Pots Treatment Center (Dr. Kyprianou)

[Lethargic Smiles]

I know this isn't answered in my blog, so I just wanted to say that this treatment will slowly take the place of medications. Dr Kyprianou is really knowlegable about medications and their mechanisms of action (many drs look at me like oh **** when I start talking "mechanisms of action") and even really obscure supplemets. I was pretty impressed. In no way do they claim to be an instant fix, which I like. As I improve, I will probably notice my medication slowly becoming the wrong dosage (heart rate will be too low/blood pressure will be too high). It's not like I will wake up one day with a pulse of 40 or something, I will slowly notice it getting lower and lower and can work with the prescribing doctor to adjust accordingly. It took awhile for me to get this way, so anyone claiming they can rapidly make me better raises quite a bit of skeptism! It will take an hour of my time every day for 6 months to be feeling quite a bit better.

Edited July 30, 2013 by corina

[Lethargic Smiles]

So basically thanks to POTS, our bodies are constantly in sympathetic mode. This causes a lot of unfortunate symptoms because cortisol is released which can hinder the immune system and we don't get enough time in parasympathetic mode which is where all sorts of important processes (like release of feel good hormones) tends to happen. Our body has this built in quirk/mechanism where when we practice diaphragmatic breathing, it tends to think all is good and relaxes into parasympathetic mode, but when we are chest breathing, thinks there is a threat and goes into sympathetic. If you look at babies, you realize we are born naturally pracitcing diaphragmatic breathing but tend to move to mostly chest breathing. I am learning to use this built in quirk to hyjack my body and FORCE it to go into parasympathetic mode. I measure this progress through heart rate variability training and hand temperature training.

The results are amazing. I am new, so unless I am REALLY focusing on it, my hands tend to be freezing (in the 70s). During sessions (I am doing the home program now) my hands eventually get to my goal temperature (96-97 degrees). On "bad" days or high stress days, after 20 minutes, I still can only sometimes get it to 94, or not even above 90, so it is a process. During my initial sessions at the center, my face got all tingly. It was a weird sensation and I asked what was going on. The doctor informed me it was my body getting used to proper circulation/oxygen supply. Eventually, I'll be able to get my body into parasympathetic mode more and more easily. Right now I need silence and (typically) for my feet to be up. As I get better and better, I will challenge myself and train sitting up, with noise etc.... Eventually, (6 months to a year) it will come naturally and my circulation will be flowing to my peripheral blood vessels without me thinking about it. POTS won't be able to hyjack my body as successfully because I will be an expert relaxer.

As of now, I still don't have as much energy as I'd like, get fatigued quickly, I still need to take it easy, and I still get symptoms, but it is getting better. The symptoms are slowly becoming less and less frequen and severe. I don't care if they only get .000005% better a day, I'm ecstatic for them to be moving in the right direction for once! Tachycardia isn't really much improved, especially when it comes to tolerating posture changes, but I am confident that improvement will come with time. I don't get lightheaded when going from sitting to standing so long as I take my breaths first, so that is neat. My pain (back/throat/joints/headaches) is never severe anymore when it used to be severe every single day. I went from fevers nearly every day to 3 or 4 fevers in 20 days. My nausea is much less frequent. Some days, I can exercise 6 minutes. Nothing has been able to give me improvements in the way this program has. Symptoms have always just had a bandaid put on them, they haven't been eliminated or controlled from the root.

I'm sorry if this is scattered. Please ask for clarifications wherever you need them and also check out my blog where I am talking a lot about this. I just wanted to update you guys and give you the gist of everything like I promised I would. Here's a post on my first "victory"-- it truly is amazing. I cannot believe the success I am having. You know you're sick when you call ending your day extremely fatigue, in moderate pain, and having had a fever that day a success! I am well aware this progam isn't the answer for everyone, but personally, I am so happy I gave it a shot.

http://lethargicsmiles.wordpress.com/2013/08/12/victory-2-id-be-equally-amazed-if-i-threw-this-kindle-and-it-floated/

[lynnie22]

I first off want to say I'm really excited for you Jackie! It sounds like this program is definitely helping and will continue to help you. The yoga masters have demonstrated (after much practice) complete control of their autonomic nervous system and I know they use several breathing techniques as part of it, especially diaphragmatic breathing -- and it sounds really key. Especially when you can measure your parasympathetic progress. I do have a couple of questions if that is okay. Does Dr Kyprianou believe that everyone with POTS suffers from this sympathetic overactivity? Does she explain how that relates to the nonvenous return or lack of blood volume when we stand (or change position)? That part I don't totally get. My hands, by the way, are always warm, and my feet, ice cold -- making me a weird POTS person, I think. More questions perhaps to come. In the meantime, keep us informed of your progress.

