The POTS Treatment Center Program Disclaimer: We Need to Talk

Excuse me….

Is this thing on?

I need to say something.

And you really need to hear me when I say it—because here is the thing: it doesn’t look like anybody else is willing to say it out loud.

I know this because over the past month I’ve gotten over a dozen private messages from readers who had some strong words about their clinic treatments at the POTS Treatment Center.

And I’ve been winding myself up over it. Because when I set out to write the review of the treatment center I thought I was writing a totally different story than the one I was going to live during those two weeks.

But now we need to talk about why.

I don’t believe a program should label themselves as a treatment program for a disease when in actuality they are treating the anxiety and stress that comes with the disease.

The phrase “not as advertised” followed me around like a gnat every time I sat down to write an entry. But how did I go about literally killing the dreams of every suffering POTS patient in the US who was desperately scrounging together their $5K to head to Texas? Not easily.

And then there was Sarah. Sarah whose positive attitude and clear transformation hit me like a ton of bricks. Something had changed in her; she was bright—positive and her overall attitude about her disease was now one of hope.

But at the end of that two weeks I was still struggling with all my symptoms with no less drastic reduction than any other month before it.

The POTS Treatment Center does not have the same definition that you might think it does.

I was expecting the level of attention to detail and specification for a treatment for ME—when what I was getting was really just a catch-all. This treatment focused more on meditation and handling anxiety instead of how your current medications were affecting your heart and how others might improve your circulation. This was not a personalized treatment program that focused on my needs. It was like a web-MD treatment that your friend would give you for a hang-nail—not a program a doctor would sit down and prescribe based on your personal needs. Medicine and medical treatments are cut to fit. Doctors are like tailors—but this program is J.C. Penney.

It is a meditation seminar. You will deep breathe. You will visualize. You will get hand outs on such common knowledge as “why water is important.”

So let’s talk about that for a second—let’s talk about what you’ve been told by POTS patients, by POTS communities, and by the representatives of the POTS Treatment Center itself:

You’ve heard that: There is no other program like this in the world. This doctor is the only doctor who uses it and that it is specifically designed for POTS patients.

This is mostly false: the program you will use is made by a company called “HeartMath” and I know this because it says so on the box—it’s also a program  that is extremely similar to one a past clients, a neurologist, uses with his ADHD patients. Here’s a little bit of background on this program:

“The founder of HeartMath is a guy by the name of Doc Childre (who is not a doctor) and his philosophy is basically that the heart is at the center of the human experience and the heart as an organ is much more interactive and important in our lives than just being a muscle that pumps blood around our bodies. He founded The Institute of HeartMath (IHM) in 1991 and as his website says, IMH’s HeartMath System “entails practical, heart-based tools and technologies that people of all ages and walks of life can use to enhance health, performance and well-being.” –Randi.org.

So this isn’t a program that can only be used in this one building by this one doctor in Dallas. Had I known that this was the program being used (ahead of time) I probably just could have had my neuro client give me the same session in his office, down the street from my house. (However Dr. K IS the only Dr. who prescribes this for POTS patients)

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You’ve been told: This is a full treatment program that works with all areas of your life. 

Mediation and a stack of medical handouts on the world’s most obvious subjects that—if you had ever googled dysautonomia (and by the time you’re at the treatment center—you’ve googled the ever  loving shit out of it)—do not a “treatment program” make. I have zero medical experience. I could have also told you that drinking water and eating healthy food is a good idea for patients with poor health. Why are you paying $6k for that kind of advice? Additionally, there was no discussion of how my current medications are affecting my heart and working within my body—only that eventually I could and SHOULD wean off of them. Dr. K was sent my full medical records but did not appear to have any prior knowledge  of my current state, diet, past symptoms until complications arose during my treatment and she looked into it. (IE: The “USUAL” IV administered on a WEEKLY basis is NECESSARY to not DIE.)

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You’ve heard that: This program cannot be translated on a local level.

I had multiple conversations with Dr. K about this during my time at the center and I did not receive an answer that I thought was adequate. Her response was that no other doctor would be qualified to treat POTS this way, that every patient had different symptoms.

But she’s using THE SAME TREATMENT FOR EVERY PATIENT. She is not catering to every patient’s personal, individualized needs.

