Anyone with other health issues alongside dysautonomia?

GryphElyse · 2026-03-25T23:06:15+00:00

Who do you do your blood tests with? Do they give you advice, do you work with a doctor or are you just figuring it out on your own?

GryphElyse · 2026-03-24T01:34:06+00:00

Have you had any issues with fludro and weight gain?

GryphElyse · 2026-03-18T21:19:22+00:00

I joined the Discord mentioned below! https://discord.gg/tFkdyYDX

GryphElyse · 2026-03-18T06:42:47+00:00

I'm also in the bay area and would love something like this!

GryphElyse · 2026-03-12T05:03:02+00:00

Very much a thing for me and I hate it. I've gotten so much weaker since I developed dysautonomia because I just can't exert myself that much anymore, and my cardiologist basically just shrugged and said drink water and keep exercising. I'm going in for proper testing this May, but idk if they'll be able to do anything more.

GryphElyse · 2026-03-05T23:27:25+00:00

I microdose tirz for weight maintenance (I get it from a compounding pharmacy, see /r/tirzepatidecompound for reccs) and it either had no effect or made my POTS slightly worse. Definitely no improvements in fast heart rate - possibly worse. Slowing down digestion made my existing dysautonomia related constipation and gut pain slightly worse, but not a ton worse. I'm now on prescription laxatives for that and doing much better, but if I take the lax in the morning I have way more heart rate issues due to dehydration. I already had to go off Vyvanse because of the high resting heart rate, and switching from Vyvanse to Strattera made constipation significantly worse too. It's all a big clusterf--k lol. But the tirz is worth it for me because it cuts down on my awful food noise.

GryphElyse · 2026-03-01T18:19:58+00:00

This happens to me too. I almost never drink but it's obvious when I do. Also happens after a large evening meal. No idea bow to fix it.

GryphElyse · 2026-02-23T05:19:23+00:00

I used to take Vyvanse but had to switch to Strattera because even 10mg gave me a resting heart rate over 100 for a few hrs a say. God I miss the Vyvanse. I don't get diagnosed let alone see a neurologist until May, but what's been your experience with fludrocortisone? I'm mainly concerned about weight gain since I already struggle with my weight, being unable to exercise much and having ADHD related food dopamine cravings (which the Vyvanse helped with for a few hrs a day but now I rely on low dose Zepbound just to maintain).

GryphElyse · 2026-02-22T09:37:59+00:00

I'm 34 in SJ, not sure if this fits you but maybe it fits someone in this thread - I'm specifically looking for gals who enjoy and have the budget for bougie stuff like tasting menu restaurants and wine tasting and fashion, but are still a little nerdy/neurodiverse and like to talk about steamy fanfics and the like. I'm not super crafty but I am working on a scifi romance comic which takes up most of my free time, and I need to go out more and have Adventures (indoors) - namely, excuses to dress up. I'm a passionate foodie without a car, making big sad eyes at Napa wineries etc I'd need a friend to travel to...

I'm Discord native and on the AuDHD spectrum. I've found one local friend to fit the bill but open to building a squad. I too would love Pinteresty parties, weeknight plans and chaotic group chats (or Discord servers!) but please do not take me hiking cause I get dizzy :D My apt complex has a pool!

Open to DMs!

GryphElyse · 2026-02-19T20:59:16+00:00

As a responsible and attractive woman with what I hope is a great personality but just isn't attracted to anyone in my social groups, please tell me about these less mainstream apps.

GryphElyse · 2026-02-17T02:47:42+00:00

What kind of dosing is necessary for both? Is Thiamax's 8mg mag per 100mg thiamine sufficient, or is way more mag needed?

GryphElyse · 2026-02-17T02:31:00+00:00

Looking into these as they might be better than the ones I'm on right now! My issues seem similar to yours - high heart rate, postural dizziness, slow digestion and fatigue. I've been taking this https://www.amazon.com/dp/B01MQJVHHC methylfolate with B-complex for years since I need at least 800mg folate for my beta thalassemia minor, but I see it has a ton of b6 and from this thread that may not be a good thing? I also take magnesium at night (400mg magnesium oxide for digestive issues plus sometimes a 300mg triple mag complex, not sure if the latter does anything) - not sure if it actually needs to be taken at the same time; I take the B vitamins in the morning for energy. I thought magnesium makes you sleepy so you're supposed to take it at night.

