Jump to content

*just diagnosed with POTS & NCS*


gdomaracki
 Share

Recommended Posts

Well, where do i begin?!? Just five months ago, I was living the normal life of a typical 20 year old. Working full time and going to college. Around the beginning of december, I began passing out and feeling weak on a day to day basis. After NUMEROUS tests, hospital visits/stays, monitors, medications, and hundreds of doc visits, they give me a diagnosis of pots syndrome and neurocardiogenic syncope. Why this has happened to me, the doctors have no clue and neither do I. All I know is that they tell me for now that I can't drive or work. . .and basically live my life. Everyday is such a struggle, a new challenge. I'm finding it so hard to accept the fact that there really isn't alot of treatment out there for these illnesses and that I might have to suffer with this for the rest of my life. I take midodrine so that I can get up everyday without severe svt, yet if I remain in an upright position for over an hour, I am almost sure to feel faint or pass out. PLEASE, if you have an information on any types of treatments that have helped you or want to chat, I need some kind of understanding to all of this and some friends to help me thru this. :ph34r:

Link to comment
Share on other sites

Blondie, there is help for you on this forum. We will be your dysautonomia pals.

It may take some time for you to find the right meds or combo of meds that will control your symptoms. You have already taken the first step by getting a diagnosis, so you are already on your way to improvement.

It is hard to have patience, I know, but there are some treatments that do help . . . it is a question of finding the best one(s) for you.

Hugs,

Link to comment
Share on other sites

Blondie,

I just wanted to say welcome. I kind of understand where you are coming from I also have POTS and NCS. I quit working last month. Its been very hard for me. I am still having a very hard time dealing with it. But that what is great about this forum. Its the only place I can come and others know what it like. I am not sure if I will get better or not. I am 26, I am hoping that I can go back to work one day, as for know I am just doing what the doctor want me to try, and am hanging on to hope. As for treatments, it seem to be hot or miss. I think each of us could try the same med and could all get diffenert feelings. The one thing I have learned it to push the doctors. If I don't feel good, or am not happy with the meds I let them know. THe best thing for my treatment was to find a doctor to work and listen to me. Beleive I have gone though some doctors, but you need to have a bond, and trust them. I wish you the best of luck!

Welcome again! :ph34r:

Link to comment
Share on other sites

Guest Belinda

Hi Blondie..Welcome! I am 28 and have been dealing with this for a year at least the orthostatic problems..

I can understand your frustration being so young..I find there are many of us in our 20's when autonomic problems start.

I found that research is the best thing for us and staying in contact on this forum..it has helped me learn that many of my symptoms aren't so off the wall.

Definitley look up as much as you can as it will help you with questions and help you to understand treatment options to discuss with your doc.

Take care..and big hugs..

Belinda

Link to comment
Share on other sites

Hello. I know exactly how you feel. It is a life changing experience. Start by doing the what helps on the potsplace web page. They really do help. Even the little things like gatorade can make a huge difference. Compression hose. The hard part is when you are diagnosed and it takes forever to get into specialists. This support forum will get you through a lot. It is just wonderful. Look at what people have at the bottom of their messages and see what has helped them. JenniferTX

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...