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Comments submitted by a patient:

He is a kind and Clever man who will put you immediately at ease,which for a pots patient is quite a relief!

Dr Chris O'Callaghan is a Clinical Pharmacologist who sees new patients in his private practice and he also runs the Blood Pressure Clinic at Austin Health which specializes in diseases of the autonomic system including POTS, chronic fatigue syndrome and autonomic neuropathy.

Comments submitted by a patient:

Julia is an absolutely brilliant doctor.

Comments submitted by a patient:

I saw Dr. Frisca Yan-Go for my POTS. I was not comfortable with her approach. She totally disregarded EDS 3 as a contributor to POTS. She told me yoga, deep breathing, stretching, Centrum silver, Tums and V8 would be the base at calming down my autonomic nervous system. I had done a lot of holistic/eastern experiments long before I saw her, and it was insulting almost to have her lecture me on the basics of relaxation. She is obviously incredibly intelligent and does a lot of work with sleep disorders...but didn't seem to listen to the patient. I was not comfortable enough to go back to see her. I would not recommend her for POTS if you live in California.

Comments submitted by a patient:

I found Dr. Friday to be an extremely kind, caring, thorough and knowledgeable professional in the area of cardiology and autonomic dysfunction. The appointment was 2 ¼ hours.  During that time she went over my health history thoroughly, examined me, explained and educated me about autonomic dysfunction very thoroughly and then answered all of my questions very thoroughly.  She said if I had any more questions I could call or e-mail (which would be faster). She made some recommendation for follow up with a gastroenterologist who also specialized in autonomic dysfunction along with some other changes.  I would not hesitate to recommend her and rate her an A++ doctor.

He is with Los Angeles Cardiology. He is a world wide expert with dysautonomias that occur with the heart.

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Dr. Cannom's specialty is not dysautonomia.  Dysautonomia is never mentioned in a single one of his 41 articles on PubMed. The biography on his website doesn't mention dysautonomia either.

Comment submitted by a patient:

He is a really amazing doctor who is willing to work with a patients and tailor the treatment plan.

Comments submitted by a patient:

He's a phenomenal doctor. I saw three different cardiologists, and Dr. Kluger was the only one that really knew what was going on. Diet and fluid changes were tremendously helpful and drug adjustments were second nature to him. He is very knowledgeable. He changed my life.

Comments submitted by a patient:

It isn't very often that I find myself leaving a doctor's appointment feeling so happy, relieved, and overall impressed. Between Dr. Kusumoto and Dr. Thompson, it isn't so bad being a
Floridian with POTS anymore.

Comments submitted by patients:

Dr. Thompson diagnosed me with POTS back in January of this year. He is a very caring and compassionate Doctor.  He has POTS himself, so he truly understands what I am going through. He is always available to help and does not hesitate when I need him. He has been so supportive throughout my ordeal. He is a truly great doctor and person. I feel that I am getting the best help possible. I thank God for Dr. Thompson and his help.

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I thank God everyday that Dr. Thompson was there when I got sick.  I was being given so many diagnoses but no answers by my other doctors.  I lost faith in the medical system and felt out there by myself.  Dr. Thompson gained my trust back.  His compassion and knowledge in the field and willingness to try new things puts him on the forefront in his field.  His quest to get answers to things puzzling him or see what others are trying or investigating shows he cares.  He was giving me fluids back in 2002, long before any literature was showing up on the web about hypovolemia.  I highly recommend Dr. Randy Thompson, not only for anyone to go to but any awards out there for his compassion to help those of us suffering while he himself has this puzzling syndrome that takes on many forms.

Dr. Sinan Gursoy
Dr. Stephan L Moore
Naples Interventional Cardiac Electrophysiology LLC
311 Tamiami Trl N Ste 201
Naples, FL 34102
(239) 643-9977

Comments submitted by patients:

I was diagnosed by Dr. Gursoy as a hospital inpatient.  He was called in after countless tests and several specialists(2 cardiologists, 3 ER doctors, a neurologist, a hospilist, and a GP) could not diagnose the problem. After reviewing all of my tests and symptoms Dr. Gursoy almost immediately diagnosed me with POTS.  I followed up at his office where I was greeted by a polite office staff. Dr. Gursoy may not have a soft bedside manor, but he was through and explained POTS with a good understanding of all of the facets of the disorder.  I liked his straightforwardness and was reassured that he had many patients with this condition.  He said that POTS can be very difficult to live with and said that should I ever need to discuss anything not to hesitate to make an appointment to see him. 

