Do You Know Your Triggers?

There’s always something special about returning home from a trip away.  The welcome first night in your own bed; the house where all your belongings are, but perhaps most of all, not living out of a suitcase and backpack.  That being said, I wouldn’t have traded the last seven weeks for anything.


Having been back in England, I return to Seattle a different person to the one who originally left.  I was unaware of how much I’d love being back in my homeland.  I’d spent many a year knowing I was unhappy in England and somehow the US had always felt like home to me; therefore, most of my energies were spent looking for ways and means to be fulfilled in what I was doing but in North America.

Reunions with family and friends were joyful, catching up on news and being able to ‘be’ in my other home environment where my roots clearly remain.

What is always fascinating is how my epilepsy reacts to such lifestyle modifications.  I was plucked out of my US environment which removed particular day to day stresses including wedding management; this enabled me to forget that and focus on my best friend’s wedding and reunions instead, which was a blessing.

There have been a lot of alterations with medications for my epilepsy, plus an unexpected success in alleviating my endometriosis, this naturally created a number of contributing variables; however, seizure activity has definitely improved.

I have been on the Onfi for a number of months now.  It’s been intriguing to have experimented with this drug.  It certainly has achieved its goal for combatting the nightly seizures; however, there are a few extras that got thrown in for free.  The tiredness is extremely significant.  I will sleep most days in the afternoon.  I now understand the true meaning of needing matchsticks to keep my eyes open as I have found myself in situations where I’m talking with people and the urge to shut my eyes becomes a whopping fight.  The sensation of having eyelids made of steel is a new concept!

Motivation levels also ran low and what I also noticed over time was how I slept.  I haven’t woken up in the night since I began taking Onfi.  It almost functions as a sedative.  It’s similar to being punched and knocked unconscious.  I sleep for X hours and then I wake up, but without the other unpleasant side effects of a black eye.  It’s not an unpleasant or scary feeling; I’d mark it more as surreal.

An addition to this sedative like sensation is that if I happen to need the bathroom during the night, in normal circumstances I would wake up and go, with this drug I don’t.  It operates in such a way that I’m out cold sleeping, and it’s only when my bladder is at bursting point does my body actually wake me up, which again is not quite right.

None of this is cause for concern as I’m maintaining my levels and coming down as I believe they could be too high; however, for those given this drug as an option for seizure control, this could be useful information.  I must say though, since taking it, I became aware of just how disrupted my sleep was.

I have also started on an oral contraceptive which has improved my endometriosis immensely. Unexpectedly it also had a knock on effect with seizure improvement.  Hormones feature predominantly in women with epilepsy both generally and for those suffering with catamenial epilepsy.  They certainly affect me and I like to think now there is more regulation due to a greater balance of hormones, no doubt only blood tests could prove that.

So, with all this good news what’s left?

Well, it’s the triggers.  Despite being on two different medications plus a hormone regulator which has shown a positive development, why haven’t the absences gone?  Is there any point in taking the pills if at certain times I am aware I’m having more seizures than others?

My conundrum is just that.  Emotions are my downfall.  Any emotional stress, certain subject matters that are discussed, it doesn’t matter how well the meds are controlling the seizures, they will be sure to return with a vengeance.  I began piecing together the subject matter which brought them on and I have a couple of ideas under my belt for when I know my brain’s decided it would prefer to shut down rather than talk about it.

Does that mean I simply have to make lifestyle changes?  Slightly unrealistic as they aren’t topics I can avoid from everyday life. Do I have to deal with my issues to make a break through?  My thought is where and how do the drugs fit in? Surely, subject matter shouldn’t make a difference to their effectiveness, either they are or they aren’t working?

According to the Epilepsy Association Northwest, statistics from 2015 show that 50% of people find their seizures are eliminated with the use of medication, 30% see a significant reduction and 20% don’t respond.  Now I’m beginning to wonder, do my absence seizures fall into that 20%…?



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