Mayo Mn Pots Clinic, Dr. Sandroni

[kitt]

Hi all,

I'd be interested in hearing from people who've gone to Mayo in Mn and gone through the 'pots clinic' there. I have an appointment with Dr. Sandroni in January.

Only 2 doctors at Mayo in MN evaluate adult pots patients, and they are Dr. Fealy and Dr. Sandroni, both are neurologists.

Most of the people I know who've been through the Mayo MN pots clinic have seen Dr. Fealy, one with hyperadrenergic pots like me saw Dr. Sandroni.

Dr. Sandroni has published 80+ papers on dysautonomia, and was the keynote speaker at the 2013 International Dysautonomia Convention in Washington D.C. Her hour long speech is on Vimeo.

Anyone? Thanks for sharing.

Best,

K

[KareBear]

I saw Dr. Fealy at Mayo MN in 2008. I had already been diagnosed locally with POTS, OH, etc but my parents wanted another opinion and I had already tried the typical POTS meds with no improvement of symptoms so they hoped Mayo could help more. I have to say the clinic is extremely efficient, employees and staff are wonderful, everyone is super helpful there. I was truly impressed. The testing and appointments were on time and I got immediate info and results for the most part. It is an exhausting few days and took everything I could to even be wheeled in a wheelchair to my appointments. They pack a lot into a few short days.

Things initially did not go so well when I met Dr. Fealy, but after the initial improper first impression he had of me was cleared up things went better and he was knowledgeable and pleasant. (I can give more details in a PM). Unfortunately other than offering Mestinon which I had not tried yet, they had no other treatments to offer me. He diagnosed me with "severe adrenergic dysfunction" and was in agreement with my current diagnosis'. They were great for getting a concrete diagnosis but I didn't come home with anything other than that, and I already had been diagnosed so for me it only gave me more piece of mind and my family too I guess.

There was no further treatment plan set up and no looking into what may have caused this. I was still just as disabled after my visit there so if anyone is looking for a cure you probably wont find that but will get a thorough testing and proper diagnosis along with initial treatments if you haven't begun those. At least this was my experience. It was a good experience overall.

[kitt]

Thanks MedicGirl!

Thank you for sharing your experience. I really appreciate it.

Am not going to Mayo for a Dx, already have a dx of hyperadrenergic pots, but am going to see a true autonomic specialist and especially for specific testing that I've not had done here.

Mayo does an amazing job of not just testing, but scheduling appointments with various specialists. It would take a year at home to get what they can do in a week. And it will be done with all doctors involved communicating with the the other doctors.

Anyone else have experience at the Mayo pots clinic in MN?

Thanks!

Best,

K

[Jan]

I saw Dr. Sandroni probably 10 years ago. It was a year after my initial visit to Mayo where I got a POTS diagnosis. She had me repeat tests, said I was doing a bit better but still had enough changes in heart rate to be diagnosed with POTS, said I would probably continue to improve, stay the course. No follow up. I was taking Florinef and Lorazapam at the time. She didn't change or suggest other meds. She was very nice and spent quite a bit of time explaining stuff to me.

One thing she did say that has stuck with me, is when I told her I felt better at home where I didn't walk very far vs going out of the house, she said the body needs to retrain itself and that I needed to push myself to walk further. That was really good advice. And the idea that I could "train" my body was extremely helpful to me emotionally in that I started to feel like my body and I could work together to get better, where I used to feel like I was kind of fighting with my body.

[lynnie22]

I was at Mayo almost a month ago but was not scheduled at the clinic I hear because I am over 50 and was scheduled to see the same doctor I saw three years ago, a cardiologist, who arranged my consults and whatever tests I had. I saw another POTS doctor, Dr. Low, so there are more than two. He did not order additional tests. I went because my condition has declined. What was emphasized to me was EXERCISE, and the fact I was deconditioned. One of the tests also showed a hyperadrenergic state when standing.

However, I am sorry I cannot offer any feedback on the clinic itself. I've heard very good things about it and the two doctors mentioned and of the clinic and am sorry that they are not taking us older adults.

Good luck on your visit!

[kitt]

Jan, thank you so much for sharing your experience with Dr. Sandroni, I really appreciate it.

I had an experience with Mayo after multiple surgeries, (the last one performed at Mayo MN) and I was so deconditioned after being bedridden for so long, my doctor at Mayo in Fl. very strongly insisted I go to a well know pain clinic where they have you work with physical therapists 8 hours a day, five days a week and more hours on weekends. I was an inpatient there for five weeks, and the physical therapy was so intense I thought I'd never get through each day. I'd fall into bed at 5:00 p,m, and sometimes didn't go to dinner, I was just too exhausted. It was beyond exhausting. At the end of five weeks I felt like Super Woman! I was a new me...All due to moving my body so intensively for five weeks.

