Anyone in the uk ?

[Lavanderbloom]

seems so hard find ppl with pots in the uk . I am curntly on no meds just water salt .i struggle walk far i can do basics cleaning at home washing up laundry no hovering etc i leave the house not very offten i feeling so isolated i have two children i just wondering if there anyone like me out there .i have parter he works so i am main carer my childern .i really struggle but i get by day by day.it would be nice meet ppl like me 😄am  feel sooo old i only 27😂

[MomtoGiuliana]

Welcome to the forum.  Yes there are members here from the UK.

So sorry you have such significant symptoms right now.  There are many meds that can help.  Perhaps you can discuss these with your doctor.

Here is a list of "what helps" that might be useful to you:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

 

[stooshiecat]

I'm from the UK but I don't have a diagnosis yet.  Have most of the POTS symptoms but I'm waiting to see my doctor on Friday to see if they'll test me for it.  Not really sure how referral works because all the stories I've read have been people in USA.  Sorry to hear you're struggling so much.  I can totally identify with feeling old.  I'm only 33 and most days I feel like I should be claiming my pensions :D!

[TCP]

Hi. There's a few of us from the UK, so you're not alone. 

I've been on meds but not taking any for POTS at present. I drink lots of water. I've also got hEDS 3, mast cell issues and suffer from whole body neuropathic pain. 

 

[dancer65]

Hi I am from UK . I was referred by my GP in Wales for TTT in England as they buy in treatment from that area. It was a long wait of About 20 months as the consultant semi retired so only worked part time !  For another year I worked with GP to try to control symptoms but Eventually my GP to referre me to syncope clinic in London after Florinef didnt work for me and only cardiologist can prescribe certain treatments such as midodrine . Once I got referral it was about 2 months until I got appointment which I was pretty impressed with ! Since then treatment has improved my POTS and VVS

Depending where you live there are POTS support groups I think most are in the main cities . 

 

[Jojo79]

I'm in the UK, South England, Wiltshire. I'm 38,lone parenthood to a 4 year old and know exactly how you feel. I've just been hospitalised and need some help at home but getting it is near impossible. Luckily my sons father and his partner are very involved and helping with our son. 

I feel 100 years old and look it these days. 

Having been in the NHS system it has scared me a bit. They have no clue at all about this. 

[Wilsonbed]

Im in the UK, South Yorkshire, Im 22 and I totally feel you. I feel isolated as **** most days., I can also do the basics like getting around the house but anything further than my front door without a lift is outside the realm of possibilities. I am currently working on getting a wheel chair but first iv got to fight to get my doctor to take our condition seriously

[Lavanderbloom]

Thank you all taking the time to reply . I hope u all coping well today. I have found gps in my part uk very rude and cruel "all in my head" if i had not pushed for certain doctors to do there job i wouldnt be here today .i have heard the saline drip is good with pots am fighting for it .one thing i was wondering was if was only me who needs a wheelchair outside the house ? Also if anyone else sees dr julia newton for there pots xx

[Lavanderbloom]

Oh they wouldnt give me a wheelchair i have buy one of ebay . 

[CelticLass]

Welsh woman living in SW England here. Have POTS, EDS III and vasovagal syncope. Everything seemed to sort of be in balance , until Monday when I collapsed in the hospital whilst waiting for hubby to recover from eyelid surgery! Heart rate apparently dropped to 46 and BP to 86 - the advantages of having a crash team on site 😊 I take fludrocortisone, and until now it was largely keeping symptoms in check, so feeling a tad frustrated. 

[m@t]

On 15/08/2017 at 3:20 PM, Jojo79 said:

I'm in the UK, South England, Wiltshire. I'm 38,lone parenthood to a 4 year old and know exactly how you feel. I've just been hospitalised and need some help at home but getting it is near impossible. Luckily my sons father and his partner are very involved and helping with our son. 

I feel 100 years old and look it these days. 

Having been in the NHS system it has scared me a bit. They have no clue at all about this. 

