Pots Treatment Center (Dr. Kyprianou)

[daddysgirl]

Hi everyone!

I hope everyone is feeling fairly well today! I just wanted to pause for a moment and show gratitiude for help that I've found with my POTS and NCS symptoms. I've had a few reminders lately about how our symptoms can plague us and, rather than going on about my day and dismissing the reminders, I'm compelled to share with anyone who's in the market for some positivity.

I was coming back from lunch in my car today and noticed that the thermostat read 104 degrees. I started thinking how that heat used to put me on my back. Literally. The Texas heat used to make me so sick, and now I don't get sick from the POTS' related heat intolerance at all! Really! I went on vacation a couple of weeks ago and went to the river all afternoon - in the Texas heat - without fainting!!

I've recently moved into a new apartment and, after having ONLY a stand-up shower for the past 2 years, was taking a nice, hot bath (which I love to do). It struck me that I don't pass out anymore afterwards. It used to be quite the challenge to get from the tub to bed before I passed out, but I have not fainted in 4 years now!!! I don't even bathe with my heart monitor on anymore!!

I wear my cute heels to work again and haven't thought about my boring, comfortable loafers in the back of my closet for a couple of years now! My feet used to be too swollen every morning to even think about wearing high heels. In fact, squooshing them into those loafers wasn't pleasant either. I'm happy to report that I have gotten 3 compliments today on my brown floral wedges that are so cute!!

I have dinner with my Grandmother on Tuesday nights and she gets onto me about eating so much salt. She is deaf and I can't make her understand that salt is actually a good thing for me. I don't have the numbness in my arms anymore, which was one of my most annoying symptoms for a couple of years. I rarely get a migraine anymore and my memory is a WHOLE LOT better than it used to be! I feel like a functioning person again, instead of feeling like I'm barely making it and at risk of losing my job all the time.

Thank you for reading and I hope you too find some relief from your symptoms, even if it's only 50% improvement. My progress with the POTS Treatment Center wasn't instant, but I have logged my progress and can see how I am still improving to this day. I look forward to my future again and have Dr. Kyprianou to thank. Not all of us have the same issues and I'm impressed at how she is able to cater her program to what I needed help with so we could chip away at each symptom until they weren't an issue anymore at all! Good luck!!

[LMG]

Thank you for the great post and congrats on doing better and taking note of it too! I do wonder somedays....will I ever be able to sit at beach or just feel comfortable again and your post shines some light in that direction.

Can you share with us how long it took to get rid of some of the symptoms..memory and migraines and fatigue maybe? Those are pretty tough and would love to hear how biofeedback or anything else helped and the timetable.

Glad you can enjoy the outdoors again.

[yogini]

What type of treatments did you receive? Was it just biofeedback or something else?

[Kellysavedbygrace]

Also, I'm curious about your POTS history. Was it a sudden or gradual onset? How old when diagnosed? How long, etc. Thanks for the encouragement.

[derekliz]

could you tell us what is involved in the 2 week treatment plan? I am curious and how are you doing now? Is it worth the trip?

liz

[JennaC]

Liz,

Dr. K has too given me my life back. I believe I have posted more in depth on my treatment when I finished over a year ago. I was already seeing some benefits from yoga and acupuncture, but biofeedback and Dr. K's knowledge of dysautonomia and POTS were invaluable to my recovery. I still have some symptoms but my life is quite unrestricted. I can jog, ride my bike, play a little soccer. Also,

I am about to finish PhD! It was difficult to make the decision to go to Texas, and one I made with the help of my primary care physician. Fell free to ask me any specific questions.

[daddysgirl]

I'm so sorry, guys! I didn't realize anyone responded to my post! Well, let's see... My symptoms started to fade within a couple of weeks of seeing Dr. K. I started out seeing her twice a week. My symptoms continued to fade over the next couple of years. My brain fog was the last one to improve. My migraines and the numbness in my limbs were the first ones to fade. I will say though that it took me a while to implement all the aspects of Dr. K's program that she customized for me. Example: I didn't stop smoking until a year or so into my treatment.

