Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Lone Vagal AFib and Sense of Smell I have lone vagal afib with bradycardia that seems to be triggered by smelling strong ordors. Does anyone else share this problem or shall I assume it is " all in my head " ? Dee Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner To the person that wanted to know if Tiklosyn was available in the UK, it is called Dofetilide here. Don't waste you time trying to call Pfizer they are a very unhelpful bunch. They will not give out their names due to the animal rights lobby and if you do call them in Sandwich Kent they will just refer you to your Dr. How else can you find out, 1. try the pharmacist. 2 THE BPJ it can be found in any reference library. 3.Try your DR but it will have to be in a specialised Hospital. 4. Get referred to St s. C Uk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Hi I am about to see a new cardiologist next week, do you think it is worth mentioning it to her, I am not taking any meds apart from warfarin because of the effects. Quite a few people have had results on this site with Dofetilide. ine Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner To the person that wanted to know if Tiklosyn was available in the UK, it is called Dofetilide here. Don't waste you time trying to call Pfizer they are a very unhelpful bunch. They will not give out their names due to the animal rights lobby and if you do call them in Sandwich Kent they will just refer you to your Dr. How else can you find out, 1. try the pharmacist. 2 THE BPJ it can be found in any reference library. 3.Try your DR but it will have to be in a specialised Hospital. 4. Get referred to St s. C Uk Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 ine, The licence for use in the UK use to be " must have tried three anti- arrhythmic drugs one of these should have been Amiodarone. That was back in 2000. I doubht very much if they will give it to you at the first consultation as it is a type three med. I would be they will try soltelol or Flecaninide as the type 1 med. Is there anybody in the UK taking this med that can update us. C Uk Hi I am about to see a new cardiologist next week, do you think it is worth mentioning it to her, I am not taking any meds apart from warfarin because of the effects. Quite a few people have had results on this site with Dofetilide. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 I have tried the following Sotalol caused low BP and lead to me having a PM Amerodione I took for 6 weeks and did not want to take it anymore because of the potential side effects Atenelol caused dizzy spells (don't seem to be able to tolerate Beta Blockers) Flecainide I had some success for about a week, great to have a week's sinus rhythm, but went back to afib and was affecting my PM Propranalol same problems as with atenelol I do not have high blood pressure in fact it is quite low since the amount of afib has increased. My average BP is 99/65 with 50% afib. This seems to cause problems with the rate controlling meds. The last cardiologist wanted me to take varapamil, I really was not happy as it was another med that reduces the BP. That is why I am now on no meds and having to see a new cardiologist. ine The licence for use in the UK use to be " must have tried three anti- arrhythmic drugs one of these should have been Amiodarone. That was back in 2000. I doubht very much if they will give it to you at the first consultation as it is a type three med. I would be they will try soltelol or Flecaninide as the type 1 med. Is there anybody in the UK taking this med that can update us. C Uk Hi I am about to see a new cardiologist next week, do you think it is worth mentioning it to her, I am not taking any meds apart from warfarin because of the effects. Quite a few people have had results on this site with Dofetilide. Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 ine, Then I would ask to see an EP not a cardiologist as you have been through nearly all the drugs there is. Doeftilide may be an option but you have to find somebody to prescribe it too you. Where are you in the UK. If down south try and get into Papworth. The last resort is the PVA or the maze both of there are completed in Papworth. C Uk I have tried the following Sotalol caused low BP and lead to me having a PM Amerodione I took for 6 weeks and did not want to take it anymore because of the potential side effects Atenelol caused dizzy spells (don't seem to be able to tolerate Beta Blockers) Flecainide I had some success for about a week, great to have a week's sinus rhythm, but went back to afib and was affecting my PM Propranalol same problems as with atenelol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 I live in Hertfordshire, just wondering if maybe one of the larger hospitals in London would be my best bet, that is something I could discuss with the cardio next week, as it is unlikely that she will not be able to do much else, I think I really need to speak to someone that has some experience of dealing the afib in younger people, I am only 46 and my guess is that unless I go to one of the larger specialist hospitals I am not going to get the advice I need. Thank you very much for your help. ine Then I would ask to see an EP not a cardiologist as you have been through nearly all the drugs there is. Doeftilide may be an option but