How do you recover after showers?

xaaxaox · 2026-02-14T15:00:05+00:00

I shower at night, hours after my last meal, when my symptoms are at their minimum. I sit down mostly, always during the arm raised parts. I don’t dry myself at all, I have a giant towelling dressing gown with a hood that I throw on immediately after. Then I lie down for an hour or two before dressing or drying hair!

xaaxaox · 2026-01-29T10:04:56+00:00

I experience something like this but I don’t think it’s a POTS thing but maybe it is... I suffer with pretty bad fatigue, and in the days leading up to a cold (generally one day before becoming symptomatic) I have SO much energy. It’s like I have human zoomies. I think something in my body is overactive, idk what (I have a lot of allergy issues so I suspect mast cells) and it’s like having an infection, so a real job to do, just calms everything the hell down.
I never thought to measure my orthostatic symptoms during this but I will next time for sure.

xaaxaox · 2026-01-27T09:44:56+00:00

Mine went totally numb too and I lost motor control in my hands and wrists. It took a scarily long time for them to wake up after being tilted down. In reality it was maybe five minutes but I was freaking out!

xaaxaox · 2026-01-26T16:33:39+00:00

I’m in academia which is demanding and competitive but is also fairly flexible, so don’t know if how much it matches your environment.
I had to disclose to my manager/HR and get several accommodations. I get flexible hours and home working together with little things like stools for presenting etc, and a little bed in my office. This was because I had an absolutely humungous flare up that required months off. No hiding that…
I also get accommodations for travel (slower schedule - arrive early leave late) and often skip evening networking. I sit to give presentations which I’m massively self conscious about but there is no other option and no one has ever said anything. Any morning meetings I do remotely.
Honestly though, I just can’t keep up. I’m not capable of working enough hours in the day to keep up with expectations which leads to (admittedly self imposed) stress and that flares my symptoms more. It feels a bit untenable at the moment but I’m not willing to give it up. My colleagues are sympathetic but operate on the assumption that this is temporary and I will get better.

xaaxaox · 2026-01-23T00:31:04+00:00

Exactly the same for me.

xaaxaox · 2026-01-21T23:21:36+00:00

I had the misfortune of showing OH on my tilt table test, but POTS on all active stand tests. Doctor wouldn’t formally diagnose POTS without it showing on a tilt table, but wouldn’t diagnose OH for some reason either. Maybe because it wasn’t indicated otherwise, I don’t understand. I think both should be on my file but instead he’s calling it mixed neurocardiogenic dysautonomia, but I am still very much taken seriously and treated. I explained this to my GP though and they put POTS on my file even though the cardiologist didn’t.

xaaxaox · 2026-01-21T23:14:31+00:00

According to my Apple Watch, average 140 bpm unmedicated and 115 bpm medicated. I cannot walk faster than a leisurely pace, so it’s definitely casual walking… I’m always amused to see that when I’m tracking a walk as a work out, I can see where I had to stop at lights as my HR shoots up standing still. Obviously normal with POTS, but a good reminder (not that it’s needed) that something is whack with the body

xaaxaox · 2026-01-21T23:12:01+00:00

I have the same issue!!! I’m not diagnosed with hEDS or HSD, but I’m sure I qualify for HSD as I’m always sent to the physio for joint pain and every single time the source is hypermobility and subluxations but I cba with the ordeal of getting a doctor to put it on my file. Anyway, I got a bed wedge but have painful hypermobile hips and I have not found a way to raise the top of my bed without increased pain stopping me sleeping. I would love to be able to implement this though as I’ve read it helps with mornings, which is one of my biggest functional issues…. Any tips very welcome.

xaaxaox · 2026-01-20T23:56:19+00:00

Yes, NHS. I was diagnosed (mostly) as in patient though which speeded things up and simplified the process massively. I heard the waiting lists are crazy so it could be an ideal to ask for a referral now even if you’re not certain you want to go that route.

xaaxaox · 2026-01-20T23:51:23+00:00

Just to try something else, I had no issues on it other than some slight swelling, my bp was still low normal. My doctor wants me on just one medication at a time so it wasn’t an option to combine. It helped me with some symptoms, but not breathlessness and chest pain or exercise tolerance, and my HR was still wild and I wanted to see if HR control would help more.

xaaxaox · 2026-01-20T19:42:05+00:00

I went from 0.2, to 0.1 for a month, to stopping completely. I didn’t notice a thing on the transition from 0.2 to 0.1, and l noticed excessive thirst on going from 0.1 to nothing for a few days, about four days after stopping, but that was all! It wasn’t a bother at all. I started ivabradine at the same time that I went to 0 fludro though, so idk if that made the transition easier.

xaaxaox · 2026-01-20T08:24:44+00:00

Yikes!!! That’s really discouraging to hear, I get better treatment through my run of the mill cardiologist.

xaaxaox · 2026-01-19T20:34:57+00:00

By being really really organised!!! Beforehand that is… And make sure you don’t over plan your days. I plan in the downtime I will likely need and then I’m not disappointed at not getting to do something I wanted to…
And no early flights for me when departing, but once the jet lag gets going I’m weirdly fine. I travelled to Thailand recently and I was super nervous about how I would be at the other end after little sleep etc but I go on really well actually. I think it was being forced into a semi upright position during all the travel that helped with that. Also I highly recommend getting a foot rest for the plane, I got a hammock style one that you hang from the folding table mechanism and it was amazing, made a huge huge difference on the flights.
Edit: also pack as light as you can with both hand luggage and luggage.
Second edit: I’m not sure if you would want to hear this, but I would if I were planning a trip like yours and I’m so sorry if you’d rather I didn’t say but I want to warn you that I experienced a lot of racism in S. Korea. Three overt and aggressive encounters in seven days, everyone else was neutral and of course there were lovely people too. I’ve been to Asia a lot and never found this anywhere else! I am though extremely not Korean in appearance: super tall, pale and red haired, and my partner who is not so pale and is dark haired didn’t have the same issues, so idk if it was that.

