Orla

I know this is a long shot, but I noticed some people from the UK were here so I thought I would give this a go. Has anyone seen Dr. Julia Newton in Newcastle, northern England? I would be interested in what tests she ran. I have already had a positive tilt-table test but might have a chance to see Julia Newton who I think is more experienced than anyone locally. But I am trying to decide whether the effort and possible expense is worth my while (even if I manage to arrange an appointment). I have ME/CFS as well as POTS and she has started doing research on autonomic dysfunction in ME/CFS patients, so it could be interesting to see her. Anyway I would be interestd in hearing from anyone who went to her and what tests she did, Thanks, Orla

Hi Maggy, sorry to hear about your reaction to the drug. Hope that doesn't start happening to me! I'm probably safe enough though seeing as I have been on it so long. I am on 5mg twice a day. It does seem to control the heart rate on standing (it is not totally normal but a lot less high that it would otherwise be, I could go up to 7.5mg twice a day), and takes the edge off a little (symptoms wise) when I stand, initially anyway, but unfortunately it has not had as much an impact as I would like on my overall health. I still don't like prolonged standing as I still feel uncomfortable. Also I don't feel that different overall, though I have to stress that I also have ME (called Chronic Fatigue Syndrome in the US - though strictly speaking the diagnostic criteria for both are different, so not everyone diagnosed with CFS will have what would be recognised as ME). ME is probably my main problem, with the POTS as a related one brough on by it, so it was always likely that any treatment for POTS was only going to be of limited effectiveness anyway as it only tackles part of the problem. I had thought my exercise intolerance would improve somewhat on the drug, or at least when walking, but this has not happened. One weird thing though, I think it may have helped my sleep. I am not sure about this, but I noticed the odd time when I forgot to take my afternoon tablet that I had more difficultly getting off to sleep than when I did take both tablets. I cannot be absolutely sure about this, as I would need to experiment more to find out. I am taking a sedating anti-depressant at night to help with sleep also, but still feel that the Procoralan has helped a bit with the sleeep as well. Since I have gotten sick I have had a bad problem with my sleep pattern. I often cannot sleep until 3am or later. I have taken many things and tried many things to get to sleep earlier, but even though I have had limited success with some things the pattern always tends to always revert back to sleeping from about 3-4am to 11-12pm and sometimes much worse. The few times I forgot to take Procoralan it took me longer than usual to get to sleep, though I have only forgotten a few times, and my sleep pattern is a bit changeable so I cannot be absolutely sure of a link. I may be going for some tests in a few months so might have to come off the Procoralan for a shortwhile, so that will give me a proper chance to see what happens with my sleep when I am not taking it. So no magic wonder cure I am afraid, but possibly worth trying if people can get it and couldn't tolerate Beta Blockers, Orla

Just a quick reply tonight. I have been on Procoralann (Ivabradine) for over a year now. The only side effect that I get is a biazarre, but not a painful or scary, thing when I go from a dark room at night to a room with a light on. For a little while (a minute or two at most) it is like as if I can see lines of flowing light in front of me. It is not quite as bad as it sounds! Acutally as side effects go, this is mild and even sort of entertaining. This thing with the lights only lasts a little while until my eyes adjust to the light. It seems to only really happen if I have been asleep and wake up and switch a light on in the middle of the night - when it is dark outside. I can see ok enough not to have an accident. If you had to drive you would need to make sure that your eyes had adjusted properly, though it never lasts long for me and it would be gone by the time I would be dressed. I don't drive myself. I had tried Half-Inderal LA before and felt worse so gave it up. It's late here now (I am in Ireland) so I will write out more on this again hopefully tomorrow, O