Blog 60: AED Roulette

Today I am going to talk about the roulette of Anti Epilepsy Medication (AED’s). It is one of the most common questions I get from women who contact me; “What meds were you on” “What changed during pregnancy” “What do you take now?”  This blog may seem like a bit of a moan but I promise it isn’t, I am going to try and give an overview of how difficult it can be to find the right dose of medication or the right combination (it is estimated that 70% of people with epilepsy could be seizure free with the right treatment.) and the misconceptions around it, I know I am not alone when I say it is very frustrating when people don’t understand the complexity around AED’s.

Apart from the medication (side effects and seizures) life is good, the main thing is Noah is happy and healthy, the Pups behaving and I am in a job that I enjoy and feel supported, it has made the world of difference to me. The sun is shining (I started writing his 8 weeks ago1), we go swimming, to tumble tots and Noah is really developing his personality and it is so lovely to see, he makes me beam from ear to ear every day.
 
SO; the roulette of Anti Epilepsy Medication! First of all let me tell you things people have said that have either upset me or got my back up, I am sure it was never done with any malicious intention but it is so frustrating. These are some comments I have had:

1. Why not just put you back to the dose you were on before you had Noah?
2. Well maybe this time they will give you the right dose.
3. Why haven’t they got it right yet what are they doing?
4. Can they just give you something else?

 
I know that the people who have said these to me have said them with the best of intentions but all at varying points have made me want to cry or scream! If it was that easy I wouldn’t be pulling my hair out, it is not as simple as taking paracetamol for a headache. What works for one person may not work for others, it is luck of the draw. This blog is looking at WHY it isn’t as simple as that and the hundreds (ok bit of an exaggeration) of combinations tried since Noah was born ( I would be here for a while if I included before Noah!)
 
Following Birth
 
The plan was supposed to be straight forward, stop the 1500mg of Keppra that was introduced during pregnancy twice a day and reduce my 400mg of Lamotrigine twice a day back down to 250mg twice a day and everything would go back to normal… wrong! We assumed at the time the side effects of keppra were just down to me being pregnant and hormonal, little did we know. The Lamotrigine needed to be reduced very quickly because as my hormones changed back the levels would become toxic, I started having side effects from this very quickly; I felt drunk, dizzy and unbalanced. All classic signs that lamotrigine levels were too high. That first week after having Noah I was also taking Clobazam as a support to try and control the increase in seizures.  A six-week plan was put in place; the main aim was to decrease the Lamotrigine so that the levels in my blood were not too high and to stop the side effects. The Keppra would remain as it was for now and I was to stop Clobazam so I could judge how effective the decrease was and how my body was coping with it.  In my eyes I had just six weeks more of playing about with AED’s and it would all fall back into place… wrong again!
 
4 weeks
 
I was concerned about the effects of dropping the dose of lamotrigine because of lack of sleep and because I was so frightened of having seizures and not being able to look after Noah. I slowed down my decrease thinking I knew best and slowing it down would make things easier, something I then got a slapped wrist for because my med levels were too high (as confirmed by a blood test). As I said before pregnancy I was on 250mg Lamotrigine twice a day with no secondary med. The epilepsy nurse was of the opinion I should bring the lamotrigine down to 275mg twice a day then reduce Keppra. The neurologist was of the opinion it should be 300mg and then the reduce Keppra, of course the Neuro won that one. So, I got myself down to 300mg twice a day of Lamotrigine and we started the reduction of Keppra and that was a much slower process. It was reduced every two weeks so I believed ten weeks from then I should be free of Keppra and then it would be time to see what the Lamotrigine was doing on its own and how far could be reduced… Wrong AGAIN.

Better the devil you know?

Lamotrigine alone was doing nothing for me, so we decided to reintroduce Keppra, now at this point we were under the illusion that any side effects were pregnancy related rather than the drug, as is now well documented that wasn’t the case. Anyway, I am getting ahead of myself! We started the very slow introduction of Keppra again and it seemed like it was starting to work! I was almost giddy with excitement. I was exhausted on it but I guessed it was just because of the recent increase. Like I said Keppra was a mixed bag, yes my seizures were controlled BUT I was not myself, I didn’t recognise myself. It put my marriage under strain, my relationships with people around me and I couldn’t trust myself not to do something like launch myself under a train, I didn’t want to die but that was the very strange place my brain was in. I kept thinking but its controlling the seizures surely this is better than living with uncontrolled seizures, as time went on it became so evident it wasn’t. In the end the decision was taken out of my hands by neurologist and I was taken off the drug. We then introduced Zonisamide alongside lamotrigine, that lasted all of 48 hours before I was in A&E with an allergic reaction, that was stopped instantly. By this point I was so frustrated and there seemed like no light at the end of the tunnel and I was starting to think maybe I should just live with the seizures. My neurologist has different ideas and decided with Noah now being a year old maybe we should give the Lamotrigine another go at a higher dose. So we increased it from 250mg twice daily to 275mg twice daily, crossing all fingers and toes there seems to be an improvement. My anxiety has increased but I am trying to find a way to live with it, I am thinking of suggesting to them that I drop the doses to 250mg/275mg to see if this balances seizure control V side effects, we shall see on Monday at my appointment.

What you aren’t told

There are a few things that doctors seem to fail to mention as routine. Nobody told me the medication could or would affect my joints and the big thing now is that it would hugely affect my immune system, as I sit and write this I have developed pneumonia, I only need to be around someone who is slightly ill and you can bet I will pick something up. The frustrating thing is it is never a simple cold it is something that will knock me for six.  I don’t know that I will ever be able to balance this out, I think in my head I think being poorly for a week or so is a small price to pay for seizure control but then that is down to the individual.

Present Day

This blog has taken me almost 8 weeks to write but I have been concerned it would be long and boring, however it is a subject I feel needs addressing. As I say my appointment is on Monday and I am praying that it will be the first time my medication is left alone (or the slight reduction I am thinking of is the worst that happens.) My epilepsy has been largely controlled until I caught pneumonia, but as always with any illness it will aggravate the epilepsy but I guess that’s the reality of living with epilepsy.

UPDATE: APPOINTMENT

Monday was the quickest appointment I have had in about 2 years, I was not feeling at all well and didn’t want to be there, thankfully my nurse picked up on this and whizzed through everything. After having a chat I was surprised that my lamotrigine is being increased to 300mg twice a day (bare in mind I wanted to reduce it possibly) but they are confident that we can have full control, he wants to get to a point where it doesn’t matter if I am ill that it will not affect the epilepsy, his optimism is contagious and I am feeling positive so I am willing to give it a go. We also had a chat through all medication I have taken over the years (Epilim, Keppra, Lamotrigine, Clobazam and Zonisamide if anyone wants to know) so he could have a think on where to go next. They are being very flexible with the increase and have put it in my hands, that they are happy for me to start it when ready (when I shift this the pneumonia) and for me to decide when then to increase, I left there with reassurances I would call if any problems and an appointment to see the consultant in a few months. I actually left there with a feeling of being in control and optimistic for the first time in a very long time.

The most challenging moments of living with epilepsy are when I run into moments when I am doing so well and then I hit a bump in the road. It’s in these moments that I have to be my own coach, I have to be my own lifeguard. You can have all the family and friends in the world that are the greatest ever but the bottom line is, you have to stand yourself up when you’ve found yourself fallen down because no one else can do that for you.
 
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