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masha

POTS Treatment Center - Has anyone heard of this?

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Hello, my daughter found this "POTS Treatment Center" when she was doing a very quick google search for Neurologists who deal with POTS. It's located in Dallas, Texas, and they have a special program that they claim will help with POTS treatment and management. I haven't yet come across this during ALL of my extensive research... has anyone come across this before or have experience at the Center?

Here's a link to the website: http://www.potstreatmentcenter.com/?matchtype=p&keyword=pots treatment center&gclid=EAIaIQobChMIv6rTgcSC4gIVhLlkCh3RhAVDEAAYASAAEgJ9GPD_BwE

Thank you,

Masha

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Hi Masha,

I know it sounds great but I would be very wary of their claims. I have not personally been there but have read a lot of experiences from those who have. 

Basically it is all just biofeedback, meditation, exercise & they also recommend some supplements including licorice root. 

I'm not saying none of those things can be helpful, especially the latter which gave me a life back for about a year, something no drug has, just that it doesn't warrant the expense or the travel involved to access the package. 

The bio device they recommend is heartmath, which you can purchase yourself online with full instructions. Also, given the dramatic and instantaneous result I had with licorice root, which expands plasma volume (short term), someone could go there and think the whole thing miraculous when really it is just these inexpensive little capsules alone (the brand I used was Swanson).

Best wishes,

B xxx

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Thank you so much for your input.  I am going to look into licorice root, as well as heartmath.  I guess we are always looking for that magic fix!  

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I know, it would be lovely if one thing could fix everyone! Certainly there is nothing going on at the Pots Treatment Center that you cannot get at home much cheaper. 

B xxx

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Hi, I took my daughter, who was 16 at the time to the POTS Treatment Center in Dallas, Texas, and it was a game changer for my daughter. I believe it saved her life.

My daughter, Nikki, who also has EDS as well a spinal disorder ( Scheuermann's disease) was diagnosed with POTS, 11 years ago. She was very ill and suffered from daily migraines, dizziness, fatigue, joint aches, stomach issues, visual disturbances and more. I tried everything from chiropractic to acupuncture, to water therapy, herbalists, and all made her no better. She was hospitalized countless times for migraines and could not wake up for school, because her blood pressure was so low and she just could not seem to function. I was desperate to get her better, when I heard about Dr. Kyprianou and the POTS Treatment Center. To be honest, at first I thought it was too good to be true and was very reluctant to spend more money, get all of our hopes up yet again, waste time, and all for no results. I called Dr. K. on the phone to get some more information and to try to figure out if this would be worth it, or if it would be in vain. Dr. K. asked me what was stopping me from coming, and I mentioned all of the above. She told me that sometimes you have to take a leap of faith. I decided to take that leap, and other than having children, it was probably the best decision I ever made. Besides biofeedback (by the way the Heartmath biofeedback system is not used there. The biofeedback that Dr. K. offers, I believe, is the only one of its kind. I just wanted to clear that up from an earlier comment.) the POTS Treatment Center uses a very comprehensive, multifaceted approach to POTS. They incorporate nutrition, suggest certain vitamins, provide coping skills management, (that everyone with a chronic illness could benefit from )offer sleep recommendations, counseling for those that would like it, as well as provide an exercise protocol. 

After returning from the Treatment Center, my daughter was able to return to full time high school, went on to be a cheerleader, went off and finished college (never missed a day from being symptomatic) and is now working full time. Of course, to date, there is no known cure for POTS and my daughter, who continues to be about 95% better, still has an occasional flare up. Though not cured from POTS Syndrome,  since returning from Dallas,  Nikki is fully functioning. I credit Dr. K. and the POTS Treatment Center for helping give my daughter the wings to not only fly again but to soar. I am forever grateful.

If you want to ask me more specific questions about my two weeks in Dallas, please feel free to reach out to me.

