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It’s Not All Sunshine and Butterflies: The Negatives of Mayo Clinic and The POTS Treatment Center

If you’ve been reading my blog, you know I have been to both Mayo Clinic (Minnesota) and The POTS Treatment Center for help managing POTS. Most of my posts touch on all of the positives of each place. While I mentioned my personal struggles with getting through each program, I didn’t really mention what I see as the cons of each place. I thought I’d do that now to make the perspective I provide more complete. This is based on aspects I myself have noticed, but other patients have echoed as well. It’s worth mentioning, I definitely have something going on outside of POTS alone. It is either a viral or genetic component, likely both!

Mayo Clinic

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You can read about my experience at Mayo Clinic here. Mayo Clinic uses a conventional medical, evidence-based approach to dysautonomia. Although Mayo Clinic couldn’t get me back to functioning, they did get me from a point where I was in a dark, silent room most of every day to being able to read, watch TV, lightly socialize, use the computer etc.. during the day. They got me from being underweight from nausea and vomiting to being able to keep food down. They helped me figure out what medications to try which allowed me to receive care from my General Practioner rather than having to travel to some fancy specialist. Mayo has tons of specialists at their disposal to refer you to when they are not sure what is going on. Without this experience, I wouldn’t know the characteristics of my case of POTS. Within weeks of leaving, I was sent complete copies of doctors notes which included all of the recommendations from various doctors as well as copies of my labs. They’ve always been there for any question I have, even over a year later. Now, nothing in the world of dysautonomia care is all sunshine and butterflies. Here are the cons…

  • It is extremely exhausting. You will be tested all day everyday for a few days in a row, you’ll have doctor appointments throughout the day leaving little time to rest, you will have to wake up early, you will need to have periods with no fluids which is difficult with POTS, you’ll need to fast, you’ll need to carry a pee jug around with you everywhere you go for a day, they will put a blood pressure cuff on you that goes off every 10-15 minutes for 24 hours.
  • I think of seeing several different doctors as a pro and a con. It is a pro because more people means more experience to draw from. At the same time, it can be a little confusing to remember which doctor said what. (This is why I recommend recording your sessions.) It’s also a lot of appointments and a lot of waiting. Luckily, it didn’t mean a lot of explaining because Mayo was great about doctor communication so I didn’t have to reexplain my situation with each different doctor.
  • The autonomic clinic is a well oiled machine. At times, as a patient, I really felt this. Yes, if you are having certain symptoms, you will be referred to the appropriate department, but the same set of tests are run on every patient coming through the clinic. It doesn’t matter if you’ve had a particular test done before, it will be repeated. This is a necessary evil, but it results in not being able to really tweak the week at the center based on your needs as much as some patients may wish.
  • Again, this is a pro and a con. When discussing an unusual symptoms such as, in my case, chronic swollen lymph nodes… the doctors often will say, “I have absolutely no idea.” and leave it at that, perhaps adding a thought or two, but not adding anything you can really go off of. This is awesome because they aren’t stringing me along and acting like they know things when they don’t, but they also weren’t overly interested and saying, “I will not rest until we get to the bottom of this!!”
  • They basically demand you exercise if you want any hope of every getting better. If you explain you can’t exercise without becoming extremely ill, they seem to think you’re exaggerating, are lazy, or aren’t determined to heal. Even after I explained I’ve done the most intense exercise of my life while having this illness and it didn’t help, Kari Carter (nurse practitioner) maintained if I exercised, I’d be better and working within a few months. I killed myself for 5 months faithfully following the plan. At this point, thankfully, the main doctor I work with there (Dr. Fealey: Autonomic Neurologist) said something else is clearly going on because my response to exercise isn’t normal.
  • I found myself in a lot of waiting rooms or labs and I didn’t have the ability to lay flat. Since I was already exhausted from the testing on top of POTS, this was a major con.
  • It is expensive. I’m so grateful I had two insurance providers at the time of my visit as it came in around $20,000 for the medical portion of the trip alone. That doesn’t include hotel, gas, food, time of for those accompanying me, etc.

The POTS Treatment Center

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You can read about my experience at The POTS Treatment Center in Dallas here. You work primarily with one person (Dr Kyprianou, PhD) and then a little bit with some other people. They weren’t too interested in my medical notes, which was concerning at first, but focused on me as a whole person and my symptoms which was refreshing. It is a very positive place and I was constantly told I was going to get better. The center was created with POTS patients in mind with each room having a recliner. I learned about how certain symptoms can tell me a lot about what is going on with my ANS and what to do about them. Although she was not able to help me with my immune issues, she was determined to do so and never stopped suggesting ideas. They got me from a place where my feet turned purple within moments of standing and I had to wear thigh high compression stockings to not requiring stockings and being able to stand a bit longer before the blood pooling sets in. I gained more control over my lightheadedness and nausea. I am able to get through family events and other things I used to never be able to get through. The length of time it takes me to recover from overdoing it has gotten shorter. The interventions provided to me were do-able on a day to day basis as someone who is really sick. Exercise is encouraged, but if it makes me sick, I was told I shouldn’t do it. She was determined to help me with every single symptom whether she’d encountered it before or not.