Dr. K is the only treatment I've had. I don't take any meds - just vitamins and drink Spark for energy. Some days I don't even do that.

I live in Dallas so I didn't do the 2 week program. I started seeing her 2x per week and now I'm just basically seeing her for maintenance since I don't have the home system she recommends for remote patients. I hope that helps! I am going to try to upload a pic of me during my recent Caribbean cruise!! I'm elated that my body now allows me to withstand that kind of heat without any issue! Stay tuned...

[Guest Alex]

Sounds like awesome news! Good for you!

I'd be really interested to learn a bit more about your type of POTS as well as about the type of treatment you've received.

Alex

[ramakentesh]

The treatment as I understand it is biofeedback based and based on the belief that POTS and NCS result purely from abnormalities in the balance of the sympathetic and parasympathetic nervous system.

Those patients with very high tachycardia, sympathetic overactivity and parasympathetic problems may in theory benefit from these kinds of programs.

there are others with underlying neuropathy or norepinephrine transporter deficiency that in my opinion might be afforded less benefit.

Still people seem to report positive responses and while I am sceptical I wouldnt discourage anyone who could afford the price ($5,000) to consider it.

[daddysgirl]

Hi Alex,

Honestly, I don't know of different types of POTS. I'm sorry I can't answer that question better. Maybe I'm misunderstanding the question? As far as treatment, I got help from The POTS Treatment Center in Dallas. My customized program affected my diet, stress management, sleep habits, exercise, breathing, etc.

Hi ramakentesh, Thanks for the clarification. That sounds reasonable to me. I was dealing with high HR and low BP primarily. I am not familiar with all the various diagnoses POTSies can be diagnosed with, but I can't help but believe that POTS causes a myriad of other dysfunctions, some due to poor circulation and others just simply a result of the Nervous System going wacky all day every day for months & years on end. I think our bodies are glitchy and that causes other systems of the body go haywire. I did have pins & needles type pain in the bottoms of my feet and was sent for nerve damage testing. However, once my ciruclation improved, the pain in my feet eventually subsided. I am not a doctor, nor do I claim to be, but it seems odd to me that POTSies have so many conditions/ailments, some also having to do with other autonomic functions (ex: digestive issues, etc.). We can't be THAT unlucky. Life can't be THAT unfair. Some of us were perfectly healthy our whole lives until we started having POTS symptoms (which for me was age 27), and then the other issues began later. I've spend the past 12 years trying to make sense of this stuff. I was diagnosed before there was ANY information on the internet about NCS or POTS. When I would google Neurocardiogenic Syncope, Google would say "No resutls found - did you mean Grand Mal Seizures?" After being ignored and neglected by so many doctors over the years, I had no choice but try to make sense of it all myself, and to me, it all starts with POTS. Who knows for sure. POTSies vary so much in their symptoms, their triggers, other conditions/diseases/syndromes. I'm just grateful we have the information available to us on the internet that we do, and that we now have doctors who actually focus their entire practice on us (really, how awesome is that?!?), and that we have each other to compare notes with and vent to. I wish you all luck and health and love.

[looneymom]

How are you doing since you have been through the treatment program at Dallas? I was reading through your posts and would like to know what Spark is. Is this an energy drink or is it higher in magnesium, sodium, and potassium? Was there anything that helped you with sleep? My son has POTS and wakes up several times at night. Would love to hear more about your treatment plan. Hope everything is going well.

[daddysgirl]

Hi looneymom,

Things are going well! Thanks for asking!! I actually still go to The POTS Treatment Center for maintenance since I'm local. I didn't do the 2-week program like so many others have.

Spark is an energy drink made by Advocare. I don't pay attention to the nutrition panel (I probably should) but I like it because it doesn't made my HR jump, it doesn't make me feel anxious and I don't crash later.

