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Ok, So Now I Am Panicing-Need Support And Advice Please

Debbie Rose

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So I finally saw the Autonomic person in the Syncope Clinic at Duke, but not a doctor-a P.A,-which I know the good ones are great. And she ordered the TTT and told me it was either POTS or NCS. But she would not fill out the disability form or become my primary source of care-that my PCP has to continue to submit it all and be my primary care person-and she does not appreciate it much.

Along with that my STD ends soon and LTD has all these forms and I have to apply for SSDI at same time. My brain is wonkie to some degree most days so it will take time.

The doc told me I had to drink>2liters a day, keep salt up, exercise and take my meds

How can anyone work when you have to concentrate on drinking that much and visiting the bathroom a lot because of it? I had gastric bypass 12 years ago so I can't gulp water like some?

I am a telephonic health coach so my conversations are 20-40 minutes long. And the stress of the new requirements of each call stressed me out so much it exacerbated the POTS to where I am now. And I need to try to go back???

Increasing salt is in progress and no big deal but with my fatigue and fibro exercise makes me worse the next day

The florinef has been working but wears off after 4 to 5 hours and she was surprised by that.

So how long does florinef last for you? I read a lot (some) people are on it several times a day.

My son gets married in less than 2 weeks up in Baltimore,MD (I am in NC) so travel and nerves are going to be involved-how bad has it gotten for some of you under similar situations?

At this point I am stressed, and scared and worried that by December I will be living under a bridge.

I am the sole supporter and my sister lives with me and has her own "issues" so depends on me-there is no one who will help (crappy dysfunctional family) Guess I could live in my car.

Everything takes forever!!

This seems so futile and hopeless right now


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Breathe. You are doing well. You've got a few tools in your toolbox. Fluids salt exercise. I understand about the insecurity of the future. I have to remind myself to get through the day. You've got a good gameplan. That says a lot. Weddings and the like are stressful to begin with. Do what you can do. My fav analogy is you've got to put your oxygen mask on first then help others put theirs on... I remember this from the days I flew on an airplane. The thought of flying now... Not a happy one. Hang in there

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Hang in there your not alone, I find my ability to deal with life's circus is largely dependent on how good I'm feeling that day; suddenly things feeling completely impossible on a bad day, and three days later I might be doing better and can reassess things more objectively. You could also try compression stockings they may help. I too have hmseen an autonomic specialist who was more just for the diagnosis but not continual care, it is frustrating, I'm still trying to find a specialist close to home, and one who has the time for my random symptoms.

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Sorry to hear things are so rough right now. You will be in my prayers! It was rough but worthwhile for me going through the mountain of paperwork to get SSI. (I have not worked long enough to qualify for SSDI) At the same time we were applying for me to become my dad's adult disabled dependant through the military, so tons of paperwork. I feel your pain! I had my family to help me make sense of it all since I couldn't think clearly. Is there a friend or somebody you could trust to come help you with the paperwork?

I went through the whole process before I had an official diagnosis which made extra paperwork for me. I was able to get a local PCP to fill out all the Dr portion with the help of a case manager.

I can't imagine the stress with your son's wedding coming up. I pray that it works out for you. Can you find something to do that would help manage the stress? I spend extra time in prayer and Bible study on whatever is stressing me out about the situation I'm in.

Best wishes and God bless!

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