Waiting Game.

It has been just under a week since I had my appointment with my Epilepsy Consultant and I haven’t talked about anything I found out that day with anyone, well, aside from my dad who went in with me and my fiancé. Instead of dwelling on it all I put it in a box, telling myself not to think about it. That if I didn’t think about it then it can’t have happened. I’m done with burying my head in the sand now, it’s time to write it all out.

Just before Christmas I had a 5 day Ambulatory EEG, this basically involved me walking round with wires glued to my head connected to a box on a belt that monitored the electrical signals in my brain. All I can say about it is that you will never be so grateful to wash your hair as you will be after one of these things! Anyway I got the results back from it last Friday. My Consultant once again said that my brain was very interesting, specifically as what is an Epileptic Seizure in others is nothing of the sort in me. This was in reference to my Myo-Clonic Seizures which it turns out are simply my limbs jerking and twitching for a very unknown reason. So not a seizure at all. Apparently this is nothing to be concerned with and I should not worry as they seem to only occur when I’m in bed about to go to sleep or when I am tired. It’s an odd feeling being told what you’ve always been told is a type of seizure is in fact well not a type of seizure and has nothing to do with your Epilepsy whatsoever. That’s another bit of my identity gone. I now only have two types of seizures not three. I never thought I’d say this but I wish these jerks were to do with my Epilepsy, at least then I knew why they were happening! Anyway back to Ambulatory EEG results. I was then told that I have very big electrical spikes that strongly indicate uncontrollable Epilepsy. Uncontrollable as there seemed to be no pattern or noticeable triggers to them. My Consultant went on to say that the only thing that could be say about my Epilepsy is that it seemed to be at it’s highest spikes and therefore reactive, in the morning and during the day. In other words, I am more likely to have seizures during daylight hours and less likely to have a seizure in evenings and during the night!

My consultant then steered the conversation towards changing medication and what we had tried in the past. This is when I got brave. I worked up the courage to tell him my fiancé and I were trying for a baby, to which he didn’t even bat an eyelid whilst saying that in that case I should stay on Keppra as it has the least amount of risks to mother and baby. I then went on to mention the possibility of me having PCOS (Poly Cystic Ovary Syndrome) and before I could finish the sentence “risk is higher in women with Epilepsy” my Consultant chimed in with “risk is higher in women who have taken Sodium Valporate (Epilim) for long time, in high dose and before age of 26, yes, yes”. I was a bit dumbfounded for a minute as my brain went into overdrive of thinking that if he knew that before why had no one ever told me?! I have been prescribed Epilim, always at high doses, at various intervals in my life from about the age of 13 up to the age of 22 nevermind 26! I hasten to add my Consultant was not being dismissive but simply agreeing with me or what he thought I was going to say! I was quizzed about my periods and if they were irregular etc, which considering there was a medical student and my dad in the room didn’t faze me at all! As my medical history shows my battle with weight and inability to lose it he knew that this was something that needed to be looked into quickly especially as I had mentioned I am trying to conceive. So with that my lovely Consultant said he will write to one of his friends who is apparently “one of the top Gynaecologists” to ask him to see me ASAP so I can have an ultrasound on my womb and ovaries amongst other tests. By then it was the end of my appointment and I was told to come back in 6 months time. In theory I will have had my Gynaecology referral and tests but until I’ve had them I’m still in trying to conceive limbo. The waiting game begins!

So there it is, all the news, info and developments I had locked away. Even writing it I don’t feel it’s happening to me. The fact is tests and being told what the treatment would be depending on how bad I have PCOS is making it all scarily real now. Far too real for me as I’m only just getting my life back from Depression and now this strikes, I’m left feeling a bit tired from it all. Tired of being strong. Not just tired from my Epilepsy, Depression or my Anxiety Disorder but trying to conceive on it’s own is hard enough when you want it so badly! I know if I admit to myself this is happening to me I’ll overthink. I’ll think worst case scenario and I just don’t know if I’m strong enough for it. Of course the fact my fiancé has said he wants to stop baby trying until we know for sure if I do have PCOS and am getting treatment for it, hasn’t helped with trying to confront it all.

I’d just like some lemonade now. Why do I continuously find myself squeezing lemons and never getting to the bit where I get to drink and enjoy the fruits of my labour? Always more lemons. As my mother says “You’ve Just Got To Keep Buggering On.” 

 Blog/Tweet soon x

Please do feel free to comment on here, tweet me ( @HopeEpiMum ) or even direct message me.

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