First Visit

  • As I said, this isn’t a traditional medical type program. It bothered me when I found out the base list of supplements recommended was based off of what Barrack Obama’s doctor recommends he take each day. Dr K thought if it was what was recommended for the president of our country, it is what is best for all of us. Call me crazy, but I think the needs of a 52 year old African American male are different than those of a 24 year old white, ill, female. She also often didn’t know a lot about the supplements she’d recommend and would be put off guard a bit when I’d ask questions based on what I know.
  • I think this one is a pro and a con. She was constantly giving new suggestions based on what I told her or things that popped in her head as helpful for my symptoms. This is great, but it resulted in having an errand to run every day outside of the 3 hours I was at the center. I don’t have that kind of energy and, if I do, I would have loved to use it to see Dallas. After a few days of this, I just started saving up supplement/food/book suggestions and going to the store every other day.
  • It isn’t very organized. On a given day, you didn’t know what order you were going to do treatment in. I wasn’t given my treatment times for the 2 weeks until the day I arrived. When I asked for them earlier, I was told no.
  • It is pricey. The treatment is $5,000 dollars for the 2 week expedited program and $2,000 for the follow up week. This averages out to about $100.00 an hour which isn’t too bad. It bothers me it shows I was billed somewhere between $500-$800 for “equipment” which is Heartmath’s EmWave (costs less than $150), a biofeedback thermometer (less than $30), and 3 of Dr. K’s relaxation CDS (1 focuses on weight loss). I was lucky and my insurance reimbursed me for some of the cost! (I have BAS).