So what does that matter what kind of doctor administers this treatment when you’re only using the same tool to treat ALL of those symptoms?

This is probably my largest complaint—not just as a patient, but as a patient advocate. And I’m sorry—I’m just not going to pretend that this is okay. It’s like price gouging and if this program HAD worked—I would have been JUST as furious about this because it would have been withholding pertinent information from the medical community when there are THOUSANDS of POTS patients struggling to get relief. If you have the fix to a disease that people are losing their quality of life to and you choose to make it as difficult to acquire that treatment as possible then no one is going to come down on you with the law—because this is America. But it kind of makes you a jerk. Science (If that is what this is) is not a field where you can pick and choose who can afford to feel better.  I put this in here specifically for the mothers and fathers and uncles and brothers who are packing away pennies for the day they can send their kid to get cured of POTS and have no idea what it is they’re paying for.

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They have claimed: We’re here for you when you need us.

Really? Want to tell me who was in the office answering my desperate phone calls on Saturday and Sunday while I considering having to go the emergency room for a second time? Nobody.  Monday came with the explanation that Dr. K could have been reached via email over the weekend. Very literally too little, too late.  ALL doctors should be available by phone—especially if I’m paying six grand. If a patient flies half way across the country–You should be on call, you should be around day or night. I’m in YOUR CARE—and POTS is a heart condition for gods sake, we’re not dealing with bunions here.

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Now I hope that patients who have been there and done that can come back at me in this post and say, “YOU’RE WRONG, SHE’S A MIRACLE WORKER” and “IT CURED ME, IT CAN CURE EVERYONE” and “YOU’RE UGLY AND YOUR MOMMA DRESSES YOU FUNNY.”

This is not to say that I made no improvements during my time at the center. I can get an elevator, without as much anxiety (But of it not crashing or stalling—not of my symptoms not showing themselves while I’m moving from floor to floor.) I also think the plane ride home was less dramatic and I was able to calm my anxiety about it using the program. I also felt like I slept better during the program by using the meditation CD at night. And I also feel like my fashion sense got slightly better.

But these are not my POTS symptoms, my issues are that I still have to go the doctor for hydration, I’m still having lots of trouble digesting food, and my heart is still tachycardia.

Maybe in three months when I dutifully and completely finish the at-home part of the program I can come back and be able to say to all of you that the meditation made a more drastic overall improvement on my symptoms—but so far in that is not the case and I still feel like I could have learned this program without traveling or staying in Texas for two weeks.

EDIT: Post three months the program had absolutely zero impact on my POTS symptoms. The Dysautonomia Clinic in Dallas Texas is PURELY a bio-feedback program that DOES NOT cure POTS. Please know what you’re going into before spending $6000 on bio-feedback that you could probably try at a local psychiatrist’s office. POTS is not a psychiatric condition and patients need real medical treatment. You can not “will” this disease away. Please visit dysautonomiainternational.com for accurate information on this disease.

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6 thoughts on “The POTS Treatment Center Program Disclaimer: We Need to Talk

  1. Yvonne Bridgeman

    Ilana, I wanted to thank you for your honesty about what happened to you while in Dallas. I live in Dallas, but a good 45 minutes away from the clinic. I don’t know about you, but driving is one of the things that absolutely wears me out, so this really was a hard thing for me to do. I went to the center 4 times and decided that it really wasn’t worth the money (being “local”, they accepted my insurance, but I still didn’t feel comfortable with what was being charged). I was told that I had to be having migraines over and over, I denied it, but finally just said, “yes” (I have had 2 migraines in my life – I am 59). I asked the same question about trying to make my heart adjust to my breathing while on medication, I wanted to know if I was working against the TWO different meds I take for my heart, they couldn’t answer my question. I think that each person has their own set of issues and/or symptoms. I have been dealing with this illness for 30 years yes, 30 years,(not a typo), I diagnosed myself about 6 years ago. I have ordered the Heartmath program that will work with my iPhone and also a finger temp thing. Cost = $120. I think I can accomplish more on my own than I did going to the clinic, getting totally worn out and then being told that the equipment wasn’t working – really, they told me that three days in a row. I agree with you, if it works for some people, I am sooo happy for them. I really felt cheated and am glad that I didn’t spend money to get to Dallas (really, Dallas is a very nice place, with many beautiful things to see, not all construction and fly overs!). I’d like for you to keep blogging about your journey with this illness and what you find out along the way.

