Anybody From The Uk Here????

[feelingsick]

Hi Sarah Jane... Wondered why the Hammersmith are ignoring your tt results? My gp says 3 years ago had not even heard of pots but now seeing more and more. I think I was his only patient as well. But as understanding

Increases in this area amongst GPS it is being spotted more easily. Pots uk are doing a great job in this regard. My neurologist recommended the pots uk website to me.

[E246]

Hi I am from UK. haven't posted for awhile as doing a lot better. I was also first case of POTs at my doctors in Newcastle. I asked for a referral on NHS to Prof Mathais and had a week as an inpatient. Also had a referral for assessment for EDS3 which was positive. I now see a private Cardio in Newcastle called Dr Purcell who deals with chest pain and is treating me for microvascular angina which seems to overlap with the pots.

This site has been invaluable but also good to here from others in uk.

[sparrowkate]

Hi everyone,

We are in Essex. Youngest daughter is getting good paediatric treatment in London for POTS/ EDS (Imperial and the Royal London). Our GP doesn't really know much about POTS but she is very supportive; she has one other POTS patient now.

Sarah Jane - I hope you sort out your problems with the TTT at Hammersmith. I struggled with them as well; it took lots of chasing to get the results.

[Alison]

Sorry to hear you are having a rough time Andy and , I'm so sorry to hear you have been told it is terminal - that must have been a hard thing to hear the doctor say. I hope the catheter works out - getting up ten times in the night must be making you and your wife exhausted.

[TCP]

Andy, I see no one for my POTS, ME or PN/AN. I get treatment for each and every problem.

[Little Miss Bounce]

Hi everybody, I'm from the UK too, South Wales in fact. I too see Professor Mathius in London, although as its through the NHS I haven't actually seen Prof Mathius for years, but am seen by his team. I have found this forum really useful as I have never met anyone else with pots and have found no help locally. Andy - I hope your catheter is working well for you x

[Joeywop]

Hi. I live in Oxford. Been diagnosed with Pots for 2years and symptomatic for 4 years. I met Prof Mathius for one appointment before he retired from NHS. Now seeing Dr Iodice from his team, although it feels like a lifetime between appointments. Never met anyone else with Pots, so I often have a read of this forum. Never posted before though x

[corina]

Welcome to the forum Joeywop!

[blobbydodger]

I am from the UK too and am waiting to visit the Sheffield Pots Clinic for TTT

[aclexis]

Hi, I'm in Hampshire and currently trying to be patient (ha!) with the waiting times of the UCLH autonomic unit.

[smish]

Hey guys, I'm from the UK. Just wondering how you all got diagnosed (or rather, how you got referred by your GP). Did you have to research and then suggest it to your doctor, or did they come up with the idea themselves? Have had many appointments over the last year or so, trying to figure out what was wrong with me. My doctor just kept putting it down to anxiety or not eating enough (I eat well, I just don't put on weight) so I started doing some research myself and I am pretty sure it's POTS. Reading some of the stuff online is like reading my life story. All things I thought were normal, like feeling like you're running a marathon when you're out in the hot weather on holiday. Have tested my heart rate and it is always at least 115 when just standing still, and often more like 130. 140-150 after meals or baths. Always goes away when I lay down.
I am seeing a different GP next week and hopefully he will be more helpful. I'm reluctant to mention POTS to him, as I don't want to make myself sound like a hypochondriac!

[galatea]

Hi smish, I would definitely mention POTS to your doctor, otherwise you’ll never get a diagnosis. You could ask for a referral to have the tilt test. You can look on the POTS UK website at the doctors list to find one in your area. The main place in London is in the National Hospital of Neurology and Neurosurgery – Professor Mathias’s clinic (although the wait is incredibly long).

I had to change doctors many times until I found one that agreed to refer me, but I had to really insist as they kept on dismissing me. Most GPs in my experience, have never heard of POTS, and when you try to explain they’re very skeptical that it’s a proper condition. You could ask your GP to do a stand test to measure blood pressure and heart rate after lying down for 10 minutes, then after standing up for 10 minutes.

[Rima1]

I'm in Devon, I was diagnoised with PoTS in Novermber after reading about it online and thinking 'bloody ****, that's me' (22 years after i became ill...better late than never!). I see Professor Mathias and have an appt with Professor Grahame for joint hypermobility later this month. I'm still stunned at the jigsaw of symptoms/conditions that's suddenly slotting together. I had to self refer privately after a NHS tilt table resulted in the neurologist telling me 'you're just one of those people who can't stand for 20 minutes'....not being quite sure who 'those people' were I wasn't prepared to be fobbed off again. My GP has never heard of PoTS and seems totally disinterested, he is however prescribing the recommended drugs. I've had years of being told I'm somatising or depressed or have medically unexplained symptoms, so it's very nice to now feel vindicated!

[smish]

Thanks for your replies! It is very irritating that it seems you have to pretty much diagnose yourself. I don't want to be that patient who goes in and says they've been Googling, but we really seem to have no choice! When you have to turn down going to yoga with your friends just "because I don't feel up to it" with no medical reason for it, people think you're crazy!
It would be nice to get some treatment, but I think it would also make a big difference to my happiness in general if I could just say "it's because of xyz" instead of feeling like people think I'm making it up.
I've been diagnosed with anxiety in the past and was given Propranolol for it (a beta blocker) which helps me feel a lot better but not in an anxiety sense - it allows me to exercise and feel like I have some energy. A lot of my symptoms go away when I take it. I took it every day last year in Florida just to cope with the heat.

I had a 24 hour ECG which showed tachycardia and the GP who looked at it told the receptionist I should get a thyroid test, but I've already had one which was fine. At least now I have the record of tachycardia so I have a starting point. Will update you all next week after my appointment - taking my mum with me to back me up!

[TCP]

If anyone would like to message me if you're from the UK please feel free to do so