Pots Treatment Center? Is This For Real?

[peregrine]

I'm with jangle and others here... I'm super psyched that it has worked for some folks who've been kind enough to share their stories here. But (as a scientist myself) I want to get a sense of how well it works for what percentage of the population, and whether there are correlations with particular types of POTS (e.g. do hyper POTS folks benefit more or less than denervation POTS folks, are there links with age/sex/medical treatments undergone/previous biofeedback experience/stage/symptoms/etc)... without that information there's no way I personally would be comfortable spending money on something with no scientific evidence. I'm happy it's worked for other folks, but the usual anecdote is not data argument always makes me feel so pessimistic!

Also, as Elegiamore said above, and as a personal user of biofeedback for more than 5 years myself to fix a problem that the biofeedback only mostly helps with... biofeedback is not a magic bullet. It takes a lot of time, a lot of concentration, and it still doesn't work for everyone.

Geez, I sound like a pessimist too! Sorry 'bout that :^) Glad the program has worked for some folks!

[JennaC]

I agree that scientific data on this type of treatment is needed, but as a scientist myself (toxicology) I have learned that very little money is put in to treatments that companies cannot make huge profits from.

On a side notes, I recently read Molecules of Emotion by Candace Pert and my entire outlook on disease and treatment changed. She discovered the opiate receptor and has an amazing story.

[jangle]

I might try this treatment anyway since I already live in Texas and Dani mentioned they take 3 insurances (maybe I'll be one of the lucky ones!). If I can get the cost low enough it might be worth the try. The thing I like about it is this seems to be the only center that's specifically designated for POTS. I feel like each doctor I've been to has very little idea about dysautonomia and isn't bothered to really spend a lot of time even studying it. That's nothing to say that biofeedback is all of a sudden legitimate, but it'd be nice to at least go to someone who has seen probably many many many times more patients with POTS than most doctors in the nation and has experience and dedication to treating them.

(Maybe my bitterness towards the lack of insight into dysautonomia from the medical community is showing.)

[peregrine]

Totally agree with both of you; it's certainly worth a try and it's extremely unlikely anyone would try a randomized trial (funding, hahaha). I guess my two concerns are cost (how much?) and the fact that the group themselves is not publishing any information on their success rate or anything other than "our patients can resume normal activities of daily living and are back to close to normal!" If they would even list on their website about how often it's successful, or any shared characteristics of patients, that would make me a lot more comfortable. I could see an argument that that would hurt their chances of getting patients, but on the other hand if their desire is to actually help with POTS, as opposed to just making money, it seems like the ethical thing to do.

There's certainly a very nice attraction to seeing someone who's actually familiar with the diagnosis, though!

[icesktr189]

The problem I had is when I talked to someone on their Facebook page in a message, they really didnt know what OH or OI meant, which means they probably didnt know much about their condition in general. By no means am I calling anyone stupid or anything, but lack of knowledge about your condition would make for an easy target. It seems to help more people with just POTS (increase hr) than it does for people with OH.

[Lovebug]

Biofeedback is a wonderful tool that can be used at home. However, I must say that there is extreme skepticism when it is claimed to be a cure. Especially since I actually tried biofeedback under the care of a therapist and all I did was get sicker (this was before my diagnosis). As a matter of fact, I was on a strict exercise regimen and eating quite well at the time. Having said that, I personally believe that the mind is an extremely powerful organ and can definitely have an effect on our bodies. But if our minds controlled "that much" then why don't doctors use it for Cancer patients? They could teach patients to "will" away the cancer and control the bodies immune response so that they could fight the cancer.

I read through the entire website and feel that more information needs to be present. They definitely need to address how much this costs and what insurances they take. Also, how much (& what is involved) in the mobile appointments that they offer. Everything was slightly vague.

[Clairefmartin]

Dani - I'm interested in what you mentioned, about people on their site not being as educated about POTS. That was my concern, that this company could be taking advantage of people without the medical/science/knowledge background that many folks on here have - and it could be just a ploy to make money. There is a certain person who claims that Lyme disease causes all POTS, and he posted it on a group on FB, and I watched the thread of young teenage POTS patients get all excited that they had found their answer and cure through antibiotics. It reminded me of that.

I may contact them and ask for success rates and numbers, its not like I have anywhere to go these days (I'm fairly bed bound right now ).

[roxie]

I do think the claims are incredible and it's typical of companies to use their best success stories for marketing.

However, i also believe it's highly likely this program IS BENEFICIAL when used with other treatments. Did you notice the two people on here that have seen Dr Kyprinou said it's helped them, even though they aren't 100%?

