I replied to another post yesterday but thought maybe the subject matter of my case might be worth a separate post.
I suffer from acute urticaria when wired up to heart monitors for any amount of time. Patch testing has proved that I am allergic to over 100 substances including nickel.
At the same time because of my Bradycardia and bad conductivity my EP wants me to have a pacemaker and I have been resisting it until they can prove to me that there will not be an allergic reaction.
I have researched this phenomenon and there is case history where infection was suspected but not proved and ultimately they discovered it was a rare but real possibility that it could be an allergic reaction to the pacemaker.
In some such cases a gold plated pacemaker was used with polyurethane coated leads rather than titanium and silicone coated leads.
They are still trying to assemble all the relevant components of the pacemaker to patch test me but after 2 years this is still proving very difficult to achieve.
Whilst my AF episodes are now at an all time low (once or twice a year resolved with PIP) my slow heart rate leads to lethargy and any significant physical activity is very difficult.
Pete
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pottypete1
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That sounds intense Pete. I had hives when I had a 7 day halter monitor. I’m not sure if it was the plastic/fabric of the stickers or the gel that was on them.
I cannot change meds until I have a pacemaker. Catch22 situation. I take statins, blood pressure tablets and medicine to counteract nausea plus Warfarin and Flecainide. You might be right but I have always had skin problems and when I was 11 back in 1958 I was in hospital for 6 weeks with a rare skin condition.
No not the ablations. My EP said my top chamber is dilated which is a consequence of 30+ years of AF. He said this is what has precipitated the Bradycardia.
Poor you, that's a long time to have had AF. What was the treatment back then and what year did you have your first ablation? I've been told that I have a slightly enlarged heart after 17 years of AF.
My experiences with AF first started when I was at work one day and could not understand why I felt so bad. A month later I had the same feeling went to the doctor he sent me straight to hospital and I spent the rest of the week there and the rest is history. A month later I had my very first Cardioversion.
To start with after that I was on Sotolol but after a few months I was put on Flecainide instead.
At that time I lived in Guildford and the local hospital Cardiac Unit had a young research fellow working with my Cardiologist. He was based at St Georges Hospital. He is now the lead consultant and the Royal London Hospital.
Whilst under his care in around 1992 he arranged for me to spend a day at St Georges and I still don't really know what they did but I am pretty sure it was one of the early ablations as I was sedated and they put catheters into me. Communication was not brilliant now I think about it. I ended up in AF and they had to give me intravenous Flecainide to correct the AF.
In 2005 I moved to Hampshire and was totally unaware of the fact that Southampton Hospital had a dedicated Arrhythmia department in one of the top Cardiac Departments in the UK.
My GP referred me to the hospital and I had my first ablation in 2009. Whilst I had a history of AF my EP insisted that I had shown more incidents of Atrial Flutter so this ablation was for flutter. However as I was awake I was aware that I went into AF very quickly during the procedure thus proving that this ablation should have been for AF.
The next Ablation was in 2012 was described as "Percut translumial ablation of the heart conducting system"
In 2013 I had my third ablation described as "Percutaneous transluminal ablation of the atrioventricular node".
I have only just realised whilst re reading my notes that this record seems to describe an AV Node ablation yet I cannot be a full version otherwise they would have had to give me a pacemaker then wouldn't they? The discharge letter does not refer to the AV node at all. I think I might write another letter to my EP to address this particular finding you never know it might be one of the reasons I feel so drained these days.
It was at this stage my EP said he could do nothing more for me and that soon I would be in permanent AF and I should learn to put up with it. His bedside manner left a lot to be desired.
A few Cardioversions later I was told that my EP had retired and that the new man on the block wanted to have "another go" as they put it but this time because of my problems with sedation they were going to use GA which as you and I agree is much more agreeable.
I had two more changes of EP in the next couple of years and am now with the best one of all in my opinion who is trying to set up this testing for the allergic reaction. The dermatology Consultant is having trouble locating the parts that need testing so I am still in limbo.
In my research I found a number of case studies of allergy to a pacemaker and below is an article from the Daily Mail (not normally my source of info😉) where a nurse in Norwich had a similar problem but her pacemaker had already been implanted.
Many years ago, when I was first working in the NHS, I overheard a cardiologist explaining to his students about the most expensive pace maker the trust had ever fitted - it was gold plated, because the patient was alergic to the metals in the normal ones. He was standing next to the cabinet of vintage pacemakers and artificial valves that were, quite frankly, terrifying!
I’ve got a gold coloured/covered titanium pat knee replacement and I reacted to the sticky dressing, I was annoyed be caused I’d told them I get allergic to sticky dressings and they could have got a hypoallergenic one, took 2 moths for the red itchy rash to go.
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