Not Getting Better, Need Support

[samip28]

After 3 years, I finally got diagnosed with orthostatic intolerance and soft POTS. Everyone expected my spirits to be lifted, but we aren't even close to making me feel better. It has been a month and the medicine is making the chest pain constant and I just feel so alone. The doctor just keeps prescribing more meds, but I don't want to be doped up and drowsy.

I'm trying to be strong for my family. My doctors just keep repeatedly telling me this will go away, that I'll get better but I just feel like its getting worse.

I should be blessed that I can walk, but I just feel so alone. My parents don't know how to help and any friend I had has left me because I'm sick and couldn't get out.

[SarahA33]

Welcome to DINET, Samip28!

It took me years to get correctly diagnosed also. At first I felt relief, then uncertainty, anger, denial, etc. It took me a while to accept it and even understand what POTS was. My fiance and my family tried their best to understand, but the doctors didn't even have all the answers so it made it harder for everyone else I think. I did the same thing as you did, became strong for everyone else.. I realized when I found this site that I wasn't going through this alone, and suddenly my battle became just a little easier.

Now that you have a diagnosis you can start taking steps forward, and we have all taken 1 step forward and 2 steps back many times. There are others who understand what your going through. I'm glad you were able to find our forum.

Sarah

[p8d]

Hi,

Know how you feel. My Dr called me stoic but since I was diagnosed in March I just seem to be getting worse, even doing *everything* they tell me, all meds, exercise etc. My Dr said it takes 18 months to 3 years for the ANS to recover, on average but as many here can attest for some it is much longer. The lonelines is hard, I still struggle, read, get outside, walk since you can. May want to ask about an antidepressant. Real friends won't abandon you. Reach out, ask for help from friends, family, anywhere. Send links to videos, websites for others to help understand how disabling this can be. This site is great for support from people that truly understand.

[statesof]

Hey samip28, first off welcome to the forum, getting diagnosed was the beginning of the journey for me I still had a tough 2 years of trail and error with meds and finding what I couldn't do anymore physically before I felt like I had a better grasp on this condition. I think family is always in a difficult spot because it is hard for them to understand how someone who looks healthy could feel so poorly.

Some things that helped me were pacing myself and listening to my body first, not over pushing it even when I wanted to. Doing the whole water and salt loading, and being willing to try low doses of medications so that I could figure out how it would affect my body and this helped me in avoiding unwanted side effects; I've tried some have help some that didn't. And patience always helps, but it's much easier said than done.

[looneymom]

Welcome to the forum. It's tough when you feel like you are not getting any better. I watched my son keep going down hill after he got his diagnosis. I would suggest you keep a diary and watch for a patterns. Many things can make POTS worse. Just don't give up. Lots of information on the forum about things that can make POTS worse. Start with the basic things like salt, fluid intake, and exercise.

[samip28]

Thank you all so much! I know that there are so many diagnosed, but it's nice to see that I am not alone in this battle. I really appreciate all of your kind words! It means a lot

[corina]

Hi samip! Please know that you're not alone, lots of us are fighting this battle with you. I hope your doctor will find the med that works for you soon. Keep hoping!