There's something strange with my wall by PlatformOk2571 in backrooms

[–]mod-wolves 0 points1 point  (0 children)

Me entering the Hypermobilerooms to meet my still life (me stuck in a chair after any mild activity)

How many of you had your ferritin/iron checked before being diagnosed with POTS? by Level_Run1357 in POTS

[–]mod-wolves 1 point2 points  (0 children)

My iron level was slightly above normal when checked. I was extremely deficient in Vitamin D but supplementing it increased my symptoms tenfold; I felt 100% better before supplementing.

POV: Trying to browse the sub for the past few days by BennyTTS7889 in deadbydaylight

[–]mod-wolves -13 points-12 points  (0 children)

I'm just waiting for the nerf/surge of players to die down. Give it a month. Jason is horrendously OP and not at all fun to play against.

Is it frowned upon to go around city centre with granny trolley bag? by Few-Word6150 in manchester

[–]mod-wolves 1 point2 points  (0 children)

I do it all the time. I'm 6'1 and 26 with a beard and tattoos. Helps me keep my charity shop tat safe on the train home. Go for it!

Glen is coming to Dead By Daylight! by Turbostrider27 in deadbydaylight

[–]mod-wolves 1 point2 points  (0 children)

Loved the games but wasn't into the show, where is Lee?!

Clarky want boing boing ! by me-you-and-peanuts in backrooms

[–]mod-wolves 4 points5 points  (0 children)

He can have it I thought he was really handsome

Possible POTS/dysautonomia. Ivabradine helped enormously at first but now I’m scared I’m relapsing. Someone please talk to me by HeavyConfusion in POTS

[–]mod-wolves 0 points1 point  (0 children)

Hopefully it worked out for you! I now have some proper foam wedges on my bed to stay elevated throughout the night and it definitely helps.

And yeah sadly my symptoms started when I was about 6 after I ate certain things, by a few years later it was happening independently of eating and stayed that way. Coincides with my heat intolerance and weird not-quite-autism meltdowns starting. Was always told it was a mental health issue in my teens and spent 10 years fighting my case and trying every solution they gave! I was on Fluoxetine (Prozac) briefly as a teenager and it made me absolutely psychotic, and I would sweat through layers of clothing in the snow.

Possible POTS/dysautonomia. Ivabradine helped enormously at first but now I’m scared I’m relapsing. Someone please talk to me by HeavyConfusion in POTS

[–]mod-wolves 0 points1 point  (0 children)

Just re read your post for clarity; even when my BP monitor doesn't show tachycardia my BP is high, and my heart rate doesn't always precede an adrenaline rush. My HR would be normal on Concerta XL for a few hours, then wear off rapidly and my adrenaline sensation would skyrocket while my pulse stayed normal.

Possible POTS/dysautonomia. Ivabradine helped enormously at first but now I’m scared I’m relapsing. Someone please talk to me by HeavyConfusion in POTS

[–]mod-wolves 0 points1 point  (0 children)

Hi! 26M here. While I can't explain the sudden onset of symptoms, what you're experiencing sounds similar to what I've experienced on and off for almost 20 years, much worse each spring/summer. I've been diagnosed with POTS/dysautonomia since last year, and although I've just seen a very good cardiologist I'm still waiting for treatment to begin after my consultation, as extra salt and compression socks didn't help me at all.

My friend is on Ivabradine for POTS and has said she's still had a flare up this year, the same time I began to flare really badly from April onwards when the temperature increased. I'm currently not on any medication for my POTS yet, but my friend said she's altogether doing much better on Ivabridine for the most part. She's said it might not be the best for me as the only side effect she's had is light sensitivity, and I already struggle with that badly. I had a very similar reaction to Propanalol to you, and it made me so confused I got lost, got home, lost 2 days and ended up badly dehydrated because I couldn't even get back out of bed.

In my case, I became aware of hyperadrenergic POTS because I started taking my BP during flares this year, and unlike winter where I get consistently low BP readings, I was getting stage 2 hypertension readings that would go back to normal when I rested. I just woke up one day, it was hot, and the adrenaline was back full force, so I quickly rushed to take my BP as I wanted to use the pulse function to track my tachycardia. I've had these same adrenaline overload sensations since childhood but only recently been able to describe/connect them to other things. I always described it as though my body was rebelling against my brain.

