Mayo’s POTS Clinic

I went to Mayo Clinic’s POTS clinic in Rochester Minnesota in August of 2012. That’s what started this whole blog. Click on the underlined title of each day and a new window will open with my blog post describing that particular day. I’ve tried to give a little description of the tests I had during each day under the link to make it easier for you to find what you need!

Day 1 (testing)
urine analysis
blood draws
thermoregulatory sweat test
echocardiogram
chest x-ray
EKG
endocrine testing (supine/standing catecholamine testing)

Day 2 (testing/consult)
autonomic nervous system testing (QSART/10 minute tilt)
holter monitor test
POTS nurse consult

Day 3 (testing)
tilt table testing (45 minute tilt)
exercise test

Day 4 (consults)
Endocrinologist
Cardiac Electrophysiologist
Physiologist

Neurologist Consult (POTS expert) and more testing
consultation with Dr. Robert Fealey
gastric transit study (for gastroparesis)

The Negatives of Mayo Clinic
This was written more than a year after my visit.

Update One Week After I Left Mayo

Update 14 Weeks After I Left Mayo

I wrote this about 10 months after my Mayo trip — it is a sort of FAQ I created about my experience with Mayo Clinic

All Posts About Mayo

21 thoughts on “Mayo’s POTS Clinic

  1. Is the Mayo POTS Clinic within the Fibromyalgia/CFS Clinic? I was just at Mayo and diagnosed with POTS. Some doctors say it’s the same clinic, some say no. Since my stay was coordinated by an endocrinologist (my GP didn’t know if I should be referred to endocrinology or neurology) and she doesn’t seem sure, I feel like I should check someone who has been there. An electrophysiologist gave me Dr. Kevin Flemming’s information, and it sounds like he runs the POTS Clinic. Again, I don’t feel confident with all the conflicting information.

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    1. No, the POTS Clinic is technically called The Autonomic Clinic and many patients going through it have POTS. It’s is a week long series of tests and consultations pertaining to autonomic difficulties (all listed on the Mayo Clinic POTS Clinic page I made you can find in my drop down menus at the top of the page).

      I haven’t heard of their fibro/CFS clinic but I’m pretty certain it is a different clinic. I went to the Rochester Mayo.

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        1. I had my doctor send a referral to Mayo Clinic. If you call Mayo’s general number and talk to the operator, they should be able to get you to the people who coordinate the Autonomic Clinic (AKA POTS Clinic). Tell them you’ve been diagnosed with POTS and would like to go through their autonomic clinic and ask what fax number to have the referral sent to. There is usually at least a 6 month wait.

          I believe the department that coordinates it is the Autonomic Neurology department, but I’m not positive. This link may be helpful: http://www.mayoclinic.org/departments-centers/neurology/overview/specialty-groups/autonomic-neurology

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        1. The Mayo Clinic’s Autonomic Clinic at Rochester is still under Dr Paola Sandroni. I double checked to make sure so everyone can have accurate info. I do hear Dr Fleming knows about POTS though and I am sure he can order testing. I hope you had a positive experience.

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  2. Hi Jackie – I’m desperate for help at this point. Been dealing with POTS for only 8 months but I can’t take going from useless dr to useless dr anymore. After you went to the Autonomic Clinic what was their treatment plan for you? Did it help? Did they suggest the Mayo Pain Rehab Clinic also in Minnesota? I’ve been chatting with a girl on a POTS fb group who went to their 3 week program and said it gave her her life back. I need to try something. Thank you SO much for writing your blog. -Liz

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    1. Hi Liz!

      I’m sorry to hear you’re so sick! I know what it is like to be desperate for options.

      Are you a pediatric patient? I know the PRC is popular for pediatric patients with autonomic disorders and I hear some success stories out of it. I was an adult patient and would have only had access to the adult PRC, which at the time, was more geared toward people with pain disorders than autonomic disordered. I considered going to it anyway one year after my initial visit, but decided not to. Instead I went to”The POTS Treatment Center” in Dallas.