From Follow Up Visit

  • I thought it was me, but it turns out a few other patients have had this experience. During the follow-up week, at first Dr K seemed frustrated with me for symptoms that hadn’t improved and then toward the end of the week, she became all warm and fuzzy how she was during the first visit. I think her frustration is at symptoms she cannot fix in her patients because she cares, but it comes off all wrong. I, as well as other patients I’ve talked to, felt stressed out by this behavior after how positive their first 2 week visit had been. I never expected her to help my immune symptoms and I told her as much.
  • In my post I wrote prior to leaving Dallas for the second time (5 days), I mentioned some aspects of my follow up week had been frustrating. It has taken me 2 months to digest my emotions on this and get to a place where I could share and not have it come from an emotional place. Here we go.
    • Day 1: She seemed quite disappointed to see I hadn’t adjusted my medications. Since my original 2 weeks spent in Dallas in August, my heart rate isn’t lower and my blood pressure isn’t higher, so there has been no reason to adjust my medications. Her assistant had taken my blood pressure while I was talking and within 2 seconds of going from standing to sitting. This gave a false read of my blood pressure and gave Dr K the impression my medication needed adjusted. I explained the blood pressure reading wasn’t an accurate reflection of what I get at home and at my doctors office and maybe she could retake it if she is concerned, but she didn’t.
      • Previously, she had been all about not adjusting medications until I had my body under control and not ever adjusting them without consulting the prescribing doctor. She repeated several times to me how touchy the dysautonomiac body is and how medication changes need to be done carefully. For some reason, during my second visit, she started suggesting immediate adjustments to my medications despite no evidence they needed adjusted. I had to explain how I don’t think the time to adjust medicine is when you’re not feeling very well. I think the time to adjust is either when a side effect occurs, continuing use is dangerous, or when you’re feeling better and adjusting meds won’t send the body into a tailspin.
    • Day 2: I was informed my anxiety measure was high and that is why we needed to try messing with my medication to see what was causing it. If you were reading my blog, you know I felt awful. Why would we mess with my meds? Obviously, I refused.
    • Day 3: She mentioned my anxiety measure again, but instead of blaming my medicine, said it is psychologically triggered anxiety (generalized anxiety) rather than a physiologically triggered anxiety. I think the important thing to know here is I did not feel anxious at all.
      • When I say physiologically triggered, I am referencing to the fact this measure can be increased by so many things other than feeling anxious. It could be triggered by all the norepinephrine being pumped out in my body when I change posture. It can also be triggered by pain. Hell, she could have been right and it was a medication causing it to go up.
      • I clarified and said, “Yesterday you said this was a medication issue. Now you’re saying I suffer from chronic anxiety? Why do I not feel anxious constantly? I know what anxiety feels like, but I don’t have that feeling constantly. I also am close with people who have chronic anxiety and I don’t think it fits for me.”
      • Her response was, “This is because it has become your normal, you don’t know any different.”
      • Having read up on this measure, I said, “I am in pretty severe pain. Moving my head hurts, my clothing hurts, talking hurts… Do you think that could be the cause of the measure?”
      • She replied sympathetically, “You experience constant anxiety and don’t know it.”
      • This really made me angry because the center does depression/anxiety questionnaires and I was informed me my depressives symptoms are due to my illness, not actual depression, and I don’t qualify as someone who has an anxiety issue, even with dysautonomia symptoms taken into account.
    • Day 4: I rested the night before and my pain level from my throat was significantly lower. YAYY!! You know what else was lower? My anxiety measure!
      • She came in and said, “Look at the progress we have made!” I again told her my theory on my pain level in relation to the measure. I’d read up on this more since the previous day, so I wasn’t just blindly throwing out ideas. She said, “No, you’ve learned to not let your pain fill you up with anxiety.” Apparently I learned this on my own because they day before, she simply informed me I had generalized anxiety (not pain induced anxiety), that I didn’t know it, that the pain wasn’t a factor in any of this, and left it at that. Now she was saying the pain was causing psychological anxiety and she’d helped me conquer it. AGGHHHH!! So much for limiting my stress levels!
      • I also needed to explain why in the world, for some symptoms, I preferred prescriptions over a natural option. Answer: Of course I’d prefer the natural option if it works almost or just as well as the pharmaceutical option. In some cases, the prescriptions work and the natural options don’t. Being as ill as I am, I’m going to go with what works! She seemed to accept my explanation and quit trying to convince me to adjust my medication. I was so relieved when I saw her take in my response, process it, and accept it.
  • Sometimes, they seemed not to know much about the mechanisms of POTS itself despite being experts on the ANS.
    • They’d have me do training with my feet on the ground (after break, sitting with my feet on the ground or with legs crisscrossed in their straight-backed lobby chairs) andmy heart would act crazy. She kept telling me things to imagine (roses of my favorite color blooming). I think all of that works wonderfully to a certain extent, but at the end of the day, I’ve got POTS along with immune issues, and the POTS/Immune Gods are gonna be pissed and give my heart a bad time if you have my feet not propped up 20 minutes in the lobby after already having been there 90 minutes-2 hours. A few times I said it’d be best if we did those types of sessions first thing because that is when my body can handle them. I explained how toward the end of the sessions, my body has a harder time. Never did these suggestions seem to result in a change. Instead, people came in the room to help me and try to identify what I was stressed about. The only thing stressing me out, was having to do things that make me sick at a center that previously was all about the opposite. As soon as I propped my feet up, my training session went beautifully.
    • The waiting room is all straight backed chairs. This isn’t POTSie friendly at all and made for uncomfortable breaks.
    • Each day, your blood pressure and pulse are measured sitting, then you stand, and immediately it is taken again. This isn’t an accurate way to measure POTS because POTS is a sustained increase in heart rate. Everyone’s heart rate goes up a bit immediately after standing, but healthy people’s heart rates go back down. Even if they didn’t want to force patients to stand 3-5 minutes each day, they could wait one minute for the pulse and blood pressure to do their thing in response to standing and then measure. Most days, my heart rate still went super high, but it just wasn’t a good measuring technique.
      • This resulted in her one day, informing me “You no longer have POTS!” Yeah… standing for 5 seconds and then measuring pulse isn’t an accurate measure. I wish she’d been right though. 🙂
    • She doesn’t know the details about the biological factors that influence POTS like baroreceptors, neurotransmitter levels, how EDS would complicate things, etc.. This is okay because she knows more than anyone I ever met about the autonomic nervous system, I just wish she’d admit she doesn’t know these things rather than act as though she does.

Please don’t let me deter you from going to either center. Despite the negatives, I’d recommend either place to any POTS patient, I just think it is important to talk about the negative aspects of these centers. As people who don’t have many centers out there to help us, we can really build these places up in our heads as flawless/our saviors/etc. prior to our visit. I spoke up about the negatives as much as I felt comfortable during each experience, and I recommend you do the same. Be sure you don’t do so in an accusatory, angry manner and you will typically get a calm response back. Just start your sentence with, “I wasn’t sure if you know this, but with my condition, it would be best for me if ___________.” or “I read something online that said __________, which is different than what you are saying, could you help me understand? I am confused.”

I wish there was a place for people with dysautonomia where they could go away for a month and receive the best of both centers. They’d get the testing, attention to physiological detail, and medication suggestions I got at Mayo, and they would get the attention on learning to control the ANS through biofeedback as much as possible that I got at The POTS Treatment Center. I think the Mayo doctors would benefit from patients have access to a biofeedback therapist experienced with using it to treat POTS specifically, and I think Dr Kyprianou would benefit from have medical doctors to refer patients to for symptoms that are over her head. We can dream, right?

Have you been to Mayo Clinic or The POTS Treatment Center? How was your experience? Did you notice similar negatives to the ones I did? What are some I missed? Would you still recommend the center you went to?

45 thoughts on “It’s Not All Sunshine and Butterflies: The Negatives of Mayo Clinic and The POTS Treatment Center

  1. Jackie, thank you so much for sharing your perspective. I have booked the end of January for my daughter’s visit to Mayo. I do not want them to repeat all of the tests she has already had, that would be awful for her. I was assuming I could put a binder together for them with all of the past results. Not the case?

