My name is Seana B, I am now 62 years’ old and I live in London (UK). About 7 years ago, I had my first TGA event. I apparently phoned my son which triggered all sorts of panic resulting in an ambulance appearing and me 'coming to' in hospital A&E several hours later with my son, daughter and my ex-husband by my side (some English terminology may be strange to you, sorry). So far so common to almost everyone in the forum!  I had absolutely zero memory of what we calculated to be the past 8 hours. Tests were immediately done to discount nasties like brain tumor etc and a neurologist came and announced TGA. He said, of course, that there would be no damage and I would be unlikely to get another, so I went home. I took him at his word and I wasn’t in the slightest bothered by this weird but interesting ‘thing’ that had happened. I recognized that it was more worrying to the people around than me! It was, by the way, an absolute by-the-book event of 8 hours, no loss of consciousness, completely fine cognitive and auto-biographical knowledge, but confusion and broken record repetition. I had no after-effects whatsoever. By the way, when I called my son, I had been wrapped in a towel after taking a bath.

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The National Health Service in the UK (which is free, so I have never had to worry about money for tests or insurance claims) did what it always does and sent me for further tests over the next couple of months; blood tests, MRI and EEG. My consultant told me that I had some white patches in the memory part of the brain, but that they were small and few, so she had no idea whether that was just ‘the way your particular brain looks’. She suggested that, if I had no objection to long-term medication, I go on an anti-convulsant called Lamotrigine Lamictal as it ‘might help to stop you having another, we just don’t know enough. And it could be TEA, in which case it would be good for that’. So I took the medication, no side effects, but I did research symptoms and my event had been so classic TGA and so NOT the symptoms of TEA, I decided it had to be TGA.

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Five plus years went by with no repeats. I then decided that I didn’t want to take such a strong medication for the rest of my life - for no particular reason, just that as I got older I would be likely to have to take other stuff and I didn’t want to be taking something that was unnecessary. So I told my GP, who advised me to stay on them, but I told him I was going ahead and he told me the rate I should reduce the meds for safety. On the second reduction of the meds, a month later (now 18 months ago, March 2016) I had my second event. It was shorter, only about 4-5 hours, but otherwise the same. I must have recognized what was happening to me, as when I ‘came to’ I found little post-it notes with messages to myself all over the house, saying things like ‘I feel funny, I think it’s TGA again’, ‘don’t worry, Joe (my son) will be home later’, ‘try and take a nap’ etc etc! I also had accepted delivery of a parcel, (dressed only in a towel as I had taken a bath!!!), unfriended two people on Facebook (sooo embarrassing), and taken random photographs of several rooms in my house! My son came home at the time I was patchily coming out. So I’d had that event without recourse to help. Strangely, I didn’t think this was an indication that I should go back on the meds, but rather that the event was probably as a result of my body adjusting to coming off them. I continued to reduce the meds and a full year went by afterwards.

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Then, in September, two months ago, I had a third event. Again, like the second, about 5 hours, same MO precisely. This time I phoned my daughter and apparently there were three recurring broken record themes. She stayed on the phone with me for about an hour while her boyfriend called my sister and my sister called her daughter who was closer to my house. My niece turned up and sat with me, then my sister arrived by which time I was patchily coming to. Again, I’m wrapped in a towel!​

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As a result, I felt I couldn’t ignore that I had had five clear years when on medication, and then two events over the next nearly two years after I came off! I went to my GP, asked him to re-prescribe the Lamotrigine and refer me to neurology again. I am now fully back on the meds. However, and this is a big however, this third event appears to have produced some damage in that my short term stored memory seems to have been quite busy deleting stuff. Quite a bit of stuff. So I will be very interested to see the results of the MRI and EEG that I should be having fairly shortly to see if those pesky white patches have cloned in comparison to the first one 7 years ago!

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So here’s the thing. This forum has been great - such nice people! And very useful to hear lots of other stories to try and sort out my own situation. My current theory from reading about other people and before being able to compare those MRI and EEG tests, is that maybe, just maybe, although there is a big difference in the basic symptoms of TGA and TEA, there are also fundamental similarities. They are both convulsions, after all. And maybe, if you have a single, classic TGA event then you can think no more of it. But if you are a repeater, and there seem to be more than I had originally thought, then maybe it can be treated more like TEA, and maybe it can react well to medication? For me, time will tell, since I am the guinea pig for that theory!

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On the enormous plus side, you can see that TGA has not made me overly anxious. Obviously I don’t want to keep having events, no-one would, hence my trying meds. But my experience of three is that, basically, it’s OK. You don’t die, you don’t tend to have any more likelihood of an accident than you would by simply having a clumsy day. And there is nothing to panic about. It has not changed my life at all, since I do believe that it is probably a set of circumstances that trigger an attack; there is no single reason, and that those circumstances are probably different with every individual. One of mine is obviously a hot bath!

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Let’s just continue to help those who have had their first event and who are scared, and be nice to everyone on the forum who are seeking answers!

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