you have to find somebody to prescribe it too you. Where are you in the UK. If down south try and get into Papworth. The last resort is the PVA or the maze both of there are completed in Papworth. C Uk I have tried the following Sotalol caused low BP and lead to me having a PM Amerodione I took for 6 weeks and did not want to take it anymore because of the potential side effects Atenelol caused dizzy spells (don't seem to be able to tolerate Beta Blockers) Flecainide I had some success for about a week, great to have a week's sinus rhythm, but went back to afib and was affecting my PM Propranalol same problems as with atenelol Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi ine C is spot on I have asked about this drug and the EP I saw is only aware of St s in Tooting where Dr Camm is licensed to prescribe it Dr Camm is one of the leading lights for AF in the UK > > > > I live in Hertfordshire, just wondering if maybe one of the larger > hospitals in London would be my best bet, that is something I could > discuss with the cardio next week, as it is unlikely that she will not > be able to do much else, I think I really need to speak to someone that > has some experience of dealing the afib in younger people, I am only 46 > and my guess is that unless I go to one of the larger specialist > hospitals I am not going to get the advice I need. > > Thank you very much for your help. > > ine > > > Then I would ask to see an EP not a cardiologist as you have been > through > nearly all the drugs there is. > > Doeftilide may be an option but you have to find somebody to prescribe > it > too you. Where are you in the UK. If down south try and get into > Papworth. > > The last resort is the PVA or the maze both of there are completed in > Papworth. > > C Uk > > > > > I have tried the following > Sotalol caused low BP and lead to me having a PM > Amerodione I took for 6 weeks and did not want to take it anymore > because of the potential side effects > Atenelol caused dizzy spells (don't seem to be able to tolerate Beta > Blockers) > Flecainide I had some success for about a week, great to have a week's > sinus rhythm, but went back to afib and was affecting my PM > Propranalol same problems as with atenelol > > > > > Web Page - http://www.afibsupport.com > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or > should be acted upon without consultation with one's physician. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi How easy is it to get a referral to Dr Camm?, do I need to ask my GP or Cardiologist? I have been reading the NICE guidelines from the link that D posted last week and I believe that I fit the criteria that justifies me being referred to a specialist in Arrhythmias, Thank you for your help ine C is spot on I have asked about this drug and the EP I saw is only aware of St s in Tooting where Dr Camm is licensed to prescribe it Dr Camm is one of the leading lights for AF in the UK > > > > I live in Hertfordshire, just wondering if maybe one of the larger > hospitals in London would be my best bet, that is something I could > discuss with the cardio next week, as it is unlikely that she will not > be able to do much else, I think I really need to speak to someone that > has some experience of dealing the afib in younger people, I am only 46 > and my guess is that unless I go to one of the larger specialist > hospitals I am not going to get the advice I need. > > Thank you very much for your help. > > ine > > > Then I would ask to see an EP not a cardiologist as you have been > through > nearly all the drugs there is. > > Doeftilide may be an option but you have to find somebody to prescribe > it > too you. Where are you in the UK. If down south try and get into > Papworth. > > The last resort is the PVA or the maze both of there are completed in > Papworth. > > C Uk > > > > > I have tried the following > Sotalol caused low BP and lead to me having a PM > Amerodione I took for 6 weeks and did not want to take it anymore > because of the potential side effects > Atenelol caused dizzy spells (don't seem to be able to tolerate Beta > Blockers) > Flecainide I had some success for about a week, great to have a week's > sinus rhythm, but went back to afib and was affecting my PM > Propranalol same problems as with atenelol > > > > > Web Page - http://www.afibsupport.com > List owner: AFIBsupport-owner > For help on how to use the group, including how to drive it via email, > send a blank email to AFIBsupport-help > > Nothing in this message should be considered as medical advice, or > should be acted upon without consultation with one's physician. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi Guys, Just to be correct its Prof AJ Camm but the other docs refer to him as Camm. A really nice person and very professional. I would still try either Papworth or St s, at the very late 90s these were the only two clinics that dealt with AF. It may have changed now. C Uk Hi How easy is it to get a referral to Dr Camm?, do I need to ask my GP or Cardiologist? I have been reading the NICE guidelines from the link that D posted last week and I believe that I fit the criteria that justifies me being referred to a specialist in Arrhythmias, Thank you for your help ine C is spot on Quote Link to comment Share on other sites More sharing options...
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