Hi, I have joined this forum as my Dad is struggling with his PMR. he is experiencing episodes of Transient Global Amnesia and I am trying to find out if this is linked to his PMR as the episodes tend to occur when tapering his steroid dose.
Does anyone have a similar experience .
Thanks
Hi and welcome!
Now this is a sort of specialist subject for me - I have had 3 TGAs in the last 11 years since I have had PMR. After the last one, last May, I had a pacemaker inserted and the cardiology team here have said they think the TGAs will now stop as they believe they are linked to the vasculitis and periods of bradycardia that were occurring linked to atrial fibrillation.
Ever since I have had PMR I have had episodes of paroxysmal atrial fibrillation, originally they were brief and very sporadic and I just noticed palpitations. My GP never found anything - common in episodic a/f - and blamed my age. He blamed everything to do with PMR on my age ... When I eventually started on pred they seemed to improve and I didn't think any more of it until I had a flare and severe sacroiliac problems which the local hospital decided to treat with i.v. diazepam - triggering a rare adverse effect: severe atrial fibrillation! I was kept in hospital until they had worked out how to manage it and afterwards I realised that those episodes I'd had previously had been a/f.
The first TGA happened shortly after moving house, being away on holiday skiing and a long drive from the Alps to the north of England - stress is a common trigger. It also coincided with a bad flare of the PMR symptoms - at that time I wasn't being treated with pred but since then I have seen a pattern in these flares. In England they didn't appear to have much idea about it - I was investigated for stroke (ruled out immediately by the ED doctor who recognised it as a TGA but the other consultants weren't as clued up) and also for epilepsy - so I was incorrectly informed I had to surrender my licence. That's another story though. I was told nothing - but then, they knew nothing to tell me it seemed! I was led to believe it would probably never happen again.
The second happened after I'd just some "fun" trying to manoeuvre my car on a sloping sheet of ice! Apparently that is also a common trigger. However, this time the local hospital here in Italy recognised it for what it was, I was kept in overnight - again my memory had returned in about 5 or 6 hours - and sent home. The third happened in May last year. Unlike the first 2 I remember nothing at all - with the first two I can remember things right up to the memory loss. I had been having momentary dizzy spells for some months, like a wave passing over me and gone but we hadn't managed to capture one on a 24 hour ECG monitor - they had only recently got new recorders and I was given one for several days but it was one to start when something happened so of course it always missed the event. Then I discovered they had an external loop recorder - it stores the previous x min on a rolling loop so when you press the button the trace for the previous few minutes is sent to the hospital monitor by wifi. I was just about to go and get one when the third happened. Apparently I fell/collapsed at home - hit my head and damaged my knee and had another GGA. I was very agitated on admission to hospital and they gave me an i.v. of diazepam to calm me down - before my husband arrived in the ED - and of course it triggered a/f. But this time it showed periods of bradycardia, slow heart beat, and I was having pauses in beats of up to 7 seconds - that is a long time! The dizzy spells had been getting worse in the previous few months and it is assumed that I had had a longer one that had caused me to collapse and I was immediately referred to the cath lab for a pacemaker.
The hospital here told me that TGAs and arrythmias can be linked. They also are fairly sure that my a/f was caused by the autoimmune part of PMR having also damaged the electrical cells in the heart that govern heart beat. They agree with my experience that any flare of the vasculitis makes the a/f worse - or more specifically, made the bradycardia/pauses worse. Initially I could manage the dizzy spells by raising the dose of pred: at 7mg they were there, 8mg far fewer and at 9mg none at all. Then the PMR seemed to flare up and I needed 15mg again to manage all the symptoms and slowly reducing the dose to 12mg brought the dizzy spells back, 13mg was OK and that was where I was when the 3rd TGA happened.
After being given the pacemaker the dizzy spells are gone and I had reduced to 11mg. However, I've hand another flare so have had to increase the dose again.
Sorry about the long story - but it is rather complicated!!! I don't think PMR itself is the cause of the TGAs - but it is part of the entire history that includes the TGAs
You say your father has had episodes of TGA - how many? What have they checked for? As I understood it from my medical team TGAs can be a sign of a few underlying cardiovascular problems including heart attack, arrythmia or other causes of brief cerebral ischaemia that may not show up on a CT.
He has had 5 episodes since April 2019, the most severe was in September 2019 after a very stressful period. He seemed to lose all memory of the previous 2 weeks, during which time a family bereavement had happened so it was exceptionally distressing. The memory loss lasted 12 hours roughly.
We then paid for private tests including MRI and EEG. Conclusion was no evidence of transient global epilepsy so diagnosis was TGA.
Good information for us to mention to his doctors as Dad has had heart stents fitted.
Thanks for your reply
Oh golly - that is a bit rough! It isn't too bad for the patient - we know nothing about it - but it must be awful for family. That is a lot of retrograde amnesia - there are things I probably have lost but nothing that long or recent.
Hope they work out what is triggering them. I realised after the second I was becoming less willing to go and do things alone and for a while my husband was really edgy about it as I was off alone to a medical conference in Canada.
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