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Being new to this whole diagnosis thing, I'm really wondering how best to go about being treated. My Dr is lovely- Julia Newton (Newcastle) and I don't want to seem like a difficult, bossy patient...

I've tried my beta blocker (atenolol) and it just worsened my fatigue considerably, even though it did make me feel better in other ways (not feeling so physiologically 'stressed'). Her next suggestion to my GP for me to try is Diltiazem, a calcium channel blocker. I'm feeling rather reluctant to take it though as I know these too can lower BP and mine has been low even without meds. I was wondering if it would be okay to go to my GP and suggest she write to Julia asking if I could try Ivabradine, as I believe this lowers heart rate but NOT blood pressure.

But then that makes me feel as if I am being a 'difficult patient' by not trying what I've been told to! aaaghhh! Any advice??

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Ask about it and ask to see if they'll let you try what you want if if they don't want to let you, find out why.

If you need to, apologize about asking. One good thing to say is that all (maybe it's only seemingly very many) POTS patients are like this, they are very careful about trying new medications because they are so sensitive and their reactions are so unpredictable (and therefore, they also do a lot of research to try to figure out what they think they may not tolerate). (Obviously they are also miserable enough to want a medicine which will work to eliminate symptoms and go after that too).

Honestly, at this point, I have difficulty between distinguishing how I relate to food and medicine. If I had a pharmacy available the way we have grocery stores, I would hardly feel like it's a big difference. I feel that my autonomic nervous system makes me need to drink at certain times, take medicine at certain times, avoid foods or medications which give me bad reactions, or take medications which let me eat or drink differently. All of my choices are either to control highly variable pulse and blood pressure or to get at the same nervous system which controls blood pressure and also digestion. When I think about that and the fact that I can't get a medication by myself, I get a little more brave about asking.

You need help. This is the person who is supposed to help you. You may be a nuisance but you don't have a big choice if you want to feel better.

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Don't apologise- just say you have heard from othe rPOTS patients who had more success with ivabradine. Atenolol even on a paeds dose took my bp down to 70s systolic lying down!

Ivabradine works for some but I'd suggest the thing to try is OCTREOTIDE. I keep banging on and on about it but that's because it's making such a difference to me. I've even had some press coversage which you can read here: http://tinyurl.com/33b4z8y

Nothing worked for me the way this stuff does. See what she says...

There has been some research on POTS and octreotide in the States that shows great promise. But because it's an expensive drug no one in the UK seems willing to give it much of a chance. But I'm great on it. Ivabradine just succeeded in making my bp drop further and giving me awful migraines. x

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You need help. This is the person who is supposed to help you. You may be a nuisance but you don't have a big choice if you want to feel better.

That's a good point!

She wants me to try the CCB next so I'll go along with that but if I feel bad from that, I'm going to ask about Ivabradine.

Oh and thanks Persephone too, going to read your article and I will keep Octreotide in mind as another possibility to request! And hey, who wouldn't be banging on about a medicine if it's given you your quality of life back like that! :-) So thrilled for you! xx

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LOVED the newspaper article! :) It sounds like a wonderful hospital you were treated at. Thank god for caring and determined Doctors eh!

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