      I think some of my previous posts could be helpful to you in learning more about Mayo. Under one of the tabs at the top, you’ll find “Mayo’s POTS Clinic” which has all my posts about Mayo and how I felt/responded after. Also under this tab is “Mayo’s POTS Treatment Plan” which includes what they suggested for me based on my case as well as a page called “The POTS Treatment Center” if you’re interested in learning about my experience with that.

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  3. Loved your blog and information. I got diagnosed with MS and in October of 2013, had something that most doctors would call a relapse but it came overnight and seemed to fry my autonomic system. Been to my neurologist, cardiologist, PCP, oncologist, vascular guy, the MS Center’s main location in Denver and met with head of the institution, and yesterday went to a Doc that supposedly dealt in POTS. When everything happened, doctors had no answers as my BP and heart rate started acting crazy when changing positions. My wife finally just did days of research and found a POTS website that explained everything and she and I found out that I have most of the determining factors but with MS, every doctor wants to blame the MS even though my Neurologist (who actually has MS) says most of what I have is atypical Honestly I just want answers rather than being sent to Dr. after Dr.

    Since I still haven’t officially been diagnosed with POTS (and I know you aren’t a doctor but a well informed patient) did find the Mayo or the POTS clinic more helpful in identifying causes of your symptoms? Did you go to the POTS clinic by recommendation by the Mayo clinic or your Primary Care Physician? POTS is still very abstract to doctors here and most times we find out that we actually know more about ANS or POTS than they do. I just want to know what the heck is going on since it was literally an overnight onset that never went away and not only made my MS symptoms worse but obviously caused more symptoms like heart beat, blood pressure, joint and bone pain, fatigue beyond MS fatigue, dizziness, falling over, etc. Since they both are expensive I don’t want to go to one and find that i should have gone to the other center first. My doctor said either would be a good option but, much like you, I am tired of Drs guessing rather that saying I don’t know and finding out the right answer. Sorry to be so long winded but as you know, autoimmune disorders are so hard to figure out and so hard to treat properly and give you a decent quality of life. I am 35, had to stop working as a VP from an investment firm last year, have given up most sports and exercise because it is so difficult, painful, and beyond exhausting, it has led doctors to think I am depressed rather than me just being sad about all my problems, and really Drs don’t seem to find it interesting that all of the sudden about 50 new symptoms appeared almost overnight. Some say it was the stress on my body after almost bleeding out in recovery from a ruptured artery after a lumbar fusion and a cervical disc replacement in August 2013. I would really love for a doctor to stop saying probably and start really trying to find the cause. Not knowing is the hardest part because as you know it is impossible to treat a mystery and for us, bad news is at least a good starting point rather than no news….

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    1. Wow! You have a lot going on. I am so sorry for everything you have been through. I’m not feeling up to answering all of these questions, but I promise I will when I do! I know how confusing it is navigating the different options. In the meantime, reading all of the posts on this page may answer many of your questions, especially: https://lethargicsmiles.wordpress.com/2013/11/24/its-not-all-sunshine-and-butterflies-the-negatives-of-mayo-clinic-and-the-pots-treatment-center/ and https://lethargicsmiles.wordpress.com/2013/07/08/mayo-clinics-autonomic-clinic-a-guide/

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  4. I am curious if you did share or would share what treatments the Mayo clinic decided on for you. I saw the compression stockings, salt, fluid and exercise. All of these treatments I know about and am implementing just from my own online research. Is there any other treatments or information they gave you? I love your blog and your story! Reading this has given me hope and so much info. If you have already spoke to theses questions could you just lead me to the page? Thank you for your time and for this blog!

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    1. Thanks for looking through everything. You are correct those are all the recommendations they gave me at the time of my visit. They said if those options didn’t provide relief, they recommended Midodrine and/or a beta blocker. They told me to continue taking Adderall. That was all based on my specific situation at that time.

      Most POTS patients I know are either on Atenolol or Propranolol as a beta blocker. Some people, mainly patients with a hyperandrenergic characterization, find an alpha blocker called Clonidine helpful.

