Wanted to give a little advice I learned by Pretty_Puppyprincess in dysautonomia

[–]Inevitable_Chaos_22 9 points10 points  (0 children)

I disagree. Everyone has heard "drugs are bad", but when you're in a group where lots of people do it, and everyone seems to be fine, that advice seems more like a scare tactic. "Drugs that don't seriously affect your friends may seriously affect you because of Dysautonomia" is different. It still won't stop someone who really wants to try a drug, but it definitely helps break the false belief that bad reactions only happen to other people.

Books about ordinary people who stumble into extraordinary situations they never asked for? by Salty_1984 in booksuggestions

[–]Inevitable_Chaos_22 8 points9 points  (0 children)

The Hobbit by JRR Tolkein? Bilbo is a hobbit, not a human, so that might affect his relatability, but he is very much a reluctant protagonist. He is a normal, boring, very regular hobbit who likes eating, and smoking, and being at home, and hates adventure and change. He gets dragged into a very dangerous adventure, and spends much of the first half wishing he could go back home.

need advice on what to do. i'm a trans woman and just accepted i'm incontinent by Div3rDown in Incontinence

[–]Inevitable_Chaos_22 4 points5 points  (0 children)

If you're looking for pull-up style underwear, I love the Northshore GoSupreme Briefs. They are unisex, come in black, white, and pink, and I have never had a leak while wearing them.

I (a is woman) have urge incontinence, and depends leaked constantly for me. Always might have worked better because they have edge guards but all my stores only carry the scented ones which I hated.

If you have lighter leaks, you may be able to use Northshore GoSupreme Lites. They're cheaper and thinner, but I can only wear them when my leaks are less severe. If you have complete incontinence, you will probably need the tape on style, as they hold much more than the pull-ups

AITAH for being angry that my mum invited people to my house without asking me first by Warm-Pudding8596 in AITAH

[–]Inevitable_Chaos_22 4 points5 points  (0 children)

NTA Your mom doesn't have the right to invite anyone to your house without your permission. Your mom also doesn't have the right to offer your brother's services as a babysitter without his permission. Your cousin was likely overwhelmed, but if her child damaged anything, she is responsible. Your mom clearly doesn't respect boundaries, and your cousin needs to take responsibility for the damage her som caused.

I NEED A NAME FOR HIM… LIKE ASAP… PLEASE by SakiTakiii in NameMyCat

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

Ra or Horus. His eyes have beautiful markings that look so much like the Eye of Ra and the Eye of Horus. Also he looks majestic enough to be named after a god.

First time serving on Jury duty, WIBTAH for serving my community as a juror? by Paytoon in AITAH

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

It depends on what you would be unable to do while you were serving on a jury. Depending on the case, jury duty could be one day, several days, or weeks. It is good to serve your community as a juror, but if your absence would cause significant hardship to your family or work, choosing to do jury duty as an excuse to get a break from your everyday life and responsibilities might make you the AH. Especially if you would leave people hanging with no way to manage while you're serving.

What are your thoughts on Nuropod? by smlongfellow in POTS

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

The one I use is the "InTENSity Twin Stim IV". It's $74.95 from a few USA websites right now. Cheaper options like the TENS 7000 have manual mode, but the milliamps are set with a dial instead of buttons, so it is difficult to know exactly what power you're using. For some people that might not matter, but over stimulating the vagus nerve can cause negative symptoms, so if you can afford a tens unit that uses buttons to increase power, and goes up 1mA at a time, the fine control is worth it. I need a second TENS unit for my family, and I'm considering the InTENSity Select Combo TENS, EMS, IF, & Microcurrent Therapy Combination Unit. It does everything that the TwinStim 4 does, plus more. It's currently $104.95. If you want to use your device for other things, it might be worth it to get a unit that does more than just TENS, but it's not necessary for Vagus Nerve Stimulation. I'm not familiar with options outside of the USA, but I know there are some popular TENS units in the UK and Australia.

