Pots Treatment Center? Is This For Real?

[Clairefmartin]

Has anyone else heard about this "POTS Treatment Center"? I saw the page on facebook and was looking at their site, they claim to be able to help you "recover" from POTS without meds in 10 days with biofeedback. I find this VERY hard to believe and kind of dangerous, but wanted your opinions. I know a lot of us feel desperate for answers and treatment, and would hate to see people taking advantage of that.

https://www.facebook.com/POTSTreatment?sk=info

http://www.potstreatmentcenter.com/

Thoughts? Experiences? This really bothered me, it seems like a scam.

Thanks!

[icesktr189]

The treatment is administered by placing sensors (listening devices) on the surface of the patient's skin. These sensors are connected to electronic instruments and record a patient's biological information that is controlled by the Autonomic Nervous System. These physiological processes are displayed on a computer screen in front of the patient and he/she is able to monitor them constantly. Thus, patients go through step-by-step sessions whereby they are able to make the necessary adjustments to regulate their blood flow, muscle tension, stress, anxiety, blood pressure, breathing and heart rate while actually looking at all these autonomic functions. Eventually, the process becomes permanent and second nature to keep the ANS functioning normally just like setting an automatic thermostat in our homes. There are no side effects or pain involved but rather the sessions are very relaxing and rejuvenating every time."

She uses sensors? I feel like if it was an effective treatment, wouldnt Mayo have caught on by now?

[icesktr189]

I am talking to someone right now who did the program and it seems like it worked for them by breathing exercises to help control hr.

[MomtoGiuliana]

I think biofeedback can be helpful for some symptoms. I tried it when I was sickest and I feel that it did help me to learn some breathing techniques. However, I agree that any claims about being able to treat--especially without meds and in such a short time period--should be suspect.

[JennaC]

I recently spent 2 weeks in Dallas and would be happy to answer any specific questions. The 10 day program is great a way to get started on the process. I new going in to it that I would be following a "home plan". I felt well enough to taper off beta blockers and am now starting to do cardio (gentle) at the gym. One of the biggest benefits so far is that many of the huge heart rate spikes upon standing are gone thanks to the breathing. I would like to get a nice heart rate monitor and track it during the day to see my progress.

[Kirsti]

Don't worry, it is not dangerous at all! The biofeedback is placing a heart rate monitor on you and breathing in sync with the program. This helps you to control your heart rate variability. You are also hooked up to measure your muscle tension and skin temperature. There are no side-effects, and to me, taking medications is more dangerous. In fact, the biofeedback has helped me way more than any drug has. The doctor there is also extremely helpful and nice, she would never try to take advantage of you. It is definitely NOT a scam.

I did the 10-day program there last summer, and ever since then, I've had way better control of my heart rate, circulation, and temperature. I'm not cured, but it was still worth it.

[icesktr189]

I was talking to someone who tried it and they said it raised their bp?? I know you can lower your bp with breathing excercises, but how do you raise your blood pressure? I think its a great way to relieve stress and learn how to lower your hr, especially when meds dont always work, but on the facebook page they acted like it completely cured them from dysautonomia? There are soooooo many symptoms with dysautonomia, and i just dont see how that would fix ALL of them. I am all for something that helps, but that could be misleading.

[icesktr189]

Also, for somone wanting to learn breathing excercises to lower hr, any psychologist can help you with that.... mine has been teaching me to do it the past couple sessions. It does help when you are at the store and your heart starts racing. I find though that I NEED my heart to race to keep my bp up, so I dont really do them too much. It is also nice when you are laying down becasue it can help adrenaline surges slow down

[Kirsti]

The way it can help all of your symptoms and the reason why so many people felt cured after it has to do with getting your autonomic nervous system "unstuck" from the sympathetic nervous state. The deep breathing and relaxing are a part of the parasympathetic, which you want to be in. Apparently for these patients, the breathing correctly and relaxing helped the body go back into the parasympathetic.

[jangle]

I'm guessing something like this is expensive (for out of town patients) which probably isn't covered by insurance. It's a neat concept but I can definitely not afford it.

I'd be willing to try it anyway for that cost if there was RCTs or even prospective studies showing that it's effective, but I haven't seen anything and I can't risk losing that much money and not getting anything.

[Clairefmartin]

I was talking to someone who tried it and they said it raised their bp?? I know you can lower your bp with breathing excercises, but how do you raise your blood pressure? I think its a great way to relieve stress and learn how to lower your hr, especially when meds dont always work, but on the facebook page they acted like it completely cured them from dysautonomia? There are soooooo many symptoms with dysautonomia, and i just dont see how that would fix ALL of them. I am all for something that helps, but that could be misleading.

That was my thought as well.

I guess I'm skeptical about claims this extreme, but if something makes you feel better, great. But if it works that well, why isn't it offered as insurance covered treatment, or any journal articles about it.

[icesktr189]

I talked to a girl who said that they did accept insurance, but when I called they only accepted like 3 of them and it was only partial. No clue how much it is though

[jangle]

For the people who did go through this program can you please give a rough estimate of how much it helped you? Did it help at all with some of the common symptoms like lightheadedness, headaches, nausea, tingling?

I did see that biofeedback was useful for Raynaud's which is considered (I think) to be dysautonomia. This is one of those things I really wish could work but I'm skeptical.

