Flecanide and tremors

[RajaRua]

I have developed tremors in my right hand and also in my right leg. I also have mild tremors in my left hand. I have been to my GP and she did some test on my wrists which might signify Parkinsons disease but they were ok. She said she'd recommend seeing a neurologist to have MRI and be sure I don't have Parkinsons. She also said it could be to do anxiety as I've been suffering with that for the last few years and more so since Covid came to town!

I don't have private cover so would need to pay for attending a private hospital. There's a 2-3 yrs waiting list to see a neurologist in the public system here in Ireland. I'm prepared to pay but I just wanted to check if any of you on Flecanide long term have developed hand or /and leg tremors. I'm on Flecanide now for going on 8yrs and in Septrember had to increase my dose on my EP's instructions to 150mgs twice a day (from 100 mgs twice a day) I had a slight tremor in my right hand before that. I know that some of you on here think 150mgs twice a day is unusually high but I'm assured that my EP is very higly trained and experienced. So I carry on. It is helping my AFib Thank God!! But I'd much prefer to be taking less and hope at some point to get my dose down again.

I'd appreciate anything you might want to share re Tremors. I really love this site and all the wonderful people on it. Thank you for sharing your info and stories.

[WillRon]

I was taking 100 mg twice each day and I would have tremors like yours also. I told my EP and he lowered my dosage to 50 mg twice daily but it wasn’t enough to stop breakthrough AFIB episodes. I had already tried Sotalol but it made me sick. So he did a cryoablation and I feel great. No more meds.

[RajaRua in reply to WillRon]

Oh Lucky you WillRon! What I wouldn't give to get off the meds!

[RajaRua in reply to WillRon]

WilRon, Did you have tremors in your leg or legs as well as hands?

[Finvola]

Raja - it might be worthwhile investigating the EU cross-border healthcare directive which allows private treatment in an EU country. Northern Ireland may still be part of that facility as we still follow some EU rules here which could mean you see a neurologist privately here in the North and reclaim your fees via the directive. If I find out more I'll post it

[Finvola]

Just found this article from the BBC which indicates that the Irish Government has a temporary scheme in place. There are good private hospitals in Ballykelly and Belfast and your wait could be only a week or two. Your GP or health trust should be able to help or you could ring the hospitals direct.

bbc.co.uk/news/uk-northern-...

[RajaRua in reply to Finvola]

Thanks for that Finvola. I couldn't be much further away from Belfast down here on the South west coast in Kerry. I'm definitely going to talk to my GP about it though. The thing is that if I do see the neurologist and she finds something (other than Flecanide poisoning!) She can fast track me to the public neurologist. And I can go on from there. I can't afford to continue having private treatment sorry to say. Are you living in NI?

[Finvola in reply to RajaRua]

Yes, it's a bit far to negotiate from Kerry but, as you say, a diagnosis would get you on the right path - that's what I did for my AF. I live on the Causeway Coast - the two ends of Ireland with the best scenery (in my biassed opinion!)

[RajaRua in reply to Finvola]

Thanks Finvola. I've been up that way just once in my life and yes it's spectacular alright. To be honest I'm feeling a bit fragile these times and the thought of the journey up to Belfast doesn't exactly fill me with delight especially in these Covid times. I'd maybe have to go up a few times for an MRI then another app to see consultant for the results? I'd probably spend the money I'd pay here on travel and accomodation. What do you think?

[RajaRua in reply to Finvola]

Also I'd probably be seen within a week or so here in Kerry at the private hospital and with luck I'd get an MRI in a week or two from then.

[Finvola in reply to RajaRua]

I was thinking about that Raja. If your intention is to transfer to your health service for treatment, then the total cost to you would be the initial consultation and that could be done at home. You wouldn't have any travelling to do and possibly no tests except the MRI to pay for but do check the cost of things such as the MRI.

Travelling at the moment wouldn't be my first choice either so I know how you feel. We always took a week or so to get to Kerry but that was to savour the delights of Galway and Clare en route - the whole west and north coasts are superb.

Best wishes with your decision - I agree with you that it's probably easier and less stressful to get the initial work done at home.

[RajaRua in reply to Finvola]

Thanks for that Finvola. I think the MRI is 100E here and the consult is 170E. Not sure if I'd need to go nback for the results.... Think I'll sit with it for another small while. Thanks for your support. I Thought I'd hear from others who got tremors on Flecanide. They may show up yet..

[KMRobbo]

On flecainide 10 months, no tremors

[RajaRua in reply to KMRobbo]

Thanks for that KMRobbo

[Outtheresinger]

I was on 100mg of Flecainide twice a day and had tremors in my left hand and leg and also dizziness. Post ablation with EPs consent I weaned myself off the Flecainide very slowly. Dizziness gone but I still have a tremor in my left hand but I think it is a lot better than before. I hope you get it sorted!

[RajaRua in reply to Outtheresinger]

Thank you Outtheresinger, that's very helpful indeed.