I wanted to update the community on my story and I hope it may help others in some way. My first story was written on November 20, 2017, and was titled “I’m Only Human.”

 

 

My first event, in 2010, was diagnosed as classic TGA and I was told it was highly unlikely that I would ever have another. So far so normal for most of our community! The hospital ran tests, they decided against TGA and told me it was Transient Epileptic Amnesia (TEA) because of having some white patches on my scan. I hadn’t ever had any indicators of epilepsy at all, and still, haven’t, so I was highly dubious. They gave me a medication to take, Lamotrigine 2 x 50g daily.

 

After about 5 clear years, I wanted to stop the medication as I had never been convinced that the TEA diagnosis was correct, and I didn’t want to take a lifetime medication if I could avoid it. I advised my doctor that I was going to do this and he advised the decreasing rate of medication until I was clear.

 

During the decrease, I had a second event; classic TGA presentation again, but 5 hours rather than 8. I rationalized this as being a likely result of my brain and body adjusting to the change in medication levels and I continued to decrease and then stop the medication. Some months after being clear of the drug, I had a third event, exactly like the second. I felt I could no longer pretend that the medication was having no effect, so I re-started the medication. My story, on the website, takes us up to that point.

 

It is now some 18 months after re-starting the medication, and I felt I wanted to update my story by telling the community that I have had no further events to date. Everybody makes their own assumptions and decisions on their own condition, and that’s as it should be in the circumstances that we all find ourselves. We have a condition that has precious little research but all sorts of discrepancies in the way the medical community treats it.

 

My assumptions, at this moment in time, on my condition, are that: despite objections to the contrary, the classic presentation of TGA is quite often NOT a single, never-to-be-repeated event that is not treatable. 

 

My Two Conclusions:

1. TGA and TEA might both be on a spectrum of the same condition (which should then be re-named) and therefore drugs that can affect TEA can also affect TGA.

2. TGA and TEA are separate conditions, but in the event of a TGA event recurrence, it could be treated with a TEA drug.

 

With either conclusion, I am happy that I have not at any time had to be worried or anxious about my condition. At the time of the first event, having been told it was a one-off event meant that I was not worried about having had it. I was curious, but not anxious. Following the second event, I was given medication that seems to work, since the third event was triggered by my ceasing the medication.

 

Therefore my mind is now completely at rest and the only time I ever think about the condition is when I get an email from Richard! I hope that helps and I wish everyone great good fortune in their own individual lives.