So Jan, that advice she gave is priceless. I didn't have pots at the time, but I attended many seminars there about why the body needs to keep moving and what happens when it doesn't.

Lynnie22, I'm sorry you didn't go through the pots clinic. I also heard the Mayo MN pots clinic were not seeing patients over 50, but shortly afterwards they stated they were not seeing ANY new patients because Dr. Fealy and Dr. Sandori were just too jammed with appointments.

It was the Mayo pots clinic that told me there were only two doctors seeing patients, and that Dr. Lowe was no longer seeing patients.

I'm so impressed that you got to see Dr. Lowe. IMHO he is the foremost experienced dysautonomia researcher and clinician in North America.

I would have been blown away to get an appointment with Dr. Lowe Lynnie22, that's amazing that you had that experience.

You mentioned that one of the tests confirmed a hyperadrenergic state when standing. I'm guessing that was the catecholamine test when they tested your noripinephrine (NE) as well as dopamine and a few other hormones, neurotransmitters etc...

Do you happen to have the results of those tests? If you have them can you see what your NE test result was when standing? It would be interesting to know! Particularly if it over 600.

Thank you again for sharing your experiences, and Lynnie22 thank you for the well wishes!

Best,

K

[lynnie22]

Hi Kitt,

Well who knew about Dr. Low? He came in after his assistant interviewed me but his major emphasis was on a need for exercise, and that the lack of it is the major reason people like me return. And yes I do have access to the test results and the NE jumped to 1100 when standing from 550 lying down. I had no idea Dr. Low no longer saw patients. Wow.

I still would have liked to be in the POTS clinic, but thank you for showing me the positives. THe cardiologist who saw me was very good, and he found many more things besides POTS for me to follow up on, two red flags....and other things....I was so thankful to have him read all my test results with such acuity.

It was a tiring trip for me and although I don't have too much to follow up on for the POTS, I sure know that exercise needs to be in my immediate future. He is sending me I hope some exercises for me to follow along with my recumbent bike and trying to swim.

Anyway, once again, thanks and good luck to you! Let us know how you do.

Lynnie

[Psalm 23]

Hi Kitt,

I just wanted to send you my best wishes for a productive appointment. I go to Mayo, AZ so I can't comment on Mayo,MN but I did listen to Dr. Sandroni's 2013 International Dysautonomia Convention speech and was very impressed. I'm sure seeing her will be a positive experience. Keep us posted on how it goes.

Janet

[kitt]

Thank you for your well wishes Janet!

I found this video featuring Dr. Sandroni speaking about pots and testing done at the Mayo Clinic. Think it will be of interest to anyone with pots.

[corina]

Thanks for putting up this video Kitt! I wish I could go there to determine what is causing my dysautonomia! Good luck on your appointment!

[kitt]

Here are some great highlights from the 2013 international dysautonomia research conference...Answers a lot of questions for people who are creating threads asking about these specific topics.

http://www.dysautonomiainternational.org/pdf/2013ResearchSummary.pdf

[jesse1919]

Thanks Kitt interesting conference. Good to see some new hospitals/ universities researching dysautonomia that I haven't seen involved before.

I saw Fealy at Mayo. He was good but I left feeling that more research is needed. The clinic certainly gets things done faster than any other experience I've had.

[Kris4444]

I went to Mayo MN last January for ANS testing but saw Dr. Bennaroch who is a neurologist. I was diagnosed with a hyperadrenergic state due to high levels of NE. Everything else was normal.

I was very impressed with Mayo and his much testing they were able to do while I was there. I am currently weaning off the clonidine that they started me in as I want to see what's going on with my body off meds but my symptoms are worsening so...

Good luck in your visit!

[CarrieJessica]

I am going in march and will see Dr Benorroch

[kitt]

Good for you CarrieJessica,

He may be returning to seeing patients or perhaps seeing patients part time. I've been in touch with the coordinator at Mayo who runs what they call the 'pots clinic' and it was she who told me only Dr Fealy and Dr Sandroni were seeing patients.

Dr Benorroch is one of Mayo's primary dysautonomia researchers. Both he and Dr Sandroni do a lot of research, and certainly Dr Low. Dr Low is no longer seeing patients, but still doing research.

I hope you have a good experience! I've communicated with another Dinet member who saw Dr Benorroch and she spoke of him very favorably.

Best,

K

[Natops]

I was just at Mayo Neurology MN last September. I was there to see a specialist about the specific antibody I have. Since I was there…. They wanted me to do the tilt table ...….which I did not mind. They said I did not demonstrate any POTS… which was weird because when I got a copy of my results…. (which I don’t mind sharing with you) … it kind of looks like POTS to me.

