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Attention All Uk Pots Patients


persephone
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This may be useful for all you UK POTS folks.

I ended up in hospital in Dundee after a bad crash in St Andrews. The treatment I had was amazing. The EP there has worked with David Robertson and been to Vanderbilt! I had 2 consultants looking after me.

We tried Midodrine again but that was no good. So they read up on things, and went to a haemtologist to ask about Erythropoietin. It is really helping me. I have to inject myself but it's ok!

I am also on Ivabradine- an F channel blocker- essentially, a beta blocker that DOESN'T lower blood pressure.

Aside from getting combination of drugs right, I also:

Saw an occupational therapist

Saw a neurologist about altered consciousness and sparkles in my vision

Saw a psyciatrist about how to cope with the changes in my life as a result of POTS

Saw a physiotherapist

Had one to one pilates classes

Had group cardiac rehab fitness classes

Had a room to myself, ensuite with TV!

Had my own personal chef who made food to order

And this was on the NHS!!!! They kept me for 7 weeks- it'ssupposed to cost the NHS ?500 a night to keep someone in hospital. My bed alone was ?24,000! They wee absolutely brilliant. My treatments are very expensive but they told me I was "precious".

They were wonderful and I think that maybe, just mayb, they have given me a life back, instead of an existence.

Anyone who wants to get decent treatment for POTS should try Dundee. It sounds unlikely, but it's the largest teaching and research hospital in Europe. The best hospital I've ever been to.

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That's awesome, Persephone! Not about the crashing, but the care you got. :)

I'm planning on living in the UK- starting with postgrad school there next year, and was always a little skeptical about Prof. M being the only one over there. Wow- definitely didn't realize Dundee was so renowned, at least not what I'd expect.

Thanks for sharing!! :ph34r:

I'm sorry you found out the hard way, but I hope you continue to improve on the new treatment.

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The care that you received sounds amazing!

I am very happy to hear Ivabradine is no longer in studies and has been officially released. When I was diagnosed at Mayo-Rochester I was told about the study going on with Ivabradine and how it would probably really help me as I can not take beta blockers because I have asthma or handle practically any of the typical POTS meds. Mayo-Rochester tried to get me in the study but back then I was in quite the POTShole and the idea of traveling overseas just wasn't too appealing.

I am extremely skeptical about the timeframe it will take for Ivabradine to be released in the United States, IF it ever gets released. Sadly, the doctors explained their reasons of why they did not think it would be released here - mainly, pharmacetical companies wouldn't be interested because it wouldn't make them enough money. (I'll save my rant on this topic for another time and place.) :ph34r:

Now I know people from all over the world come to places like Mayo in the United States or even to see Dr. Grubb but does anyone know how it works for people going to the UK for medical care? I knew what the laws were pre-September 11th regarding bringing meds back into the country but I'm sure they have changed and I'm out of the loop. If anyone has any idea or personal experience with doing this, I'd love to hear it!

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