Hello I'm New, Another Potsie From The Uk

[Alison]

I'm so glad I found this forum. I'm newly diagnosed, it's incredible finding out there are people out there feeling similarly to me. I first went to my GP about five years ago at the age of 39 and said I was feeling lightheaded, it sounded daft! She ran some blood tests and they were all ok so that was that. I went back last year, and said the same story, and also that my memory seemed really bad, I could hardly bear to admit that, I had the usual round of blood tests, and was told all was ok. I was asked if I was anxious person, and I started to wonder myself if it was just health anxiety. I feel worse in the winter, don't know why? come November last year I was feeling was than ever, and having a sort of dizzy feeling in my head about ten times a day. And my lack of memory and concentration were scaring me. I saw a different G.P. who had thankfully recently read an article about Pots. She did a version of the tilt table test and sent me away to read about it on the Internet saying 'I don't think there any specialists'.

I fit the category of tall, skinny and am a runner. I think I'm a runner because of the Pots - all my adult life I have known that I only feel well when I exercise - only now it doesn't seem to be working - the exercise isn't keeping me well.

It's wonderful to have a diagnosis, but I'm finding that when I think about it my eyes well up. I had plans for my future - am I going to be able to them? Am I going to continue to get worse? Cognitively I have been feeling so bad I'm not sure if I'm fit for work. I keep telling myself to get a grip, especially as I can see others are clearly a lot more affected by Pots than me, I have three children and work parttime, Pots has barely affected me up till now, though I think I have always had it - I remember feeling lightheaded after a long walk when I was 21, at the time I thought that perhaps I didn't breathe properly. And now I realise why I have always felt the need to sit down, perhaps it also explains the worsening continence, and those restless legs that I had when I was pregnant. And it explains why I've never really been on top of my household chores, I always felt compelled to sit down after a bit and I truly believed I was lazy.

I have so much that I'd like to discuss, but don't want to do a really long post - I'll save the rest for next time. Just wanted to introduce myself, and say thanks to those who run this forum.

[andybonse]

Welcome!

I'm glad you have a diagnosis, but this is not enough to really answer your questions, in fact its not a diagnosis its a syndrome of symptoms.

For example, my POTS(dysautonomia) is caused by Ehlers Danlos Syndrome, there are lots of causes, autoimmune illnesses and neuropathies etc.

I'm in the UK too, a specialist in the area is Professor Mathias in London, i'd suggest getting some basic bloods such as anti nuclear antibodies test, you've probably had all the basic ones. Are you bendy at all? Look up bleighton scale hypermobility.

Andy.

[corina]

Hi Alison, welcome to the forum!

[BeforeTheMorning]

Hi,

Welcome to the forum! It's nice to 'meet' you.

It's great that you finally have a diagnosis, but I know that it can be really hard at times to accept that you are not a 'normal' healthy person. I got diagnosed with POTS this past December, after several years of symptoms.

Andybonse is right, have you looked into the cause of your POTS? Mine is probably also caused by Ehlers Danlos, but I'm still waiting to see a specialist in that.

Best Wishes,

Lyla

[LittleOne]

Hi I'm also in the UK.

Definately try and find a specialist as they can investigate why.

Where abouts are you?

x

[feelingsick]

II remember when I realised all was not well when apart from all the other symptoms I was experiencing - the defining moment was the daily walk I always did round our beautiful village. I would walk for 40 mins round trip home. These walks began to turn into a nightmare. I at first thought I may be getting anxious/agrophobic because half way through the walk I would start sweating and getting dizzy and heart racing. But suddenly it dawned on me that these symptoms always happened at the same spot when I reached a certain road ie exactly after 15 mins of walking. Then I would "gasp" my way home and go sit down and would be ok. This was a massive clue to me which started me on the journey to diagnosis.

[Alison]

I wasn't sure how much to push my GP for a referral to a specialist. I'm feeling a lot better with compression tight, but already am a bit fed up of wearing them! I've also just started a high dose of vitamin d and that seems to have hugely reduced the dizziness. I'm planning to take a break from work, when I do that will give me more time to think about it all. I was wondering if it matters why I have Pots? I've been looking at my elbows tring to figure out if they go out more than other people's - whether I am hyper mobile? Thrre's no sign of it elsewhere in my body except I've noticed at yoga classes that when we squat I find it easy, and hang a lot lower than everyone else - I see most of the people in the class finding it an agonising position. I'm in Hertfordshire, so could see a doctor in London.

lyla you are right, it is hard to accept that I'm not 100% healthy - though I did know it really beforehand anyway - perhaps the doctors had managed to convince me it was all in my head.

[Kooky]

Hi Alison

I don't really have answers for your questions unfortunately but wanted to say that your story sounds very similar to mine. I too had been to see the doctor on various occasions with complaints that alone probably seemed pretty trivial but there were just so many strange things going on at one time I knew something wasn't right. I had blood tests that all came back fine so I put it down to 'one of those things' until I saw one doctor that listened to my list of ailments and said what I was saying sounded like something he'd recently been to a seminar about. He did a poor mans tilt test on me, I was sent to a local hospital to see a cardiologist and from there was referred to Professor Mathias down in London to get further testing done. My official diagnosis of PoTS was given at the beginning of this year.

