Friday 18 October 2013

The other side of the same coin

While epileptic seizures can be difficult to deal with, for those with very infrequent or mild seizures, there can sometimes be an incredibly difficult choice in trying to control them.

Rationally, people around you, your family, friends, doctors, will probably always believe that not having epileptic seizures is the most important thing to achieve. But there's sometimes great consequences to that too. The condition is difficult to tackle the stigma of, because seizures look different and feel different for different sufferers. Some people have more frequent and longer seizures than others and as a result not only does that mean that people who come under the same umbrella of epileptic, aren't treated differently when they should be regarding the stigma, but the medication they take is totally unique too.

People are usually a bit confused by how I could have had a part of my brain removed and remain the same person I was before. But the reason I was eligible, the reason I was so lucky to be one of the 5% that was able to have neurosurgery, was because it was a part of my brain I didn't use for daily functions.

But it's still my brain and it's still bloody complex!

It would follow then that people would have completely unique reactions, or even none at all to medication. But what happens when you finally find that right medication to cure your seizures, but the side effects seem worse than the epilepsy itself?
One of the drugs I took changed my personality more than cutting part of my brain out. Keppra didn't work with me, or my brain. It caused me severe depression, aggression and nausea, and it left me wondering if having a tonic clonic seizure every year or so was a better option?
Thankfully I didn't have to make that decision when coming off the drug. It didn't make a blind difference to controlling my epilepsy, in fact it probably made it worse. But having said that, it could be the miracle cure for someone else with absolutely no side effects at all and I know of many friends where that's the case. We have totally different make ups and so one person with epilepsy will always react differently to another, you have to experiment before finding the perfect, or as close as you can get to the perfect anti-epileptic drug.

But then it's not to say that the medication I'm taking now couldn't eventually have an impact on my normal daily life too, the drugs also can change their effect on someone over time.
Side effects of anti-epileptics can be as diverse as memory loss and confusion, to insomnia or weight loss. So when does the epilepsy itself become a better option and how do doctors know what drugs you should be on?

I guess the first lesson I learnt after the Keppra episode to address this, is be aware of what is normal for you and to never, ever, be afraid to go to your GP, Consultant or Specialist to say, I don't think this is working. You're not an inconvenience and never will be, so make sure you take it on yourself to make sure you demand the best care you can get. If you're a parent, then it's on you to do the same if your child has epilepsy and can't be assertive for themselves because they're too small.

The second lesson I learnt, despite people being shocked when I asked them to do it if I ever had a seizure, was ask them to grab their phone if I was having the seizure and film it. If like me, you have infrequent seizures, it could also be an incredibly rare opportunity, to help with the best diagnoses a medical professional could make, because they're able to view the seizure themselves.
It's not crude to film a seizure, it's informative in the best possible way for the individual's doctor, in helping narrow down the search to what medication will cure their seizures. It could also mean that it could cut down on having to suffer needless side effects for a medication which doesn't have a positive effect in curing their seizures too.

Ultimately, medication is extremely specific to an individual. But they should never settle for something which means they have to suffer in order to control their epilepsy either. Medicine is always evolving and there's always new drugs to try and see if it will impact on them in the best way possible.

When it comes to the other side of the coin, our heads are really important and we should always make sure we don't settle for the small change of anti-epileptic medication side effects.