Dr. Stephan Moore is also in this office and I have seen him once. He seems to have just as complete an understanding of the POTS patient as his senior partner, Dr. Sinan Gursoy. I would recommend both doctors in this practice.

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I felt Dr. Gursoy lacked tact and clear understanding of this disease and seemed to not want to deal with me after the diagnosis.

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After a beta blocker and clonidine didn't work, Dr. Isakow added a new drug, Valturna, which lowers blood pressure by reducing aldosterone and salt. This was the worst thing possible for my hopovolemia and hyponatremia. I am now VERY sick.

Dr. Gilden can also be seen at:

RHC/St. Mary of Nazareth Hospital Center
2233 W. Division Street #200
Chicago, IL 60622
312-770-3455

Comments submitted by a patient:

Dr. Gilden is warm, caring doctor who will consider many approaches to a complex syndrome.  Highly recommended.

Comments:

Dr. Deal is a cardiologist with a special interest in dysautonomia.

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My visit with Dr. Deal was very disappointing. I would not recommend her.

Comments submitted by a patient:

Since Dr. Talman couldn’t see the symptoms during my appointment, he discounted the three doctors who had.

Dr. Zia specializes in Autonomic Disorders and did his fellowship at Harvard. He is my physician, and I know from personal experience he is wonderful! 

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Dr. Zia has been my doctor for over two years now. I had symptoms for quite a while, but no one was able to come up with a diagnosis. After seeing Dr. Zia and receiving a diagnosis, I have a lot more peace. This is an extremely difficult disease to deal with and I had been told my some doctors that it was all in my head. Dr. Zia always reminds me that I am not crazy and not to let anyone tell me so. That this is a serious disease and I am trying to cope with it day by day.

Comments submitted by patients:

Instead of the patient being able to pick a date of available appointments, you have to wait to get a call from the office with a possible date, often on very short notice, i.e. next day. I actually went for a year without being offered any dates at all. After more than two years of trying to get testing with only frustrating calls of next day appointments, I gave up with absolutely nothing to show for my time with him.

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We have had a different experience with Dr. Khurana's office than the other person has reported. My daughter has been seeing him for 3 years, and we have never had a problem getting an appointment. Like other doctors, sometimes it is a month before you can see him, but we have always been able to make appointments by calling his office, or to schedule our next appointment while we are in his office. He has several different offices. Perhaps what the other person experienced was a problem with the scheduler in one of his offices.

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I have been a patient of Dr. Khurana for over 30 years. I am always able to make appointments fairly easily. He's a very thorough and kind doctor.

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Dr. Khurana has been my physician for 15 years and I am so grateful that I was sent to him. He spends time with you and listens. As for getting appointments, I know he is booked far ahead for new patient and follow up appointments. This may have to do with the fact that he spends time with his patients and does not overbook.

Comments submitted by a patient:

Dr. Nsah is an electrophysiologist, and only sees patients with autonomic dysfunction (primarily POTS/NMH) or with heart rhythm abnormalities.  As of March 2004 he is accepting new patients from the Baltimore/DC/Delmarva region. You can contact one of his POTS patients at oct02mom@yahoo.com if you wish.

Comments submitted by patients:

I would not recommend the Beth Israel autonomic disorders center.

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It went very poorly, and I do not think I will ever get an answer from Beth Israel.

Comments:

Dr. Hohler treats dysautonomia, MSA and Parkinson's disease with autonomic dysfunction.

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After almost 15 years and countless neuro consults, Dr. Hohler was the first to take me seriously.

Comments:

Dr. Rosenthal is not a specialist, but he does perform tilt table testing and prescribe therapies for NCS.