I'm the same age and slightly further east in Hampshire. I am lucky that I can hold down a full time job as I dont have things as bad as most but still know your pain...

[Jojo79]

Hi Mat, 

Ah you are a local! I have recently been talking with a lovely girl from Fordingbridge. I strongly believe this condition is significantly under diagnosed. I only got where I have because of going private. Fortunately my prior employers had health insurance which I have been able to hold onto. 

 

[bombsh3ll]

Hello, I'm a fellow UK POTS patient, I live in Scotland. I traveled to Newcastle to see Professor Newton for diagnosis but as I don't live in England that clinic wouldn't provide ongoing care so I am left with no care or treatment at all. I am trying to get a referral to the NHS autonomic clinic in London but funding issues make this difficult if you don't have an address/GP in England. I am a GP myself so have been fortunate to be able to try all applicable meds myself however none have helped - fludrocortisone was more vasoconstricting than volume enhancing for me so net effect same or even lower blood volume. I really wish we could get IV saline in the UK - if anyone has managed this I would love to know where and how!!!

[bombsh3ll]

On 8/16/2017 at 2:16 PM, Lavanderbloom said:

Oh they wouldnt give me a wheelchair i have buy one of ebay . 

I know it's appalling. I've bought my own too, it is a G-lite pro. It is lightweight and not too expensive and better quality than the NHS ones but you're right we shouldn't have to pay.  The sad thing is if you've smoked, drank or eaten yourself half to death the NHS falls over itself to help. I hate being so bitter about the organisation I worked my whole life in but it's true. 

[m@t]

Hey Bombsh3ll have you looked at seeing Prof Mathias in his private clinic? 

How did your symptoms start?

[Paul Michael]

Hi yes I am in the UK too. No help for my POTS thus far. Been to the Autonomic unit and they are overrated IMO.

[Greyhound]

I'm in the UK. Had my TTT which I know has to have been positive (too tired to explain how I know right now, just trust me!) but received a letter saying it found 'no diagnostic features' of PoTS. I'm desperately trying to get them to send me the data so I can question this.

[bombsh3ll]

On 11/26/2017 at 12:19 PM, m@t said:

Hey Bombsh3ll have you looked at seeing Prof Mathias in his private clinic? 

How did your symptoms start?

Hi m@t,

I made enquiries with Prof Matthias' private clinic but apparently he doesn't use IV fluids as treatment at all, which is what I am really keen to pursue. He also seems to favour a lot of expensive testing which in my case would be largely duplication or not add anything to my quality of life. I am a GP so have been fortunate enough to be able to access all appropriate oral medications myself, which either haven't worked or I haven't tolerated them. 

The only remaining test I want to have, which until recently I didn't know was available in the UK, is a blood volume test, to prove how volume deplete I believe I am. I am currently working on getting a referral from either my GP or private cardiologist for this, which is like pulling teeth!

I am being assessed for diabetes insipidus, Sjogren's and EDS through the NHS. Tests show I produce next to no renin or aldosterone, but unfortunately fludro doesn't hydrate me - it's vasoconstricting action seems to outweigh salt retention in me. 

Symptom onset for me was very abrupt, 5pm on 4th August 2014. I tried to blow up what I thought was a balloon, turned out it was a waterbomb, ie a forceful and prolonged Valsalva. I passed out, and have been on the verge of passing out ever since, unable to stand for more than a couple of minutes with a standing HR on test of 136. I was completely healthy to my knowledge before that time. I don't know if that "caused" POTS for me or just tipped me into being symptomatic. 14 months prior to that I had a massive postpartum haemorrhage at my daughter's birth, and I do wonder if the two are connected. Prof Newton also suggested that my blood volume may never have fully recovered from that and then been triggered by the balloon incident. Maybe I would have developed it anyway, but I wish so much I could go back to that day and not try to blow up that balloon!

