fighting4health

Thanks for your input everyone. It's so difficult to stay on track when I don't feel well even though that's the time I probably need it the most. I feel a lot better to know that I'm not alone on that one.

When I exercise often and stick to a healthy low sugar, high salt diet I feel so much better. One of my biggest challenges is to slow down or stop when I start feeling bad. If I push myself I pay for it later for a long time. If I rest when I should I stay pretty stable every day.

I've had symptoms all my life, but was recently diagnosed with dysautonomia with migraine. I was told to do a lot of lifestyle changes: low sugar, low fat, high salt, high fluid diet; small meals; lots of rest breaks; naps every day; yoga; strengthen abs and legs; and to avoid cardio and extreme temperatures. When I stick to the plan I still have bad days, but they are mild and infrequent compared to before. I still do dance which makes me feel better even though it's a cardio activity. I just deal with brain fog on the choreography, but do fine with everything else involved. I oftentimes have trouble sticking to the plan, especially on the bad days when I'm just like "what's the point", but that makes one bad day turn into several. Has anyone else been prescribed similar lifestyle modifications and how do you deal with staying motivated to follow them? I also have trouble with it drawing attention to my condition when I turn down cake at a party or take extra breaks. I always get questions with those kind of things and I don't want to explain it all the time. People are always surprised and confused about the high salt diet and it's frustrating that the low sugar and fat seems to make perfect sense to them because that's "just eating healthy". I get comments that indicate me being vane and trying to stay thin when I turn down pastries when I'm just trying to avoid being sick. It seems like a lot of people on the forum also try to stay low key about their symptoms. Anything you do to keep the questions away?

I saw a Stanford neurologist last year and they couldn't figure out a diagnosis, but they were prompt, and thorough. I filled 13 viles of blood for all the tests they took, but all came back negative. They did diagnose me with neuropathy which helped stumble across dysautonomia info. A few months ago I saw Dr. Yan-Go at UCLA. She's a neurologist that specializes in dysautonomia. She diagnosed me with dysautonomia. She spent a lot of time educating me on the syndrome and the lifestyle changes I needed to make. She's a character for sure, but very helpful.

I would sometimes feel like I was going down in an elevator and when I was driving I often got the feeling of surfing sideways even though I was going strait. Neurologists at Stanford referred to it as "detachment".

I work full time. My job is very active and outdoors. My symptoms are getting worse by the month and I'm afraid I'm going to have to transfer to an office job. I think having to walk all day has helped me a lot and I'm afraid it will be counterproductive to give it up. I go to UCLA in a few days to see a new specialist. I'm hoping to get a confirmed diagnosis and some treatment. More than anything I just want to know how much worse this is going to get and if treatment can reverse it.

28 years old. Female. 5'4", range between 120-140. Athletic build.

I started getting asthma-like symptoms (shortness of breath, difficulty speaking, lots of coughing) last year. I was normal on the asthma test at the doctors even though I was coughing the whole time. My doctor put me on a daily steroid inhaler (asmanex) since I had symptoms even though the test came back normal. It has made all the symptoms go away. Don't know if it's the same thing you have, but I understand how it would be the symptom you would most like to get rid of.

My appetite changes drastically causing me to either gain or lose weight for months at a time. I flip-flop between a size 0 and 8. I've dyed my brunette hair blond to hide the hair loss.

My docs wanted me on estrogen. I tried several ( 7 or 8) birth controls, but all made me sick. They suggested the Nuvaring since it is a local estrogen and doesn't go through your system. Been on it for 3 years and it hasn't made me sick once!