I just moved to DFW & am seeing Dr Suleman. He is sending me to her. I think he sends most of his patients to her. In fact, probably most of her business is through referrals from him ( just a guess) Watching the videos, you'll see the people talk about him referring patients to her.

Dr S has a 5 prong wellness program specific to the findings of the testing he does. And it is extensive testing, I just went through it all.

He told me that biofeedback treatment part is to teach you to control heart rate fluctuations with your brain and breath.

I haven't started the program yet, but I will be soon and I'd be more than happy to let you know how it goes!

[janiedelite]

I hate bananas,

I'm very interested in knowing how you progress with this treatment plan. Thanks!

[icesktr189]

I do believe it can def. help, but my problem was that most were saying it could completely cure you of dysautonomia. For most of us heart rate is just one of the thousands of symptoms, and I really think the way they sold it was misleading. I would also love to hear hoe it goes! I am all for anything that helps

[daddysgirl]

I understand how many of us have become jaded from so many doctors who didn't care enough to even Google POTS so they could understand what we were going through, but I would hate to see anyone discouraged from considering Dr. K's program because of the skepticism of others! I'll admit that I was skeptical going in for my first appointment at the POTS Treatment Center, but that didn't last long.

I didn't want to patch the problem, I wanted to address the underlying cause, which is what Dr. K's program does. She treats the whole person. The program isn't simply biofeedback. She is working on all your specfic symptoms in your body and tailoring the program to fit your needs. She knows that our symptoms are not just "in our heads" and teaches us how to help our bodies overcome this illness. She is teaching you how to take things under control, instead of being reactive to your POTS.

I'm not sure about trying to cure dysautonomia - I think she's only trying to help us recover from POTS, hence "POTS Treatment Center". Why would it be wrong for her to say she has cured or helped patients recover from POTS if she has? I don't understand the issue with it.

As for me and my stats, I would say that personally, I feel about 96% better than I felt before I found Dr. K. For about 7 years before that, I was miserable and had really abbreviated every activity in my life due to the POTS and NCS. Since I started on the program, I haven't fainted in over 3 years!! These are my symptoms that have either gone away completely or greatly improved:

Fainting (due to the NCS)

migraines (at least weekly for a year and a half)

tingling my arms (for 3 years)

pins and needles in the bottoms of my feet (for several years)

swollen feet and legs, and arms and hands

sensitivity to heat, dark or dimly lit rooms, being startled, sudden pain, strobe lights, (and the list goes on) would cause me to have lightheadedness, nausea, double vision/tunnel vision and then I would faint.

I'm grateful for my improvements and I'm glad I'm not on beta blockers anymore and dealing with their side effects (like brain fog and memory loss).

I'm trying to think of some of the other comments on the thread... As for success rates, I honestly feel like some people would pick apart whatever she claimed. If she said 95%, they'd say "no way, too high, it's a scam" but if she said 50%, they'd say "see, the program doesn't work". You can't please everyone all the time, but I'm glad the program worked for me. Someone said "inspiration doesn't help sick people get better" and I whole-heartedly disagree. Wanting better health and better qualify of life is my inspiration and Dr. K inspires me to follow the program and improve my specific issues during my sessions, and I am feeling a whole ton better!!

Sorry, I'm not sure I can explain it any better than that. I don't get into the medical equipment side of things or the medical terminology. I have enough on my mind without trying to keep all that straight. I hope no one thinks I'm stupid because I don't know a lot about Orthostatic Intolerance or all the ins and outs of dysautonomia in general. I just focused on my symptoms and my treatment and now I'm busy doing stuff with friends and family and enjoying my life again.

I wish everyone well, however and wherever they find help.

[Monstrosity]

I just talked to them and got some info. I woke up in a mood and had the Gastro Emptying test done so I'm a little off today. I got numbers as far as how much it would cost. I also asked about succession rates. The woman said they are 60% or better. I'm going to talk with my human resources department tomorrow to see what I need to do to get insurance to cover it.

Even if my insurance co wont cover it, if this program gets me %60 or better I'll be happy...

Daddysgirl I'm glad you posted a response.

I hate Bannanas I hope you step forward and give us some feedback as well.

[roxie]

I'm really glad it has helped you, daddysgirl!

I didn't complete the program for a number of different reasons, but I still believe that biofeedback has the ability to help

I did this thread about it

It is something you have to do consistently to see it's benefits. I'm working on a home program now. For me, at least, I know everyone is different, I need more than biofeedback. Im still working on exercise and with my main dr to find the right combination of medications.

[Monstrosity]

I'm really glad it has helped you, daddysgirl!

