Well This Sucks!

On the surface my life is really great at the moment. I’ve just got back from a holiday in Amsterdam, next week I’m off to Southampton to visit a post-grad fair and my creativity appears to be at an all time high. Yet below the skin, there’s a massive elephant suffocating me. Now, before you panic about boring repetition I will clarify I am not referring to PIP. Instead I’m talking about my epilepsy.

At the end of last year I visited my Neurologist. My parents and I entered the appointment with a lot we wanted to discuss. The last year or so my seizures have been getting excessively worse, I’d like to say they’re rare but severe, however, at the end of last year I couldn’t even say that. The seizures themself have got much more intense with it taking over half-an-hour for me to fully come around and being unconscious throughout, they’ve also been far less nocturnal. I will say, without being triggered by forgetting or accidentally dropping meds, the first of each cluster still tends to occur whilst I’m asleep (normally around 8am), only the clusters have also worsened meaning they continue throughout the day. Back in November I was having them roughly every two weeks with between three and seven each time.

On a slight side-note, since officially returning home I’ve also had several visits to the GP. It was not an easy transition which I will elaborate on at some point, but it has been confirmed that I have damaged my legs due to repetitive seizure activity. Considering how much this has been affecting my life in the past six months, it’s quite a depressing fact, but I have now been referred to a physio so hopefully I’ll be in better shape soon.

So, back to the original topic. After discussing how I felt about my current meds and other potential options, I left the consultation with a new plan and several new prescriptions. As of today I have officially switched from Tegretol to Lacosamide whilst also having increased the Dizzy Pill. Tegretol was the first Anti-Epileptic Drug I was ever on, so it holds a weird form of sentimentality for me, but like all the other pills I’ve been on, after five-ish years it has stopped working. I was also referred to a Neurosurgeon to discuss Vagus Nerve Stimulation or VNS, I shall explain more about this once I actually have the information.

Since being on this new medication I’ve only had one cluster of seizures. Admittedly it was the worst I’ve had in nearly two years, experiencing nine in less than 24 hours, but only one in eight weeks is still pretty good. The change that I feel has had the biggest impact (mentally) on me is that, for the first time in my life, I was prescribed emergency medication. I now have a repeat prescription of Buccolam which is a controlled drug. Although taking it makes me feel like the cat after we’ve squirted his daily lemon-flavoured meds into his mouth (very angry and full of yucky stuff) it has certainly done its job. It may just be the taste that brings me round but the initial recovery period has drastically shortened with me being able to talk within a few minutes rather than being semi-conscious and only able to wail for over half-an-hour.

Despite this, however, the simple concept of being prescribed emergency meds has hit me hard. When my mum insisted on bringing them along with her on our four day trip to Amsterdam this week I was very upset. It makes me feel ill. It also makes me question the current severity of my condition and just how limiting and dangerous it truly is. Just as I feel I’ve gained control of my life, a massive boulder comes rolling down the road and knocks down all my plans. As much as this has been chipping away at my confidence and self-belief for the past few weeks I’m still in a reasonably positive state. It may have been the trip away that has brought me back down to Earth or even just the power of time. Whatever it was I feel much better than I did a few days ago.

Health wise, I’m not in a good place but it’s not really particularly bad either. Epilepsy comes with a lot of uncertainty and that’s something I don’t cope well with. All I can do is take care of myself and hope that things get better soon.

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