

2 hours ago, Pistol said:

Hello @Chance Quinn - welcome to the forum! -- Most of your listed symptoms sound quite common for dysautonomia. I am not sure about the loss of appetite though since it could be related to another issue. Are you on any medications? What treatments do you do for your POTS - fluid and salt loading, compression garments, dietary adjustments?

That's good to know, thank you! I take propranalol twice a day and hydration tablets several times per day. I recently started taking salt during episodes and it seems to be helpful. I can't do compression socks due to sensory issues. I don't follow any special diet but I do try to salt my food as much as possible. I've always been a good eater so the loss of appetite is very strange for me but it correlates with everything getting worse after the virus last year. I also have a service dog that alerts to episodes and performs deep pressure therapy to improve circulation. Thanks for your input!

[Sarah Tee]

@Chance Quinn, the burning pain in your feet sounds like something that needs to be checked out fairly urgently. Is there a POTS specialist nearby who is a neurologist? Or a helpful neurologist at any rate?

Often the best way to find a specialist is via recommendations from your local support group. Here’s a list of groups:

http://www.dysautonomiainternational.org/page.php?ID=24

I’m sorry you have had a hard time getting medical help. I’m afraid we’ve all been there.

Did the cardiologist you saw recently seem knowledgeable about POTS? Maybe they could help with a referral?

[Chance Quinn]

16 hours ago, Sarah Tee said:

@Chance Quinn, the burning pain in your feet sounds like something that needs to be checked out fairly urgently. Is there a POTS specialist nearby who is a neurologist? Or a helpful neurologist at any rate?

Often the best way to find a specialist is via recommendations from your local support group. Here’s a list of groups:

http://www.dysautonomiainternational.org/page.php?ID=24

I’m sorry you have had a hard time getting medical help. I’m afraid we’ve all been there.

Did the cardiologist you saw recently seem knowledgeable about POTS? Maybe they could help with a referral?

The cardiologist was aware of POTS and familiar with it but definitely not a specialist. I doubt there are any specialists within a one day drive of where I live, and it takes over a year to get into a neurologist here but I think that's a great suggestion. I'm thinking the pain may also be related to chronic pain which I have had pretty widespread for about 15 years due to joint hypermobility. I'm feeling like there is a secondary fibromyalgia situation creeping in. I will take a look at the list--I'd love to join a support group. Thank you!

[Sarah Tee]

@Chance Quinn, I live far from specialists too, although not quite as far as you. About three hours each way to the nearest capital city for most of them. (Why don’t they do tours like bands?)

DINET also has a list of specialists:

https://www.dinet.org/physicians/

And lots of useful articles if you poke about in the menus at the top of the page.

I was wondering, perhaps it might be time to consider adding another medication. Have you ever tried midodrine (to improve vasoconstriction) or fludrocortisone (to increase blood volume)?

Or perhaps you already tried discussing this with the cardiologist and didn’t make much progress?

[Chance Quinn]

9 hours ago, Sarah Tee said:

@Chance Quinn, I live far from specialists too, although not quite as far as you. About three hours each way to the nearest capital city for most of them. (Why don’t they do tours like bands?)

DINET also has a list of specialists:

https://www.dinet.org/physicians/

And lots of useful articles if you poke about in the menus at the top of the page.

I was wondering, perhaps it might be time to consider adding another medication. Have you ever tried midodrine (to improve vasoconstriction) or fludrocortisone (to increase blood volume)?

Or perhaps you already tried discussing this with the cardiologist and didn’t make much progress?

No I haven't tried any other medications yet as my symptoms only recently became bad enough to warrant medication recently but I will definitely look into these, thanks!!