Praying that everyone finds relief from their symptom, Jodi

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It is great to hear that Jodi's daughter was helped and is feeling so much better.  However, members should be aware that this center makes claims to "heal what other doctors cannot" as well as other claims to be the "only" treatment center offering cures for POTS.  DINET cautions members to seek out physicians offering evidence-based medical treatments and practices.  There are many causes for POTS and many that are still being investigated.  Because of this there are cases of people with POTS whose symptoms resolve over time, sometimes with no clear explanation.  In younger patients, particularly patients under 30 who become ill after a virus or infection, remissions can occur and hopefully last a lifetime.  But remission and symptom resolution is very different from doctors offering a "cure".  There is no known research based cure for POTS or dysautonomia. and frequently recovery includes an individual mix of medical responses.  Please be sure to do your own investigations, consult organizations and foundations who are supported by medical advisers involved in dysautonomia research.  And please be very careful when putting your health or the health of your family in the hands of people promising results that are not supported anywhere else.

Hearing about recovery is a very powerful message and we are so happy to read about Jodi's daughter.  We wish everyone the relief from symptoms and good health.

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I would also like to point out that this is coming from a first post user as well. I'm not saying Jodi doesn't exist, nor that her mother is lying about her experience, but I suggest to take it with a grain of salt regardless. If their "cure" (read treatment/regiment) was working that much more than other autonomic centers, they would have published publicly studies about it, in my opinion.

But im glad it worked for Jodi's daughter and hope her health stays that way forever!

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Hi, I definitely do exist. I wrote the book POTS, Together We Stand. I got remarried three years ago and now my last name is Parker.  I also wrote a chapter about my experience at the POTS Treatment Center in my book, becuase my daughter, as well as many other patients I sent there, had a great experinece as well as fantastic results. I never said that Dr. K. promised to cure POTS: as we all know, there is no such thing to date. (unfortunately) I was merely answering a question that was on the forum becuase the question was asked by one of your members. She asked if anyone had personal experience at the Treatment Center and what their opinion was of it was. I thought I was being helpful. Biofeedback is recommended by many POTS specialists as well as hospitals that treat POTS. Dr. Blaire Grubb, one of the most well known of POTS doctors recommends it for certain types of POTS and biofeedback is part of the POTS protocoal at both Mayo Clinic and Cleveland Clinic, so there must be something to it. Additionally, I am not trying to advertise, as I never even mentioned the book that I authored, because I did not want to slant anyone's opinion.  I have done a lot to raise awareness for this syndrome and for this community, and would never go out of my way to mislead anyone. Of course, not all treatment options will help all patients with POTS, as each case is unique, with its own challenges. I simply was saying that the program at the POTS Treatment Center helped my daughter, as well as many others that I sent there, to be more functional and less symptomatic, not cured. 

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4 hours ago, Jodi Parker said:

Hi, I definitely do exist. I wrote the book POTS, Together We Stand. I got remarried three years ago and now my last name is Parker.  I also wrote a chapter about my experience at the POTS Treatment Center in my book, becuase my daughter, as well as many other patients I sent there, had a great experinece as well as fantastic results. I never said that Dr. K. promised to cure POTS: as we all know, there is no such thing to date. (unfortunately) I was merely answering a question that was on the forum becuase the question was asked by one of your members. She asked if anyone had personal experience at the Treatment Center and what their opinion was of it was. I thought I was being helpful. Biofeedback is recommended by many POTS specialists as well as hospitals that treat POTS. Dr. Blaire Grubb, one of the most well known of POTS doctors recommends it for certain types of POTS and biofeedback is part of the POTS protocoal at both Mayo Clinic and Cleveland Clinic, so there must be something to it. Additionally, I am not trying to advertise, as I never even mentioned the book that I authored, because I did not want to slant anyone's opinion.  I have done a lot to raise awareness for this syndrome and for this community, and would never go out of my way to mislead anyone. Of course, not all treatment options will help all patients with POTS, as each case is unique, with its own challenges. I simply was saying that the program at the POTS Treatment Center helped my daughter, as well as many others that I sent there, to be more functional and less symptomatic, not cured. 

I apologize for my stance on your message. I didn't mean to offend in any way or claim that your daughter doesn't exist. 

It's obvious, based on the details that you gave us, that it really helped your daughter. I am very happy for you and hope that your daughter stays healthy and able to live a normal life!

I hope i will be able to follow her footsteps soon with my own problems. A 95% recovery would be the best gift I'd ever be able to get in my life. 

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