New and need help. Also doctor /Tampa, FL or Central Florida

[Honey bean]

Hi, 

I am new to this form and am grateful for all the interesting information and experiences that are sheared.  

I have been struggling for sometime and was recently diagnosed with Dysautonomia / Pots this month. I have been seeing doctors in New York, but I live in Tampa, FL.  It is very hard to travel at this point. I am looking for a doctor in Florida who can help me manage all the trial and errors that are necessary with finding the right drug combination . I have just started on Mestonin and Amilodipine, and salt tablets. I am having trouble telling the difference however between side effects of the drugs and symptoms caused by my condition. I would also welcome any input on how other members have gotten to the point where they were able to figured out  the right combination of drugs. I am also doing all the other standard protocols prescribed . She is  considering a small dose of Cymbalta or a similar in a few weeks. 

I have gone for a consult with a doctor yesterday who was an internist but really was not familiar with these disorders. Even if they are not a specialist I would be happy to find an internist who could work with my New York doctor, but would be more accessible,  but was familiar with these disorders.  

I would welcome any input.

Honey Bean

 

 

 

[Sylvie33]

Dear Honey Bean,

Welcome.  Yes, you are in a different world now, but we all share it here!

I think the most important piece of advice I can give you is to know you have a new role in life -- as a medical researcher.

We have a disorder that is not even well-known or dealt with among neurologists, so it is really important to gather and attempt to understand as much information as you can.  It is a smart move to first go to this site.

There is great information, including a physician's list, here.  

So again, welcome, and I hope you find the help and information you need soon!

--Sylvie

 

Edited May 6, 2016 by corina

[Honey bean]

Thank you for your help. My blood pressure goes from very low to high , above normal. My Internist suggested he amlodipine.

He felt it would keep my high reading lower, but I think it makes me more tired. I am going to call Dr. Cabello and that would be wonderful if he could help me. It is hard working with my doctors in New York in an attempt to get to the bottom of this.

 I have found this site so helpful. Especially when everything is so overwhelming. People are so kind to post info. 

The next suggestion they want to try is a low does antidepressant. And I will do my research here.

Thank you.

Honey Bean

 

[statesof]

Here is the physicians list http://dinet.org/index.php/physician-list, you can look up knowledgable POTS doctors by state; it looks like there is four near you.

[Honey bean]

Thank you for the list. My question is is it worth going to Vanderbuilt and do they do more specific testing to help get to the underlying problem ? And would a visit help determine  what drugs would help.  I have a neurologist in NY who diagnosed the pots/ dysauto. But she is not a Pots Doctor , although she has me on  Mestinon.  She next want to try me on cymbulta .My internist has me on amlodipine . I just do not want to make another trip to find out that all they can do is ,more experiments with drugs.

Thank you.

HB

[Tachy Matt]

Hello Honey Bean! I am new to this forum as well even though I have suffered from POTS for a little over a year now. I would recommend you look around this site a little bit as it has wonderful articles and information for fellow POTS warriors such as yourself. My best advice for you right now would to listen to your body first and foremost and try not to overdo yourself or stress yourself out too much. Also, be particularly cognizant  of the summer heat in Florida since that can bring on symptoms even more. Try not to spend too much time outside in the middle of the day so you don't wear yourself out. If you are able to, walking at night is the best time to get some exercise without the ridiculous heat.

[Guest KiminOrlando]

Hi. I'm in Orlando and have a good gastro, but that is really it locally. I ended up at MUSC in Charleston, SC because of autoimmune issues and just unloaded everything on them when they went to take my patient history. They got me help. I was referred to Vandy and it was well worth the trip. My treatment is run out of SC with my GP looped in down here. I couldn't find a good Rheumatologist in Orlando and have just tried out a Cardiologist a few weeks ago. He at least knew what I had when I told him I had Pure Autonomic Failure. I have to have minor surgery at a local hospital and the surgeon refused to do it unless I found a cardiologist he could call in case something happens. 

If you find someone, please let me know. I would gladly drive to Tampa for a good doc. I almost got entubated in the ER one time because my O2 was in the high 70s and I was just dehydrated from an infection. They really had no idea what to do with me even when I told them what I had. Luckily, lying flat in a bed with an IV in my arm brought up my BP, which helped my O2. 

I wish you luck. 

Kim

[Katybug]

There are 3 FL docs on the physician list. Don't know if they are near you. 

http://www.dinet.org/index.php/physician-list?view=physicians