Griffin Posted March 20, 2010 Report Share Posted March 20, 2010 I am going into hospital to be started on Ivabradine for my tachycardia which will be monitored and have been told I will have to do exercises. I am fretting about this as I have Chronic Fatigue Syndrome and can't exercise, and will be exhausted just from the journey to get there, also I get really ill if I overdo things. I am mostly bed bound. I have found in hospital before that they have no understanding of this and dismiss my concerns and I have really suffered in hospital before due to this and I am actually quite scared of the damage it will all do to me. Quote Link to comment Share on other sites More sharing options...
tilly Posted March 20, 2010 Report Share Posted March 20, 2010 Hi Griffin .. i wonder why you have got to go intohospital to start the iverbradine ? i am to start this but i do not have to go to hospital, i am in the UK also ... i too have inappropriate sinus tachycardia and pots ... i know what you mean about execise making things worse, i went on a cardiac rheab programe and i struggled a lot with minimal exercises .. and if i tried to push myself it set me back big time .. i would suffer for a couple of weeks because of it ... i can also relate to people not being sympathtic to fatigue problems ... they don't even thry to undersand ... Quote Link to comment Share on other sites More sharing options...
Griffin Posted March 20, 2010 Author Report Share Posted March 20, 2010 I don't know why it has to be done in hospital. It seems to be the fact that they want to monitor the dosage to get it right. But I don't really know. The heart surgeon has been really strange all the way through and it has taken two years to get this far. He seems quite incompetent or his secretary is. I am really fed up with him but don't know who else to go to. Quote Link to comment Share on other sites More sharing options...
Rachel Posted March 20, 2010 Report Share Posted March 20, 2010 Do you have a doctor who could write a note for you that explains your limitations?Rachel Quote Link to comment Share on other sites More sharing options...
tilly Posted March 21, 2010 Report Share Posted March 21, 2010 I don't know why it has to be done in hospital. It seems to be the fact that they want to monitor the dosage to get it right. But I don't really know. The heart surgeon has been really strange all the way through and it has taken two years to get this far. He seems quite incompetent or his secretary is. I am really fed up with him but don't know who else to go to.Hi Griffin ...which part of the UK are you, who diagnosed your IST ? .. this is rare and patients with IST struggle to get diagnosed .. there are quite a few members on here from the UK maybe, some one can recommend a cariologist to you ... have you been on any other meds for the tachy .. i am statrting my ivrbradine this week ... and would be interested to hear from anyone who knows why you will be hospitalised while taking iverbradine ??? is it because you have other conditions ? Quote Link to comment Share on other sites More sharing options...
Griffin Posted March 21, 2010 Author Report Share Posted March 21, 2010 Rachel - no I don't have a doctor who could explain my limitations. I am in the usual position of nobody really being interested in my CFS. It is endlessly frustrating.Tillly, I am in West London and cannot travel any distance. So limited. This is the heart doctor who diagnosed my IST a year ago. It took five years to find him so not confident about finding another suitable specialist. I think he is very nervous about prescribing Ivabradine so perhaps it is that which makes him say it has to be in hospital. He was going to prescribe fludrocortisone but changed his mind. I don't know why. He has been hopeless so far. The single benefit is that at least I do have a diagnosis after six years of getting no one to listen to me.I am very bad this w/e with the CFS, more exhausted than ever, and dreading this hospital lark. Quote Link to comment Share on other sites More sharing options...
tilly Posted March 22, 2010 Report Share Posted March 22, 2010 Rachel - no I don't have a doctor who could explain my limitations. I am in the usual position of nobody really being interested in my CFS. It is endlessly frustrating.Tillly, I am in West London and cannot travel any distance. So limited. This is the heart doctor who diagnosed my IST a year ago. It took five years to find him so not confident about finding another suitable specialist. I think he is very nervous about prescribing Ivabradine so perhaps it is that which makes him say it has to be in hospital. He was going to prescribe fludrocortisone but changed his mind. I don't know why. He has been hopeless so far. The single benefit is that at least I do have a diagnosis after six years of getting no one to listen to me.I am very bad this w/e with the CFS, more exhausted than ever, and dreading this hospital lark.Hi Griffin ... i know how hard it is to try and tell people how fatigue affects you .. i do not think i would have understood it either before i became ill with ist/pots, ... but now ! .. i have days when i can hardly leave the bed and i just do not know whats going on with me, so so tired heavy really fatigued, a type of fatigue you can not describe and it is not helped by lying down either .... i thank god i have a suportive family ... did you see the POTS DVD ? it is very informed and really usful to show to you doctors, it may help them to understand whats going on .... i have a cardiologist who is well informed about these conditions, but i live opposite end of the country to you .. POTS is not his area of expertese and so i intend on going to see Professor Mathias when i can, he is in london .. is he near to you ? .... just an idea can you get a occupational therapist to help in anyway, maybe they could explain how the CFS affects you, get them to read a little about POTS ....i hope you start feeling better soon and the fatigue will ease up for you .... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.