What Type Of Doctor Typicall "treats" Pots/dysautonomia Besides Pcp?

[iheartcats]

I'm having a hard time finding a local doctor to treat POTS. I think I've found a PCP willing to help, thankfully.

I decided to call around to EPs in the area and one place told me 'any cardiologist can treat that' and it's 'definitely not electrophysiology.' I mentioned I'd been seeing an EP for YEARS, but I couldn't make an appointment because of this 'rule.'

I'm so baffled now. This leaves me with my PCP and my current regime and hoping I can manage. I need to start exercising (weight gain/deconditioning) and didn't want to do this without an EPs input. But I guess I will have no choice.

I really am unsure what to do. I can try a random Cardiologist but I don't see that being helpful to me or my condition.

[worththewords]

I have seen EPs in the past and right now I see a cardiologist and neurologist to manage my POTS. Dr. Grubb is an EP and we all know he treats POTS plus you have been treated by an EP so I'm surprised you would be turned away. At the same time though, I once had an EP say that he basically was for the "electrical" aspect of my heart and a regular cardiologist could treat my POTS better. I thought it was kind of odd but I did appreciate the honesty!

Can your previous EP give you a referral to someone? Or even your PCP?

Also, did you check DINET's physician list for possible doctors in your area that treat POTS?

[flop]

whilst a lot of EPs end up looking after POTS patients we aren't really an EP problem. I guess we get referred to EP because people think that our tachycardia must be an arrhythmia (abnormal heart rhythm). EPs specialise in mapping the electrical system of the heart and ablating abnormal pathways (like in people with Wolf-Parkinson-White syndrome) and the medical treatment of SVT and VT. Dr Grubb is an EP but must have learned a lot about the autonomic nervous system.

You could see a non-EP cardiologist (many of us do) but you would probably need to call lots to see if they either had experience with POTS or were willing to learn with you. I was diagnosed by a cardiologist at my local hospital - he already had several patients with POTS so knew a bit about it.

I also see an EP but he is not interested in my POTS just my syncope and my reveal device.

The other speciality who look after POTS patients are neurologists, the most experienced would be autonomic specialists. I managed to get referred to a specialist centre in London where I see Professor Christopher Mathias who is a professor of neurovascular medicine and also heads an autonomic unit. I have cut & pasted the bit below from the University website.

Professor Mathias is Clinical Service and Research Director of two leading departments specialising in autonomic and neurovascular disorders, the Neurovascular Medicine Unit at St Mary's Hospital and the Autonomic Unit at the National Hospital for Neurology and Neurosurgery, Queen Square, London. Both are tertiary referral centres for the entire country, with a number of referrals from Europe and worldwide, which deal with a variety of autonomic disorders that include abnormalities of blood pressure control (especially postural hypotension and fainting) and disorders of temperature regulation (including excessive sweating) in a wide range of neurological and medical diseases. The Professor's clinical commitments include responsibility for a Neurovascular/Autonomic/General Medicine clinic at St Mary's, and an Autonomic Clinic at the National Hospital, having admitting facilities at both hospitals.

Do you live near to any of the doctors listed on the DINET physician list?

Some people chose to have just a pcp locally and travel occasionally to one of the big specialist centres.

Flop

[iheartcats]

I've found a PCP who is willing to help manage my POTS (he has the letter from my former EP about my medicine, what is helping, etc).

I have an appointment with the one 'big' specialist in my area from the list, but due to a miscommunication, etc al my appointment is now in November and it was originally supposed to be in August. That's a long wait...and I am more comfortable with a Cardio or EP I can see without a 4 month wait. I don't mind waiting a long while for the occasional appointment with a well-known specialist, but I wanted to find a local Cardio or EP who can deal with the everydays of POTS.

It is good to know an EP isn't definitely a person to go to for POTS. That helps. I've been cold-calling Cardios and found one who's going to call me back to discuss my condition as he is somewhat familiar with it and go from there. If he agrees to take me one, I'll give it a go. If that doesn't work, I guess back to cold-calling.

Some offices won't even 'check' to see if any of the Cardios have heard of/deal with POTS. They said they need my PCP to set up the referral. I try to tell them yes, he will, but I need to be referred to a Cardio who can help and isn't a waste of everyone's time. But no, they said my PCP has to set it up and he should be able to tell me who to go to for POTS (oh if life was so simple!).