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    1. No, that’s not an option unfortunately. It’s for a good reason though. They perform the tests 100% how they are meant to be performed. Some doctors know about POTS and know to do the TTT and other tests, but they are not performed in a manner to get the most accurate results possible. The re-testing ensures the results they advise your daughter off of are reflective of what is going on in her body. It also means your daughter will get a fresh view, they won’t be going off of the opinion of other doctors, they will be forming their own opinion.

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  2. Oh that’s so frustrating! I remember when I was getting my tilt table test and my heart rate shot up. The lab tech was like “Hey you’re hearts beating really fast. I think you need to try to calm down.” I told her I was calm, and she said I wasn’t because my heart was racing. Arg! Did she not understand what the test was for? Somehow a rapid heart rate means anxiety in the minds of any medical practitioner. Even if you’re running a test to see if it’s being caused by something else. ARG!

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    1. That’s so ridiculous! Did this tech think you had such a phobia of being upright you could raise your heart rate like that, in a matter of seconds, and keep it there!? I doubt you needed calmed down prior to her opening her mouth!

      I was shocked when this woman who deals with POTS patients all day long didn’t just suggest, but insisted, I had generalized anxiety but just didn’t know it (and it had slipped past her after seeing me 2 weeks straight and slipped past multiple mental health professionals) rather than focus on issues I actually have… or, since she couldn’t help with many of those issues, just build upon what I’d already learned. Then two days later, said she had fixed it when my pain levels went down, so my measurements came down too. She has helped me a lot, but she was really frustrating during my second visit.

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      1. We had a similar situation with Anna’s pediatrician’s office. When I called them because Anna went from sleeping 20 hours and being very lethargic on Monday to not being able to move her legs to get out of bed on the same Wednesday…she told me to take her immediately to the local mental health clinic. I knew that talking about her feelings wasn’t going to help when my little girl couldn’t WALK! I took her to the ER at the children’s hospital instead…who actually weren’t much help either. When I told the ER doctor that she had been diagnosed with POTS, he asked me what it was. The neurologist ran some screening tests and sent her home, despite my pleading for them to admit her. I took her back to the same ER a couple of days later when she seemed to have some kind of petite mal seizure (my husband was epileptic but has mostly outgrown it and definitely recognized the symptoms) and they acted like I was some kind of Munchouser’s (sp?) by proxy mom. It is very frustrating that so few doctors have any clue at all about POTS and even treat you like you’re insane. Fortunately, we have found a couple of doctors who know what we’re talking about and have truly helped.

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        1. Wow! Your family has been through a lot and it sounds like it was very scary. Your daughter is a tough girl! I know e reason I stay so tough is because I have supportive parents who always believe me, and it sounds as though the same is true for your daughter. It’s really frustrating when doctors don’t believe the illness is real or it is only real because of psychiatric issues. I’m so happy you persisted and found some good doctors who are able to help your daughter. Something that helps me when I have to go to an ER is having a copy of an article about POTS from a reputable journal. 95% of the time, this helps them understand, but there is always that 5% who will always be ignorant!

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  3. i went to Mayo many years back (the one in Arizona) for stomach issues. it is now believed that the stomach issues were the start of my POTS, but it wasn’t until years later that i even heard the term “POTS” mentioned, so i did not undergo any autonomic testing while i was there.

    i liked that mayo tries to fit everything in as little time as possible. like you said, i would be there all day – test in the morning, appointment later, more testing. i would be there from 8-5, like it was a job. it was exhausting, but up until that point i had spent 7 months trying to get an answer (while i had to drop out of law school). it was very frustrating that the previous doctor would make an appointment, then schedule a test for a month later, then give me the results of the test another month later. and, of course, the results were coming back normal. i was anxious to get back to my “real” life, and taking months and months to do it wasn’t working. finally i gave up on that doctor and went to mayo, and within a week i had a diagnosis. so, for me, it was a positive experience.

    thanks for sharing your experiences!

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  4. I liked Mayo, although it was exhausting for Jackie. I think if finances and time weren’t a concern they’d be more than willing to spread out the appointments. I can not say enough good things about Dr. Feely (neurologist). He spent a great deal of time with us and helped us understand symptoms and what causes them. He continues to be available by phone to a degree I find astounding.

    I was universersally impressed with the listening, knowledge, kindess and genuine concern of all staff with the exception of Kari Carter, the nurse practitioneer coordinator for the adult POTS treatment center. She was a poor listener, arrogant and ignorant of the effects that autimmune difficulties may have on POTS. At one point she told us she regularly has patients call her for help because they’re not getting better. She asks if they’re exercising and if they tell her that they’re to ill to do so she tells them it’s there own fault they’re not getting better. After she said this she smirked and added that they never call her back again. This is very sad considering she corrdinates the services.