  2. Carol Rhodus

    I will start by saying “WOW!” I value your opinion but let me say. I was treated at The Treatment Center in Dallas for two weeks at the end of last year. Me, along with several people that I met at the Treatment Center, have had Wonderful Outcomes. Before I went to the Treatment Center, I was passing out, having major issues with my blood pressure and heartrate, despite medication I was on, I had to use a wheelchair, could not drive, could not bath myself and I have to use a bedside commode, such a disgrace to me. At The Treatment Center, I regained control of my Life. My autonomic Dysfunction made a turn for the best. I was able to get off of all of my medicine, I am still off of it. I can drive, do not have to use a wheelchair, no more passing out and best of all, no more bedside commode. My symptoms and my POTS made a complete 360 drgree turn! I was very blessed by Dr. K and all of the wonderful ladies at the Treatment Center. I started seeing positive results during week 1 at The Treatment Center. Dr. K did individulaize my treatment to my symptoms. How do u know that she didnt individualize when you arent even in the room with other people? Biofeedback is not a medication program. It is a automomic Nervous System retraining program. You have to beleive in it and want it to work. If you have the attitude that you do about it then it will not work for u, I am living proof that this program works. You can ask anyone of my friends, family and doctors. In fact, before I went to the Center I asked my Cardiologist what He thought about Biofeedback and his response to me was, I am b=not going to tell you not to go, it cant hurt to try it, Biofeedback is something that you have to beleive in. Since I have been back from treatment, My Dr. has contacted me personally to get thhe information for The Treatment Center so he can send his other POTS patients there. That says alot coming from a Dr. Who really didnt think it would work. I was at the Center with a yr old boy that was unable to even go to school. One month after returning home, he was able to start school again, be around his friends and even go on a Ski Trip. That Is amazing and to me that shows how awesome the program is and what it can do for u. I hope you keep at the home program and I hope you start seeing some results. When you do start seeing results, I hope you update your blog because this treatment cebter is a God send fro POTS patients. I know it is expernsive but was well worth it to be able to have my life back. Just ask my 6 year old son, who didnt even feel like he had a mom before I went to The Treatment Center bc I could not do ANYTHING with him. Now I am able to do MORE than I ever imagined. In fact, We were at The Treatment Center during Halloween and I was able to walk with him foor 2 hours with minimal symptoms while he trick or treated. That was just a few days after I started treatment. a HUGE THANK YOU to Dr. K and The POTS TReatment Center for giveing me my Life Back!!

  3. Riley

    I have been researching the Pots Recovery Center and I feel compelled to respond to your blog and the comments. From what I have read online, you are right about the dynamics of the program. It is a generalized scam that may work to help with stress and anxiety. It is not a program specifically for POTS patients, much less those with individualized medical problems stemming from the disease. From what I have read, the person who runs/designs the Pots Recover Center has a degree in Biology and not an MD or any form of medicine–is this true? How can the center provide medical “treatment” as defined by the FDA?

    If this program actually worked for Pots patients or “cured” them, there would be tons of peer-reviewed articles. You would find medical journals scrutinizing everything and testing the program. None of that is happening here. The red flags are everywhere and this program is not going to work on the underlying Pots problem. If you are interested in any treatment (especially one with such a high price tag), ask for the proven data supporting the program specifically and for the medical industry journals that back it up.

    If you feel you have been scammed by this center, contact the Texas Attorney General, and you might also call a consumer law/fraud attorney to get your money back. Statements of misrepresentation are against the law. Please continue seeing your cardiologists and follow proven medical treatments approved by the FDA and peer reviewed.

    As for the comments supporting the center, it is clear from reading them that they are likely put out by people who work at the center. No actual medicine names are mentioned, and the formula for the positive comments are always the same. It is disturbing how much this program is taking advantage of desperate people. I hope you do turn this over to 20/20. God bless, and please stay with proven medical treatments.