I've never looked into a neurologist so that's a thought, too. I'll see if my PCP knows of one with an ANS specialty when I see him in a couple weeks.

I'm trying to be friendly, positive, etc. but some of the people I meet on the phones! It's horrible and frustrating and making me so upset. I know I shouldn't let it, but it's so stressful.

[flop]

It is good that you have a supportive PCP, to be honest with you I think that your PCP will be the most important doctor.

I hope that the "possible" cardio is able to help you and has experience with POTS or is willing to read and learn for you.

Good luck,

Flop

[Lizzegrl]

In my case, I've found that the best combination is a combined EP/cardiologist office. My EP that manages me locally and referred me to Dr. Grubb does all my EP studies and ablations (I do have multiple arrythmia issues) and the cardiologist manages the rest of the issues. I see Dr. Grubb every few months and they communicate all information to my cardio/ep office for monitoring and management on a day-to-day basis. This has worked really well, since if it is an issue with meds or my BP, Dr. Grubb really can't and shouldn't manage that long distance. I do make sure that everybody gets copies of all reports and that my medications are up to date everywhere to make it easier for them all to keep informed.

That might be something to think about when searching for a doctor to follow your case. It didn't work very well the last EP doc I saw, However. he was completely not interested in dealing with a complex case that he couldn't ablate and be done with, so I found one that was willing to work closely with other docs. In the end, he is the one that actually diagnosed POTS and sent me to Dr. Grubb.

FYI, my POTS tends to be much more cardiac in nature than many of you, so I've never actually seen a neurologist.

[potsgirl]

I have what I think is a pretty good system. I see a cardio who knows POTS and deals with my heart problems/pacemaker; I see a neurologist about my migraines, weakness on one side of my body, and seizures; and I see a terrific PCP who is more than willing to learn and give me the referrals I need. I'm very fortunate to have my current list of workable doctors that I like and I make sure they all have the same information from tests or office visits in their files.

Doctor to add to your list if you're in or around Arizona:

Dr. Gordon Ewy / Connie Doner, FNP

Sarver Heart Center

University Medical Center

Tucson

Dr. Ewy is the head of the heart center, and is the cardiologist who developed the new form of CPR. He's worked with numerous cases of POTS patients, and his FNP, Connie, is also very good. Not quite a Mayo set-up, but close.

Cheers,

Jana

[Guest brianala]

So far I see my PCP, a general cardiologist and an EP. I am getting a referral to a neurologist because of recent problems with vertigo. I don't think there's any one doctor that can manage all of your symptoms.

[janiedelite]

I was seeing an EP/cardiologist who tried me on florinef and midodrine. I developed problems with each of those drugs and he stopped returning my phonecalls and whenever I asked for his opinion regarding my odd symptoms he told me, via his secretary, to just go to Mayo. My POTS symptoms didn't respond to his limited treatment options and I my symptoms were more than he could handle. But I did find a neurologist who is willing to work with me. He admits he knows very little about dysautonomia, but is the one who got me referred to Mayo and is willing to implement the Mayo doc's orders and monitor me.

FYI, this is the second neurologist within this same practice that I've seen. The first one completely blew me off and said I had no neurological problem, but after seeing several other specialists who insisted I had neuro problems I went back to that practice and requested a different doctor. My current neurologist was specifically recommended by the rheumatologist I was seeing at the time. Can your PCP recommend anyone in particular??? I think it helps to have a recommendation because it gives your symptoms more validity in the new doctor's eyes and they will want to do their best to work with your referring doctor. Also, your PCP should recommend someone that other complex patients have had success with in the past.

[firewatcher]

I think it depends on your primary symptoms. If HR and BP or arrythmias are your issues, then a cardio would be your best bet. THere are many other doctors who see dysautonomia in other forms:

Endocrinologists: neuropathy and dysautonomia with diabetes mellitus, addison's and pituitary issues.

Neurologists: neuropathy and dysautonomia with Parkinsons, MS and other nervous system disorders.

Nephrologists: neuropathy and dysautonomia with renal failure.

The problem, of course, is finding a doctor that believes that you can have dysautonomia without an OBVIOUS underlying disorder. Unfortunately the ANS controls and crosses over all the systems and can screw you up pretty much anywhere!