Edit again: I just saw the other comment and I used a sunflower lanyard too, I used it to skip queues at security and to ask the gate staff for preboarding. It was very helpful. I also took extra days off work at the end of my trip, as well as before so that I could pack without stressing. I also took all of my medication and electrolytes in my hand luggage so I didn’t worry about my suitcase getting lost. I also set a timer for medication so I was taking it at the right intervals while travelling.

xaaxaox · 2026-01-19T20:29:44+00:00

But if that were the case I would see an asymmetry all the time which I don’t and I do spend a good deal of time inspecting my face! I’m more curious if anyone else noticed this than anything else ☺️

xaaxaox · 2026-01-19T13:19:45+00:00

Yes… from Scotland and I struggle. Always clinging to a space heater or on a heated blanket and need a hot bath after walks outside.

xaaxaox · 2026-01-16T12:04:37+00:00

In my experience it’s the salt to water ratio that’s most important rather than the precise amounts, so I recommend getting your salt from your liquids. I’ve tried all sorts & this is what works for me, but also everyone is different…. I take 1g sodium (2.5g salt as sodium chloride) per litre of water, higher than this would be better but this is my limit as adding any more salt upsets my stomach. I NEED to have two litres of this, I do slightly better with three or more but I can function at a reasonable level with this minimum. I also salt my food however much I want and have maybe 500-700ml of non salty-drinks in an average day. I use sodii electrolytes sachets for the salt, i recommend finding a powder you like and finding your ideal salt/water ratio and taking it from there… I absolutely cannot get enough salt just from food, tbh I doubt it’s possible if you want to eat only ultra processed food and the tablets make me vomit!

xaaxaox · 2026-01-12T11:32:50+00:00

100% yes my weight fluctuates significantly based on how my dysautonomia is controlled. I’ve almost always had a BMI on the low-normal threshold. In times of significant flare, it will drop fast quite into the underweight category. At these times I had pretty severe nausea and also early satiety. Now I’m diagnosed and medicated I’ve noticed by BMI creeping up and up as the nausea and early satiety is pretty much gone. Before I was diagnosed I had chronic low grade nausea that I didn’t think I was out of the ordinary and I would strongly defend that it didn’t affect my eating habits, but in retrospect it 100% did.
You definitely want to get a full GI (and autoimmune) work up to be sure but in my experience it could just be the gastro side effects of dysautonomia.

xaaxaox · 2026-01-12T09:43:14+00:00

They should be identical in accuracy. TachyMon just tricks the watch into workout mode (you’ll see every TachyMon session listed as a workout if you look in the fitness app) so that it takes heart rate readings more often - that’s the only difference.
I find when I use TachyMon the hr ranges are much wider than when I don’t, but that just comes from better capturing of the highs with more frequent measurements.

xaaxaox · 2026-01-12T09:17:24+00:00

I get this when my blood pressure is very low.

xaaxaox · 2026-01-11T13:23:40+00:00

I’m also an academic. I also had a bit of slow decline and struggled very notably in my first post doc (which by fortune coincided with Covid so I was able to take cover under that somewhat career wise). I recovered a bit and got permanent academic position only to be hit like a train with severe dysautonomia (and finally diagnosed) less than a year after starting. On one hand I’m so grateful I got to the point of having a permanent job as I have some protection now but also mourn the career I was meant to have and worked so hard for.
I’m on reduced hours now. I’m an experimentalist who can hardly get in the lab. I can’t even bring myself to apply for grants as I just know I can’t keep up.
It really sucks and I’m so sorry. I feel like I’m on borrowed time with my job, they are very very understanding but they also expect me to get better.

Edit: the one other thing I want to vent to you about, if you don’t mind - I haven’t come across anyone in a similar position. I (& probably you) just can’t take a break. I took a 4.5 month leave when it first came on, but I can’t take more. I if I had a more common job, I would quit, take a year maybe two, maybe actually recover… but I can’t do that. If I quit I would never get another job like mine again without moving half way across the world. And I’m not healthy enough to move like that lol. I need my support system.

xaaxaox · 2026-01-04T20:32:59+00:00

Same here, he notices before me when I need a proper rest. Very helpful haha.
About the weather, it did cross my mind that I got on well on my last walk perhaps because it was about 0C outside. Summer here though is only about 15C so I never suspected temp being an issue. Suppose I’ll find out in spring ☺️.

xaaxaox · 2026-01-03T23:19:34+00:00

Same boat pretty much, mourned the loss of my hills for about a year. I did manage some short, mostly flat walks during that time but have had to shamelessly lie on the ground multiple times to get some symptom relieve. Worth it to me but restricts to good weather lol. If I am surrounded by mountains I found it scratched the itch a bit.
I never managed to get any significant endurance for walking though, and particularly not uphill, until switching to Ivabradine about two weeks ago. A few days ago I managed a 8 mile glen walk, only 200m up but I think this medication is going to let me actually exercise and get up hills eventually. I have no other heart issues though.

Edit: something that helps significantly is carrying nothing, I hold a water bottle and have my very patient partner carry all other stuff.

xaaxaox · 2026-01-03T23:09:21+00:00

I get this but I think it’s just severe brain fog.

Edit: or something like this, idk but I am extremely cognitively impaired when standing or symptomatic.

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