Irritated

General
1

Really long story short, I have POTS. I see an EP for this and yesterday I was talking to him about investigating the link between the Chiari and POTS. He keeps saying that the POTS could be transient for me, but I am less likely to believe that because of the Chiari. I don't think I got POTS from a virus. In no uncertain terms, he said he is skeptical they are related. I don't understand this at all as it is right there on Dysautonomia International's website saying Chiari can be an underlying cause. Why is it so hard to get a doctor to understand? He basically said if I had the chance I should go to Cleveland Clinic and maybe they'd have some answers but basically there is no one around here that specializes in these things. Meanwhile, I am getting new symptoms of numbness in the hands/arms when I awaken. Neurologist says if it was neurological it would only be on one side, this sounds more like carpal tunnel to her. OK, what about the horrible stomach issues and imbalance? These sound related to Chiari and POTS to me!

It's like no doctor believes that this is a real issue. I feel like I could cry.

2

Sleepbree, these two docs just, simply, don’t know about Chiari. And, unfortunately they are in the majority. The good news is that there absolutely ARE doctors who know, and who “get it.” Part of our challenge is building our “team.”

If you need to cry then let it out. This journey can be so frustrating and demeaning, a pressure release is necessary. I’m sorry you are facing this, and I’m sorry you are getting nonsense from the doctors you pay to help you.

Hang in there,
Jenn

3

I go to Cleveland Clinic for Dysautonomia/POTS and they are thorough if you have the chance yes ...go there. I have had symptoms for years and this is the only place that is actually trying to help.