Mike

Thanks so much for all the replies. I do TRY to watch what I eat but haven't tried the high protein yet, I'll give that a try. Katy, I believe I've had that test before, I remember drinking something orange after fasting that was hard to keep down. The results came out normal but this was about 7 years ago maybe, long before they knew what was going on with me or any mention of dysautonomia. Chaos, that sounds like a good idea. I'll have to look into getting a meter, I'm curious what my levels are when feeling this way. It's always hard to tell when the NCS symptoms can be similar to other problems. Goschi, Now that you mention it I'm sure I was tested so many times during all my ER visits, hospital stays, and ambulance rides, but like I said, telling the difference between NCS symptoms and anything else can be hard, maybe sometimes one is caused by the other. Thanks again everyone!

If I go to long without eating something I get real shaky, weak, headache, and feel as if I might pass out. This can happen only two or three hours after eating, causing me to eat very often. Does anyone else ever feel this way? Or could there be any link to this with my NCS? I know I've had low blood volume and plasma levels before.

Thanks for the input guys/girls!

Well this makes me think, I'm going to have to dig out my past medical records which will not be easy cause there's a ton, but I remember years back well before they knew what was going on with me I think I had a test that showed my IGE, IGG, or something close to that was about 1200 and the doctor said 100 is normal. Would anyone know when she says "severe enough IgE mediated allergies" if it's possible that's the same IGE test?

I'm not familiar with eosinophilic esophagitis but I was diagnosed with barrett's esophagus.

I have had NCS for many years now, I have seen many doctors and tried tons of medications, nothing has worked for me yet. I was wondering if anyone has tried things like Tai Chi, yoga, or acupuncture, and if you noticed any results. I know everyone body is different and what works for one might not work for another, but I feel like I'm out of options.

Krissy you're right, when you said radioactive tracer that made me remember. I had both tests done one right after the other, I remember getting a card saying I had radioactive isotope in case I needed to prove it.

I have, if I'm remembering the right test it wasn't bad. I just sat in a chair that reclined back with feet up, so basically you're lying down, they give you an IV that they pumped something in about every 10-15 minutes I think it was and they put this large xray disk above me and took a quick xray, just had to try and sit still and maybe hold your breath for a few seconds. That was for an hour, then they sit you up, slightly reclined with your feet slightly up, almost a normal sitting position and repeat the test. I wasn't able to make it through the whole sitting down part because I was already not feeling to well, I ended up having 27% blood trans-location and something else they said I can't remember off the top of my head. It's really an easy test, nothing to get anxiety about.

It can be 68 degrees in my house and my feet and hands feel like they're in a block of ice. I can't stand it, I don't mind wearing socks around the house but I'm not wearing gloves while sitting on the couch, and there's no way I can wear socks to bed. Just bought myself an early christmas present, a nice and warm comforter, makes it hard to get out of bed when it's so warm in there lol.

YES. I take a claritin every day. When I take the claritin I'm usually fine, no itching, but if I miss a day or two I itch so bad over my entire body I almost can't function. I've had to pull my car over before because I couldn't focus on driving the itching was so bad. I was off the claritin for five days I think before I took the QSART test and it was abnormal, they wanted to repeat the test with me being off the claritin for a longer period of time before the test and I told them no, there was no way I could live a week or more with that kind of itching. The itching was nonstop all day, I could barely sleep.

This is interesting, although I'm always cautious what info I put on facebook, I don't exactly trust who they share my information with. I do hope it works out, it always helps meeting more people with similar situations, I've already learned some things about my condition on this site that I hadn't learned from any doctors.

I'm a six

I have tremors any time I'm close to passing out but don't actually pass out because I get to lie down in time. I always have all the other fun symptoms before the tremors start too, headache, nausea, lightheadedness, extreme fatigue, and so on. My whole body shakes, I always get the question "are you cold?" even if it's 90 degrees because I'm shaking so bad. You can tell when I'm doing really bad because that's the only time I get my tremors, it can last anywhere from half an hour to a few hours.

Does anyone else have memory problems? I haven't had any doctors tell me having NCS can be associated with bad memory. There are times I forget so many things or forget things really fast. I had to download a notepad app on my smartphone to write down everything and at times that isn't enough cause if my phone isn't right next to me I'll probably forget by the several seconds it takes me to get to my phone.

I haven't seen Grubb but I've seen Beverly many times. She is very nice and spends plenty of time with you. The best part is she also listens, many doctors I have seen like to tell me everything and get on their way. Beverly will let you talk and tell her everything you need to say or ask any questions you have. I would recommend writing down all your questions before the appt. because it's very easy to forget a few, trust me I know. Good Luck

I had my vitamin D levels checked and they were very low. The doctor suggested taking a 5000 IU vitamin D3 pill a day, it has helped with my energy but none of my other symptoms. I can not be in the sun for very long at a time, like seconds if it's a sunny day, it just drains me so much. I would suggest getting your levels checked before trying any vitamins, there are several different strengths, from 1,000 IU to 10,000 IU, don't want to overdo it, but that's my opinion.

I take a Claritin every day because I get so itchy, I almost couldn't function without taking the Claritin. I also get red all over my body, people are constantly asking if I scratched my face and neck, or what happened. I have Neurocardiogenic Syncope but I don't know if it's related in any way.