I have been diagnosed with POTS in August 2009. I was diagnosed at Mayo, but is hard to travel there and no meds were given to me. I am currently on Zoloft 75 mg everyday. It did seem to help for a little while, but I am falling backwards again. My primary doc is reluctant to prescribe any meds. So I am looking for a specialist in Colorado or Utah? My main symptoms are anxiety, tachy, fatigue(especially in am), frequent urination, sometimes dizzy when sitting. I have increased my salt intake, and raised my bed three inches. I would appreciate any help or advice. I wish everyone well.
Unfortunately, I'm not aware of a Dysautonomia Specialist in your area. Hopefully another member of our community will be able to chime in with a recommendation for you. Have you tried making an appointment with a Cardiologist or Neurologist at a local academic teaching hospital for treatment? Since you already have a proper diagnosis, perhaps they will be able to treat your condition.
Benzodiazepines such as Klonopin are sometimes used in Dysautonomia patients with significant anxiety. Beta blockers are another common treatment, which can help with both anxiety and tachycardia.
You mentioned increasing your sodium intake, have you also increased your fluids? That too is very important as patients with Dysautonomia are very sensitive to dehydration. Sports drinks such as Gatorade are often recommended.
I'm not sure if it works the same way at Mayo as it does at Cleveland Clinic, but now that you are an established patient there, you should be able to get some additional guidance by phone. I would definitely recommend finding a local cardiologist or neurologist at a major teaching hospital to oversee your care (working in concert with your primary care physician), but it may be the case that your local doctor can call the doctor(s) who evaluated you at Mayo and ask for further guidance on what your treatment plan should be and what medications to try.
This is how my care has been managed locally since I was seen at Cleveland Clinic, with occasional calls by myself or my doctors here to get advice or clarification on my treatment plan or changes in my condition. My doctor in Cleveland has continued to be helpful. So maybe getting back in contact with Mayo over the phone would be worth a shot as well as looking for a specialist locally to oversee your treatment.
I'm sorry I don't know of any specialists off the top of my head in your area.
I have had this since june 2010 and it is now being more widely recognized. Suprisingly, the electro physiologist (EP) cardiologists are the experts on this.
I have cardiomyopathy, was referred to EP and both MD I saw immediatley identified I also have POTS
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