I use the breathing and relaxation techniques Dr. K taught me to fall asleep. She also has CDs available. I just do what bits I can from memory (with her accent and everything!)

I never wake up during the night - very deep sleeper, I guess. I feel sorry for people who do. It's not restful sleep. I'm sure Dr. K could suggest some things. I had trouble falling asleep when I first started going to The Treatment Center but I don't remember her recommendations for sleep now. She thinks of everything! She customizes the program to the patient's needs so she had me quit smoking, quit drinking caffiene late in the day, eat healthier, etc. So it would be addressed in her intial consultation when she was getting to know your son. Do you know it isn't a side effect of a medication that keeps him from sleeping?

Does he have any other ailments besides POTS? I also have NCS but so many POTSies have so many ailments.

Take care!

[looneymom]

Thanks for replying. Sounds like things are going much better for you. My son is on the severe side of POTS. I am waiting on some autoimmune blood test to come back. Our cardiologist is thinking that there is more besides the POTS. I have a biofeedback cd that a headache specialist gave us a few years ago. My son did try to use it but maybe it's time to try again and use it just a night. My son has some neurotransmitters issues for sure according to testing. He is also being weaned off of florinif, so this may help with some other symptoms. The only medication he takes before going to bed is clonidine, which is supposed to help with pain issues. So glad you are doing better and I'll see if I can find the Spark for my son.

[lynnie22]

Great to read all this. Very encouraging. I recently posted asking people about alternative treatments that have worked. I keep reading more and more about this program -- it sounds very promising. Congratulations on your tremendous progress. Just a question about her two week program, if you can answer. I have heard that it is physically vigorous. Is that true, or is it tailor made in that sense also for each person? I would possibly be interested, but am totally out of shape, not at all helpful for my condition.

Thanks alot.

[Lethargic Smiles]

Does anyone have questions they would like me to ask while I am at the treatment center? I'm not afraid of going in with a list.

Lynnie -- Daddysgirl can probably answer this better than me but I thought I'd share what I know. It is all about recognizing when your ANS is going in sympathetic mode and deep breathing to help switch it over to parasympathetic mode. My understanding is it is a couple hours of biofeedback training each day. It starts with you in a recliner and you work your way to standing (if able). So while I am concerned it will be exhausting for me to do something for such a long time, it isn't like they're throwing me on a tilt table or making me exercise like they had to for all my testing at Mayo... so I'm hopeful. Some people actually report the sessions making them feel better rather than symptomatic. I've grappled with the idea I can breathe my body into being less symptomatic on my blog today. Sorry I always reference my blog, it is just I write all of my POTSy thoughts on it so it is relevant to a lot of our conversations.

Also, my insurance company (BAS) said if my PCP sent a letter of medical necessity, they'd consider covering the intensive 2 week treatment. I'm thinking this is because, were I doing twice a week visits over many months, they would cover it.

[lynnie22]

Hi Jackie,

That sounds fascinating. It's amazing that we can actually learn to control our autonomic nervous system.

What I'm curious about from anyone who's done this --Daddysgirl perhaps, is how does it become automatic and not a frequent need to breathe or be aware? How does the change become one you don't have to think about like in biofeedback where awareness is so important?

Good luck again, Jackie.

[Lethargic Smiles]

What I've read is with a lot of practice, it just becomes automatic. My understanding is it is sort of like when people are re-learning to walk. They are very conscious of each step and placement of each foot, but with time, they are back to walking around effortlessly without a second thought. The body just remembers what to do supposably. Patients from this program also do maintenance sessions after the initial intense training (2 weeks in Dallas/3 months at home) to keep everything fine tuned. Interested to hear someone's perspective who has actually done it since my knowledge is all from reading.

[Gemma]

Hi everyone. I was wondering is this clinic only located in Dallas. Is there any other doctors or clinics like that around pensylvania, ny area. And also, how much is a 2 week program? I saw someone posted $5000 is that the price?

