I found something that helps me (fingers crossed)

[TorturedSoul]

I'm a new member. I have had horrible dysautonomia symptoms dating back to childhood. I never understood my symptoms then just assumed it was normal because I felt it all the time. Anyway, this past year I really thought I was dying. I had suffocation feeling at rest and muscles that felt like jello (salt water twice a day helped this symptom). Also, I've had debilitating lightheadedness that wasn't correlated to my vitals. It was constant and felt like someone was squeezing the vessels in my neck and I was in a constant state of feeling like I was going to pass out. That symptom ruled every single day of my life and literally tortured me. I got some results that points to small fiber neuropathy but my neurologist doesn't know much about it and doesn't know how to proceed. I did a lot of research on supplements. I found that acetyl-l-carnitine was shown to help with blood flow. Also, alpha lipoid acid for small fiber neuropathy. I found a supplement that has both and I'm crossing my fingers but I'm so much better. I hope this lasts. I still have a slight feeling of lightheadedness and some days are a little worse than others but I feel a calmness in my body. A feeling like my body needed this nutrient. Like I said, I'm not normal but I really don't know what normal feels like. I can function though now and am on my feet all day. I got some helpful ideas from this forum and just wanted to pass this along. This just proves to me that metabolically we may be missing something and supplements can make us feel a lot better. I will not give on my quest for even more relief because my children are starting to experience some symptoms. I hope this helps someone. 

[CallieAndToby]

I think the supplement you mentioned is used for mitochondrial disease as well. 

[MTRJ75]

This is great news. It must be amazing to hit on something and know it's having a major positive effect. 

One of them kept coming up when I was looking into MCAS solutions (at least I think it was one of these two or something that sounds similar), but I can't remember which one. 

[TorturedSoul]

Again, it's not a cure, but definitely having a positive effect. That weakness feeling in my legs and the uncomfortable feeling of something going on in mY abdomen (I guess it was blood pooling who knows) is so much better. The lightheadedness is better but still have a feeling like my blood flow is still not right to my brain. I'd like to try arginine or a supplement that will dilate my blood vessels as I think that will help. It's crazy but when I drink alcohol the lightheaded feeling is a lot better. How odd. Is it because alcohol is a vasodilator?  My hands and feet are always cold when I'm upright so maybe I do have a problem with too much constriction. I always had a problem with flushing though on my face and upper chest even as a child so I'm just confused which is my problem.  Anyway. If anyone tries this and it helps let me know. 

[RecipeForDisaster]

Interesting! This and alpha lipoic acid have made my nighttime neuropathy flares tolerable. I don’t think it’s helped the rest of me, and I used to take it in the morning. I wonder if I need higher doses. It’s been pretty magical for no longer waking up with foot pain, though.

[Ashc]

That's great. I'm happy for you. I'm going to check this out.