Hey Team
Sorry it's been a while, and I haven't been able to reply to the PM's. Epilepsy got pretty bad, but appear to be under control now.
Although the neuro specialist's disagree with my thoughts about what caused the epilepsy, here's what I think.
After a constant battle over 20 years since I had abdo surgery - in 2014 I was finally allowed to be placed on 65mg daily Pred for my IBD, and was on this high dose for around 2 years. From the third day of Pred, all my IBD symptoms immediately stopped - after what was pretty much a 20 year flare!
It was after a year of being on Pred that my seizures started and also at this time was placed on some grunty anti-seizure meds. My IBD was fine (due to Pred), but my Epilepsy just got worse and worse. (I take several other meds, and I am sure this combination caused my seizures).
The anti-seizure meds I have been on for 18 months were terrible, worse even than the grand-mal seizures! I have a three month period of time with no memory of it, basically since Jan to Mar 2016. It also caused severe mood changes that I have no knowledge off, but that caused quite some damage to my relationship with my beautiful wife, but whom has also realized it was a side-effect of the medication.
I am off the Pred, and my IBD is returning. But I have also weaned myself off the 800mg Lomatrogine (anti-seizure meds), and have had no seizures for three weeks.
So, I am waiting to enter a 'full' flare and then my gastro specialist will admit me to hospital for further dx and treatment with something safer than Pred.
At this stage I am still undiagnosed.
The good thing is that two years of Pred has brought a lot of healing to my bowels, and it is taking a while to get back into a flare, although my abdo is in constant mild pain and I have diarrhea constantly.
I was trying to induce a flare by eating and drinking things that I know used to cause a bad reaction (lactose, sugar, coffee, spices etc..) but think it best to wait for my flare to return naturally, as I don't want to be admitted and not be in a 'real' flare and therefore not be dx'd correctly.
C'est la vie
Rog