Neurocardiogenic Syncope Community Group

For anyone suffering with an autonomic dysfunction like NCS, POTS, or other vasovagal syncope and would like to connect to others and discuss, share, and care about one another as we learn to cope with the many challenges of this disease. And remember that DailyStrength is designed to be completely anonymous. The only information that is required is for you to choose a...

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Heart, Blood & Circulation
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NCS and new insurance

Nkru28
Nkru28

Hi, my first post, I was diagnosed with NCS about 3 years ago after years of Dr trying to figure out what I had. Since than I have taken myself off the salt tabs and compression sock (34 years old now). I recently switched insurance and medical providers, so when my symptoms started coming back, my new Dr thinks I’m crazy wanting to start a heavy dose of salt tabs again when my results show I’m healthy.


Ive gotten To the point where I had an episode this week needing to miss work for 3 days, dealing through the light head ness spinning and short term memory loss. That I told my new Dr and wife I’m going to do what I thought was crazy 3 years ago and do 6 months of 8 g of salt per day.


As anyone had to switch medical providers and had a hard time trying to communicate NCS?


Also, since off the salt my wife says Im restless all night, I told her my legs after all day at work feel so heavy, guessing the poor circulation. That I fall asleep so early and quick, than wake up 2 hours later feeling like I just slept all night and fight to get back to sleep. Does anyone else have this issue?

PJamela
PJamela
I haven't had to switch medical providers. But I do understand the difficulty of explaining NCS.
I'm curious about the salt tabs. I have never been offered those before. Just told to drink a lot of water, and I'm not afraid to salt my food. It sounds like the salt tabs worked for you the first time, and since you didn't have any weird side affects from it, it sounds like a good idea. Let us know how that works for you.
Findtheway
Findtheway
I was dignosed with ncs in 20I7 and nothing worked, salt, compression hose, until I took midodrine. I have another condition that causes me to lose water. I have to be monitor salt and water intake.0 very carefully. Trigger is biometric pressure dropping, legs become heavy making it hard to walk. Still searching for answers.
CinderFall
CinderFall
I am 28 and was diagnosed in early 2015 and im trying to switch cardiologists and it is a nightmare. My new doctor, while probably good at his job just looked at me and told me it was probably all neurological. If it wasn't for my fiance, who worked for epilepsy doctor and actually saw cases of NCS come through the office, convincing him that I was telling the truth I doubt he would have believed me. In the end all he did was give me a week long heart monitor. Which I'm still on all my medications so it didn't so much (but i reported my symptoms and when i asked for a copy of my report it said i reported nothing). It's been 3 months and I was supposed to have a follow up appointment and they were going to call and set it up...and have I heard from them? No.