Dysautonomia treatment

[AlyssaM0987]

I have a few further questions for those who have been diagnosed with Dysautonomia... Has anyone ever received any actual "treatment" and seen improvement in their symptoms? Is it true that these disorders are only treated with symptom control and lifestyle management? I am still in the process of getting a diagnosis, but I feel like I am already doing all of the recommended lifestyle changes and I am still not seeing improvement. I am currently taking sunthroid and feel like it makes me very ill (dizzy, fluttery heart, weakness, etc) but cannot find an alternative med that agrees with me either.. Limited options here in Canada.
So I guess I am asking those withy experience :
What was your type or cause of Dysautonomia and how did your doctor treat you? Did you see improvement or return to work?
I feel like my life has been spiralling downhill and my current fear is that my children will grow up before I get a chance to participate in their lives fully and healthily.
This is getting scary. Something needs to change. 8 months before I can see a specialist for this. I cannot tolerate another 6 months of struggling to breathe and funny heart symptoms.

Thanks in advance for your help.

Alyssa

[Ncsmomof2]

2 of my kids have this. Daughter has POTS and son has NCS. They are both on Florinef for this, however my son's condition is much more severe and he is also on Midodrine and Atenelol. They are both on Zoloft as well. My daughter has migraines from the Florinef and was given topamax but had an allergic reaction to that which has now set off a POTS firestorm so to speak. We push 80-100oz of water a day, 3-4mg of salt a day, no caffeine, and lots of potassium. I was told that there will be highs and lows and that my daughter should grow out of it. My son has to be on a strict schedule so his body is at a constant "norm" which will help when he has his lows. It is tough but up until the topamax reaction my daughter was very stable on the meds and diet. So there is hope. Push for a cardiologist and they usually can tell from postural pressures if that is what you have.