    I

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    1. Oh man did she piss us off (all 4 of us that were in that room). I was so shocked by her after all of the amazing doctors we encountered up to that point. I remember just zoning out after 40 minutes of her in hopes she would stop talking and we could leave!! I’d blocked out her comments about patients not calling back until now. People need to know though so they know the issue isn’t the patient, it’s her!

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    1. Thanks for reading, it is my pleasure to get info out there! I considered the Pain Rehab Center but decided I’d benefit most from focusing 100% biofeedback in Dallas rather than biofeedback being a small component of my treatment. I think everyone will be different on which program is the best fit. Also, I went to the adult autonomic clinic where patients are not typically referred to the PRC like they are at the pediatri autonomic clinic. While the pediatric PRC has something like 80% autonomic patients, the same isn’t true for the adult PRC. One of the main doctors in the adult POTS department hadn’t even heard of sending adults to the adult PRC. He was totally game to help me get there and give it a whirl though!

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  5. The POTS Treatement Center is an excellent place to learn biofeedback to address autonomic dysfunction. They do this very well in a nurturing environment and I think Jackie benefitted from going there.
    I was always uneasy with the lack of medical support available at the POTS Treatment Center. Our first day there Dr. K. had a family meeting. Some of the medical info she gave out was incorrect and contradictory. When we asked questions she was unable to provide an expanation. I think that she does an excellent job providing biofeedback and should stick to doing so. She shouldn’t to advise changes in medication that has been prescribed by a Mayo Neurologist and an Internist.
    Additionally, the center tends to be somewhat disorganized. This is due in part to their willingness to always provided extra time or services to patients. The first day their we were told we were never allowed to ask what patients did each day or how they were feeling, since this causes a stress response. We were told they’d have a folder to show us what their treatment was each day and their progress. This folder was only filled out the 1st day. It was very hard as a parent not to get any inforamtion from the staff that was promised, and to be told asking your child would make her sicker, especially since we were spending thousands of dollars to be there.

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    1. Don’t worry about the typos! I could read it easily. I may fix them and insert them as a “Mom thoughts” component of my post! 😊 Thanks for being so awesome and not asking for every little detail (or even big details) despite dying to do so. You’re the best.

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  6. What a great write up, Jackie. I just wish you were better already. But I guess that’s not meant to be today, eh. On a lighter note, “viral or genetic…” OR your bacteria making (or not making) substances which alter your genes (as in SCFA, LOL. But I’ll bet there are more besides these we’ll learn about…). G’night.

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  7. The biggest problem I have with the Pots Treatment Center in Dallas is that “doctor” is NOT an MD and it is illegal for her to be giving you or anyone else medical advice. It scares me to death what you wrote and what she is telling people. She has a PhD in Biology from a foreign university. She is not a medical doctor. She has not been to medical school. She is not licensed to give any medical advice at all about your Pots or anything else.

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    1. When I visited, I saw she has a doctorate degree from, I believe Stanford, in Psychiatry and she is also certified to run a biofeedback clinic. She should definitely stick to administering medical advice on POTS as it pertains to biofeedback and psychiatric type issues and leave the medical part alone. I think she knows this which is why, previously, she’d always said to check with the prescribing doctor before changing anything. I’m happy I didn’t make med changes which would have made my follow up week even rougher. The changes she suggested wouldn’t have hurt me, but that’s beside the point in my opinion!

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      1. Hmm.. I stand corrected. I’m not sure what the degree looking thing I saw on the wall was. Maybe I’m confusing offices or maybe it was for Dr. Townsend. Her PhD does seem to be from within the United States though.

        “Dr. Kyprianou deepened her experience with POTS patients as the Director of Psychophsyiology at The Heartbeat Clinic with Dr. Amer Suleman in 2010. A member of the American Autonomic Society (AAS), she is up-to-date with the most current Clinical Autonomic Research on Postural Orthostatic Tachycardia Syndrome.

        Dr. Kyprianou received her B.S. degree from Geneva College, with a major in Biology and minor in Chemistry, and attended Wayne State University for her M.S. and Ph.D. in Biology. A recipient of a Fellowship Award during her Doctoral Studies, she was involved in extensive research under the prestigious Nobel Prize Nominee, Dr. Lida Mattman, in Immunopathology and Pathogenic Bacteriology. Her doctoral dissertation was titled; Biofeedback as an Alternative Medical Treatment. She also attended the biofeedback program at UT Arlington and the rehabilitation program at the University of North Texas.

        A Distinguished Professor Award recipient in Anatomy and Physiology, she has also enjoyed being a speaker at numerous seminars and organizational meetings on Autonomic Nervous System disorders.

        Awards & Memberships:
        Distinguished Professor Award in Anatomy & Physiology
        AAPB Membership
        BST Membership
        BCIAC Fellow
        AAS”

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    2. This place is a bunch of quacks. Been there, done that BEFORE it was renamed.

      The supposed doctor originally in charge lost a patient due to negligence (case recorded in Westlaw). I, almost, became his second. And had the pleasure of meeting a third close call. The clinic was closed, relocated, and reopened under a different name/premise after losing the lawsuit.