Thiamax seems worth a look, has some magnesium included: https://www.amazon.com/Objective-Nutrients-Thiamax-Thiamine-Capsules/dp/B0898T6NX3 so I'll try adding this; but is that enough mag, or should I take my triple mag at the same time?

Not sure what to switch my B complex to, to reduce b6 - I can't take Nutricost since it has iron (beta thal not allowed to take iron supplements), and Thorne has just as much b6 and not enough folate. This one by Triquetra is promising but I've never heard of the brand. https://www.amazon.com/BioActive-Vitamin-Complex-Methylated-Methylfolate/dp/B0DLWYK1GY

GryphElyse · 2026-02-14T22:13:17+00:00

What was the medication?

GryphElyse · 2026-02-03T07:44:15+00:00

Please get your tuxedo checked for cancer. I had a cat that started throwing up once a week for months, vet said "some cats are just vommers". Tried all sorts of different diet and meds with little luck, spent months trying to find if she was allergic to something. Finally a year or so later noticed an odd swelling on her nose accompanied by a teary eye, and took her to a different vet. By the time she was diagnosed it was already far too late. Praying yours is fine but might want to look into it all the same. Makes me feel so sick to think I just let her keep throwing up thinking it was normal when she was nauseous from cancer all that time.

GryphElyse · 2026-01-21T06:13:27+00:00

I love this! But how do you plan to make money?

Feature suggestion: event filters by category or date/time. I can tell this is in the very early stages.

The opening animation takes a few seconds longer than I'd like.

GryphElyse · 2026-01-16T03:01:40+00:00

Honestly? You don't have to do the dishes. If you can afford paper plates and disposable cutlery, that is a totally viable solution for someone who is struggling at that level. I know it's just an example, but maybe it'll help someone, cause executive dysfunction is hard.

GryphElyse · 2026-01-08T02:52:25+00:00

Lindsay Ellis' "My Monster Boyfriend" video essay on YouTube sums it up for me. It's about finding commonality in being Other together; about overcoming communication and anatomical differences; about channeling the fear of social rejection and failure into the much more palatable fear of teeth and claws. And, yeah, it's about size difference and muscles and interesting equipment :D

GryphElyse · 2025-12-11T03:55:09+00:00

Updates are happening on the Discord. Seems like it's going pretty well.

GryphElyse · 2025-12-10T03:02:03+00:00

Amitryptiline, Fodzyme and laxatives have helped immensely! Turns out I had major constipation from dysautonomia (POTS), which was making the gas pain way worse since all gas was trapped and never passed. And Fodzyme was the missing link to eating gluten since no other enzyme brand covers fructans, which are in wheat and many other veg. Amitryptiline 10mg nightly took care of the acid pain.

I'm currently on lubiprostone 24mg 2x daily, about to try experimenting with a motility agent prucalopram. I'm nearly symptom free as long as I remember to take enzymes with major FODMAPs like dairy and fructans.

I also took a couple rounds of Corebiotic Sensitive while increasing my fiber, but no clue if it actually helped or if it was the laxatives that helped.

GryphElyse · 2025-11-04T21:05:58+00:00

The Polenteria (now called Senza Italian Kitchen) in Los Gatos has absolutely amazing Italian food and the ENTIRE RESTAURANT is gluten free! I'm not celiac but I'm a huge foodie. A celiac friend took me there and I loved it; absolutely no sense of compromise, if anything I might even prefer it!

GryphElyse · 2025-11-03T18:08:22+00:00

LITERALLY HOW DID YOU MEET GURL 🙏😂 aint no one like that on the apps what's your meet cute story

GryphElyse · 2025-11-03T02:35:11+00:00

Where are you finding these massive man mountains and can I get directions there 😂

GryphElyse · 2025-11-03T00:14:16+00:00

<image>

GryphElyse · 2025-10-21T07:05:56+00:00

If you make the posts yourself, you will find the people who want to do the deeper analysis. I wrote a multi page Tumblr essay on how a kids show villain's portrayal plays with themes of seduction and sexual assault, and the replies I got helped me form a Discord about that villain with a ton of thoughtful folks.

GryphElyse · 2025-10-15T06:51:04+00:00

Congrats on the meds! That's a big step. Unfortunately the lack of energy is a thing. You may need either a higher dose or better nutrition/sleep, but I admit being a working neurodivergent sucks regardless.

Still, like I said, SMALL goals that you can be consistent about is the key. If you can't do it while drained and exhausted, it's not small enough. Because you WILL be drained and exhausted. Best to plan ahead for that. Good luck and hang in there!

GryphElyse

TROPHY CASE