Pots Or Not(s)?

[shadesofgrey49]

So on Monday my cardiologist made the POTS diagnosis official and prescribed me a beta blocker. I filled it but didn't start taking it.

Today, I saw an NYC neurologist on DINET's physician list. She advised not to start the beta blocker. She's not positive it's POTS, but knows there's some sort of autonomic dysfunction going on. She's going to write a dictation to send to Mayo. For now, she told me to get compression stockings and see a physical therapist.

Do any of you get physical therapy?

Am I right in listening to the new doctor?

Is it OK to be a little sad that my diagnosis was taken away from me? I totally understand that if I don't find the correct diagnosis, there's no point in getting treatment. But I just want to start feeling better soon.

[MelissaCrystal]

If you have bad tachycardia, that's all the beta blocker will really help---it's not a treatment specifically for POTS, just for the tachycardia symptom.

But if your neurologist doesn't want you to take it---if she has a better idea, something to actually treat the problem rather then the symptom then it is up to you to decide to go with her advice.

It's funny because my cardiologist wanted me to take my beta blockers but my neuro was against it, just like your situation. Odd. My Neuro ended up not knowing what to do about me though so she gave up and referred me to other people. She also thought I didn't have POTS, she just thought I had anxiety. Which I don't. She wanted me to just take Paxil and pretend all the other symptoms were all in my head. Ugh.

BTW the only reason my neuro didn't want me to take beta blockers was because it has a tendency of lowering your BP, and my BP is already too low.

[Ernie]

Hi,

If you have tachycardia then I would go ahead and try it. If you go to Mayo then that will be one med that you will have tried.

[ramakentesh]

Beta blockers are pretty benign in my opinion and I am not super sensative to them like perhaps I am with other meds (florinef in particular) - they can make you a little dizzier but they get rid of most of the symptoms of sympathetic overacticity (tremors, sweating, tachycardia, etc). But they do mess with your sleep in my experience and can dehydrate you a little.

[mkoven]

And I wouldn't overlook how much stockings can help. If you've never worn them before, you could try 20-20 mmhg strength, but you may not see real benefit till you get to 30-40 (or higher!) It's just that's a lot to start with.

[firewatcher]

Compression stockings are wonderful, you can't imagine the difference once you get them on. But if tachycardia is an issue, take the beta blocker. Start small, 1/4 -1/2 the dosage if you are concerned. My BP is low too, till I stand up. Inderal has a fairly short half life and will be out of your system in 12 hours. I can take a tiny dose (10mg) and get significant relief from the tachycardia.

So far with my treatment, I have found that no one doctor is right about the whole thing. You have to find what works best for you.

Good luck!

[EarthMother]

It is strange how different "specialists" can see the same patient and read the same test findings and come up with two (or more) entirely different and opposed diagnosis. I DO have tachycardia. But my cardiologist is dead set against me taking beta blockers. He wrote a summary note to my PCP where he reiterated that I had POTS and that I should not be taking beta blockers. (There was an endo who had insisted I be on beta blockers.)

I recently bought a pair of the higher compression thigh highs ... it was too hot when they arrived. But now that cooler weather has arrived I should dig them out and try them out! Thanks for the reminder.

Oh, and as for the notion that we need a correct diagnosis in order to have effective treatment .... I agree in an ideal world, yes. And we should certainly still keep trying to refine and discover that which continues to allude the medical world. However in the meantime, for some of us, we have to admit we are lab rats and sometimes that involves trying things to determine our own experience with each modality until we discover what works for our unique body system -- or indeed until our own body's wisdom finds a solution all on its own.

Good luck finding something that works for you, for now.

~EM

[casey311]

I just went for my follow-up with my neurologist yesterday and I really haven't noticed a difference. He had me on Toprol, Midodrine and Zoloft. When I was on the Toprol and Midodrine I would have these wierd feelings like my heart was beating in my throat and then when he put me on the Zoloft I got this strange feeling like my chest all the way out to my shoulder was on fire. I have a pacemaker due to my heart pausing. So I stopped all the meds and he put me back on Toprol 25 mg at night and then the Midodrine 5 mg 3 x day during the day. I still get feelings like I'm going to pass out and I told him they just come and go. Well he took my blood pressure and heart rate laying and then standing numerous times and said based on the visit he couldn't diagnose POTS. He's the one who first diagnosed me after giving me a tilt and having to lay the table down at 20 minutes b/c I was going to pass out. He said my heart rate kept going up and then it dropped and so did my blood pressure. I told him I was going to see Dr. Blair and Dr. Fouad in March and he thought it was a good idea. I guess he's thinking it's more heart related since I have heart problems and the pacemaker anyway. He's very nice and told me to keep coming back every 3 months until we get this figured out. I was relieved when he said he couldn't really diagnose me, but I know it's still out there. My first cardiologist just diagnosed me with tachy-brady syndrome, and it sounded like yesterday that's what the neurologist was saying so who knows. I just can't wait until March to see what the other doctors say. Good luck to you. I know it's frustrating knowing there is something wrong but no definite answers and why can't they just agree. lol

[mkoven]

I thinkit's odd when docs expect us to always display the same tendencies, to the same degree. Sometimes I have huge drops in bp, sometimes not. sometimes tachy, somtimes brady. a quick check on one day doesn't catch it. I didn't get the pots diagnosis till my tilt, because my tachy isn't usually instant--according to r. fouad I have "late tachycardia"--meaning it takes a little bit to kick in.

[shadesofgrey49]

I thinkit's odd when docs expect us to always display the same tendencies, to the same degree. Sometimes I have huge drops in bp, sometimes not. sometimes tachy, somtimes brady. a quick check on one day doesn't catch it. I didn't get the pots diagnosis till my tilt, because my tachy isn't usually instant--according to r. fouad I have "late tachycardia"--meaning it takes a little bit to kick in.

My tachy seems to be late too. The neurologist I saw yesterday was iffy about the POTS diagnosis because she thinks heart rate is supposed to shoot up after a minute of standing, and she seemed confused that my blood pressure didn't do anything abnormal. It usually takes about three minutes for my heart to start doing weird things, and my pressure seems to fluctuate.

Thanks for all of your responses...Maybe I should give the beta blocker a try just to see what will happen...I can always wean off of it if I get an appointment with Mayo so it doesn't interfere with their tilt.

The neuro isn't saying it's in my head. She sees that there's something autonomic going on. She just doesn't want to pigeonhole it to POTS until an expert checks me out.