New Member

[Beck]

Good Morning, I was diagnosed with MVP (Mitral Valve Prolapse) about 6 months ago. In reasearching about my condition I see

that thosee with MVP are also linked to having Dysautonomia. Of course my Dr. didn't tell me that. It only took them 10 years to

find out I had MVP. Anyway, as I was reading about Dysautonomia, it was though I was reading about myself and all my horrible

symptoms. This must be the answer. I just happened to stumble on this site while looking for info on the disorder. It is comforting

to know that there are others out there with the same issues. I will continue to read and post. Right now I am on Zoloft for the

panic attacks I started having again. But nothing else. Could someone give me more info on the diagnosis and treatment

options? Can we be fixed or is this a lifetime ordeal. My mind is racing with fear all the time because of the daily symptoms.

Thank You, happy to be here.

[EarthMother]

Hi Beck,

It is hard not to get lost in acronyms and labels as we each try to find our own path along this journey. These are very strange body sensations and I think for me, my own panic disorder stems from my mind trying to make sense out whatever it is my body is trying to tackle.

I loved the advise this site has on What Helps .... things like compression tights, sitting down in the shower, or scheduling activity in the late afternoon ... were all things that I had learned on my own over the years. They also list lots of interesting information what meds some folks have tried.

There are some good free or inexpensive panic programs out there on the web, you may want to read up on what is available. I really like the healingpanic.com program because it focuses on what we can do -- like retrain our breathing and re-condition our minds.

I've also begun some interesting new therapy called SE. http://www.traumahealing.com/ For me there is something about POTS that feels like post tramatic stress syndrome .... it might be all those episodes of a racing heart. The SE approach to therapy focuses on retraining those neural networks to go down new paths and not fall back into our panic grooves.

Good luck finding things that work for you. You may want to pick one or two symptoms that seem most troublesome and focus first on those. Keep in mind that things that may work this week, month or year .... may not work next week, month or year. It's a dynamic condition and it requires us to become highly adaptive and empowered in our healing journey.

Good thoughts,

EarthMother

[Michelle Sawicki]

Hi Beck!

Welcome to the forum. You can read about treatments for POTS at: http://www.dinet.org/what_helps.htm

When I was first diagnosed I really hoped something would be found wrong in me that could be "fixed". Something was eventually found wrong, but it was genetic and therefore could not be fixed. However, some people do get much better and live fairly normal lives (I am one of them). And there are those lucky few that seem to have a complete remission of POTS, although it sometimes comes back in later years. Proper treatment of symptoms can make all the difference in the world.

Hang in there, we're here for you.

Michelle

[MightyMouse]

Welcome Beck,

another place to get treatment information is to download the free book from NDRF called "Handbook of Dysauntomia". Here's the link.

http://www.ndrf.org/NDRFHandbook.htm

Nina

[ethansmom]

Welcome to the board!! It's great to have you here, I hope that you will find some good resources and others to talk to as well. I don't have MVP, but I do have POTS, and I know that the two have some very similar symptoms- I am throwing in a link that I found very helpful for myself, it talks a lot about treatment of Orthostatic Intolerance and has some good info about treatment and causes:

http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm

I thought it was easy to read and very informative. I hope you can get your hands on some good information that will open up new doors for your health- it can be along road, but very well worth it if you can get some releif. Best of luck to you!!

[Beck]

Thank you all for the encouragement and helpful information. I will start researching. Hope you all had a wonderful holiday.

Talk to you soon!

Beck

[Texaslady1606]

I have been diagonsed with Neurocardigenc Syncope ,Anxiety Disorder, Gerd, bipolar . Have undergone surgery for the Gerd and a pacemaker due to several horrifying coding episodes while iat work, in the hospital and our home where my husband had to do CPR till EMS got there.

I had never heared of any of this before so I am just begining the jorney of research. I am a person who wants to know why how the circle connects.

Please allow me to question and share what I have already gone through and what is still occurring with the endless line of medications.

I wish to Thank You in advance.

Texaslady1606

[MightyMouse]

Hello Texas Lady,

you may want to post your questions to the group using "new topic" button--sometimes when folks post questions embedded within another topic, they may not get as many replies because others may not know the question is there.

Nina