Hello,
I did a TTT last week and my heart rate went from 84 laying down to 144 standing up almost immediately. My blood pressure stayed consistent throughout the test. My heart rate did end up going down to about 120 after about 20 minutes into the test so I didn't stay at 140 so I did feel a little better after standing for a while. The dr had already had me on toprol 12.5mg twice a day for the tachycardia before this. The only reason he did the TTT was because I have sarcoidosis and my pulmonologist felt that this autoimmune disorder was causing my tachycardia. He felt that the POTS was being caused by Small Fiber Neuropathy caused by sarcoidosis. So the TTT test proved that I had POTS. Just wondering how many of you have SFN and what you do for it. My pulmonologist for sarcoidosis (he is the leading one in the US so very good) does not want to treat the sarcoid and wants to stick with my treatment that the electrophysiologist has given for the POTS which is the toprol, extra salt, lots of fluids, compression stockings and get up slowly, drink before getting out of bed, etc. I do have tingling in my hands and feet. I am already on topamax as a preventative for aura migraines. I increased my dose of this and it has seemed to help the tingling of my hands/feet/upper thigh and face somewhat so obviously the SFN is affecting those areas.

Anyways, just wondering who here has SFN, do you treat it, what type of dr do you see for it? Do you think watching and waiting and just treating the POTS and SFN symptoms is all I need to do with topamax and fluids/beta blocker? I just want to make sure I'm not harming myself. I have 3 children that I need to be here for. I am able to function at 95%. I know that I am better off than many as I am able to work, and function and I'm so grateful for that. I just want to make sure that I don't just sit back and do nothing when this could become very serious. The tingling affects me some during the day, but the painful heels and thigh happens at night when I'm sleeping and pressure is put on them. THe topamax doesn't seem to help them at that time. I just want advice on whether I should wait it out like the sarcoid specialist says and lets see if it gets worse or do something now!

Thanks!!!

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