I have been seeing Dr. Man for the past three years and he is absolutely wonderful.  He takes his time with me and is very honest. 

Comments submitted by a patient:

I have POTS resulting from Chiari malformation and EDS. This was really the worst experience I've had with any physician.

Comments submitted by a patient:

Dr. Felix Rogers is a wonderful doctor!! He is the first doctor I have seen that didn't rush me through the appointment. He sat down with me for almost an hour and was really listening to what I had to say. Anytime I have had a problem, he personally speaks to me on the phone. I have had a wonderful experience with him, and I will continue to see him!

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I was 36 weeks pregnant and in MI caring for a terminally ill family member. It became necessary for me to find an obstetrician who would be able to deliver and who understood POTS as I would not be able to return to my home state of Florida in time for my due date. I found Dr. Rogers on THIS website and cold called his office to see if they knew of any OB/GYN's that had worked with a patient with my condition.

I left a msg and Dr. Felix Rogers returned my call personally. He couldn't recommend an OB/GYN but made several calls and emails on my behalf to find someone I could be comfortable delivering my baby with. He called me several times and spoke about my condition and the affect it would have on my delivery and also offered that if the doctor he found for me had any questions they could call him directly and he would assist. He spoke at length explaining POTS and the Obstetric Patient from a recent course at a symposium on the subject he had attended within the past month.  He went above and beyond!!!

ALL of this and I was never a patient of his, never paid him any money for his time, I was a complete stranger that he showed indescribable compassion for. If I lived in MI he WOULD be my doctor, and I would recommend him to others. He is an A+ in my book!

Information on Dr. Stewart's current research study is available on our website at: http://www.dinet.org/studies.htm

Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.

Comments submitted by a patient:

Dr. Bronfin totally disregarded my diagnoses of both POTS and EDS . Overall I was very disappointed and felt completely misdiagnosed.

Dr. Lindsey Lee Lair completed her fellowship in autonomic and peripheral nervous system disorders.

Comments submitted by a patient:

Dr Klein has taken the TIME, no matter how long, to listen to my many health issues due to my POTS episodes. She has personally administered testing on me, and even consults with other doctors about my case. They also in turn have been informed BEFORE they meet with me and have been very supportive in my continued decline and possible advancement of Dysautonomia. Dr. Klein and her fellow team are patient, highly experienced, kind, listeners, and professional. I would highly recommend her to anyone who wants to FINALLY have a doctor who cares for more than a 15 minute chat. She will get to the bottom of the so many Dysautonomia issues you may be experiencing.

Comments submitted by a patient:

My daughter had been suffering for 4 years.  Within 10 minutes Dr. Hill guessed at the problem, and confirmed it with a tilt table test.  She has been SIGNIFICANTLY improved in the last 6 months – attending school and living a fairly normal life.  What a blessing!

Comments submitted by patients:

I just wanted to say that Dr. Blair Grubb, MD in Ohio is the most informed and kindest doctor I've ever encountered in my lifetime. He always takes the time to listen intently to you and always tries to give you new ideas and new things to help you even if nothing has worked in the past. He doesn't give up on you. He is very knowledgeable and skilled . His clinics often run behind schedule because he takes time with each and every one of his patients. He cares so much about each one of us. He once sent me the book "When Bad Things Happen to Good People". It was after my first visit to see him, and I didn't even know that he'd remember who I was.  He is the best and nicest, kindest, smartest doctor ever and he knows an awful lot about dysautonamia and NCS and POTS. He's written many articles and journals and books. Thank you for letting me tell you about Dr. Grubb.

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He is an EXTRAORDINARY physician-- the brilliant, yet compassionate, doctor everyone wants. My 24-year-old daughter visited every cardiologist and electrophysiologist in our Colorado metro area. She tried every treatment and medication imaginable over a period of 8 years. There seemed to be no help for her. Though those doctors were also good, reputable physicians, in the end we were referred to Dr. Grubb. My daughter is now getting her life back on the treatment he prescribed on her very first visit. We think Dr. Grubb walks on water!

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Dr. Grubb can be hard to get in touch with.  I had to wait over 6 weeks for him to call me back.