  4. Amanda

    I am very intrigued by the varying opinions about the treatment center. As a nurse and a patient with complex medical issues in addition to POTS I am suspicious. I have also heard so many say it changed their life dramatically for the better. As someone who does not suffer from anxiety and has EDS, Chiari, Sjogrens syndrome, neuropathy and more I am sure this program will not cure me. I do think there may be symptom improvement but doubt that this program can help me more than regular acupuncture treatments, breathing exercises and local bio-feedback sessions with a trained practitioner. Of course proper fluid intake and diet would be essential either way I do have issue with the need for patients to come up with 5k plus travel and lodging for themselves and family members. If they are on to something significant to reset the ANS there should be some studies and peer reviewed articles to support these claims. I believe in alternative therapies and their benefit when used in conjunction with western medicine. I am wondering if these patients that are “cured” maintain the effect of treatment long term, how long after completion of the program are these patients being followed?

  5. Denise

    I’m an interesting case study. I’m a licensed acupuncturist and nutritionist. I have Ehlers Danlos, am menopausal, and have been treated for Hashimoto’s thyroiditis and autoimmune anemia since the age of 35 (I’m now 54). Eight years ago I got food poisoning from a mixed greens salad (everyone asks me what food poisoned me!) and I developed POTS (I was diagnosed at Stanford Med. Center in Calif.). After I developed POTS I tried the vasoconstriction meds. and techniques, beta blockers, psych. meds., hormone treatments, and other western medical interventions. I also made use of herbal therapies, anti allergy diet, exercise (when I could tolerate it), pain management tapes, yoga, breathing exercises, acupuncture(of course), and even” big ticket” treatments like hyperbaric therapy. But I remained very dysfunctional and had a very poor quality of life. (As an aside, I was a long time practioner of meditation with no history of anxiety disorder or panic attacks). Then in Oct. of 2012 I went to POTS treatment center and I basically went home almost well after 2 weeks of treatment (I never thought I would be someone who would have even made much progress at the center due to my other complications and length of time of illness). I realize not everyone responds as fast as I did but that’s what happened for me. Biofeedback has a reputation of being for “stress management” but it is a known treatment for other neurological diseases like migranes , Raynaudes, and can even be used to prevent seizures. It can do this because the patient is being taught to control their blood vessels and autonomic nervous system. POTS patients often make use of psych. meds. although we actually have a nervous system disease (this does not mean because the psych. meds. work that we actually have a psych. problem instead). Biofeedback can work for POTS patients not because they have psychological stress but because it works on nervous system control. That being said, POTS is still complicated for every individual ( i.e. hormone problems, immune problems, allergies, low grade infections etc.). I still get mini relapses after I come down with a cold or infection but I’m now symptom free otherwise. I still diligently do my biofeedback sessions at home and am becoming board certified in biofeedback .
    So what do I think of just going to anyone for biofeedback? Well someone like Dr. Kyprianou has 20 years experience in working with neurological issues. She also worked in the office of renowned POTS cardiologist,. Dr. Sulemon, so I do feel she understands this disease and does customize the program for each person. I’m sorry some people feel this wasn’t the case but she was very attentive to getting some extra help for me at Dr. Sulemon’s office if I needed it during my stay in Dallas, and I was offered neurofeedback while I was there in addition to the regular program. Finally I have to say that I had done some sessions with the heartmath system, with someone else, a couple of years before POTS treatment center and it didn’t have much effect, so I almost didn’t go to Dallas because of this,,,,the person who taught me the heartmath was no Dr. Kyprianou. It does matter who teaches you and it needs to be done in a concentrated form (the nervous system responds better to lots of concentrated repetition)) . I wish more biofeedback practitioners will in the future will be able to study with her. She is a special and talented person in the field of biofeedback, has a good heart (she’s not running a scam!), and I would still be disabled if I hadn’t gone to POTS Treatment Center. I hope the people who weren’t helped find other treatments to alleviate their dysautonomia but that they also keep doing their various biofeedback exercises to resynchronize their nervous system. Sometimes it takes a multivariate approach to get somewhere with this disease and adding a modality which directly addresses the nervous system function is an essential part of working with any disease of the nervous system. I encourage anyone with POTS to become familiar with the field of ” neuroplasticity” and see how important it is to many neurological diseases to add things like biofeedback into their arsenal of treatments.

    • Teresa

      Hi Denise – I am also in the “50” age group. It’s great to hear you had a positive experience and healing. Are you able to give us an update on how you are doing today? Thanks for sharing!

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