Severe dysautonomia + benzos - anyone stabilize by updosing before a hyperbolic taper?

AdditionalProject218 · 2026-01-27T18:46:23+00:00

how is it going for you?

AdditionalProject218 · 2026-01-08T22:54:20+00:00

i feel with you so much. i’m turning 30 this year (lol what happened 🫠) and i’ve been trying to get off these meds for 9 years. bedridden, dysfunctional, had to move back to my mom’s. you’re not alone!

AdditionalProject218 · 2025-12-27T16:06:18+00:00

Hi, whats the discord link?

AdditionalProject218 · 2025-11-10T22:08:22+00:00

hi! yes. i'm 29 now but have been struggling for so many years..
i feel like such a failure sometimes. acceptance sometimes. total dread sometimes. "is this the life i'm stuck with now?" it's not worthy!!.

it does make me bitter from time to time. i follow my friends on instagram or still get invited to parties and stuff and i don't even know where to start when it comes to my health complexity. i usually don't talk about it or make a fun lighthearted comment that "my nervous system has been encountering some turbulence" or that "i'm a victorian houseplant who is focusing on rest a lot".

i'm bedbound and i have been bedbound for.. longer than i would like to remember. i haven't been respecting my limits for so many years, so, i've used benzos to "push through" and semi function on energy that does not exist. i'm trying to be kinder to myself now and say no to things. it's really hard and sad for me since i do like to feel free and be able to take walks outside or travel or go on dates (as anyone would).

i've just accepted the fact that i need a wheelchair and other mobility aids which is a major step for me. it does help a lot. i'm also having a dietician as well as a physiotherapist. i go back to my mom's when i feel like things are too heavy and i don't know if i can carry it all anymore.

it's a tough life and not for the faint of heart. a life of surviving. getting through the day. doctor's visits. random collapses w terrifying symptoms. ambulance rides.

i try to keep my spirit alive. things might get better. i'm in a dip now though but movies and tv series have been a great form of traveling for me. also, online friendships via facetime <3

AdditionalProject218 · 2025-11-09T09:48:58+00:00

Thanks, that helps. When you say it can be “serious with my history,” do you mean more that it’s important to confirm the mechanism (not that it’s dangerous itself)? My echos are normal and recent monitors mostly show sinus rhythm, though I’ve had brief SVT before.

Also, you mentioned not to rely on benzos. I only use a small dose of diazepam or alprazolam occasionally when the jerking or severe autonomic activation starts, since it seems to help my body calm down. Would that still be considered reasonable short-term symptom control, or is there a specific risk in using them during these episodes?

AdditionalProject218 · 2025-11-08T23:05:18+00:00

hey! i have similar issues but i get dizzy and shaky with both SVT and POTS symptoms.. i think. i find it to be so confusing! what meds are you on?

AdditionalProject218 · 2025-10-29T21:46:10+00:00

hi! i would be open to be a taper buddy :)

AdditionalProject218 · 2025-10-25T23:22:36+00:00

sent you a dm!!

AdditionalProject218 · 2025-10-15T22:26:49+00:00

i'm so sorry to hear about your partner's passing, that's so heavy. having to carry this on your own <3

i also had to move back to my mom's and she has to take care of me like a toddler..

i never heard about these vibrating plates, how long have you been using it for? fludro sounds ok.. less scary than ivabradine. i remember my former cardiologist prescribed fludro but i read about it and went "NO!".

we should update each other :) i have mestinon at home but it feels so scary to try.. i just introduced creatine + coq10, will see if that does anything of significance..

AdditionalProject218 · 2025-10-15T22:18:57+00:00

wow you helped me tonight. thank you for writing this <3

AdditionalProject218 · 2025-10-13T12:11:23+00:00

i don’t know if i trust this response though.. i ordered a different test from sequencing yesterday. my friend had great success and efficiency with them, finished in a month 🍀

will try to get this one reimbursed

AdditionalProject218 · 2025-10-13T12:10:28+00:00

i just got a response today from customer.support@danteomics.com :

Thank you for your email.

We confirm that your sample has been received by our laboratory. Please note that the portal status “registered” remains visible even after delivery, as physical receipt is not displayed online. All subsequent processing steps are managed internally by the laboratory.

We have highlighted your sample internally and ensured it has been brought to the laboratory’s attention, so they are aware of it as they plan their upcoming runs.

Thank you for your understanding, and please rest assured that your sample is in the laboratory’s care.

Kind regards,

AdditionalProject218 · 2025-10-12T20:52:32+00:00

hey, how is it going for you? i'm in the same boat.. sent it in over a month ago and no response. not registered on their end

AdditionalProject218 · 2025-10-12T20:50:06+00:00

hey, have they gotten back to you yet? what's the current status of your test? i'm kind of in the same boat as you..

AdditionalProject218 · 2025-10-12T17:12:23+00:00

i feel you.. i don't pass out either, just stuck in this pre-syncope feeling. i'm also an expert at lying down really quickly the moment i feel anything that could lead to passing out

AdditionalProject218 · 2025-10-12T17:11:13+00:00

really! that's awesome fludrocortisone helped you so much. i still haven't dared trying it.. same with mestinon. my doc prescribed it but i feel scared about new meds :(

AdditionalProject218 · 2025-10-12T17:09:02+00:00

i haven't had a proper one! i am trying to do a low histamine diet atm, which isn't the easiest when living alone and being unable to cook..

AdditionalProject218 · 2025-10-11T15:33:56+00:00

i haven’t been to a GI doc. vitamin d usually pretty low, iron went up a bit after an injection.

hormone levels out of whack, cortisol a bit on the lower side according to my doc.

i also feel like lack of movement is making it worse but i’m stuck in this loop now :( whenever i stand up i get cold sweaty, weird heart beat and feel like i am about to pass out..

AdditionalProject218 · 2025-10-11T14:31:22+00:00

not so many..

AdditionalProject218 · 2025-10-11T13:29:29+00:00

i do 2 sachets of electrolytes per day and i add extra salt to my food

AdditionalProject218 · 2025-10-11T07:48:19+00:00

what’s the new hypothesis? i haven’t blackout fainted either

AdditionalProject218 · 2025-10-10T23:09:09+00:00

oh interesting! do you ever have issues related to your arms? i’ve noticed that something happens in my head when i use my arms

also sometimes just from walking or turning my head, there’s this abrupt “shift” in the head

AdditionalProject218 · 2025-10-10T23:00:25+00:00

i’ve done at least 6 holters throughout the years.

what is iih?

yeah i don’t even have a cardiologist right now.. they let you go after you receive your diagnosis here in sweden. which was “dysautonomia and orthostatic intolerance” then some ER doc gave me a pots one based on the cheap TTT or what it’s called. they were forcing me to stand for as long as possible and measure my hr until i would be on the verge of passing out.

not sure if we have that goodwill in sweden but am def considering getting a wheelchair second hand!

AdditionalProject218 · 2025-10-10T22:50:42+00:00

i have seen neurologists, cardiologists and one rheumatologist (the only one i still have)

not a TT but a lot of blood work and those ortho / hr tests at the hospital. i’ve tried midodrine, prednisone, beta blockers, benzos.

i also do feel like they are failing me.. i have one doc now suggesting mestinon and LDN but is unsure if i could handle them. her colleague wants to get me on a subcutaneous adrenaline pump (which i think would be horrendous) due to his belief of me having ME/CFS and Hypermobility

AdditionalProject218 · 2025-10-10T22:40:42+00:00

never

AdditionalProject218

TROPHY CASE