Professor Mathias has retired from the NHS now but can still be seen as a private patient. I am now under the care of Dr Valeria Iodice through the NHS. I thought I would share her name with you in case you look into seeking out a specialist in the future.

I also wanted to say that can totally relate to you being happy to have a diagnosis and knowing there is a reason for you feeling the way you do but also getting teary eyed and emotional because of the impact of it all on your future. Sending hugs your way.

Finally, welcome to the forum from another Hertfordshire dweller

Kooky.

[Alison]

Thanks Kooky for your hugs and for the name of the specialist. Did the specialist help you at all? I don't really know whether to push for a referral - I'm going to see how I do for a while with lifestyle changes I think. The Pots is not affecting me physically very much - more cognitively, and that is a hard thing to measure - to know whether it is improving or not. Or getting worse.

[LittleOne]

Personally I would push for a referral as there may be an underlying cause for your pots that can be treated.

[Little Miss Bounce]

Hi Alison, welcome to the forum! I am from the UK too, and I also see Professor Mathius' team in London. I'd ask about a referral to a specialist if I was you, waiting times in general are very long, so even if you don't feel you need it now, you may feel differently by the time you actually see them. I know there is a physician list on the PotsUK website as well as on dinet, so you can try and find a doctor with an interest in pots in your area x

[sarahjanewebb]

Hi I am on the Berks/Bucks border. I have suffered with a NPDH (New Persistant Daily Headache) since Nov 2011 and was seeing a Neuro it was following a second opinion that he noticed a change in my BP and HR and sent me for my TTT to the Hammersmith Hospital where it was found I had pots

There is a consultant there by the name of Dr Boon Lim. I am yet to meet him, however I have met with the syncope nurses who were lovely . I am hoping to get an NHS referall now (long story wa covered under private healthcare! Not now) but as you can imagine this can take weeks.

Hope you find a consultant who can help x

[Alison]

Thanks for your replies. A daily headache sounds pretty unpleasant SarahJane. Hope you get some improvement.

I think I probably will ask for a referral to a specialist. I'm dreading going back to my GP, I'm wondering if I've become a heart sink patient to her. During the last consultation, when I mentioned that I have tingling in my face she suggested it might be my teeth. (Of course it's not my teeth, what is she thinking!) I felt she is really not on the most helpful wavelength. I was so gobsmacked that she said that I didn't actually say anything back to her. Also my brain doesnt work that fast at present to be able to reply to things people say articulately.

How I wish my problems had turned out to be related to my thyroid or diabetes - how simple that would be.

[sarahjanewebb]

Thanks for your replies. A daily headache sounds pretty unpleasant SarahJane. Hope you get some improvement.

I think I probably will ask for a referral to a specialist. I'm dreading going back to my GP, I'm wondering if I've become a heart sink patient to her. During the last consultation, when I mentioned that I have tingling in my face she suggested it might be my teeth. (Of course it's not my teeth, what is she thinking!) I felt she is really not on the most helpful wavelength. I was so gobsmacked that she said that I didn't actually say anything back to her. Also my brain doesnt work that fast at present to be able to reply to things people say articulately.

How I wish my problems had turned out to be related to my thyroid or diabetes - how simple that would be.

I can completely empathize with this I feel I am a heart sink patient I attend the doctors monthly for my sick notes, with various different new symptoms. Many of them I am sure are from the new meds. I feel I am getting no empathy from the doctor see is doing no research into my condition (has already mentioned that I am the only patient in the surgery to have the condition) I have severe brain fog like you so get easily distracted I can go in with a list and even forget I have taken it

It isn't easy and I feel I am constantly fighting an uphill battle. Fight for your referall I know I am going to !!

[LittleOne]

Alison if you feel your GP isn't the one for you then you are well within your rights to see someone else. Maybe find out if there's a GP that has an interest in neuro/cardio. It took me 3 GP's before I found one who had read an article about POTS and didn't palm me off. Now she's stuck with me!

Also write everything down. Symptoms, timeline, meds, questions and most importantly what you want to happen. If you ask for something, they can't refuse. It's your health, not theirs.

When are you going back? x

[Alison]

I am going back next Wednesday. I will stick with this GP - she is the one who diagnosed me, the one I saw last year is a cardiology specialist, but he didn't diagnose me. I wish I could leave my health in my doctor's hands and have her figure out what is going on with me, instead of feeling that I have to do it myself. Like yours, SarahJane - I don't think she is doing any research - but how do they have time with all the other patients to see. I have considered cancelling the appointment and just trying by myself with alternative medicine - accupuncture, medication and deep yoga breathing, but maybe I should try to get a better understanding of what is going on with me? I have a couple of new things which I hadn't thought to mention, but now I have googled them they seem quite relevant to me - I don't know what she'll make of them.

[corina]

Alison, in the Pinned topic section you can find a topic on spreading awareness by sending your doctors (the ones who aren't dysautonomia specialists) a brochure. The brochures will be send by a DINET volunteer!