      I, too, have severe immune issues along with POTS, CVID, CFS, CDS. Despite having uncontrolled infections and seizures, I was forced to stop all medications in the hospital for this DOCTOR to AGREE to help me with POTS (already diagnosed at Mayo but no physician could be found to refill my betablocker). Noone in Dallas knew about POTS.

      I wasn’t the typical presentation, he insisted it was psychological (infections, TTT positive, AND tests positive, EKGS abnormal, one side of body turning purple). I literally had a knock down drag out with this place (in hospital), ended up with sepsis, readmission to a different hospital for emergency antibiotics, etc. and almost died.

      While I was there (with my Mom watching), a nurse took my records of abnormal EKG tests, threw them in the TRASH!!!!, and proceeded to retest me 5 times in an attempt to get a normal reading for the file.

      When I told her that was illegal, she rushed out, returned with the doctor who asked us to leave. I INSISTED I get an immediate copy of records to document it all.

      Upon follow up of my records, my EKGS had been replaced. Except they forgot to remove the other patients name from them!!! I filed charges and will NEVER go back.

      If you need positive motivation and feedback, go to a spa. At least you will walk out alive and refreshed.

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  8. Jackie this is a great post. I loved reading your previous ‘positive’ posts about your treatments at Mayo and in Dallas but I think it is so important to give a balanced honest appraisal. That is so helpful for anyone looking into these approaches. Thank you for sharing 🙂

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    1. You’re quite welcome. Thank you even more for reading! If people put the good AND the bad out there, I think people would be a little less shocked and upset when their “dream POTS center” isn’t 100% flawless. It’d be helpful to go in knowing a center’s weak points.

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  9. We considered both of these options for my daughter last January when she became bedridden with POTS and was sleeping 20 hours a day, often unable to walk even to the bathroom. We made arrangements for her to go to Mayo, but the wait was so long that by the time her appointment rolled around she was doing so much better we felt there wasn’t much more they could do for her. Her pediatrician was of little help, even though his office originally diagnosed her as having POTS he thought it only explained her dizziness upon standing and that her chronic fatigue, muscle weakness to the point of being unable to stand, and weight loss (from 125 to 95 in a short time) were totally unrelated to POTS. However, at my request, he did agree to put her on Prozac after I told him I had found in my research on-line that it was the most common medicine used for POTS treatment. (I think he went along with it not because of what I said, but because his nurse kept insisting that we should take her to the local mental health clinic.) Otherwise, in his own words, to my daughter were “You’re a mystery to me.” We saw many specialists, after very long waits. She was diagnosed by the pediatric rheumatologist as also having a non-differentiated auto-immune disorder that affects her connective tissue (in the same family as rheumatoid arthritis and lupus) and put on a Rx NSAID and Plaquanil. Besides her three medications, she also took 4 months of physical therapy from a wonderful friend and therapist who took the time to research POTS before she began treating Anna. She used a combination of exercise and biofeedback and always kept on top of how Anna was doing by measuring her muscle strength and flexibility and monitoring her heart rate. She also got a provider to give Anna a pair of Rx waist-high compression hose. She also has a wonderful pediatric GI that really understands POTS pretty well and was a valuable resource. Thanks to this team we pieced together, Anna was back to school after a month in bed, though she did have to use a wheelchair at first. And though she still has some bad days and is not completely symptom-free, she now has a nearly normal life. Our rheumatologist and pediatric GI, as well as other specialists she saw, were all at KU Med Center…pretty local to us at less than an hour drive…and she saw them months before her scheduled appointment at Mayo. We were able to take her to Disney World in June instead of Mayo!

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    1. What a happy ending to your story!! It sounds as though your family really worked to get a team of health professionals together that would help your daughter. It is so fortunate the connective tissue disorder was found and appropriate treatment could be given! Do you know the name of the disorder? I am currently looking into EDS 3 (runs in family) and the like, so anything I can add to my list of disorders to research would be helpful. I think a major difficulty with POTS is there are so many possible causes, so what works for one person, could make another person worse. Finding the root cause is often they key to healing. I’m so happy the root cause was identified and your daughter was able to get her life back! May her health continue to only get better.

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    2. May I ask who you saw at ku med? I was diagnosed with pots 2 months ago after more than 20 falls, one resulting in a broken arm… I live in Wichita, but was told that there were no doctors in the area with a specialty in pots and was referred to Children’s Mercy in Kansas City. It would be much easier to find a provider closer to home… Thanks in advance for any suggestions!

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      1. I hope this commenter gets your question!

        Ideas for doctors: Searching for condition specific Facebook groups can be a great way to connect with other patients and find knowledgable doctors. There is a large POTS group which you can join here: https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/ Often, if you ask in the bigger groups or do a search, you may find there are smaller groups for people in your area with a specific condition.

        Also, if you Google search for the websites of organizations for specific conditions, they sometimes have doctor lists.