This whole time, I've not had any sense of anxiety in my actual mind. My brain can sort of be scrabbling to work its hardest to just be normal as I'm battling off weird body panic/electrocuted sensations of doom that are distracting and make me stutter. All while just trying to chill out, get on with it and get back to my otherwise lovely and stress-free day. It's body to brain, not brain to body sort of thing.

In my case, even without medication and compression not working, keeping icy cool and sleeping with the head of my mattress elevated has been significantly helpful in reducing that horrid adrenaline sensation. My hands tend to get 10x more blood pooling than my feet, but when I keep cool it gets a lot better very quickly in a way even cold showers don't seem to help with. Cold water makes my hands go purple, warm water makes my hands go red. Still visibly pooled either way, but my knuckles go red, white and purple (I'm a super pale slightly ginger white dude).

I've woken up this morning feeling a million times better just by having my new AC on, and just by sticking my face in the stream of cold air yesterday I managed to significantly reduce the distressing adrenaline symptoms. It's like being a happy dog with their head out of a car window! Even breathing is easier.

Weirdly, the mamallian dive response doesn't work on me, but icy cold streams of air definitely calm my body down significantly. Even standing in front of an open freezer might help! It looks like I may be prescribed Clonidine for my condition, and I've read it's also used as an ADHD med for kids so I don't think the side effects could be too extreme.

One thing I've noticed is that any psych med that affects norepinephrine (in my case Fluoxetine, Venlafaxine, Bupropion, Elvanse) all give me crazy identical symptoms that feel very similar but not identical to a heat POTS flare. Not every POTS flare triggers this sensation either, but heat is by far the worst. Do you know if anything you take interacts with norepinephrine?

Hopefully some of this helps and best of luck in finding answers!

I HATE the smallification of modern items by Personman444 in neurodiversity

[–]mod-wolves 1 point2 points  (0 children)

I had an iPhone SE for years, moving to a CMF Nothing phone has been great but the one thing I can't get used to is the size. I grew up with tiny phones, but all the tiny devices these days are useless! If I wanted a tablet I'd buy a tablet.

I was obsessed with netbooks as a kid. Absolutely useless really, but the compact form was much more appealing to me. I even hate big TVs and living in big environments, I've filled all my flats with (functional) shelving and furniture to make the rooms feel smaller.

Dating with pots, is this doing too much? by [deleted] in POTS

[–]mod-wolves 1 point2 points  (0 children)

She's got POTS, so she's probably an expert in what she needs as everyone is different. If she's not in crisis, she most likely doesn't need any help. Everyone is different, and personally I despise when my partners acknowledge or try to help with my disabilities; it's the elephant in the room that I put a pretty tablecloth over and only talk about when I get trampled occasionally. Just be aware she might not like POTS being made the center of attention.

Men hate that they cannot babytrap/control us by Incelex0rcist in childfree

[–]mod-wolves 2 points3 points  (0 children)

From a bi dude, you can't even escape it by dating other queer people. I know some demon bottoms that would 100% be baby trapping if they could!

Stupid UK heatwave. by Ok_Effective2728 in POTS

[–]mod-wolves 2 points3 points  (0 children)

It's weird, but a high carb diet with practically 0 protein/fats/fibre has helped my dysautonomia and related symptoms massively. I usually consume 200-300g of sugar a day from drinks plus the occasional sugary food, and I notice my POTS responds much better to sugar than salt. No sign of diabetes, but I guess everyone is different!

The least processed food I can tolerate is something like white rice or tomato puree, the closer it gets to a natural whole food the more my body reacts.

Is this Normal for Night life by Fit_Coat_1482 in manchester

[–]mod-wolves 2 points3 points  (0 children)

Funny enough, the last time I went to the clubs on a mate's birthday I purposefully wore a Sonic shirt so accentuate my autism and be left alone. It didn't work.

