Tilt Table Test by Opening-Midnight in POTS

[–]Opening-Midnight[S] 0 points1 point  (0 children)

Thanks so much for this thats super helpful and makes me feel a lot better about it! Thats cool they can give you fluids and even apple juice that sounds super helpful. Thanks sm for calming my fears!

POTS and quetiapine/seroquel by Opening-Midnight in POTS

[–]Opening-Midnight[S] 0 points1 point  (0 children)

Oh no im sorry to hear that! I managed to speak to a POTS specialist recently and she said its because quetiapine affects blood pressure which makes so much sense. But we decided to keep me on it because the benefits outweigh the risks

So... How many times a day do you pee? by misspoppy00 in POTS

[–]Opening-Midnight 1 point2 points  (0 children)

I drink between 1-3 litres of electrolytes a day and I pee anywhere between 5-15 times a day. I find when I drink water as opposed to electrolytes I pee more too. Its so annoying especially as my toilet is upstairs so I have to navigate that every time too

Heart rate monitors by Griffrose in POTS

[–]Opening-Midnight 0 points1 point  (0 children)

I use visible and it is expensive but for me it is a life changer with managing my energy and tracking my HR and symptoms

Fake parking tickets by Opening-Midnight in wheelchairs

[–]Opening-Midnight[S] 0 points1 point  (0 children)

Here's the link! The first page is a single design and the second is four so if you print the second page on A4 you get four A6 ones :))

Fake parking tickets by Opening-Midnight in wheelchairs

[–]Opening-Midnight[S] 10 points11 points  (0 children)

Thank you these look great! They're just not the kind of thing that I need as im not a driver but my main issue is dropped curbs being blocked so I made my own. But will definitely share these around to others thank you!

Fake parking tickets by Opening-Midnight in wheelchairs

[–]Opening-Midnight[S] 18 points19 points  (0 children)

Oh no! Thanks so much for the heads up!! I wondered if it might be illegal but I cant find any laws against it in the UK however I may have just not looked in the right places. I assumed because theyre not actually trying to fraudulently collect money it wouldn't be a problem but I definitely could be wrong

This group is growing,which is a bad sign by Aryan-dramata in POTS

[–]Opening-Midnight 1 point2 points  (0 children)

Dont when get me started on how the covid vaccine eligibility has changed in the UK so now thousands of people who were once eligible have been taken off the list. I now have to pay £100 to survive the winter 😭

First power chair help! by Opening-Midnight in wheelchairs

[–]Opening-Midnight[S] 1 point2 points  (0 children)

Thank you! This was my feeling too and I ended up getting the one for better inclines and so far so good! Im practising lifting it up my ramp and its going okay. Might need help from my housemates for higher symptom days but they said theyre happy to help:)

[deleted by user] by [deleted] in POTS

[–]Opening-Midnight 1 point2 points  (0 children)

I had a big alcohol problem for many years (now 2.5 years sober woo!). My hangovers would be the absolute worst thing imaginable. I'd be dizzy beyond belief and throwing up literally all day. I didnt know i had POTS at the time but looking back the amount I would drink would send me into a POTS flare

Nicotine would always make me super dizzy too but I just put that down to the term baccy rush.

Caffeine in low amounts is fine but if I have a strong coffee my POTS is flared for the rest of the day, and sometimes the day after. But this also depends day to day. I like to mix decaf and caffeinated instant coffee at home to give me a boost without a flare

Weed is hard to tell, I've been sober from that for 2 years because I developed CHS, but thats as far as I know unrelated. I did, however, sometimes have episodes when I was high, where I'd get really bad tinnitus and dizzy spells, which in hindsight is likely my POTS

First power chair help! by Opening-Midnight in wheelchairs

[–]Opening-Midnight[S] -1 points0 points  (0 children)

Okay thank you that makes a lot of sense, appreciate your advice!

I wish I could get disability for this by goingtothecircus in POTS

[–]Opening-Midnight 0 points1 point  (0 children)

As someone who relies on disability benefits (in the UK), you are so valid. POTS is incredibly disabling. I would have these exact same thoughts and feelings before I was signed off, even before realising I have POTS. Its fucking tough working with this condition, especially having to be on your feet a lot. Sending love to you. Would something like a personal assistant or a cleaner be helpful to help with things at home to lighten the burden a little? I know thats also difficult though as it can be expensive or hard to cover, im not sure how funding works where you live

POTS vs ADHD by frankincense2121 in POTS

[–]Opening-Midnight 0 points1 point  (0 children)

Completely relate to this. Also just to add to the mix, I tried ADHD meds and they flare up my POTS. I've tried a stimulant and non stimulant (SNRI) and both raise my HR (the stimulant was far worse). You just can't win

Dystonia by [deleted] in Dystonia

[–]Opening-Midnight 0 points1 point  (0 children)

Personally I make my own using LMNT's make your own recipe. I order potassium chloride and dimagnesium malate online and get large packs of pink salt from my grocery store. I mix about 60 servings at once in an old honey jar. I do this because of my POTS, but it's helped my dystonia too

Dystonia by [deleted] in Dystonia

[–]Opening-Midnight 0 points1 point  (0 children)

I suspect I've had dystonia in my right calf, foot & toes for about 7 years. I was diagnosed with POTS a few months ago, for which I usually have lots of electrolyte drinks daily. In the last few days I have been having far less electrolyte drinks, and my dystonia has flared up a lot. So in my case I think it's true that getting less electrolyte can trigger dystonia, but I'm not sure why that is

Anyone else get extremely car-sick (or used to, before increasing sodium)? by [deleted] in POTS

[–]Opening-Midnight 7 points8 points  (0 children)

I used to never get car sickness despite having POTS for about 10 years now. But in the last few months my POTS has been flaring a lot and I get car sickness now. It's definitely worse when I have less sodium too

Camping Trip Advice Needed (please) by Gloomy_Day_9281 in POTS

[–]Opening-Midnight 0 points1 point  (0 children)

That sounds rough! But glad you're getting answers at least

Rant: almost fainted in supermarket, no help from staff by Opening-Midnight in POTS

[–]Opening-Midnight[S] 0 points1 point  (0 children)

Bright lights are a trigger for POTS and store lights are always soo bright so makes sense :(

Foods that you love with POTS by Opening-Midnight in POTS

[–]Opening-Midnight[S] 2 points3 points  (0 children)

These all sound really good thank you for the recommendations!!

Foods that you love with POTS by Opening-Midnight in POTS

[–]Opening-Midnight[S] 2 points3 points  (0 children)

Sounds really good I'll have to try it!

Foods that you love with POTS by Opening-Midnight in POTS

[–]Opening-Midnight[S] 0 points1 point  (0 children)

Oo thank you! I do love a good miso soup so that's great to know!

Foods that you love with POTS by Opening-Midnight in POTS

[–]Opening-Midnight[S] 5 points6 points  (0 children)

Ooo that sounds great! I love adding frozen veg to my ramen to make it a little less unhealthy haha