        For autonomic issues like POTS, here are two resources to find physicians:
        http://www.dinet.org/index.php/physician-list
        http://www.dysautonomiainternational.org/page.php?ID=14

        Good luck. I know finding a doctor is frustrating, but once you find a doctor who is knowledgable and you click with, it will have all been worthwhile!

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  10. Thank you SO much for sharing the good and the bad! This information will definitely help people make informed decisions about their treatment. I can’t adequately express how wonderful it is that you did this.

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    1. Thanks Christine! I’ve known since the first time I went to Dallas, I wanted to do a write up like this. It’s been sitting there in my drafts, waiting to be posted for some time. I just wanted to make sure when I posted it, the perspective provided wasn’t colored by my emotional reactions and was as objective as is possible when dealing with my challenging health! I visited my draft a few times before finally posting. I had to “feel” the moment was right and my posting this was coming from a place of wanting to share information and not a place of frustration… although I know my frustration comes through in some parts of my write up. I’m human!

      My mom provided the juicy “I want to stab somebody” details of the experiences in the comments, so everyone gets the best if both worlds. Let me tell ya, I don’t think there is a Mama Bear out there whose perception isn’t colored by emotions, even 18 months later, when it comes to her baby’s health! 😊

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  11. Thanks for sharing your experiences. My teenaged daughter went to Mayo and we were very impressed with the level of care. Her POTS is milder than most with dizziness and nausea being the main symptoms but previously everyone told us it was part of her New daily Persistent Headache. Exercise is really key for her physical and mental health but it is hard when she has a POTS storm going. Good luck to you!

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  12. Thank you for sharing. I’ve thought about doing a blog myself, but have never followed through, so I’m impressed that you have done it and so thoroughly. My experience with Dr. K’s clinic was also not perfect, but still miles and miles beyond anywhere else I had been including a Fibro and Chronic Fatigue clinic in the Denver area where I spent even more money. My life was definitely turned around, and that is why I am hopeful she can get me back on track.

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    1. I agree The POTS Treatment Center is a very helpful place to go. I’d recommend it to anyone who can afford to give it a try!

      As for the follow up, I think if someone cannot get back on schedule with the training, or their technique has suffered, the follow-up to the center can really help with that. Also, I’m fortunate enough to have tons of supportive people around me. If someone didn’t have that constant like I do, that’d be another perk of going back to the center.

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  13. My 14 year old son has POTS, hypermotility syndrome, ADHD, Generalized Anxiety Disorder and Amplified Pain Syndrome. They have tried him on major SSRI/SNRI’s which led to insomnia, which when you already suffer from extreme fatigue is devastating. No medication are helping with the insomnia. He needs to do PT but isn’t up much during the day. I sometimes think that he has had symptoms of this since we adopted him and that really all theses diagnosis’s stem from the dsyautnomia.

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    1. I think you’re right it is all probably related. The hypermobility predisposed him to POTS (70% of people with hypermobility get POTS). The POTS (in me) caused ADHD like symptoms when I used to effortlessly score straight As with minimal effort. After POTS, I had to study extremely hard to get good grades and it was anything but easy. I don’t know much about Amplified Pain Syndrome, but from what I do know, it sounds like poor circulation from POTS and being hypermobile definitely wouldn’t help. My sister was diagnosed with GAD, but it turns out it was pretty much POTS. I have a bit of anxiety related to being so sick, but that’s to be expected.

      Has Wellbutrin been tried? It doesn’t help with anxiety, but many find it helps with ADHD like symptoms and fatigue.

      Insomnia is so frustrating! It’s the worst to be tired all day long then not be able to sleep at night. I require Ambien and an antihistamine (which I’d take anyway for my sinuses) most nights. Melatonin used to help me, but it started giving me insane nightmares so I stopped it.

      I’m sorry for all your family is going through!

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      1. You have done an amazing job sharing your experiences, and understanding of POTS and educating me on the two areas of treatment I have been looking into for my daughter. Your honest and balanced list of pros and cons will allow those of us considering these options to make an educated decision with realistic expectations. Thank you for giving me hope and a lot to think about! 🙂
        My thirteen year old daughter was diagnosed earlier this year with Joint Hypermobility Syndrome and POTS with very, very similar symptoms to yours, but one of the things that she actually finds the most difficult is the brain fog with ADHD like symptoms. She has gone from being a gifted student an avid reader and writer to one who struggles through school work that would normally be extremely easy for her. It’s very hard for me to see her going through everything else and now struggling in this area and it’s very, very frustrating for her. I have scoured the internet for every bit of information I could find on JHS and POTS, but found very few people that complained of severe brain fog until now, so I truly appreciate you sharing! I have just a few questions though, that I hope you wouldn’t mind answering? You mentioned Wellbutrin for the brain fog. Is this something you have tried and if not, has there been anything that has helped you? Has Hearmath helped your brain fog at all? My daughter’s doctors have tried midodrin and florinef together (which did not work) as well as increasing water and sodium. They want to try SSRI’s but I’ve opted for a natural approach at the moment and have been giving her sublingual B12, and Phosphatidlyserine during the day, and VegLife Magnesium and Rainbow Life Busy Brain Release at night (she has an extremely hard time sleeping). She has been on these for 3 weeks and has had some improvement but it is still up and down. Also, I am still considering taking her to the POTS Treatment Center– with hopeful yet much more realistic expectations now that I have read your blog! But rather than having to wait to do that, I could start her on Heartmath right away and wondered what your thoughts would be on trying Heartmath on it’s own? Any information or insight you can give me would be soo appreciated! Thanks again, you are quite an amazing person and are helping so many of us who feel at times like we are groping in the dark looking for answers for this illness. Best wishes to you!