      Someday, I hope to write posts on each and every medication I have tried and how they worked for my case! Spoiler alert: some meds are helpful, but I have never taken a medication and had my heart rate jump totally eliminated or my quality of life remarkably increased.

      My current medications taken directly for POTS are:
      Ivabradine – decreases heart rate, doesn’t affect blood pressure
      Propranolol – decreases heart rate by blocking beta andrenergic receptors, thanks to this drug doing most of the heavy lifting, I can keep dose low and avoid hypotension and/or needing to take Midodrine to offset beta blocker induced hypotension
      Mestinon – increases parasympathetic tone, helpful for orthostatic hypotension but not general hypotension
      Adderall – helps with cognitive challenges, fatigue

      If you search on PubMed or Google for these drugs plus postural tachycardia/orthostatic intolerance/Dysautonomia/autonomic dysfunction, articles mentioning them should come up. A few drugs have entire articles devoted to them. If you’re having trouble finding information, try using generic vs brand names for medications, or try searching the type of medication it is rather than the name, For example, searching using stimulants as a keyword may bring up more results than using Adderall as a keyword.

      Another source of information to learn about treatment options is medical journal articles providing an overview of POTS. They typically mention treatment options.

      I have some nausea meds for as needed (Reglan, Phenergan) and I take 550mg of ginger each morning.

      It makes me happy to hear you find my blog helpful — thanks for letting me know, and I am sorry you are sick and need this information! I wish I was less sick and able to post more in depth information for everyone.

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      1. Thank you for the quick response! I go to a cardiologist in a few weeks and am going to endocrinologist in Jan. My pcm does not want to give me anything like a beta blocker because my BP runs 90/75 and lower. So the medicine you recommended I am going to ask the cardiologist about. Got a question about adderal…is it counter productive? Meaning we are trying to get our hr down but taking a stimulant. Does it give you energy without making your heart rate higher? Again thank you for your time! Appreciate you 💜

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        1. I think the increase in heart rate is worth it, but some people try it and find it intolerable. With time (I have been on it for almost 5 years) the amount my HR increases from Adderall has become less. I think many doctors prefer to try provigil or nuvigil before Adderall.

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  5. Hello Jackie.
    You are a tough lady and I understand what you are going through. I just wanted to comment on QSART testing……great test, but too difficult and requires special setting and is time consuming.

    The Sudoscan test is now out and approved by the FDA. It is being used by family doctors, internists, neurologists, and pain medicine doctors. It takes 3 minutes to do and gives the same results as the QSART…..it does sudomotor function testing.

    If I can be of any assistance in the future, regardung dysautonomia, or related subjects, let me know.

    God Bless!

    Regards,
    Tom Douglas, MD

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  6. My daughter was dxd with POTS 2 months ago. The fatigue is killing her. She was just prescribed Midodrine last week but so for it is not helping. I asked about Adderall but her cardio won’t prescribe it for POTS because he says there is no evidence saying it works. She is never going to make it through her junior year with this fatigue if she doesn’t get some energy. We are getting a referral to Mayo. Are they the ones who give the Adderall? thanks.

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    1. Hi Maria. I believe I replied to you via email a few months ago, but if I didn’t, please let me know! I hope your daughter is doing okay since school started and experiencing more stability than she was when you wrote this in August.

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  7. I was diagnosed with POTS at Vanderbilt Medical Center. Phenomenal Center & staff. My course was a bit different than yours, but in the end pretty similar to Mayo Clinic’s program. Those are two of the three nationwide Centers for Dysautonomia, to include POTS (of course). I’m glad you’re plugged into care finally…it took me 3 years for diagnosis, as well as a nine month wait for the initial visit to the Dysautonomia Clinic. Well-worth it…

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    1. Thanks for sharing your experience with Vanderbilt. I get a lot of questions about my opinion of the various centers. I think the more firsthand accounts we put out there, the better. I’m happy to hear you finally are receiving the care you need, and hope you experience a surge of improvement in your quality of life!

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