Just Got Diagnosed With Pots, A Few Questions...

[Hoshistorm]

The appointments yesterday went well. First off, I had the appointment with the cardiologist. He said that yes I do have Dysautonomia. I actually have a rarer form called POTS. So, instead of making me go through more agonizing days, he started me back up on the Metorperal. He did schedule a Tilt Table Test for next Friday. He said this was just to make sure that the meds are working. If they are not, he will increase them or start me on another medication. I can't wait for them to kick in. He also has me wearing a heart monitor for 48 hours (until Friday at 11:30). This way he can confirm that my heart rate is going faster than it should be.

I was wondering..How much do meds really help with the symptoms? Will I always have trouble with exhaustion after appontments and visits? Will the lightheaded spells go away? Will I ever feel symptom free?

[NMPotsie]

Propranolol has really worked for me; I am much less symptomatic and as long as I don't have a blood draw I'm pretty functional after appointments, but everyone seems to be so different it's impossible to tell. I am much less lightheaded and dizzy than I used to be, but I would not say it has gone away at all; it's more like you acclimate to it. I think I'm not as tired because my heart isn't running a marathon like it used to when I did anything, but it races sporadically or when it's hot, if I drink alcohol (big no no!). etc.

Overall, in my case, I would say I am conscious of my POTS symptoms on a daily basis, but where they used to keep me functioning at about 40% I now function at about 70% (some days more, some less). I'm incredibly grateful for this, though. If I had had to continue living feeling the way I did I think my mental health would not have withstood it.

[Guest Alex]

Hoshistorm,

I'll be honest those questions are hard to answer. POTS can be quite unpredictable, but I can definitely share my experience(s) with you.

Here are a couple of things:

- I can have days when I feel perfectly normal, 100% symptom free (most times it happens when I have a dr's appointment - ironic, I know!) and then I have days when all I can do is stay in bed and feel sorry for myself,

- after being diagnosed I tried many meds until my dr found the "right" combo for me and even with all the pills I am taking I am nowhere near where I was before this hit me, but I am not giving up hope,

-my lightheadedness was caused by the beta blocker (metoprolol) I was put on before my POTS diagnosis and it went away like magic as soon as I stopped taking that - the rebound tachy for a week was no fun though,

- I can't really complain about my energy level unless I really over do things, and then I pay the price the day(s) after,

- what the Holter monitor, echocardiogram and stress test did for me is reassure me that my heart is healthy so I don't have to worry about that - it really did give me some peace of mind

- the TTT were no fun (I had 2), but it was needed to confirm the diagnostic (to begin with) and the second one to confirm that the meds are working (they are according to the test, but not the way I'd like them to)

- I'm probably 70-80% better now that I'm on meds, but I believe I'm experiencing some side effects from them (you can't have it all) and right now I'm a bit in limbo trying to figure out whether the "benefits" outweigh the side effects

- I've tried metoprolol (25 mg a day) - the beta blocker you're taking now and it made things worse for me. When I switched to propranolol I started feeling some improvement, but each of us are different and respond different to meds, so in your case metoprolol might work.

Feel free to ask me for more info, clarification etc.

I'm sure other members will chime in and you can read their stories as well, then you can get a better picture of what we're dealing with.

Best of luck and let us know how the TTT went. I'll keep my fingers crossed for you.

Alex