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Pot's And Ist


tilly
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Hi to everyone i have just joined the group and i live in the uk,

I have not found any information anywhere or any support groups here for people with pot's - i have been diagnosed .... ( "well it's a working diagnoses with "ist" / pots") and have felt quite alone with my problems of the tachycardia and the tiredness and fatigue ... it has been difficult to describe to doctors what your heart rate is doing every time you move ..... they have seen how it is on the ecg tapes and so on ( hence the diagnoses ) my cardio says it is rare what is happening and other doctors say its very unusual how my heart rate accelerates when i move .... i look forward to sharing my experiences with you ... ;)

Tilly ...

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Hello Tilly, I'm in the UK. The main charity for us in this country is the Syncope Trust- you can check out their wesbite at www.stars.org.uk.

Ramakentesh- understanding of POTS and dysautonomia is very limited. When I was diagnosed 4 years ago, I was told that I was one of just six people in the whole of Scotland (5 million) with POTS.

I agree with you that the condition isn't uncommon; but in the UK, diagnosis *is* rare. It's much more likely to be treated as vasovagal syncope or M.E in my experience and that of many folks I know here with POTS.

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hi..

i think the docs all ower the world need an update.. live in europe (not uk). Was told it was so seldom. but now my cardio says its not so seldom as they belived.. i think there is some white me/cfs that have pots or something like that..

And i have seen many pots people from uk online..

best of luck.. ;)

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I think it is about time we had a PURE POTS set up in the UK... it is an illness over here which the doctors are happy to send you home and forget about you.

They havent heard of it, dont know what to do with it, so they mostly do nothing, I have been fortunate, from my gp to our profs....

but I gasp at times at what I see/hear people flailing about trying to get some sort of help.... As it is not highly diagnosed over here... very little help is available.. there is very few knowledgeable people dealing with the illness.....

Stars is the only widely known body that has in-put... they are great and also have sessions at the arythmia alliance conferences which are WELL worth attending...

CFS/ M.E manages to get some assistance for their people,ME North EAST helped us greatly. eds has managed to get a forum etc going...(another illness with few experts in)

Maybe its something we need to consider....as there are now a few of us on the forum.

Gwen

PS persephone... you have a p.m. thanks!!!

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Hi I live in Scotland and I was also told it is very rare. Before I was DX I had never heard of POTS and neither had my family or friends My GP actually said to me " I have no one like you on my panel and I do not know what to do with you. I was admitted , yet once again, to hospital in April this year and I was seen by 5 doctors and not one of them knew anything about POTS - yes you guessed - I was told it is very rare.

From my experience, when I had a different symptom I would check the site and someone would have had the same- so for me I got all the help I needed from the people , who despite their own condition and symptoms took the time to support people like me. We in the UK are not afforded with the medical personnel that the USA has so until our doctors gain more knowledge into the complexities of this condition, we will continue to be told " it is a very rare conditon" What I do is when I am admitted to hospital I talk about is as much as I can. My family and friends are all aware of my symptoms and I made a leaflet for my colleages at work. Even my grandchildren know about my condition. I am just glad I have a very good cardiologist who DX me within three months of taking on my case. I am now on fludrocortisone and this had made a tremendous difference to my way of life.

Tilly, I hope you get the support and encouragement you require to cope with what ever health issues you encounter.

Take care

Liz B X

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Thank you all so much for your kind welcome B) .... i intend to send pm's to all of you i have been very poorly with my condition and some days i can hardley leave my bed, the fatigue and tired ness are all consuming, i read all of you points about doctors having little knowlege of this debilitating condition ... i was thrust into a world of utter disbelief when i became ill .. i truely did not know what had hit me, it has now been two and a half years of suffering it to a severe degree ... i have read that it is a life changing event an that's for sure ....... i struggled for two years in and out of the hospital and literally being sent home in the same state that i was addmitted ..... high heart rate dizzyness and extreme tired ness .... the heart rate being the main thing that has been invesigated, with ecg tapes and self activating tapes .... the doctors kept on saying your a mistery we don't know what is wrong, and then i would be on my way home yet again .... the cardiologist that i eventually saw said that what is happening is rare and that i was one of a very small handful of people he had come across .... when on the heart monitor they could see that my heart rate was all over the place everytime i move up it goes 114-129-133 just by moving around and when i stood up and walked 150 plus they looked on virtually scratching their heads ..... also i was having big fluctuations in my bp, and i can not do anything i am constantly compromised by the high heart rates and it is hard to get anyone, doctors to understand just how debilitating that is .... i have lost 95% of a normal life .... i struggle to get through each day basically managing the best way i can and this has only come with help from people like yourselves .... i want to help in making more awarness of pots and ist ... my cardio says it is pots what is happening to me but he writes ist on letters about me he says there is no definitive test .... they are overlapping syndromes ........ can you all relate to this situation ???? .....

kind regards tilly

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Hi Tilly

What can I say, but Welcome To Our World B)

I live in Hampshire. I am in and out of my local hospital every few months, usually when I keel over in the street and people call an ambulance. I was actually in 2 weeks ago during the last Bank Holiday due to very low blood pressure, and I couldn't stand without feeling dizzy or faint.