[Lethargic Smiles]

Yes she does. It isn't really so much as she thinks sympathetic overactivity is a cause as she things it is a "side effect" of POTS (my wording of her theory, not hers). If you look at what happens when we are in sympathetic mode, it is most of our symptoms. So while sympathetic overactivity doesn't cause POTS, POTS causes sympathetic overactivity which results in a majority of my symptoms. I of course cannot speak for her or the center, I am speaking based on my understanding from what I learned while there. She doesn't claim to know the root cause of all types of POTS or any of that. She doesn't claim to know exactly why my blood pools, she only claims that she can help alleviate it. It is not unlike many of our typical POTS doctors who offer up solutions but are unable to tell us the root cause. She claims to be able to help me control my ANS rather than it getting to choose to always be in sympathetic mode and me suffer all the negative consquences. I do feel she is closer to the root cause of my symptoms (maybe not necessarily my POTS) than any other doctor has been before. And honestly, while I'd love to know the root cause of my POTS (likely my EDS but then what's the root cause of that), I mostly just want to get on with my life without tons of symptoms holding me back!

Lucky you with warm hands! Sometimes I think my hands are warm, but when I measure the temp they are 90 or so when the goal is 96-97. Although I am getting my hands warmed up, my feet are still FREEZING. In the program, you work on hands first because they are much easier to get proper circulation to than feet. Once I master my hands, I will then hook the thermometer to my toes to work on them. I will miss sticking my ice cold feet on my fiance's back to make him jump! There are also other ways sympathetic activity is measured such as muscle tension (EMG), GSR Galvanic Skin Response (sweat gland activity on hands), and heart rate variability.

I used to have such terrible blood pooling that just sitting in a chair with my feet on the ground, my feet would turn very dark red or purple. With my improved circulation, it is much less of a problem. I can't stand too long yet, but the blood pools much slower when I do. When I am sitting, it doesn't pool enough for me to notice if it is unless it is the end of a very long, symptom inducing day. The first week there, I ditched the compression stockings and my Mom took me to the mall to buy a short sundress. She cried because she was so happy for me. I really can't quite believe it! I recently found out I have EDS type 3, so I really wasn't sure if this would help.

Nonvenous return is not something I have struggled with, and if I do, I don't know about it, so if you could enlighten me on it a little maybe I could answer.

Edited to change correct a mistake in describing GSR.

[Lethargic Smiles]

I also thought I'd add that insurance did not cover this. They said it is experimental and mailed me a list of conditions they are willing to pay for this type of center for.

[lbb]

Has anyone been to the POTS center in Dallas recently? If so do you think it has been helpful? Thanks

[Katybug]

http://forums.dinet.org/index.php?/topic/25623-appointment-with-dr-suleman-at-the-heartbeat-clinic/?hl=dallas

This thread may be an answer to your question,lbb.

[Katybug]

http://forums.dinet.org/index.php?/topic/25251-officially-a-potsie/?hl=dallas

More info on someone who has been to Dallas clinic.

[lbb]

Thanks a bunch Katy!

[shelby_725]

I attended this clinic in July of this past year. A quick history on me. Onset at 17, diagnosed at 23 at Mayo, bed ridden 21-24. Went back to school and have been struggling, but getting better slowly since. I have NCS and POTS. I have been through and heard anything to help me from tons of meds to a random doctor telling me to hold my breath and bear down to get the blood back to my brain like they do in the Air Force. I have taken up to 20 meds at a time, been send to doctors and specialists and therapists, you name it.