Comments submitted by a patient:

I went to Dr. Grossman for my diagnosis and my treatment. He is very good at treating this disease, and he also listens to what you have to say. He answers all your questions. I never felt like he was pushing me through the appointment. Very smart.

Comments submitted by a patient:

Dr. Fouad and her entire staff were knowledgeable, thorough, and respectful. She closely followed all testing and then made recommendations as she discussed results with staff members and me, the patient. It was impressive and a relief after I had a terrible experience at another institution that had a good reputation for evaluating dysautonomia patients. Things can change quickly at any institution, so I appreciate the value of this service. if you can afford it, go to Cleveland! Your health is worth it.

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Dr. Fouad is great on diagnosis but poor on treatment.

Dr. Mark O'connor
Toledo Cardiology Consultants
2409 Cherry Street
Toledo, OH 43608-2625
(419) 251-3700

Comments submitted by a patient:

Dr. Arden looked at my legs and saw the pooling blood. She told me about POTS. She is treating others with POTS and she trained with Dr. Grubb.

Michael W. Consevage can also be seen at two other Moffitt Heart and Vascular Group offices:

Carlisle Office
977 Walnut Bottom Rd.
Carlisle, PA 17013
717-243-6557

&

Chambersburg Office
757 Norland Avenue
Suite 201
Chambersburg, PA 17201
717-217-6881

Comment submitted by a patient:

I thought I was going to a POTS expert and DR. Ganz is not doing anything my PCP couldn't do for me. I was very disappointed.

The Vanderbilt group has ongoing research studies attempting both to understand the physiology causing POTS and also to access novel therapies for POTS. Read more about Vanderbilt's research on our website at:
http://www.dinet.org/studies.htm

Dr. Levine is currently examining the mechanisms behind the remarkable gender specificity of POTS. Interested, newly diagnosed patients who live in the area can contact his office for further information.

Dr. Gil I. Wolfe
Department of Neurology
UT Southwestern Medical Center at Dallas
5323 Harry Hines Blvd.
Dallas, Texas 75235
214-648-9574
PAF, Autonomic Peripheral Neuropathies
Autonomic Laboratory
Treats adults

Comments submitted by patients:

Dr. Abdallah is wonderful.  His practice is almost entirely dedicated to dysautonomia. He sees patients up to the age of mid-twenties.

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Dr. Abdallah correctly diagnosed my son after many visits to other specialists.  My son has both severe POTS and a mast cell disorder, which is very uncommon especially given his age (8).  Dr. Abdallah uses not only testing, but his wealth of experience to get the diagnosis and treatment right.  I've been to many other experts and traveled hours to see other doctors, but Dr. Abdallah was the only one who correctly diagnosed the mast cell disorder as the underlying cause for my son's severe POTS.  The medication helped almost immediately.  If you need someone who is kind, thorough, and most importantly really, really good, see Dr. Abdallah.  You will be very glad you did.

Primarily sees patients that have orthostatic intolerance as a feature of another syndrome, such as CFS, Ehlers-Danlos and related hypermobility syndromes.

Comments submitted by patients:

Dr. Barboi has been an exceptional physician during the treatment of my personal autonomic condition. He is open-minded to trying a variety of medications as well as alternative activities such as acupuncture and massage therapy. He is truly dedicated to his work, making you feel better, and genuinely cares about each individual who walks through the door. I have never been under the care of a more competent and kind physician as he. He is a diamond in the rough.

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Dr Jaradeh is sharp. He diagnosed both my 18 year-old son and I with dysautonomia in 2008. He has a connection with my son that is exemplary, listening to him patiently, asking the right questions, commiserating with him, and remembering the little things that makes him feel special.  We live abroad and he has gone out of his way to accommodate our situation with a ever-present smile on his face.  We have our lives back, thanks to Dr Jaradeh.

Comments submitted by a caregiver:

I took my son to see Dr. Cooley from your Wisconsin list. He was wonderful.  He didn't talk down to my son, he listened patiently, and he even took the time to check for any news or updates online before prescribing a medication.