When I was in the process of being diagnosed I was sent up to The National Hospital for Neurology and Neurosurgery in Queens Square London (right next door to Great Ormond Street Hospt) I was diagnosed with POTs up there in August 2006 after lengthy autonomic tests.

My doctor is called Professor Mathias, he's a lovely man and has all the time in the world for you. I have to go up there for clinic appointments every 4 months, and although I don't see the Prof every time, I do see members of his excellent team.

My GP told me that he had heard of autonomic disfunction, but had never met anyone with it in all his 30+ years of practicing.

As well as being tachycardic (which I take Sotalol to control it) I am also brachycardic, my heart tends to slow right down and has actually stopped three times. Because of this I had a permanent pacemaker inserted in September 2007.

Like you I searched the internet for a forum of some sort to do with POTs and found this one. Although I very rarely post, I do read it a lot and find the people on it all very supportive and friendly.

At the moment I'm having problems with my blood pressure. I'm on Fludrocortisone to raise it, but it's far too high at the moment - yesterdays reading at the GP's was 188/115.

This happened last year, I was taken off the Fludrocorisone and put on Midodrine which was awful. I had such terrible side effects with it that I ended up in A&E, then was in CCU for a week (Cardiac Care Unit) so I never take that again!

In November 2008 I was taken off Fludrocortisone altogether as my blood pressure was ridiculously high.. 3 weeks later I was back in A&E with a blood pressure of 58/45 no wonder I kept feeling faint!

So even after nearly 3 years of being diagnosed, they are still fine tuning my medication.

I went up to Queens Square 4 times during April... we go by train as parking is a nightmare up there. I had a clinic appointment and 3 occupational therapy appointments. The OT's are really good and gave me some brilliant ideas to help me around the home. She also did a fatigue management diary, and various other things with me.

take care and good luck with it all

Sandra (aged 47)

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Hi Tilly

Sorry you have had a rough time. When I see someone say "my doctor says this is rare", I interpret this as "my doctor doesn't have the expertise to deal with POTS".

I went around the health system passively for many years before I took charge, sent an email to one of the specialists I had seen and said "I need to see someone with expertise in POTS and dysautonomia. Are you that person or can you recommend someone". He recommended Prof Mathias, who was an excellent choice because I had other neurological issues but there are other perfectly competent specialists around the country with the necessary expertise and diagnostic equipment - it's just finding them in the first place. You can either go down the neurology route or cardiology and the latter seems the more obvious option to try first. From your story, I would try for the Manchester Heart Centre if you live anywhere near them or a similar centre if you live elsewhere. Maybe you could get an onward referral if your local team don't have an answer. As persephone suggested, STARS is a good starting point and you can call them for a recommendation of who to see in your area.

Hang in there. Once you see the right person, life is much less stressful because they understand how you feel and don't need to be convinced that POTS is life altering. And, of course, they have the best chance of making you as well as possible. There are no magic cures here (though POTS can be a short-medium term problem), but there are treatments around that can make all the difference to quality of life so don't give up hope.

Best wishes

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hi Tilly, I live in Glasgow and can relate to all you are going through. It took many years for me to get diagnosed properly too and when I was attending a Cardiologist, he also said that what I had was very unusual, had never seen anyone like me. He then became quite excited when he did his own research and eventually diagnosed POTS. The only trouble was he didn't know how best to treat me and I ended up in hospital with suspected heart attack/stroke symptoms. I was very ill but it turned out that the medication he gave me was making me worse but even the hospital docs didn't realise that. I was eventually referred to see Prof. Matthias In London as well and my in patient visits to Queens Square have been very worthwhile as I have slowly made some improvement of my symptoms with help from medication prescibed by him. He is a lovely man and shows so much interest in your condition and does his best to help you get a better quality of life. I do hope you get some help and understanding. This forum has been a Godsend to me and gave me the courage to seek out the treatment that I needed otherwise I don't know where I would be. Whereabouts in Scotland do you live? Let me know if I can help you further, Helen

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