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  14. Anyone with a diagnosis of POTS, JHS, and/or EDS should also be evaluated for Mast Cell Activation Disorder, which is co-morbid with certain types of POTS and seems to also run with collagen disorders. The nausea, headache, anxiety, and insomnia could be due to an overload of histamines in the body, especially in the early morning and just before, during, and right after your period. My insomnia disappeared after starting 25 mg of Vistaril, a first gen antihistamine before bedtime. Much of motion sickness went away after adopting a low histamine diet and taking OTC antihistamines such as Zyrtec and Claritin.

    Liked by 1 person

  15. Hi! I just found your blog and I’m so impressed! I was referred to Mayo for EDS/POTS but I’d heard they weren’t very helpful–your detailed accounts say otherwise.

    My question is, how do I prove my “depression and anxiety” aren’t going to be fixed by taking drugs, because it’s not a chemical imbalance? I do feel “crazy” because everyone tells me so, but I firmly believe my behavior is caused by physical ailments, not mental. Please let me know how to handle this best!

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    1. If you’re after in depth and accurate autonomic testing, as well as a consult with an autonomic neurologist, it is an excellent place to go. You can trust the testing was performed and interpreted correctly.

      Mayo totally missed my autoimmune disease which caused my autonomic issues. This was despite me asking about possible causes of my fevers and swollen lymph nodes. They also never checked for EDS and I didn’t know to ask about it.

      No one at Mayo pushed antidepressants on me, however I did take them early on in the progression of my illness prior to knowing what was wrong. My recommendation would be to go get a psychiatric evaluation. That’s what I did. You can then show doctors the psychiatric assessment/consult report stating you are not depressed or suffering from anxiety.

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      1. Thank you for your quick response! I actually just had my first psych eval. They didn’t really tell me specifically what my diagnosis is–I’m guessing they would say I’m severely depressed. However, EDS/POTS has changed my life drastically and on top of that I’m dealing with some PTSD stuff, sooo many would argue I am in fact depressed. My mom says I’ve always been “angry” but I try to explain to her that is because of my over-achieving autonomic dysfunction. Sigh… mostly, the whole process seems very spendy. I will continue to scour your blog for awesome info!!!

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        1. If you’ll be seeing the psychiatrist again, you could ask if s/he could do a depression and anxiety assessment with you and write a report. Alternatively, you could call and ask for a report based on the initial evaluation. S/he was assessing you during your evaluation even if it wasn’t straight from a questionnaire. If you don’t agree with the opinion, seek a second one!

          If someone does have psychiatric concerns in addition to physical ailments, most doctors are smart enough to know one doesn’t rule out the other. Someone can be depressed and have a physical illness. Not treating the mental concerns can exasperate the physical illness and not treating the physical ailment can exasperate the psych symptoms. It sounds like you’d prefer not to start out with medication for the PTSD; let them know this. You could try lifestyle medications and counseling first, if you haven’t already. A counselor is so helpful in chronic illness whether someone has a psych concern or not! An outside party to vent to and help me keep my perspective is invaluable. If you don’t already have a counselor, the way I found one I like is by asking people with similar personalities/outlooks as me if they have a counselor they’d recommend.

          It’s also possible to have something I have heard referred to as situational/reactive depression and anxiety which you may find interesting to read on or ask your doctor about.

          At my assessment, the psych did not assess me as depressed. He said I did score as depressed technically, however it was all due to fatigue symptoms, not a lack of desire, motivation, appreciation of life, or enjoyment of activities, which are all hallmarks of depression. I didn’t score as anxious. So what you’re after is their clinical judgement in combination with the assessments.

          Don’t count on it soon, I tend to blog when the mood and energy strike, but getting a psych evaluation is a topic I plan to write a post on! I guess I basically wrote the post in this comment though, didn’t I?

          Liked by 1 person

  16. Thanks for your blog post,it really helped us determine if the Mayo clinic is right for us.It is helpful to know that there designated treatment centers for those with POTS
    Agreed they are not perfect but we can help to make it better if they work with the patients.
    We were able to overcome the autonomic roller-coaster of POTS by being on low dose Beta blockers under the supervision of our cardiologist.
    I believe that we can have a dream place to go and feel safe in the future by God’s grace.

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