Just Wanted To Say Hi.

[sj75]

Hi All,

I just wanted to say what a great site this is, so much information and so supportive. I live in the UK and have had the symptoms of POTs since 2006. It started in the Feb after i had had surgery for a heart problem and for 3 years after that i was deemed a medically anomoly and they put all my bizarre symptoms down to my heart problems despite there never being any evidence of this. Finally in July this year, the penny dropped and my consultant suggested i may have POTS and looked back at my old TTT and other tests. In my case my pulse and bp go up and although i have some residual symptoms all the time i seem to have flare ups that can last for months.

Anyway, i obviously dont want to have POTs but being able to explain and put a name to my symptoms has been a huge leap forward as i was getting severly depressed by the uncertainty and fear about what was going on and was getting fed up of being told i was suffering with anxiety etc.

Im fairly new to it all and was wondering if anyone could help advise what sort of dr i should see, what sort of medications i should be looking at (am not a fan of taking anytihng i dont have to as im really sensitive to meds) and what sort of treatment plan i should be on as it seems to be something that there is little information on over here. At the moment i am on bisoprolol and asprin.

sj.x

[Mrs. Burschman]

Hi, sj! We're glad you found us, though sorry you had the need!

What kind of doctor you can go to for POTS is pretty variable. I was diagnosed by a neurologist, but a lot of people are treated by cardiologists, too. The most important thing is to find someone who knows about POTS, or is willing to learn if they don't. And find someone who is willing to work with you. Treatments are really variable, and it often takes a lot of trial and error to find something that works. It's not as simple as some conditions might be.

Good luck in finding the right doctor -- and some good answers!

Amy

[arizona girl]

Hi SJ and welcome. This site has been helpful to all of us and made a huge difference in me getting diagnosed properly. If you go up when you stand and/or talk it is probably the hyperadregenic form of pots. Dr. Grubb prescribed labetalol to me and it seems to be working. I tend to overcome medications after a while, it's only been two months, but so far so good. I was on propranonol which is just a beta, it made my standing hypertension worse. Is bisoprolol only a beta too? You may need a alpha beta, like labetalol or bystolic. Labetalol is real cheap and bystolic is real expensive.

Did you get copies of your TTT test to read yourself? It'd be interesting to know what happened to you. Do you ever actually pass out? I always get copies of everything. We also understand here, the depression of not knowing and the laziness of Docs wanting an easy answer who contribute it to anxiety. Just so you know that while anxiety can be an understandable factor, most people who have dysautonomia do not have a higher incidence of getting anxiety then people in the normal population. I think the anxiety is a normal feature of the frustration of not knowing what's wrong. Also people with the hyperadregenic form of pots, sysmptoms often resemble anxiety, but they are caused by the body's inability to function properly.

It's interesting though how once you know what is wrong and why how that general anxiety just falls away.

Also Dr. Grubbs office in toledo, may be able to refer you to someone in the UK. Hope this helps you!

[sj75]

Thanks guys,

I am currently under a cardiologist who has always given me excellent care where my heart is concerned. Im not sure yet how much he knows about POTS although it was him who made the diagnosis. I have a copy of the TTT which shows my pulse doubling and my bp fluctuating quite a bit but climbing overall. Having the diagnosis has definately made the things that have happened to me slot into place. The bisoprolol is a beta blocker and ive definately noticed an improvement but its such a balencing act as it makes me wheezy and more tired (if thats possible). I think it is the adrenergic form that i have, i never actually pass out (so far) but get to the verge of it especially if standing still.

What sort of help and treatment is available for pots sufferers as ive struggled here in the UK as no one has heard of it which makes it difficult for people to understand why i cant function. Are there any treatments or therapies that are suggested? do any of you use any walking aids that help?

[arizona girl]

As I said earlier if you do have hyperadregenic pots, then beta alone won't help as much. When on propranolol at a higer dose, it caused extreme fatigued and I was like a walking zombie. Of course it did lower my HR and BP, but at what cost, I was completely way more ill on it and as soon as I stopped taking it those new symptoms went away. I have not experienced any of this on the labetalol except some mild fatigue at times when I need to walk for shopping and such. So yes your beta can be causing extreme fatigue. I use the shopping cart as my walking aid, but I can manage most of the time without one, unless it is really hot or humid. Your symptoms sound a lot like mine and after many BP meds Labetalol seems to be working for me, though it has only been two months. What else was wrong with your heart, as this may be an underlying cause?

Well I live in the united states, so I can't advise you on the UK, like I said before you could call Dr Grubb's office at the vascular center at the University of Toledo in Ohio, USA. You can google online and get his info and read his research. They may know someone in the UK you can go to. Otherwise search the forum for the other people who live there and read their posts. There are other people on here from the UK.

[Goldie]

Hi sj75,

I'm from the uk also - west midlands. I was refered by my local cardiologist to an autonomic specialist in London called Professor Mathias, he is one of the top drs in the uk that knows about POTS. It was quite a wait to see him on the NHS - I waited 9months! I know some people pay private but I couldn't afford too. I see him at the national hospital neurology & neurosurgery in queens square,London.

When I first saw him I spent 5days down in London while he ran a batch of autonomic tests on me,I think this was so he could work out your best treatment plan & give you a definate diagnosis.

I'm currently on midodrine but there are different drugs for different people.

I'd mention to your cardiologist about being reffered.

Hope your ok xxx

[sj75]

Hi Goldie,

Thanks for the reply, nice to find someone else on here from the uk with this condition.

Ive taken down that professors name to give to my cardiologist.

What sort of tests do they do? (am just wondering if i can get any of them done through my cardiologist to get the ball rolling so to speak.)

sj.x

Hi sj75,

I'm from the uk also - west midlands. I was refered by my local cardiologist to an autonomic specialist in London called Professor Mathias, he is one of the top drs in the uk that knows about POTS. It was quite a wait to see him on the NHS - I waited 9months! I know some people pay private but I couldn't afford too. I see him at the national hospital neurology & neurosurgery in queens square,London.

When I first saw him I spent 5days down in London while he ran a batch of autonomic tests on me,I think this was so he could work out your best treatment plan & give you a definate diagnosis.

I'm currently on midodrine but there are different drugs for different people.

I'd mention to your cardiologist about being reffered.

Hope your ok xxx