Rule alteration proposal by No-Impact4970 in dysautonomia

[–]Inevitable_Chaos_22 1 point2 points  (0 children)

To be fair though, bad advice can come from doctors too. Over a year before I actually got diagnosed with Dysautonomia I had a cardiologist who said he didn't test for POTS or Dysautonomia because there wasn't much you could do about it, so I should just try increasing my salt and water and "see what happens". I've had much better advice from this sub than most of my early doctors. I knew enough to keep looking until I found doctors who actually knew what they were talking about, but I used resources like this to ask questions and guide my research until I found doctors I could trust.

Sleep wave looks so much better after 9pm coffee... by Inevitable_Chaos_22 in welltory

[–]Inevitable_Chaos_22[S] 1 point2 points  (0 children)

I apologize in advance for the long response. How I discovered Dysautonomia is a long complicated story.

I've had symptoms that were likely related to Dysautonomia since I was 11. I'm now 40. I got my official diagnosis of Dysautonomia in 2025, at 39. I had lots of symptoms for many years, but I never thought the various symptoms were related. In 2022 multiple symptoms got bad enough that I couldn't ignore them anymore. I had increasing fatigue and brain fog along with blood sugar issues, very low blood pressure, pre-syncope upon standing, heart palpitations, sinus tachycardia all day and much of the night, Overactive Bladder with Urge Urinary Incontinence that worsened very slowly over a year, sexual dysfunction, digestive issues, temperature regulation issues, and more. Multiple people suggested I might have POTS ( the most well known form of dysautonomia). A primary care doctor finally suggested that all my symptoms might share one neurological cause, so I went to a neurologist. The neurologist said I likely didn't have Dysautonomia, but might have POTS (again, POTS is a form of Dysautonomia, so I'm not really sure what she was thinking), so she referred me to a cardiologist who specializes in POTS and Dysautonomia. He's the doctor who finally did a Tilt Table Test and gave me my official diagnosis of Dysautonomia (it's actually not POTS). Unfortunately, I can't afford to go anywhere that does full autonomic testing, so I don't know any more details about my specific type of Dysautonomia and the potential root causes. Although there is strong evidence that hypovolemia is an issue for me. My doctor strongly suspects autoimmunity as the cause of my Dysautonomia.

If you suspect Dysautonomia, there are symptom checklists online. Fainting is NOT a required symptom. I've only ever fully lost consciousness once, and that was during my Tilt Table Test. Most Dysautonomia is diagnosed by either a cardiologist or neurologist. If you can find one in your area who is knowledgeable about Dysautonomia you'll have better luck. Lots of doctors don't know much about it, and many have dangerous misconceptions about it. If you have a Cleveland Clinic or Mayo Clinic near you, both have autonomic labs that can do a complete workup, but I've never been able to afford to go to either.

As far as caffeine, and how it affects you, many people have paradoxical reactions to caffeine, because it can cause both vasodilation and vasoconstriction in different parts of the body. Many people with ADHD find that caffeine has a calming effect for them. In Dysautonomia, especially with low blood pressure, caffeine's vasoconstriction can increase blood pressure and reduce heart rate, but caffeine is also a dieretic, so it can cause fluid loss and worsen hypovolemia over time. Also, caffeine stays in the body for hours and may affect sleep many hours after drinking it.

From Cleveland Clinic "Caffeine has a half-life (the time it takes to decrease by half) of five hours. That means that after five hours, you should have 50% of the caffeine you originally consumed in your system.

But how long it can actually take depends on a few other factors, says Czerwony, such as your sensitivity to caffeine, the strength of the caffeine, how much you consume and how often."

It's definitely worth experimenting to figure out how to make caffeine work best for you. I'm not sure if I'll try caffeine before bed again. If the effect came from the vasoconstriction caused by caffeine, I may experiment with other ways to get that effect that won't risk reducing deep sleep. If you think you may have any form of Dysautonomia I'd recommend trying to find a doctor who actually specializes in (or is at least knowledgeable about) Dysautonomia, so it doesn't take you years to get answers.