I went to Dr K thinking I was going to be the one that proved this lady wrong. Sure you fixed people before, but I am complicated. I have been sick so long and proved doctor after doctor wrong. So yes I went in with less than positive attitude. I do have to say she proved me wrong. When I left the two weeks in Dallas I had never felt better. After being home I am still doing a LOT better. Not as good as I was doing in Dallas because it has a lot to do with stress. Dallas was vacation for me focused on feeling better. When I got home I finished planning my wedding and getting married, had to go back to work, changed my job due to the high stress of work and am slowly feeling that amazing feeling when I left the clinic. It is a lifestyle change though, you only feel as good as the effort you put into the program. I know the days I don't work the program 100%. Any questions please send me a message.

Hope this helps!

[lbb]

Shelby_725, I'm so sorry that I'm only now replying to your post - I just read it a moment ago. Thanks so much for sharing your experience with me. My son, who just recently turned 18, was diagnosed with POTS at Mayo in Florida this past November. He has been sick for 5 years and had to withdraw from school at that time to be homeschooled. Since March 2014, he's been much worse, having daily symptoms. He's basically homebound and has lost contact with all friends,etc. He's taken it in stride for the most part but is starting to feel as though he has no future.

It sounds like you've been through years of suffering - I'm happy that you are feeling so much better! Your story gives me hope for David's future. I'm on the fence about the clinic. I called Dr. K and spoke to her at length,but I still have a couple of questions if you don't mind. How much of the program was spent in "therapy" and how much was spent on relaxation/meditation exercises? Did she prescribe you lots of supplements and vitamins - if so, do you think they were very expensive? Was nutrition a part of the program (my son is about 50 lbs underweight)? In your opinion, do you think biofeedback can be learned at home, provided you have the equipment? I've read that you can buy the Heartmath equipment on Amazon that they send you home with.

I realize this is a lot to ask and can't thank you enough for your insight!

[shelby_725]

No problem. I think that Dr. K spends different amounts of time and focuses on different things with different people. We would go there in the morning and be done with the treatment center around noon, which was great because you need to learn how to live your life again with help from the center. So usually I would be there around 8 am. They would do vitals and discuss daily symptoms rating them. I would do my first relaxation which is about 20 minutes. Then depending on the day I would meet with Dr. K, Andrea, Dr Townsend to work on other aspect of the program. Then a break. Then I would go back and do my relaxation for another 20 minutes then meditation. About noon we would leave and do some stuff just mom and I and as the time progressed I was able to do more.

Yes she did prescribe vitamins and supplements, but I think you can get them at a lower price. We don't have a Whole Foods and I have been able to find everything locally through a health food store, but GNC has some of the stuff. Supplements and vitamins are on a case by case situation as well, depending on a persons symptoms. Nutrition was a part of my program because I am overweight. So Dr K. did touch on nutrition with me. I do believe that they treat the person, I have different symptoms of the same disease as your son and the next person and her and her staff definitely individualize the program to your needs.

Heartmath is available online in many forms, but if I would not have had the instruction from Dr. K I don't think I would be able to utilize the tool as needed. It is included in the program fee, so that is a plus. I do understand it can be spendy for the clinic, but we spent so much money on tests and treatments in hospitals and clinics and this would have saved hundreds of thousands of dollars of medical treatment if I would have gone there first, and I feel better. That is the most important. Plus some insurance companies will reimburse you on some treatments, they can give you a bill with the correct coding to file yourself.

I hope this helps!!

[WellBren]

Has anyone tried the POTS Treatment Center in Dallas lately?  They have a LOT of stuff on Facebook and dozens of testimonial videos on their site.  I see great things about Dr. Kyprianou and I am encouraged by the fact that people say they are really caring and not just pushing people through like machine.  I noticed they also have an "online" treatment program.  I'm wondering what that is like.  I can't find much about it, other than it being listed on this page of their site. It says "group or private sessions."  I think I would prefer private, but I don't know...thoughts? Maybe there is a discount for group sessions?

[Nemesis]

Greet best wishes

[sfthriller]

@WellBren Did you end up going to the Treatment Center?  I've been suffering with POTS for 5.5years and I'm actually visiting the Dallas area more now.  So I figure I should check the place out.  

[ramakentesh]

I think biofeedback is as likely to be more than a placebo at about the same level in POTS as it would be in essential hypertension or MS.