Newly Diagnosed POTS/ SFN
 

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!!!

Quote Edit

Without knowing more about your conditions and symptoms I would have to agree with the rheumy or pulmo treating your sarcoidosis. If your sarcoidosis is stable and not requiring biologics at this point, then just treating the POTS is reasonable and appropriate.

It doesn't sound like you have much involvement with the SFN...other than some tingling and of course, the POTS. Therefore, I don't know if any treatment specifically for the SFN is necessary at this point.

If things start getting out of control with SFN and POTS, then of course addressing the root cause (Sarcoidosis) would be best approach. But it seems you are pretty stable right now (a good thing) and it's always best to use the least amount of intervention as possible.

Hope this helps.

Hi,
Are you taking any supplements ? keeping a healthy diet ? doing any physical activity ?
It helped me with the POTS, the tingling/burning feet and numb hands.

If your SFN progress then an immunological treatment such as IVIG might help. A few months ago I got Rituximab (IVIG is a far more conventional treatment to SFN), which has done miracles with the POTS. I got this treatment because I could hardly function at home. If you are able to function 95% it is probably not relevant.

En bloc,

Thank you! The sarcoidosis was found on accident after an episode of SVT where I went to the ER as I didn't know what was happening. That led to an X-ray which then led to biopsies and all kinds of things. I have known sarcoid in the chest lymph nodes and THAT IS IT. It's not even in my lungs which is GREAT, just so weird that it is attacking my nerves. That is usually late in the course. I hate to say why me, but I am.. HAHA! I am 33 and have some serious living to do with my 3 youngins!! You have given me some hope though. They seem to think there is no reason to treat the sarcoid because I have no symptoms from the sarcoid. Truly the only symptoms that I have are tachycardia, shortness of breath and tingly hands, feet and outer thigh. None of this holds me back. Well the tachycardia and SOB does slow me down SOME, but I was never a runner or anything :)

Do people live long lives with SFN / POTS? I understand the quality might not be great, but we are getting some new treatments, right? I know stress isn't good, and I have talked to my family dr about freaking out about this, but I'm scared! It helps talking with others that live this life. I just want some hope that I can at least be here for my kids, even with some disabilities!

No, I am not taking any supplements. My diet is pretty good and my physical activity is chasing and hauling 3 kids around. I work 2 jobs, but 1 of them is a desk job. I also am getting my masters degree, but that is online so again sitting down. Could you all give me suggestions on supplements (I have to be careful with Vitamin D because of sarcoidosis). Any certain diets that are helpful for POTS or SFN? I know that pushing fluids is crucial but it seems like water just goes right through me so I don't see what the benefit is when it goes right out :)

Does SFN/POTS progess quickly? Is IVIG or Rituximab something you always have to take or will it make the disease go into remission? I know that when people have POTS (without SFN) they can live forever with it. They just control it. Is that the same with SFN? I have also read something about cardiac autonomic dysautonomia or something like that. Is that what we have or is it different? There are so many things and sometimes Google can not be my friend!

People can lead relatively normal lives with dysautonomia. It all depends on the severity. The treatments are limited for some aspects and widespread for other aspects. Lifestyle changes are a must to adapt to a new way of living when symptoms become severe.

I have had severe dysautonomia for 20 years, and raised my son (now 25). I am disabled, but I can function in my own way through lifestyles changes, acceptance and adapting to new ways of doing things. You must have a positive attitude (which it sounds like you do) and not dwell on what you've lost...but stay focused on what you still have.

Your kids will learn to adapt as well, and even help you out when they can.

There is always research, so I'm sure there will be new treatments 'if' you need them...which you may not.

I'm sorry to hear that you have been living with this for so long. I'm sure it has been very difficult along the way. I hope that you have had a great team behind you along the way cheering you along. You are so right though, I cannot dwell. Even now, with all of the unknowns...I cannot dwell and I need to keep my head held high and move forward, if not for myself, for my children. They need a happy, healthy mom and that is what I will be. Thank goodness for research and support groups!