Pots Treatment Center In Dallas Texas -- Dr. Kyprianou

[Lethargic Smiles]

I'd love to hear anyone's impressions of this program. I feel hope when I read about it and hear testimonials, but I have been hopeful in the past back when I was diagnosed with CFS instead of POTS, and have been very disappointed. It is rare I let myself get hopeful these days, so I thought I'd see your guys impressions of the website and such. I can't find a ton of information about the doctor (a psychophysiologist) online which is a bit concerning. I was surprised to search and find no discussion of it on here... (or maybe I'm a bad searcher? ) I am either going to try out this or try out the Pain Rehab Center at Mayo Clinic. I don't believe any of these places will "cure" me, but I do believe they can help make my life more livable.

I posted about Mayo's PRC and no one really said anything, so I'm guessing not many people have tried it. I'm a bit skeptical of it based on some of the things I've heard they promote, but I've also heard good things about it (for fibro).

Here's their website: http://www.potstreatmentcenter.com/

Here's their Facebook page where lots of videos can be found: https://www.facebook.com/POTSTreatment

 

[Guest Alex]

There was someone who posted on the forum a while ago who posted about her experience at the POTS center

http://forums.dinet.org/index.php?/topic/21303-pots-treatment-center-dr-kyprianou/?hl=%2Bcenter+%2Btexas

Also, this is another older thread about the same center.

http://forums.dinet.org/index.php?/topic/18849-pots-treatment-center-is-this-for-real/?hl=+texas%20+center

Dr K has been the main character of a few conversations here - a search of the forums using his name should generate a bunch of hits.

Hope this helps.

Alex

[Lethargic Smiles]

The search engine must have been messed up yesterday. Today when I search on here or Google lots of things come up on dinet, yesterday (even through google) nothing came up about it on dinet forums. Sorry for the repost everyone.

[Lethargic Smiles]

I just wanted to say I am going here. My treatment dates are July 22-August 2.

I know it is not a cure, but it is something that makes sense as to why it'd help with some symptoms, and I haven't tried yet, so I'm going for it.

I will be posting tons of details on my blog throughout my visit if anyone is interested.

[corina]

Good luck Jackie, hope the treatment will be helpful for you!

[lynnie22]

I just wanted to wish you good luck, Jackie and will be very interested in hearing about your experience.

[lynnie22]

Just wanted to add that looneymom just posted about the center and many positive things said. Sounds very promising.

[Lethargic Smiles]

Thank you everyone! You all are amazing.

[Lethargic Smiles]

Hey guys. This is a double post, but I wanted to get this information out on both threads where I talked about going to the center and people expressed interest in knowing how it goes.

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. Nerve damage or not, you can control your ANS more than you'd think. It may not make us symptom free, but I do believe everyone would benefit from having this skill.

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/

[looneymom]

Keep us posted on your treatment Jackie. Would you mind asking you doctor if they take patients as young as 13? I might want to consider this as an option for my son when he gets a little older.

[Guest Hanice]

Im so sad, I could never afford going there. Your daughter is too cute :-)

[Psalm 23]

Jackie,

Thank you so much for all the effort, time and energy you are expending in sharing your experience with all of us. I hope it proves successful for you. Your daughter is very cute. The separation must be terribly difficult. Looking forward to hearing about the rest of the journey.

Janet

[Guest Alex]

Jackie,

very thoughtful of you to share your experience with us. Thank you! Looking forward to read the rest of your success story.

Alex

[Akgirl]

Hello, I have been trying to follow your blog and this thread, and I am wondering how things are going in Texas for you? I am considering going there and was looking forward To reading about your experiences. I have a couple of questions for you that I think are appropriate for this forum.

1- how much does it cost

2- can you explain what they are doing to you and how it makes you feel

3- are you supposed to be better in 2 wks and that's it? No more going back there for follow ups??

4- what about the current medication I am on. Is the doctor okay with it or do they take you off it?

I would love to hear the answers and any other tid-bits you might share

[Lethargic Smiles]

Everyone -- I am so sorry. Somehow I didn't get the alerts for this thread.. or more likely, I did and forgot. I've posted some links a ways down that will describe a lot of what the center does and what a day is like there. It is day 44 of my treatment and, although I am not one of their miracle cases, I am doing better. I don't really know anyone (POTSie or not) who wouldn't benefit from learning how to control their ANS as much as possible.

