Quote:
Originally Posted by Cally22
HI,
I am a 25 year old that has been suffering from autonomic and small fiber neuropathy for the last few years. I also suffer from autoimmune disorders and gastroparesis, as well as tmj. My autonomic neuropathy causes me to pass out from low blood pressure and I have injured myself so many times it is not funny. These diseases have controlled my life for too long. It is scary sometimes, as I get so dizzy and light headed I cannot even walk. I have to get IV fluid three times a week just to keep my bp up. Life has not been life for me in a long time... I am just looking for some relief. Anyone suffering like me? Anyone have any success stories... I was just starting some IV IG therapy and I got my first week of treatment and contracted aseptic meningitis... UGHHHH!!!
Mandy  |
I too have AI disease (Sjogren's & APS) with severe autonomic neuropathy, gastroparesis, and PN. The only really means of treatment for autonomic dysfunction is to treat each aspect individually. There are several meds for NMH (neurally mediated hypotension), like florinef, midodrine, high salt diet, avoiding caffeine, and always staying hydrated. Even compression stockings can help.
Gastroparesis can be managed sometimes by diet alone. Small mechanically soft meals (grind up meats) and avoiding "raw" fruits, veggies, and nuts. Also avoid eating in the evening to prevent night time symptoms and raise the head of your bed slightly (either with a wedge pillow or the frame itself). If you have significant problems still, there is domperidone (not available in the US, but very easy to get from Canada with a doctor's Rx). It is quite helpful. Stay away from Reglan as it can cause permanent movement disorders.
I have other autonomic dysfunctions: Balance, lack of temp regulation, livedo reticularis, cardiac vasospasms, difficultly urinating, etc. There are many systems that are autonomically controlled.
I also used IVIG for 11 years, then got severe aseptic meningitis in 2006, so will not get it again.
What is your autoimmune disease? What have you been doing so far in regards to treatment for both the AI and the autonomic problems?