jinglebean

That's awful. There are so many meds that do one good thing while making another worse. Some dys people are ok with vasoconstictors so they're fine with those meds, but some aren't and there are less options for us 😕

I have the exact same issue and same daily up and down symptom schedule as well. I've been diagnosed with dys for over a year now and have been tracking my sodium, potassium and fluids with no clear results. When I first started increasing my salt I had some times when I felt amazing and now I just feel crappy no matter what I do. So, no advice, but you're not alone.

I have ADHD and took stimulating drugs before my head injury that caused my dysautonomoia (or rather made it unbearable, I had mild-medium symptoms for years before but didn't know what it was). After, I can't take anything stimulating at all without my brainfog and light headedness and dizziness getting so severe I forget where I am and what I'm doing. Even caffeine makes me so like 10x worse. I did some reading on it and caffeine restricts blood flow to the brain by 30%. Most stimulants also are vasoconstrictive, and if you are having trouble getting enough blood to your brain already (what causes those cognitive symptoms in dysautonomia) then they will make it worse. Look up Cerebral Blood Flow to learn more. But yeah, I can't have any caffeine or take my ADHD meds at all anymore. Having brain fog plus ADHD makes it so hard to function most days.

I recently started Mestinon about a month and a half ago. It was amazing at first! I also have gastroparesis that hasn't responded to other medication, and it had me digesting food better than I had in decades! I could tolerate sitting up longer, especially during the day when I'm usually at my worst. My energy levels and brain fog were improved to the point I felt almost normal for parts of some days. But the effect only lasted a few weeks.... I first started with 15mg 2x/day. On the first day my stomach was actually moving and making digestive sounds, which was like an actual miracle to me. The next day the effect was less, and by the end of the first week I didn't notice it anymore. By the second week there was still a mild benefit and my doctor had wanted to increase it then anyhow. So went up to 30mg 2x/day, and this time I only felt a mild stomach movement/sounds on the first day. Now it's 3 weeks at that dose and it's not doing anything anymore. I've been back to feeling so lethargic and such bad brain fog that I can't think straight during the day, and have been back to lying on the floor unable to think if I'm sitting upright. I'm sad and feel lost again. I've looked through some of the other posts about Mestinon and of course it works for some and doesn't work for others, but I didn't see anything about it working great and then stopping abruptly. Has anyone else experienced this? Did it get better again? Did you increase the dose? What dose worked for you long term? Basically I'm asking, is there any hope for Mestinon to work again? (I'm on Florinef but it doesn't help and unable to take midodrine for other reasons. I also don't have tachy symptoms/POTs, but orthostatic hypotension and postural intolerance, so all the symptoms those.)

Hi. new. I have the same thing. Low BP all the time, even with salt, 3-4L water per day, compression stockings. I'm also light-headed a lot of the time. I noticed my BP goes down after I eat, and that's usually when I start to feel worse. It started for me after a concussion/moderate TBI early last year. Before that I had gastroparesis, and would feel crappy and tired after I ate, but I never checked my BP. Then after the concussion, it got 100x worse. It is so bad that I thought I was concussed for the past year, my doctors didn't know why it wasn't going away. But after I did a fast for a 3 days, around a month ago, because I noticed I felt worse on days where my gastroparesis was flaring, I felt FINE. Like my old self again. So now I try not to eat until later in the day, so at least I have some dizzy-free time in the day. I think it's postprandial hypotension from dysautonomia from my concussion, but my dr isn't sure. She says she doesn't know enough about it to say either way. So now I'm looking into specialists she can send me to. Oh man that was long. Anyhow, I think we have similar symptoms. Let's keep each other posted about what happens. Also wondering, do you feel worse after you eat? Have you noticed it's worse with certain types of foods? Anything that affects it?