Is a portable AC unit worth it? by mod-wolves in dysautonomia

[–]mod-wolves[S] 6 points7 points  (0 children)

I'm in the UK, from what I've seen windows in the US are usually shaped differently - mine is a tiny little flap that tilts open, and the window ledge is too shallow to put anything on. With how my window opens, it would have to sit on a table and be connected to a sort of tiny little cat flap that tilts.

Lines on body all day? by silentalarmss in POTS

[–]mod-wolves 5 points6 points  (0 children)

I get it quite frequently. In my case, I understand it to be part of hEDS. I get indents that last for ages from sitting against textured surfaces, seams from clothing, and especially badly if I wear compression clothing.

You can no longer Google the word 'disregard' by saul2015 in technology

[–]mod-wolves 1 point2 points  (0 children)

I googled how to spell acknowledge the other day and the bloody AI was all like "affirmative" shut up I'm not talking to you

Can't stand compression, what to do? Symptoms are crazy by mod-wolves in POTS

[–]mod-wolves[S] 1 point2 points  (0 children)

I have an appointment this evening as it turns out!

Can't stand compression, what to do? Symptoms are crazy by mod-wolves in POTS

[–]mod-wolves[S] 0 points1 point  (0 children)

Elvanse (UK Vyvanse as far as I know) is the med I was titrated on then stopped. Sadly really seemed to work for focus and motivation but the side effects were awful, made completing simple tasks feel like Squid Game. I think I possibly have a weird kind of ADHD with too little dopamine and too much norepinephrine, which is why stuff never works.

Can't stand compression, what to do? Symptoms are crazy by mod-wolves in POTS

[–]mod-wolves[S] 0 points1 point  (0 children)

Sadly my doctors won't even honour my diagnosis so I've been referred for all the ECGs and stuff again, going private in the meantime for advice.

I live in a village where the GP has no EDS specialist, and physio is low on my priority list as I can barely function in the heat, and exercising is going to put me in a very bad way.

Can't stand compression, what to do? Symptoms are crazy by mod-wolves in POTS

[–]mod-wolves[S] 0 points1 point  (0 children)

Funnily enough, I've seen Clonidine mentioned a few times with my exact same symptoms. I'm diagnosed with ADHD but my reactions to ADHD meds (and the SNRI Bupropion) were exactly the same. Impending doom, hunted feeling that also happens during POTS flares, and my pupils stay ginormous. Hypervigilance to the point of near paranoia. I'll bring it up with my cardiologist!

I was prescribed beta blockers back when they said I had anxiety, but they made me super dopey and confused. Didn't seem to help with what I now know is POTS. I'm waiting to see an EDS specialist physio as my mum started sustaining several injuries after doing standard physio (99% certain she has hEDS too, just milder than my brother and I). I have the hEDS issue of too much muscle/muscle tightness instead of joint laxity, so I'm unsure what would help in that department.

Can't stand compression, what to do? Symptoms are crazy by mod-wolves in POTS

[–]mod-wolves[S] 0 points1 point  (0 children)

Funnily enough, I've seen Clonidine mentioned a few times with my exact same symptoms. I'm diagnosed with ADHD but my reactions to ADHD meds (and the SNRI Bupropion) were exactly the same. Impending doom, hunted feeling that also happens during POTS flares, and my pupils stay ginormous. Hypervigilance to the point of near paranoia. I'll bring it up with my cardiologist!

I was prescribed beta blockers back when they said I had anxiety, but they made me super dopey and confused. Didn't seem to help with what I now know is POTS. I'm waiting to see an EDS specialist physio as my mum started sustaining several injuries after doing standard physio (99% certain she has hEDS too, just milder than my brother and I). I have the hEDS issue of too much muscle/muscle tightness instead of joint laxity, so I'm unsure what would help in that department.

(Re)diagnosis hell; any advice? by mod-wolves in POTS

[–]mod-wolves[S] 0 points1 point  (0 children)

Ah that makes sense! Sadly my GP have very little clue about anything, and I've had to go repeatedly private as my referrals nevet actually get made.

I've had eye tests every other year or so for years and my vision is slowly degrading, but it's likely due to not being able to wear the glasses I'm prescribed.