I didn't complete the program for a number of different reasons, but I still believe that biofeedback has the ability to help

I did this thread about it

http://forums.dinet....__fromsearch__1

It is something you have to do consistently to see it's benefits. I'm working on a home program now. For me, at least, I know everyone is different, I need more than biofeedback. Im still working on exercise and with my main dr to find the right combination of medications.

Excellent thanks for sharing!

I'm illiterate to a lot of the terms with Dysautonomia. (Using Eddie Murphys voice from the Nutty Professor) What in Stupid dummy terms is Biofeedback exactly?

[roxie]

http://www.mayoclinic.com/health/biofeedback/MY01072

[Ashelton80]

I actually just got home Friday from completing the 2 week program at the POTS treatment center in Dallas with Dr. K. At this point in time I can't see any major improvement from the program, but was encouraged to continue the at home program every day which I am doing. While I don't think they have claimed to cure anything, they do seem to be more eager to share charts of patients who have rapid symptom decline in that 2 week period. I doubt they will be posting my 2 week chart as it really didn't look much different than the first week. Actually, because I was starting my period the second week things got a little worse.

The trip was VERY expensive and is a long time to be away from home. Especially when one has a child. I still feel like it will be a valuable tool in my box to manage POTS. I also did speak to a few girls doing the in town program who are doing 90-98% better and live normal lives. That was worth the trip alone. Not one of them is using biofeedback alone to treat and manage the complex condition. Exercise has shown to be more effective for me as far as time goes. If I take two weeks to really hit the gym and work out hard, I get a much better result than I did with 2 weeks at bio. Put the two together (exercise and bio) along with diet, salt loading and getting adjusted by my chiropractor I honestly don't see why I can't get close to 90% or more. I got very close last summer with just exercise, diet and getting adjusted.

I think it's important for everyone to find their pieces to the puzzle and stop worrying so much about a "cure"or whether people are claiming a "cure". There's not one and likely won't be one. I didn't got there expecting to be cured after 2 weeks. I know enough about this condition that it takes time with anything I do. This type of training would be valuable for anyone with the stressful world we live whether you have POTS or not. So, do I think it's worth it? I'm not sure yet ask me again in a month, but the only thing lost is $$.

Oh and don't be fooled that you think if your insurance doesn't cover something it must not be legitimate. Insurance companies don't give a flip about you or your health for that matter. They are concerned with their bottom line... period.

Hope this helps.

[roxie]

Thanks for telling us how it went for you!

Are you going to continue at home?

[Ashelton80]

Your welcome i hate bananas! Yes, I am continuing to do the at home program every day. I just got finished actually and have a headache now..haha. I don't think my brain is accustomed to having much oxygen

One other super funny story I have to share. I grew up in a really small town in West TN. Like 5,000 people total and a couple of stop signs. My mom posted that I was going to the POTS treatment center in Dallas. Next thing I know it's going around town that I'm in rehab for marijuana!!!!! LOL My husband said he wished that was the case because it would be more fun. The joys of nosey people. I don't live there anymore btw.

[AllAboutPeace]

That's too funny! I'm sure people think that all the time since no one knows about POTS.

[roxie]

Lol! That's real funny

[heathmcev]

My POTS neuro has suggested biofeedback to me in the past as a good way to help control heart rate and BP. He said any well-trained biofeedback practitioner would be fine (iow they don't need to know about POTS if you can explain the end-game to them). What dani said about needing the HR to increase BP makes sense... I tend to have very low BP, so my racing HR is really a compensatory mechanism. Without that (like when I've been on BBs to lower HR) I get closer to passing out... sooo, if biofeedback could teach me to raise my BP (without increasing any stress response!) that would be FAB!

I agree that anyone who offers a "cure" is suspect... we are too diverse a community to be grouped into one catch-all "fix".

[Clairefmartin]

Since posting this, the center actually changed their language to not say "cure" on their website (it stated that previously) and I have heard from both people who loved it and others who did not think it was worth the money, but learned a lot. My feeling is that whatever works is great, and to each their own. My big initial issue was the "cure" wording I have also heard that Dr. K works with Dr. Suleman, who is supposed to be great - so kudos to them both for trying to help POTSies.

Claire

[Monstrosity]

I asked my Doc at the Cleveland Clinic last night and she she's sending me to a therapist who does Bio Feedback. I'll post a link if I can find one. I'm really glad I didnt jump on a plane and fly to TX.

[roxie]

Great! Definitely keep us posted!

[Monstrosity]

Great! Definitely keep us posted!

will do and thanks for all the info you sent me!