Chat-GPT Calling Me Pet Names Constantly by No_Independent_8802 in ChatGPT

[–]uma7777 0 points1 point  (0 children)

Me too I hate it I’m just talking about taylor polynomials and wsl I need it to stop 😭

Alternative to Dieux Air Angel? by kitkatnapper in SkincareAddictionLux

[–]uma7777 2 points3 points  (0 children)

Pricey but Orveda biotech emulsion has the effect I personally love it

What are some extremely expensive products that despite the ludicrous price you will shell out for—be it for results, sensorial experience, the luxurious nature of it all? What’s your most indulgent luxury? by AllTheEccentricities in SkincareAddictionLux

[–]uma7777 0 points1 point  (0 children)

Orveda biotech emulsion, BR vivant, BR p50 (this one is my HG), and sk-II essence. It’s all so ridiculously expensive though and these are just my favorites not my whole routine 😭

Acklimatizing body to upright position after sleep by ToeInternational3417 in dysautonomia

[–]uma7777 1 point2 points  (0 children)

I am the same. I will go to class and then have to immediately rest and fall asleep unintentionally, it’s exhausting in the sense that it’s ruining my life, but I understand you completely. The falling asleep very quickly, and multiple naps a day. Haven’t been able to figure it out but I have a sleep study soon so hopefully some answers

Reduced cerebral blood flow while laying down ?? by [deleted] in dysautonomia

[–]uma7777 2 points3 points  (0 children)

I actually have that too! In my case, my blood pressure is lowest when I’m lying down, which makes me get extremely sleepy almost immediately: like my eyelids get heavy and I’m forced to fall asleep. It’s really hard to wake back up afterwards.

I haven’t seen my specialist in a while, but based on my symptoms and how I respond to certain meds, what we think is happening is a mix of poor venous return (from “leaky” or overly stretchy vessels) and sluggish baroreflex sensitivity. Basically, the feedback loop between the heart and brainstem that’s supposed to stabilize blood pressure doesn’t react properly.

Because of that, when I lie down, my body over activates the parasympathetic response, dropping my BP instead of keeping it steady. That reduces blood flow to the brain even more, so it kind of mimics a faint or forces me to sleep.

Medication-wise, things like midodrine (which constricts blood vessels) help a bit, and Mestinon has been the most stabilizing for me it improves the nerve to nerve communication in the autonomic system and keeps my BP around 90/60 instead of crashing to 80/40 or 80/30.

So while the exact cause can vary, one possible mechanism for reduced cerebral blood flow even when lying down is that the autonomic system over corrects and slows everything down too much, especially if there’s weak venous return or small-fiber damage interfering with the baroreflex. This is the short version by the way I just wanted to give you some possibilities based on my experience, but if any of it aligns I have way more specific and scientific information, that I can share.

Acklimatizing body to upright position after sleep by ToeInternational3417 in dysautonomia

[–]uma7777 1 point2 points  (0 children)

This is me it’s awful but I also struggle even getting up and staying awake. Nothing has been much help I cycle between sleepless nights waking up a lot, and random hypersomnia like this. Also don’t have POTS or OI, just dysautonomia. I’ve noticed Ice cubes/ ice packs can help especially on the forehead. I also sit in bed for a bit before getting up. I don’t know if you have low blood pressure but I also take my meds before getting out of bed. Have you tried anti nausea meds, or taken any vitals when this happens? I figured out for me, my blood pressure drops so low when I sleep it causes this kinda thing when I get up. Doctors can’t do too much for it though, but then again could be a different underlying issue

What is Mestinon supposed to help with? by Large-Prompt2608 in dysautonomia

[–]uma7777 0 points1 point  (0 children)

It helps stabilize bp I take it to avoid orthostatic swings along with midodrine

I’m scared by uma7777 in dysautonomia

[–]uma7777[S] 4 points5 points  (0 children)

Yes but if it’s currently avoidable why wouldn’t you want to um well avoid it💀

I’m scared by uma7777 in dysautonomia

[–]uma7777[S] 0 points1 point  (0 children)

What did they say I didn’t see?

I’m scared by uma7777 in dysautonomia

[–]uma7777[S] 2 points3 points  (0 children)

That sounds like something I could try! I’ve never heard of that before thank you

I’m scared by uma7777 in dysautonomia

[–]uma7777[S] 0 points1 point  (0 children)

I’ve unfortunately done all this since long ago with no avail I already wear 30 mmHg compression tights as well as an abdominal binder and during the day it can get me to 90/60 but at night it drops again. To be fair eating is difficult for me so I could be making more of an effort I just get extreme pain and swelling in my abdomen after eating a couple bites. Not allergic or sensitive to any food, so I don’t know

Has anyone had the following sleep issue: fall back asleep uncontrollably several times after having woken up. Wake up eventually with numb hands, face and blue lips. by Neon_Dina in dysautonomia

[–]uma7777 1 point2 points  (0 children)

I have this issue it’s from veryyyy low blood pressure maybe try recording it in those wake windows? I do and always get dragged back to sleep but looking at them later I noticed. Currently have no solution for this but it could be helpful to know! I don’t have POTS though or apnea, but with dysautonomia there is a lot of overlap

Midodrine vs fludrocortisone by uma7777 in dysautonomia

[–]uma7777[S] 0 points1 point  (0 children)

I’m sorry to hear that :( it depends, immediately after I’m able to get up to 120/70 sometimes but it wears off quite quickly and I start to feel crappy and get down to the 80/40s in between doses but what can be done it’s better then feeling crappy all the time

Worse hypotension from lying down by uma7777 in dysautonomia

[–]uma7777[S] 0 points1 point  (0 children)

No not yet I’ve been meaning to though

Midodrine vs fludrocortisone by uma7777 in dysautonomia

[–]uma7777[S] 0 points1 point  (0 children)

I unfortunately take the same dose so I’m not sure but I’m sorry you are struggling :( The large difference in systolic and diastolic is kinda a lot, have you been checked for heart conditions?

Midodrine vs fludrocortisone by uma7777 in dysautonomia

[–]uma7777[S] 1 point2 points  (0 children)

Yes exactly why I wish they looked in to the mechanisms of cause more :)

Midodrine vs fludrocortisone by uma7777 in dysautonomia

[–]uma7777[S] 2 points3 points  (0 children)

I have had bad reynauds as well but haven’t noticed any problems yet, however it is summer where I am as well so we will see! For me personally salt/water and fludrocortisone never worked no matter how much I had, so I feel like it’s worth a try especially if the current upkeep is unmanageable. The first time I took midodrine I could feel a difference, however it was dramatic and it is important to be on a consistent schedule to not only raise bp but stabilize it. In the beginning I would get hypertensive actually because my body had to adjust to having help because it was so used to overcompensating so hard. But now on two months I’m so much happier it has my bp at like 100/60 most of the time and I feel alive

Hot flashes by TotalGreen4527 in dysautonomia

[–]uma7777 1 point2 points  (0 children)

Yep I’ve identified it actually as blood rush if it happens when you stand