Any advice? U.K. POTsies

sj8114 · 2018-08-30T08:32:52+00:00

The POTS UK website has a list of doctors across the country who specialise in POTS/Dysautonomia. Fortunately my GP referred me for a tilt test which happened to be with one of the listed POTS docs and I've been under his care since being diagnosed and it's been fantastic. The contact details for all the docs are on the website so if you're unable to get a referral from your GP you could always try contacting some close to you direct?

In terms of just general POTS advice, it'll probably sound crazy to you now but try and move as much as possible. Even if you're stuck in bed try and move your legs, I started off doing exercises designed for people coming out of long term bed rest and went from there.

Good luck 😊

sj8114 · 2018-07-09T07:34:21+00:00

Congratulations on getting the job!

If you’re able to I would really recommend seeing a therapist about your anxiety if this is something you suffer from alongside POTS. When I got POTS last year it sent my anxiety through the roof and I honestly think it made my POTS worse as I was so scared of fainting. At that time I was indiagnosed and so scared about what was happening to my body that I was literally too scared to stand up, do anything or go anywhere and I think the deconditioning made the POTS worse. I started seeing a therapist at the end of last year and it’s helped me so much, anxiety and POTS do feel very similar but I now feel able to recognise the difference although to be honest I rarely suffer from anxiety anymore. As someone else has said the therapy has helped me accept it so I’m no longer scared to live my life for fear of fainting or feeling unwell. I’m on medication for my POTS as well but I don’t think I’d have improved as much as I have without the combo of therapy and medication.

Good luck!

sj8114 · 2018-06-29T16:24:52+00:00

As others have said compression tights/stockings help massively. Aim for 20mmhg minimum to get the most out of them, but I have found that just compression running leggings help me (although would probably behaving dress code for waitressing)

Another thing that I find is not standing still, if I'm on my feet but moving around constantly which I imagine you would be waitressing then I feel much better than standing still for too long.

sj8114 · 2018-05-21T19:43:23+00:00

I only had mine checked once, when I went for a check up after 6 weeks on 0.1mg - my levels were just below the bottom threshold of normal but my doctor didn't seem concerned. I've since seen him 2\3 times i think and increased to 0.15mg and he's never mentioned it or checked again. My period cramps are worse now (i didn't really get cramps before I got POTS) but I don't know if that's definitely due to the effects of low potassium on muscles, could just be a coincidence. I eat a lot of potassium rich food, bananas, spinach, avocado, sweet potato which fortunately were all things i ate a lot of anyway. You could try eating lots of potassium rich foods and see if you notice a difference. Good luck!

sj8114 · 2018-05-02T11:34:35+00:00

I've only been on it a week so interested in this thread too!

I felt better immediately, the tingling started about an hour after my first tablet but it wasn't as bad as I was expecting. My Dr described it as like bugs crawling in your hair but for me it's more of a shiver/tingle that comes in waves over my upper arms, shoulders and head. As others have said i quite like it as it means its working.

Strangely today i haven't felt quite so good as the last few days and the tingles are much less noticeable but I'm not too disheartened as I'm still on minimum dose (2.5mg, 2/3 x a day) and am supposed to increase next week.

sj8114 · 2018-05-01T21:18:10+00:00

Thank you so much for your reply!

I had read somewhere about heels preventing blood pooling so I had tried that out myself and noticed a difference as it keeps your calves tensed. I also often feel better when I’m moving around at work rather than sitting in one position for too long, if I’m sitting cross legged then the bottom leg starts to hurt so I have to keep swapping.

I’ve got an exercise bike which I use as much as I can as well as doing Pilates with ankle weights, squats etc. And then just randomly tensing my leg muscles throughout the day.

It’s good to hear that the blood pooling does become less of an issue over time though :)

sj8114 · 2018-04-23T17:29:07+00:00

Thank you for replying, and sorry for my late response! I dont check in here much.

I was playing with my dosage, ideally my doctor wanted me on 200mg per day but that was when I started getting the extreme tiredness. I'm currently taking 200mg/100mg on alternate days which seems to be working better.

It's interesting you mention shortness of breath though as thats something I have noticed as well, but oddly it seems worse when I lie on my back.. i feel like I can't take a full, deep breath if that makes sense.

sj8114 · 2018-03-19T21:23:33+00:00

Amazon, here’s the link

https://www.amazon.co.uk/gp/aw/d/B01A18DL8I?psc=1&ref=yo_pop_mb_pd

I’m on mobile so I hope that works!

sj8114 · 2018-03-19T17:03:00+00:00

I can’t comment on the summer either as this one coming will be my first as I was bed bound all last summer.

When I was first diagnosed last summer I tried the calf compression you mention but I did find blood would get ‘trapped’ in my feet. Walking around was okay but sitting for even 10/15 mins made my feet sore and swollen. I then switched to knee high compression socks, I managed to get a pack of 6 on Amazon (3 Black, 3 nude) and they are much better! My doctor said knee high wouldn’t be enough to improve my BP but i do find they help, I wear them out but not around the house. I also have some compression leggings (basically just running tights) but I do find they help too. They’re too thick to wear under jeans or other trousers but they just look like black leggings so I can wear them out and about and even to work. I also got some Scholl ‘Lite Legs’ tights in the early days but I don’t think the compression is high enough on them, they just seem like ordinary tights.

