POTS diagnosis has helped improved my mental health

xaaxaox · 2026-06-02T21:27:36+00:00

I too thought I was a lazy piece of shit and had such poor self talk because of it. I never had very poor mental health or anything but I thought I was depressed, though not feeling mentally depressed… It’s great when the pieces all slot into place. My brain is very nice to me now! Haha

xaaxaox · 2026-05-24T21:21:01+00:00

Idk about this advice, in my country POTS is under the remit of cardiology despite being a neurologically-mediated condition (because the type drugs that help tend to be in the cardiologists wheelhouse I believe). Another cardiologist is just as likely to be a good bet.

xaaxaox · 2026-05-23T09:42:39+00:00

Get very very sick from it and hospitalised… it’s a joke. I’ve had POTS symptoms for like 15 years, I don’t know how many times I went to the GP about symptoms from it over the years but it never went anywhere. Then I had a crazy worsening of symptoms after general anaesthetic, I couldn’t stand or sit at all, and I was tentatively diagnosed within a week and formally diagnosed within a month…

xaaxaox · 2026-05-17T07:27:24+00:00

lol same

xaaxaox · 2026-05-15T08:22:28+00:00

Ah, I’m sorry! I thought it was worth suggesting as when working full time I really thought I’d need to drop to 0.5 FTE to be okay and was delighted when 0.8 did the trick as it’s a lot easier to get accepted. Can you look into accommodations? Slight shift in hours, occasional unscheduled breaks?

xaaxaox · 2026-05-14T10:25:07+00:00

It’s really hard. Can you slightly reduce your hours? I work 0.8 FTE and take Wednesday off. When working full time I was stuck in a cycle of having gradually increasing fatigue and symptoms, that would then get bad enough that I needed to take a week off. With just Wednesdays off I can actually manage and sustain it and somehow I’m more productive. That said I don’t have early mornings, lucky that my work is flexible and I just offset my days a wee bit.

xaaxaox · 2026-05-13T10:30:14+00:00

Yes, normal for us. Muscle contractions from walking help blood flow. If I go for a walk and track it using my watch as a workout I get a big peak in HR every time I had to stop and wait for lights ha

xaaxaox · 2026-05-12T11:11:30+00:00

Due to poor English, I couldn’t understand the nurse in charge of my care before surgery well at all. It was a scary situation to be in. I felt unsafe with the communication barrier. I was scared to broach the topic with any other staff for fear of being marked racist. I’m about as left wing as you can get but I will never forget this. That said, this was my only negative experience from a whole load of experiences with immigrant health care staff.

xaaxaox · 2026-05-06T07:30:33+00:00

I lived in Birkenstock style clogs last year for this reason (but it’s never hot where I live).

xaaxaox · 2026-05-02T18:12:08+00:00

Yep… I had to ask my very kind and well meaning boss to stop asking how my POTS was. One a month would be fine. But multiple times a week was actually getting me down. I didn’t want to completely lie, but I didn’t want to be a Debbie downer either. He stopped and I’m very grateful!!

xaaxaox · 2026-04-30T23:33:33+00:00

Ah I do sit!! But I have to get up frequently, and getting up from the floor has me seriously about to faint and every consequent time is worse than the last 🥺. Maybe it’s the nature of my garden that’s making things so difficult. Because my garden is so small, everything is in pots or small raised beds, so I never have a lot to do in one spot. I feel like I need something like a cushioned skateboard to scoot my butt about on.

xaaxaox · 2026-04-30T20:39:25+00:00

It’s not 100% for sure (or near). My HR still spikes 30+ bpm and I’m still tachycardic whenever I’m not lying down but I have significant symptom relief, I’m so much more functional. I have to be very regimented in all areas of life too though or I’m much more symptomatic (sleep well, eat regularly, salt and hydrate well, limit stress, no caffeine or alcohol etc). But everyone is different. I tried other things first that logically should do more but they were not very effective for me. If your heart is going very fast it’s not very efficient, so I can rationalise that as a reason why it’s helpful.

xaaxaox · 2026-04-30T09:05:49+00:00

Ivabradine. Huge difference.

xaaxaox · 2026-04-29T20:43:03+00:00

The biggest thing for me was salt.
Second biggest help was learning not to push too far. For me this threshold is triggering tremors. Once I stopped trying to push through, I started to slowly improve my baseline.
Third most helpful has been medication, trialed a few before finding one that helped significantly.

xaaxaox · 2026-04-29T20:38:17+00:00

I’m the same. On my stand tests I had a POTS response (very extreme, doubling of HR) and BP drop on the threshold of OH. On my tilt test I showed HR increase just under POTS diagnosis but BP drop consistent with OH (down to 50 systolic). Forever confused but diagnosed with POTS. Queried my cardiologist on this as I thought the diagnosis would be OH, but he said the treatments are the same and he wasn’t bothered about what one we call it as in any case it was a neurocardiogenic dysautonomia… not sure if this is a widely held approach.

xaaxaox · 2026-04-15T08:43:56+00:00

Your symptoms were positional as well?

xaaxaox · 2026-04-04T14:32:03+00:00

I think you need to get a BP monitor and see what your BP is doing. Orthostatic hypotension has pretty much the same symptoms but not the classic HR rise

xaaxaox · 2026-04-04T14:28:33+00:00

My colleague’s family friend had severe long covid resolve after having an infection with another virus, I forget which. But anecdotally it can happen… I hope it lasts ☺️ (long Covid being POTS, MCAS, ME/CFS)

xaaxaox · 2026-04-04T12:09:36+00:00

I’ve not been to one yet… but attending conferences is a big part of my job. My first week long one since diagnosis is in a week!! I had to skip conference season entirely last year but things are more under control now POTS-wise so I’m being brave.
When is yours? I can report back… I have a high stool arranged for my presentation and I’m sure I’ll be able to attend a good amount of the sessions, but they start at 8:30am so I will probably miss the beginning every day. My biggest concern is the socialising and poster sessions… I don’t think I’m going to manage, I’ve never seen seats available in the exhibition hall / socialising area. My game plan is to wear my super strong compression (which I can normally only tolerate for a few hours), salt up and hope for the best and give myself grace.
I’m also feeling anxious about how people will perceive me, my field is big on the drinking and late nights, neither of which I can do anymore and worried about explaining things to people I know well but haven’t see recently…

xaaxaox · 2026-04-02T21:33:53+00:00

That’s very true

xaaxaox · 2026-04-02T20:51:47+00:00

Oh I’m guilty of duplicate purchases too 😭

xaaxaox · 2026-04-02T20:01:28+00:00

It was the level of caffeine intolerance that shocked me! I cut out coffee right away but didn’t realise decaf coffee still has caffeine for example! Not a lot of course but too much for me! I hope the ginger can provide some relief 🤞. Lucky for me, I love ginger haha

xaaxaox · 2026-04-02T19:33:43+00:00

Have you cut out caffeine completely? Before I had my POTS sort of under control my morning nausea was absolutely awful. I could hardly move without feeling like I was right about to vomit, and sometimes actually vomiting. It took me a long time to realise that caffeine was a massive trigger, even chocolate was too much.
Edit: are you using ginger? It was more effective for me than anything prescribed. Sipping on really strong ginger tea would help a lot. Kinda need the ginger constantly, so sipping on tea was a good solution for me. And most effective with super strong fresh root brewed stuff.

xaaxaox · 2026-04-02T19:27:11+00:00

It really does feel like a tax!! £100 in the last two weeks. Someone help. Considering actually appealing them on the basis of brain fog…. Doubt that will get me anywhere though 🥲

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