I’m up to drinking them all day everyday and wake up at night to drink more. I was putting salt in my water and having a plain water in between, but that stopped cutting it.
I’m interested in hearing from those of you who have found a sweet spot in life and how you’ve achieved it. I’m served up all different types of dysautonomia videos on all the socials, and they vary from, “this is your life now” to “with time, treatment, and specific exercises, you can have a life like mine.” I read a lot of doom and gloom here, which I’m grateful for because it helps me not feel so alone during the hard days, but I’m curious about that ‘greener green.’
Has anyone found treatment and lifestyle changes that have allowed you to live a somewhat balanced life with minimal symptoms?
Has anyone seen any of the current buzz about GLP-1 helping with symptoms? If you have, I’d love to hear your take. If you’ve tried it and it worked, I’d love to hear that too!
Has anyone used these products? If so, which product, what were you tracking for, was it helpful, and how did you use the results?
I wrote this in response to someone’s post about boredom. Writing it was therapeutic in many ways, metabolizing the grief that comes with this condition, being creative, and giggling at the last line. Hope someone enjoys…
I have been where it sounds like you are right now.
I was so frustrated that I didn’t have the strength to do the things I once loved; painting, crafting for friends and family, dancing, skating, hell…even walking. I was miserable, and although I loved to Netflix binge, felt like I’d have to throw the remote into the tv if I had to find yet another show to watch. I honestly realized that I didn’t know how to relax, so I made myself. I made myself just sit with nothing to do. At first, I wept from the pain I couldn’t distract from, then I wrote poetry about the pain. After I while, I got used to relaxing and enjoyed the quiet. Recently, I found my mind starting to spin like it used to. Rather than trying to fight the constant need to plan, prepare, try to solve a problem, or worse, piddle and risk a crash; I redirected my mental energy to sudoku and word searches. Just a couple of weeks ago, a family member suddenly passed away and I desperately wanted to make something to remember him by. I knew I couldn’t go as big as my old craft projects, so I picked up a box through Target pick up and hand painted some words on it and wrote a poem to read at the funeral. (My husband picked up the Target order.) Those small projects allowed me to sit still, paint and write. Which reminded me how much I like to paint and make things for people, so I order a modern calligraphy workbook. I’ll probably sit in bed in the evenings and practice until another loved one gives me an opportunity to make something special.
It’s been unbearable at times, but time passed, and I found my way back to the things I love. I know it may get unbearable again, I’ll probably get frustrated and weep, but this time I’ll try to remember, “If You Give a Girl Dysautonomia, She’ll Probably Ask for Some Paint to Go with It.”
So curious if anyone has had any luck or experience with it? Not delta, not THC. Just CBD.
I’ve been suffering and pursuing a diagnosis for 2 years. Many of my symptoms I’ve had most of my life but they became difficult to manage about 4-5 years ago. It wasn’t until the beginning of 2025 that I found dysautonomia and started putting the pieces together. I have finally gotten my Dr to start taking me seriously by asking questions (in writing) like, “are you refusing the referral?” Last year, I saw many specialists including allergist, GI specialist, rheumatologist. Even my routine eye exam revealed some complications. I now have an appointment with cardiologist and referral to neurologist (both required by the nearest dysautonomia clinic). All that to say, my headaches/migraines have become unmanageable and I’m miserable most of the time. I quit my last job because the stress would send me into flares. I recently started a new job and the stress is getting to me. All I’ve ever known, and dedicated my adult life to, is being a sophisticated professional. And I have a constant feeling that I “can’t keep up.” Literally, going to work is all I have in me. My husband makes all the contributions to the fiction of our household, laundry, house keeping, grocery shopping, etc. And I can barely make it to family functions without sending me into a flare, which in all honesty is kind of a blessing in disguise with my dysfunctional family. However, I feel it is putting a strain on my relationships with my husband’s side because they don’t know fully what’s going on nor can they understand the brief explanations my husband gives them. All that to ask, how do you hold a full time job? This is something I don’t see much of in my research. Begging for some insight before I quit another job or worse, lose this one.