How about you, have you seen Prof Matthias and what was your experience if so? Also was your onset sudden like mine or gradual

[Bendymeat]

Hi bombsh3ll-

I’m also currently in the UK and being seen by Prof Mathias and Dr. Matharu for chronic migraines. You mentioned a postpartum hemorrhage. I was wondering- have you had an MRI of your pituitary gland? You may be suffering from Sheehan’s syndrome which could also explain a whole lot of things.

best of luck!

 

On 12/7/2017 at 9:05 AM, bombsh3ll said:

Hi m@t,

I made enquiries with Prof Matthias' private clinic but apparently he doesn't use IV fluids as treatment at all, which is what I am really keen to pursue. He also seems to favour a lot of expensive testing which in my case would be largely duplication or not add anything to my quality of life. I am a GP so have been fortunate enough to be able to access all appropriate oral medications myself, which either haven't worked or I haven't tolerated them. 

The only remaining test I want to have, which until recently I didn't know was available in the UK, is a blood volume test, to prove how volume deplete I believe I am. I am currently working on getting a referral from either my GP or private cardiologist for this, which is like pulling teeth!

I am being assessed for diabetes insipidus, Sjogren's and EDS through the NHS. Tests show I produce next to no renin or aldosterone, but unfortunately fludro doesn't hydrate me - it's vasoconstricting action seems to outweigh salt retention in me. 

Symptom onset for me was very abrupt, 5pm on 4th August 2014. I tried to blow up what I thought was a balloon, turned out it was a waterbomb, ie a forceful and prolonged Valsalva. I passed out, and have been on the verge of passing out ever since, unable to stand for more than a couple of minutes with a standing HR on test of 136. I was completely healthy to my knowledge before that time. I don't know if that "caused" POTS for me or just tipped me into being symptomatic. 14 months prior to that I had a massive postpartum haemorrhage at my daughter's birth, and I do wonder if the two are connected. Prof Newton also suggested that my blood volume may never have fully recovered from that and then been triggered by the balloon incident. Maybe I would have developed it anyway, but I wish so much I could go back to that day and not try to blow up that balloon!

How about you, have you seen Prof Matthias and what was your experience if so? Also was your onset sudden like mine or gradual

 

[TCP]

I currently have a pituitary tumour and I'm pondering the POTS/pituitary tumour link. 

[bombsh3ll]

On 3/14/2018 at 1:42 PM, Bendymeat said:

You may be suffering from Sheehan’s syndrome which could also explain a whole lot of things.

Thanks Bendymeat! I did have a pituitary MRI which was normal, and testing of all the other pituitary hormones apart from ADH was normal too.  I was hoping for Sheehan's as it could have been more easily treated!

It looks like I will soon be able to get desmopressin on the NHS instead of buying it which is a small win. I only take 50 micrograms at night though which means I don't have to get up in the night to pee, and wouldn't take any more during the day as it doesn't help me stand and I'd have to fluid restrict and be at risk of hyponatraemia.  

[Emily22]

Hi, also in the UK. My daughter has POTS. We saw many many hopeless doctors before eventually getting a diagnosis. There’s very little in the way of support or even doctors who will see kids. 

[m@t]

Hey Emily. Have you seen the potsuk.org site? I think they are quite active on Facebook etc. There is also the rather fantastic York Cardiology (Dr Sanjay Gupta) who has a youtube channel with some pots info and runs clinics. He seems to "get it" and also understands the importance of a good Dr patient relationship.

Awareness is spreading and there was a brief mention on "Casualty" admittedly it was related to EDS but it was still a mention

[dancer65]

Hi Emily 

Like M@T said there is POTS uk also STARS which I am a member of, they were very supportive to me when I was being diagnosed, they have a help line . 

I am actually going to Dr Gupta seminar in York at the end of April, he posted yesterday asking those who were going what they wanted him  to talk about , many requests regarding POTS so I am looking forward to it .

 

[TCP]

I'm in the UK and see Dr Hayat at University Hospital Coventry and Warwickshire. He is a cardiologist and electrophysiologist. He is a good listener and very open and honest. He also doesn't have a closed mind.