The biggest improvements to me are... I no longer require compression stockings and my feet don't turn purple when I stand (thanks to improved circulation), I have much less joint pain, my back pain is completely gone most days, I don't get a headache each night anymore, I don't get lightheaded when I stand (if I remember to take breaths first), my nausea is much less frequent, and gastroparesis hasn't reared its ugly head at all. Many days, my brain fog is better. I notice that when I do something to spark a "flare", if I rest, I stop going downhill whereas before, no matter what I did, I'd crash and burn. Now, if I catch it in time and just take it easy, my body kind of stabilizes. I went to my sisters 30th birthday party this past weekend, and for the first time for 2 years, at a party I wasn't constantly worried about my symptoms. I just took a breather every 45 minutes or so and I was able to stay SIX hours. I'm still paying for it (4 days later), but like I said, I am at a stable level of worn out so long as I rest rather than going down faster and faster. Being able to enjoy myself at a party for 6 hours is astounding to me. Everyone who sees me says how something looks different about me and how my eyes have life.

What isn't better? My tachycardia is about the same (still on beta blocker). My orthostatic intolerance isn't much better most days but I think that will change soon because about once or twice a week it will be noticeably better. My fatigue is not better (this is unusual -- most people report this lifting early on), my lymph nodes still swell the same as ever, and my throat still hurts in response to physical exertion. My exercise intolerance is slightly better, but enough for me to get excited about. I think my throat issues, lymph node issues, and severe fatigue issues are separate from the POTS. I suspect MCAD triggered by mono caused this whole mess, but haven't had testing yet, so who knows. I do believe my tachycardia and orthostatic intolerance will improve quite a bit so long as I keep up with home treatment. Those are symptoms I went in knowing would take some time to see improvements in.

I met someone (teenager) while I was there who is doing way better than before. She can stand longer, she isn't near as tired, and she just has more vigor. Everyone is different and it seems there is no way to predict how much/little this program will help someone until they try it. One thing I have noticed though is I haven't come across a teenager who it hasn't significantly helped. I'm sure they are out there, but I haven't seen them. If you go the the center, there is a private Facebook group for those who have gone/are going through the treatment.

LooneyMom: They'll take any age! I met someone there would had just turned 15. She's doing great!

Hanice: Thank you! I couldn't have afforded going there either without a fundraiser. It was hard to shout out to the world "I need your help!" but so heartwarming to see how many people (even strangers) helped me.

Psalm: Thanks It pains me to see her here with my fiance and to be away, but it is so worth it when I think of being able to do things with her rather than just laying in bed! When I got back she asked, "If this doesn't work, can you go to the hospital and they'll do something else to make you better?" It pains me. I told her, "I will try for forever to get better so I can play with you."

Akgirl:

1) The cost is $5,000 for the 2 weeks

2) I think rather than explain everything here, you'll get a better idea of how it works/how I feel (everyone is different) from my blog. Some people feel instantly better, in days. Others, it takes a few months. It just depends on the person it seems.

Here is a link to my blog post on the tools they use: http://lethargicsmiles.wordpress.com/2013/07/26/pots-treatment-center-equipment/ and

Here is my blog post on why/how it works: http://lethargicsmiles.wordpress.com/2013/07/23/day-1-pots-treatment-center-education/

Here is a link to my first posts on the center and about my days: http://lethargicsmiles.wordpress.com/category/the-pots-treatment-center/page/2/

I update my blog frequently and am almost always referencing my treatment.

3) She recommends a 1 week follow up a few months after your first visit ($2,000), but doesn't require it. I am using my last bit of fundraiser money to go there in October. You get sent home with equipment to work on everything each day at home. I spend about 2 hours each days on my treatment. It is quite a commitment! Some people feel better after a few days, some after a few weeks, some after a few months, and sadly, I'm sure some never feel better at all.

4) She recommend some supplements, but is totally fine with your medications. She will offer alternatives to some medicines (but not that many really) but say to stay on the medication until treatment is underway and you're feeling a bit better, then talk with the prescribing doctor.

Does anyone have any other questions? I may direct you to a post on my blog if I answered it there, but I am happy to answer any questions! I had so many while I was considering this option and waiting to go.

[Futuremedstudentwpots]

This place seems like a dream POTS has taken over my sophomore and junior year of high school majorly effecting my chancing of getting into college or more specifically medical school since I’ve only been able to go to school 3 days a week and have seen more specialist and doctors normal people see in their lifetime, being told theirs nothing wrong with me or it’s in my head just because of ignorance and now knowing what’s wrong and not being able to fix it is definitely crippling during high school I was a hard core athlete I cheered for 8 years did softball and dance and track and basketball and then was on bedrest because my atomic nervous system Decided to stop functioning properly and now have so many limits to my everyday life but after it got worse it started getting better I’m just worried it’s to late for me to be successful since colleges look at junior year if anyone has tips or advice please reply neither of my parents went to college and I’m completely lost