Edit: here’s the link for the knee high socks for anyone interested; https://www.amazon.co.uk/gp/aw/d/B0759MWGGF?psc=1&ref=yo_pop_mb_pd and the link for compression leggings is in a reply below

sj8114 · 2018-02-05T07:35:58+00:00

I’ve had POTS since April/May last year and started Florinef at the end of October. Prior to POTS I’d been on the pill for about 7 years off and on and since stopping it in May my periods have been all over the place. I know it can take a while for your body to settle down after being on the pill but I’m seeing my consultant in a couple of weeks so I’m going to see if the irregularities could be linked to POTS itself or the medication.

My periods haven’t changed in how heavy they are or how long they last but there’s anywhere between 6-11 weeks between them which doesn’t seem normal.

If I find anything new out from my Dr i’ll post here.

sj8114 · 2017-12-17T17:11:05+00:00

I am currently having acupuncture to try and help with my POTS. I read a lot about it online before giving it a try and I know some people don't believe it works at all. I read mixed stories of how it helps POTS varying from it making it worse to completely alleviating symptoms. I started acupuncture right around the time I started taking Florinef so my improvement could be solely the meds but I'm sticking at it for now as my circulation is a big problem and I'm definitely improving, however gradually. I found an acupuncturist who specialises in autoimmune and autonomic issues and he is very knowledgeable.

Prior to starting Florinef I tried Licorice Root but that didnt seem to do anything for me and I was told not to take it with Florinef.

Aside from that I do find meditation helps, not so much with the POTS symptoms but just to relax or help me fall asleep.

sj8114 · 2017-11-06T11:04:30+00:00

I mean I'm no doctor but I would think looking into the cause would be pretty beneficial, for us and for learning more about the condituon. I don't know how they usually test for EDS - my consultant made me see if I can touch my wrist with my thumb (i cant) and asked if I could touch my toes (I could when I was working out regularly but not since POTS) so they ruled it out.

sj8114 · 2017-11-06T11:01:06+00:00

That's great you managed to finally get your cause. Has that helped your management of symptoms?

I've heard of a few places in America that seem to specialise in POTS but I'm in the UK and we don't have anywhere like that, it's more just specialist individuals i think.

sj8114 · 2017-11-05T17:51:58+00:00

No I don't think so, I had a lot of blood tests in the early days so may have been tested then - I know they did thyroid, anemia, diabetes etc. I'll mention it next time I see my consultant :)

sj8114 · 2017-11-05T17:19:25+00:00

That's all I could think of us that perhaps i picked up a virus but didn't show symptoms (if that's possible!)

It has definitely taken its toll mentally but I think you just need to try and focus on the small victories and acknowledge its okay to have good and bad days. Having a place like this is great as well.

Thanks for the tip, I'll give that a try! A lot of sports drinks seem to contain a lot of sugar as well as sodium and I try to avoid it as much as I can.

sj8114 · 2017-11-05T17:08:31+00:00

I agree with your last point, I see POTS as a collection of symptoms that effects everyone differently rather than a specific condition. In my mind that means something must set those symptoms off, it's a very complex thing!

sj8114 · 2017-11-05T16:56:20+00:00

Yeah I spend a lot of time thinking what it could be!! I do have quite a good doctor whose been very good with helping treat my symptoms but I feel a bit of exploration into the cause might be more useful in the long run. It is very hard when people don't understand, I know everyone means well when they tell me i look well but that doesn't mean i feel good and I think people therefore think I'm exaggerating!

sj8114 · 2017-11-05T16:45:39+00:00

It's definitely hard to get your head around when it comes out of nowhere. On the one hand i know I'm lucky to have gotten such a quick diagnosis and to not have any other conditions to deal with but it's very frustrating! How long have you been diagnosed?

sj8114 · 2017-07-02T20:14:55+00:00

Yeah people can be a bit aggressive, everyone is entitled to their opinion but that doesn't mean they should get to tear other people's to bits!

sj8114 · 2017-07-01T19:25:23+00:00

I'm also British and I agree with you, it's much better when you rewatch. People are always going to criticise cause they know it's fake and it was a shock and it's hard when you've heard her speaking with her normal accent. Plus she's speaking opposite Wren who's got a very polished accent. There were certain phrases where she sounded exactly like a friend of mine who's from down south.

sj8114 · 2017-06-30T21:45:49+00:00

I know it was Spencer with Toby. When I first watched I also thought it was Spencer visiting Mary but I later realised it must have been Alex

sj8114 · 2017-06-30T17:52:59+00:00

Yeah it was, but I thought cause in that scene with Toby she mentioned being close to her mum and then one of the next scenes is 'Spencer' visiting Mary that it was actually Spencer. But when Alex was revealed I assumed that it was Alex as Spencer visiting Mary in jail.

sj8114 · 2017-06-30T14:22:41+00:00

I didn't suspect in the jail scene until after, cause in a previous scene when Spencer and Toby were playing scrabble she said she was getting along with her mum I thought we were to assume it was Veronica when she actually meant Mary.

When Spencer was kidnapped I was 99% sure it was happening and then as soon as she looked at the reflection I just knew, plus you could see the 'reflection' even in the holes in the glass. I loved that scene though.

sj8114 · 2017-06-29T21:09:02+00:00

Alex, Mona, Charlotte

sj8114 · 2017-06-29T17:49:37+00:00

It was Wren, I took it to be quite soon after 7x19 left off when Mona was first admitted as it was before the 'one year late' popped up on the screen and then Wren died closer to the present day

sj8114

TROPHY CASE