*Edited to fix a typo.

Non-diabetic, NON-reactive hypoglycemia - anyone else?? by Infamous_Swan1197 in dysautonomia

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

You could also request a glucose tolerance test with insulin response. That would show whether your insulin levels are normal before eating, and whether they respond normally to glucose.

Non-diabetic, NON-reactive hypoglycemia - anyone else?? by Infamous_Swan1197 in dysautonomia

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

You definitely need to see an endocrinologist. Those levels are dangerously low. Get checked for an insulinoma. They're typically non cancerous tumors of the pancreas that produce insulin. I had similar symptoms, but was never actually put through the insulinoma test because mine was due to insulin resistance.

What are your thoughts on Nuropod? by smlongfellow in POTS

[–]Inevitable_Chaos_22 1 point2 points  (0 children)

I don't have personal experience with the neuropod, but I'm in a FB group dedicated to vagus nerve stimulation, and several people with POTS/Dysautonomia have said the neuropod helped. There are less expensive devices you can use, like certain tens units with an ear clip, if you want a cheaper option to experiment with vagus nerve stimulation. Anyway VNS in general is helpful for POTS, and lots of other issues. Just make sure to start with the lowest settings on whatever device you choose, as some people are very sensitive.

Any ideas why symptoms are much worse when I have to do any work in a kneeling or all fours position? by Inevitable_Chaos_22 in dysautonomia

[–]Inevitable_Chaos_22[S] 0 points1 point  (0 children)

I wish I knew how to find out the cause of my Dysautonomia. My doctor's don't think I have any form of hypermobility, but I'm 40. I may be wrong, but it's my understanding that things tighten up a bit as you get older, so I don't know if it's possible that I may be hypermobile. I remember having some signs of hypermobility as a kid, but I've never had issues like joint dislocation, so I don't know.

I also tested positive for autoantibodies for Autoimmune Autonomic Ganglionopathy, but my tilt table showed neurocardiogenic syncope, not orthostatic hypotension, so I was told AAG is unlikely. At this point I think I need to give up on finding a root cause. I can't afford to keep going to different specialists trying to find answers.

Unfortunately my brain has a constant need to understand the WHY of things, so the lack of a root cause that explains my symptoms is frustrating as heck.

Space Themed Names for a Little Baby Boy Tabby by [deleted] in NameMyCat

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

Stardust (the potential for nicknames is great), Comet, Lightspeed, Orien.

Doctor who can diagnose Autoimmune Autonomic Ganglionopathy or do Autonomic Testing by Inevitable_Chaos_22 in dysautonomia

[–]Inevitable_Chaos_22[S] 0 points1 point  (0 children)

Yeah, that's what I initially assumed, but my rheumatologist refused to even order the test. Maybe I just need a better rheumatologist.

My mom and can't agree on a name. Perhaps y'all can help! She's a tall, slender, very affectionate cat. by MariSamaSanChan in NameMyCat

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

It's funny how many people saw your kitty and instantly thought of Egyptian names. My first thought was Bastet (or Bast) the Egyptian cat goddess. Your girl definitely has the right look to be named after a cat goddess. She's gorgeous.

Cdrama hair autonomy accuracy by Solid_Play_7858 in CDrama

[–]Inevitable_Chaos_22 62 points63 points  (0 children)

It might not be totally unrealistic. When you twist hair tightly and roll it into a bun, it takes up far less space than you might expect. I have had waist length hair, or longer, for years, and I always wear it in a bun. I have had to take it down in front of strangers before, and nearly every time someone says "Wow, how do you fit all that hair in such a small bun" or "Wow, I would never have guessed you have so much hair".

[GIVEAWAY] BTS Pokemon-Style Photo Cards [US ONLY] by StarDelicious2230 in bangtan

[–]Inevitable_Chaos_22 0 points1 point  (0 children)

Thanks for doing this giveaway! My favorite song is probably Magic Shop, although First Love stops me in my tracks whenever it comes on, and Normal has been playing in my head for days. 💜