Supine – 116/78 105

1 min - 120/98 119

5 min - 114/70 129

10 min 108/80 133

I thought anything over 120bpm after 10 minutes was considered POTS.

[JuneFlower]

I think its >30 beats over baseline for adults and >40 beats ver baseline for children

[Chaos]

@Natops - yes, I've seen that definition for POTS as well- >30 BPM or exceeding 120 BPM at any time during the first 10 minutes of standing.

[kitt]

I saw Dr. Sandroni at Mayo MN earlier this month and went through the pots autonomic clinic and visited other specialists as well there.

I failed the autonomic ten minute TTT at Mayo, (my heart rate went up more than 30 beats) so have pots, but more interestingly I also had a TTT in the Cardio department which is very different.

At 13 minutes my heart stopped beating for 7.5 seconds. (Obviously I passed out prior).

This is VERY unusual to have this result, and the DX was autonomic neurocardiogenic syncope. I asked Dr. Sandroni how often she's seen this, and she said 'Never'...Partly because my HR went from 89 to 75 to 33 beats per minute and then my heart stopped beating. No beats recorded on computers between 75 and 33.

So now not only do I have the tachycardia with pots but the bradycardia associated with neurocardiogenic syncope (NCS).

In the first 10 minutes of standing my heart rate goes up...Afterwards it starts to go down and sometimes plummets as it did on the TTT. The NCS is much more of an issue than pots.

The cardiologist I saw at Mayo suggested I have a pacemaker put in. I saw my cardiologist here who is also a surgeon and he agreed with me that we should 'wait and see'. The issue with NCS is that it can become an issue with driving, (getting dizzy with a low heart rate and passing out). A BIG issue.

It's complicated. Both pots and NCS are associated with a very high NE. Meaning I'm hyperadrenergic. Extremely. NE over 1350 sitting at Mayo and over 1400 over a year ago. (Over 550 supine for those of you you've been tested at Mayo.)

Best,

K

[Chaos]

Interesting....and scary. You always seem to be an "interesting" case for the docs.

Was wondering how your trip to Mayo went. Thanks for sharing.

[corina]

Thanks for sharing Kitt! I'm having "brady" problems also though not passing out (at those days I can't leave my bed). It seems they are a kind of flares, they come and go. Also, my hr doesn't come up much (if at all) when exercizing. I'm currently working with a physiologist who monitors hr, breathing and recoup time to figure out what might be wrong and how to proceed from here. The outcome will be discussed with my cardio, neuro and family doctor. It takes 3 weeks to get the info they need.

[kitt]

Chaos, It's 'crazy' in terms of scary. My heart rate fluctuates from 50 to 120 daily based on posture when I look at it. Am trying to 'figure it out' but it doesn't seem possible to figure out. Trying to take it one day at a time.

Corrine, good luck with your brady issues. What do mean by flares and coming and going....Based on anything you can determine? How low does your HR go, how long does it last and in what posture? You're not passing out but what issues is it causing for you?

Best,

K

[corina]

kitt, I get some kind of flare about every 3 months where my hr gets low. I haven't been able to determine what causes it so far. Since being on octreotide I have less of the flares (had them more often before). I can't remember how low I get while sitting as in general lifting my head makes the world spin. I can get as low as 30 (have recorded 28 once) and to use the bathroom I have to "air bike" to get my hr up enough to do so.

At the moment my standing hr is in the 50's and walking in 70's (which I think is good), speeding up it get's hardly higher. We're trying to find some kind of pattern.

[kitt]

Corina, I've not heard of flares with bradycardia.

I have both hyperadrenergic pots and ncs at the same time, what seems like an oxymoron! Tachycardia and bradycardia at the same time. So on two different TTT's in as many days at Mayo, my heart went to 135 and as low as 30, when I passed out and it stopped beating for 7.5 seconds.

To pass out from NCS, it's not just a low heart rate but a very low BP that accompanies passing out...Mine went to 65/55, HR to 30 when I passed out and my heart stopped.

So both forms of dysautonomia can occur together. My resting heart rate is all over the map as is my BP as is my pulse. It's crazy.

So keep an eye on your blood pressure. As I said it always goes very low with NCS! Part of the equation. Do you keep an eye on it?

[corina]

Thanks for explaining and sharing your knowledge kitt, I really appreciate it. I will keep en eye on it. I've been struggling with low bp's after surgery last july and it seems I'm getting back on track now that I've added mestinon to my normal regimen (octreotide intramusculair and paxil). Bp has come up now (from about 80/40 to 120/65-70) which is really good for me, resting hr now is in low 50's. On exercizing I get into 70's. It's always something isn't it I'm glad bp is back up as I'm able to go out now! Again, thanks for your help!