u/invisible-c00kie

I am worried I might have an epileptic seizure during the tilt table test.

I know it's not the end of the world but. I just really, finally want a diagnosis. My TTT is in 9 days and I'm dreading it. I'm scared that it won't show anything and that my doctors will give up on trying to figure out what's wrong with me.

Has anyone here ever had a negative tilt table test, but are still considered as having dysautonomia? What other tests can be done, if this one comes back negative?

Personally, I can't do vapes because they make my dizziness worse. But smoking weed helps SO MUCH with the dizziness. And edibles sometimes help too. How about y'all?

I've been taking about 2-3 grams of salt per day, in the form of Gatorades and TRIORAL electrolyte packets. And drinking around 100 oz of fluids (water and Gatorade) with that. That combo seems to help my dizziness, at least most days.

Woke up feeling so weak, like I couldn't lift my arms and my chest was so heavy. Anyone else deal with this? Feeling better after some electrolytes.

Been trying to get one for months, finally got it scheduled! 3 weeks from today. Now please share your horror stories with me lol, so I know what to expect!

I've been surviving on SNAP and Medicaid this year, while I've been out of work due to illness.

I have medical conditions and they still cut me off of my SNAP, starting this month. Didn't even ask for medical documentation beforehand. Just kicked me and didn't give any advice for reapplying or anything. My partner, who is on SSDI, applied to see if they would at least give some SNAP assistance to him, because we are NOT surviving and we don't know what to do except to keep applying for help.

I'm terrified that they will do the same thing to my Medicaid in January. I take five medications a day and need to be able to see my psych, cardiologist, and neurologist. I don't want to deal with the hassle of getting kicked off my insurance and having to reapply, possibly with long wait times because everyone else will also be trying to keep their Medicaid coverage. I can't find any way to submit medical documentation to my state (New York) before the rules change over in January. I really don't know what to do. Please help.

I'm considering getting one, but I'm not sure if it's really worth it for me. I mainly want to see if I am indeed having heart rate spikes with positional changes. And track my dizziness alongside these spikes. If you have Visible, what kind of information has it given you? Has it been helpful to share with your provider?

Sometimes I feel good, and that makes me feel guilty for all the help I've needed and asked for since this horrible illness started. It makes me think it's "all in my head" and that I'm just being lazy and irresponsible by taking things easy when I can.

And then I'll have a really bad day of symptoms, and I'll remember why I'm stuck asking for so much help. :(

Anyone else struggling with this? It gets so bad for me. Yesterday I stood up and just randomly started peeing.

I want to buy things to help me get through this horrible illness, but I'm poor lol

I submitted an application for SSDI. But I don't think it'll be approved because my chart doesn't have a proper diagnosis. (My doctors say I have dysautonomia, but since I/they haven't figured out what kind really, it's not actually an official diagnosis.)

I haven't been able to work since February. Everyone just keeps telling me to be responsible and go back to work, because I look fine on the outside. But I'm not fine. I really don't know what to do. I haven't been able to pay any of my bills since last year. I feel like I'm about to lose everything because of this disorder.

What are your favorite hydrating beverages?

I prefer (in this order): water, Liquid IV, Gatorade.

(Although I may have to come down on the Liquid IV, because it seems to make me dizzy sometimes? I don't know.)

Hoping it will help me rule out some types of dysautonomia, maybe even figure out which type I have.