It was an easy decision to make as to what topic I should write about after rebranding my site. It had to be epilepsy. There is a deep sense of urgency. There are people who feel that they are all alone. There is no one who understands them or has gone through what they have gone through. I must confess that I was one of them.
I spoke to one of my friends recently and we talked about a person. He was stable on Lamictal until his doctor decided to change his medicine to Keppra because it was “safer”. Well, it did not work for him and his seizures escalated rapidly. The only difference is he had taken Lamictal and Clobazam at different times and my dosage was at the same time. I have come across other people in a similar boat. For some people Keppra works great it just did not work for me. My policy is if your seizures are under control then do not change your medications. For this reason, I do not want to change what I am taking even though I feel that I am taking too many medicines and I really do not want to take Keppra. It is for this reason that I do not want to try Epidiolex even though I do believe that medical cannabis has to be made readily available and must be put as an equal option as other traditional epileptic medicines.
There was a time when my mother put me through a traumatic experience of dragging me from doctor to doctor. I had accepted that epilepsy would be a lifelong condition. She could not.
I know how difficult epilepsy can be. I am also aware that I am lucky now because I am stable. There are things that avoid. Flash photography, strobe lightings, games where lines or balls move really rapidly is out. Sadly I cannot watch The Flash either. I ensure I am rested during the day. I do not drive. I swim but I only do so when there is a lifeguard. There are certain routines that relax me. I read and write. I play the guitar too. I have tried extremely hard to “switch” off from electronic devices before bed but I have not been successful.
The most important thing though is a support group. This can be real life friends or people you chat to online. The support that exists today is better than it ever has been. There is still a long way to go. This is especially true in the workplace. I do not believe that employers are doing enough for people with epilepsy.
About one percent of the population has epilepsy. We can either think that we are terribly unlucky or that we are unique. I prefer the latter. I know that I am part of a niche community that is extremely supportive irrespective of other differences.
I hope this post encourages you. If you ever feel low then post a message on any one of my blogs on epilepsy or send me a message on Twitter. My handle is @PKSoans. Looking forward to hearing from you.