[Lethargic Smiles]

I can't speak to other clinics that may be similar to this one. Biofeedback is not an uncommon therapy. What is uncommon is Dr Kyprianou being a physiopsychologist who conducts biofeedback on a very regular basis (I believe 3 patients per week) for POTS. As with any specialty area in the medical field, finding a doctor who understands POTS is important.

I can confirm the cost is $5,000 for 2 weeks. The cost includes equipment to do biofeedback at home following the 2 week accelerated program.

[Lethargic Smiles]

Hey guys. I'm on day 2 at the center and day 1 of actual treatment. I have blogged about it, but not gone into great detail about the specifics of what she does yet as far as the components of treatment but I promise I will when I have energy. I know a common complaint (including one of mine) is the testimonials say how much "it" helps without explaining what "it" is. That is probably because "it" is several things.

I just wanted to say it doesn't matter the cause of your POTS for this treatment because in all cases (as far as I know, please correct me if I am wrong), the autonomic nervous system is malfunctioning and the sympathetic system is over activated. This is a cause of a lot of the symptoms so learning to control the ANS into a parasympathetic state, rather than it controlling you, is beneficial regardless of the cause. The idea is the body may still try to activate the sympathetic system, but I will be able to recognize it and control it.

Here's the first blog on my consultation, there is one more posted as well on my educational portion.

http://lethargicsmiles.wordpress.com/2013/07/22/day-1-pots-treatment-center-consultation/

[Akgirl]

Does anyone know of someone that's been helped from the two week program? I live in ak so it's out of the question to go for any longer than a month.

[Lethargic Smiles]

AK girl, there is a whole support group that patients join once they start the program, and it is full of people who have been helped. I myself have seen a few improvements in just a few days thanks to my circulation being much better. I was hopeful, but skeptical, and I am very happy with my decison to try it. I have met one girl in her second week who went from bed bound to being able to walk. I'm not sure what you mean by not being able to go longer than a month. It is only a 2 week program (5 days a week) and then patients continue treatment with equipment at home. There is a program for local patients that is a little less intense as they can come visit the office regularly. That said, I'm sure there are people it doesn't help as much as it has helped many, but I think anything is worth a try.

[Akgirl]

I just accidentally posted to you on a different thread grrrr!!! I didn't notice that you had responded on this one. That sounds like a really cool program though, I wasn't aware that you bring something home with you!! In the other thread I asked you about medication. I feel like currently that's what's holding me together. So does the bio therapy take place of your meds? I would love any and all details you are willing to share!!

[lynnie22]

Hi Jackie, Like AKgirl, I'm also interested in other components of this program -- like meds, and I remember something about exercise. Also I am curious partially out of my ignorance, how is an overactive sympathetic nervous system a cause of all POTS? I am fascinated by what you are writing, so please continue. By retraining your nervous system to go para, does it then automatically do so eventually, thus correcting itself?

Hope, Jackie you are doing really well! I'm very excited for you!

[Lethargic Smiles]

I'm going to come back to this after I am back from Dallas because it is kind of a detailed answer. It's late so I'm low on energy and am not supposed to stress myself. In short, your parasympathetic system beingin control will become automatic. Right now, I have to focus really really hard to get it there and pretty quickly after I quit focusing, it goes back to sympathetic (as evidenced by biofeedback meaures). I think a lot of your questions make be answered in my most recent posts, but either way, I will come back and answer them in more detail here! In the meantime, here is the homepage of my blog where I have written 5 posts on my experience so far. The improved circulation I have experienced so far has helped in a lot of ways, but most noticably with blood pooling -- no more purple feet! This is even with having a mild case of EDS type 3! Please continue asking questions everyone. I had so many questions before coming here and felt like people said it made them feel better, but never fully explained, so I had to just take a leap of faith.

http://lethargicsmiles.wordpress.com/