[yogini]

I am curious. Biofeedback helps but would be surprised it is a cure. In general, most POTS specialists would know better than to say they have a cure, because we are all so different. I am not sure how biofeedback could help those of us with conditions like EDS and MCAD. Also, I wonder why this particular center is a "POTS Treatment Center" rather than just going to a regular biofeedback practitioner? Not to say this doesn't work, but it raises a lot of questions!

[JennaC]

Before making the decision the go to Dallas for treatment, I spoke with a biofeedback professional in my area. She unfortunately had not seen anyone with POTS symptoms and even agreed that going to someone with experience in that area would be helpful. I feel that the money I spent going there will pay off in less doctors bills (co pays, co-insurance) and prescription drugs.

[icesktr189]

I am curious. Biofeedback helps but would be surprised it is a cure. In general, most POTS specialists would know better than to say they have a cure, because we are all so different. I am not sure how biofeedback could help those of us with conditions like EDS and MCAD. Also, I wonder why this particular center is a "POTS Treatment Center" rather than just going to a regular biofeedback practitioner? Not to say this doesn't work, but it raises a lot of questions!

I too was thinking that.. those conditions I feel would be next to imposible to completely get rid of without medications. It says they treat the underlying cause, which is dysautonomia, but for most people there is ANOTHER underlying cause for their dysautonomia that keeps leading to it.

[firewatcher]

I believe that biofeedback can help, but there have been past conversations on the forum about it and meditation. Several members meditate regularly and still cannot control their POTS symptoms. There has even been a study (with unreleased findings) into hypnosis and the ANS (link below.) I think with an intact/functioning ANS, better/trained responses are possible, but to call it a cure reinforces the idea that this is all just "in our heads," and that we could control it if we wanted to badly enough.

http://clinicaltrials.gov/ct2/show/NCT00061009

"Detailed Description:

This protocol describes a study to investigate the relationship between susceptibility to hypnosis and regulation of the autonomic nervous system. Several studies have demonstrated that individuals with particular conditions such as chronic fatigue syndrome (CFS), posttraumatic stress disorder (PTSD), chronic pain, and generalized anxiety disorder (GAD), have altered hypnotic susceptibility. Patients with chronic orthostatic intolerance (COI), a general category of autonomic dysfunction that includes neurocardiogenic syncope (NCS) and postural tachycardia syndrome (POTS), often present with symptoms that are similar to those seen in CFS, PTSD, chronic pain, or GAD. These observations led to the hypothesis tested in this protocol that patients with COI may also have altered hypnotic susceptibility. We also hypothesize that increased hypnotic susceptibility will correlate with increased ability to modulate autonomic function appropriately in response to suggestions during hypnosis."

[JennaC]

I don't think anyone at Dr. K's office, or Dr. K, referred to their treatment as a cure. Although, they have patients that are living lives comparable to their pre-POTS days. I've come to terms that I will likely not be skating roller derby all over the country like I was 3-5 years ago, but I believe that I will be able to function relatively symptom free with this form of treatment. Maybe this is because there is not apparent underlying cause of my POTS other than a progression of symptoms for the last 10 years.

[MomtoGiuliana]

I think it is wonderful that this treatment has worked for some people--hopefully they remain greatly improved. There is certainly no risk involved (other than out of pocket expenses if insurance would not cover).

It could also be that some people, like me, got better largely independent of any treatment-- this does happen too--especially for younger patients, which it seems this program focuses on? Without peer-reviewed research it is unclear.

I think some of the language on the site should be read w caution, eg:

"...in an effort to inspire and help these patients to get their quality of life back. The patients that have finished the program are now out of bed and back to work or school able to graduate and get a college degree!"

Not sure that inspiration gets many sick people better, which goes back to Firewatcher's concern.

[issie]

It was suggested to me years ago by a alternative type doctor from Mayo to get a CD from Dr. Andrew Weil called "Breathing". It is supposed to teach you the same thing and would be a whole lot cheaper.

[MomtoGiuliana]

Yes, Dr. Weil talks specifically about controlling autonomic function through breathing (and I think yoga too?) in his book Spontaneous Healing--even though he does not address autonomic dysfunction per se.

[Elegiamore]

Well, I can add that I did a standard biofeedback program years ago with the goal of normalizing my blood pressure (hyper A POTS). It was expensive but it worked...for a period of time. The bp control was maybe improved 20% only.

For me, it was simply too exhausting to do the concentration involved. I found that I could NOT maintain the program without weekly classes/updates due to, again, the exhaustion from trying and my cognitive challenges in retaining how to do the process.

Frankly, I ended up very depressed as I was pushed to believe that if I tried harder, I could have been cured. And with constant shingles from the STRESS of trying to cure myself.

I'm with firewalker on this one.

[Clairefmartin]

I'm with Firewatcher too, I just don't like the language, and don't want to hear doctors saying - Oh look, you can do breathing techniques and be better. I still have nurses/med professionals try and blame my surges on stress alone, and I have a solid diagnosis, and surges happen when I am completely unstressed and resting, laying in bed. Deep breathing helps a bit, but does not "cure" anything.

[chipper]

It made me feel some better, but did not fix what is broken.

[jangle]

Ya I also don't like the language about cures or only showing patients who improved significantly. It's not that I'm a pessimistic guy it's just that turns on my skepticism vision and gives me the impression that this is more of a business than a genuine humanitarian effort. Rather I would like to see a report on a number of patients outcomes and to be genuine with the presentation.