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Posted

I have a working Dx of POTS, when hospitalized back in March for multiple episodes of presyncope my orthostatic pulse would go from 62 to 124 without being orthostatic on BP which would stay pretty steady. I was scheduled for a tilt table in May which got cancelled due to Covid-19. Now scheduled for August. I'm very anxious as I would need to get off my florinef .2mg daily and paxil which I just started. I've been feeling like my POTS is getting more under control and I don't want to go into 5 days of POTS h*** by quitting my florinef and then climbing back out of the POTS hole again. I don't have enough time left to do a slow taper off the florinef. My PCP said taper down .05mg every 2-3 weeks.

I'm sure the tilt table will confirm POTS but will the results make a meaningful change in my treatment which is currently .2mg florinef daily, 6000mg sodium daily, 3 liters clear water daily and exercise every other day.

Also the tilt table I'm scheduled for is a weight bearing tilt table, not the kind where you are strapped in so there is no weight bearing by your legs. Does this make a difference in results?

Thanks!

Posted

@Dale H - I was not aware that there are two kinds of TTT. The normal TTT is when you get strapped on a bed with a foot board, so when they stand you up you bear your weight on the foot board. So there would not be a "non-weight bearing" TTT.  

Posted
21 hours ago, Dale H said:

'm sure the tilt table will confirm POTS but will the results make a meaningful change in my treatment which is currently .2mg florinef daily, 6000mg sodium daily, 3 liters clear water daily and exercise every other day.

It could well make a difference if you have a comprehensive TTT. (not just the standing in place for 45 minutes). During my testing they did about 5 other tests designed to monitor the ANS when it is stressed by certain things (for instance a grip test among others). All this produced a lot of data on the functioning of the ANS and if you have a good specialist, the results could well change your treatment—mine did. Good ANS testing (or even just an extended upright tilt) is difficult as it will bring out your worst symptoms so make sure that you have the right to stop the test if it is too much and that you have a recovery plan. I stopped the test when my BP went to 88/80.

21 hours ago, Dale H said:

Also the tilt table I'm scheduled for is a weight bearing tilt table, not the kind where you are strapped in so there is no weight bearing by your legs. Does this make a difference in results?

I’ve also never heard of anything but a weight bearing test—the straps are just to help you stay upright without moving.

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