This personal story was submitted by Stephen. He is living with epilepsy and was inspired to submit his story because of a recent personal story. I hope you enjoy learning about Stephen’s experience.
I have read more and more recently about Epileptic symptoms which have been misdiagnosed, in certain cases actually being psychosomatic. However, my EEG was apparently conclusive, and according to the specialist I have Epilepsy. I wish it was not the case, but I appear to be stuck with it. I know that everyone’s Epilepsy is very personal and often it is very difficult to compare so I am asking how do any of us go about understanding the nature of what is afflicting us?
Stephanie’s inspiring story
Stephanie’s story was inspirational as it did offer a glimpse into something that challenged what seems impossible. I am on one medication and as far as I can see it has made no difference. My Epilepsy started four years ago and although my seizures are very intermittent they usually hospitalize me and despite the anticonvulsant medication dose I take (they keep on increasing it), the seizures are just as they ever were; for this reason I may as well not be taking it.
I am of course aware of the dangers of stopping your medication but I hoped that there maybe some insight out there on how to gradually reduce my dose safely. I think stress was what originally brought my seizures on, something which I know I have now for the most part conquered. It is my belief however, that it is my occasional lapse in taking medication that is now causing the seizures.
This I feel is ironic and is very much the cure being worse than the illness. I understand that there are a lot of very good doctors out there but it is the everyday people who suffer with this awful illness that are best placed to comment as we are the ones who are effected on a daily basis. I want fight this thing on my own terms. Where do I start?
Let Stephen know he is not alone with a comment below or by submitting your own personal story.
Hi Stephen, I hope you read this. I found your submission very interesting. Anti-epileptic drugs are the main form of treatment these days for people with epilepsy. If I remember rightly, around 7 in 10 people with epilepsy could have their seizures completely controlled with medications, it can take a long time but it’s worth it. There are more than 20 meds used to treat seizures, and different medications work for different types of seizures (There are around 40 types of seizures).
I have tried 5 different types of medications, and I am currently on two different ones (Keppra and Lamotrigine) and a high dose of both. I experienced horrific side effects of my other meds, the worst one I was on was Ethosuximide. I had the same thoughts as you when it came to ‘I might as well not be on this at all’. When I started on Keppra I was so poorly that I questioned coming off it but I’m glad I didn’t. If you are thinking seriously about coming off your meds I do recommend you speak to your specialist first. Suddenly stopping treatment can cause seizures to happen more often and last longer than before. I forgot to take my meds one day and ended up having a huge seizure. I know the meds seem to be worse than the condition right now but I recommend coming off them slowly (After speaking to your Neuro). I found CBT very helpful during the transition of meds for me as it changed my mindset and helped me control other emotions that came with my seizures. If you end up trying a few meds and nothing works, depending on your seizure type your Neuro might look into other treatments such as The ketogenic diet, The VNS, Surgery and maybe even deep brain stimulation. I’m interested in your journey so please keep us updated here at Living Well. Emily.
Stephen, what medication are you taking, if you don’t mind? How much? For how long?
I would absolutely not recommend decreasing your medication without medical approval and supervision. If you feel “you may as well not be taking the medication”, then decreasing your dose isn’t going to help anything.
I’m assuming your prescribing doctor is a neurologist and not your primary care physician/GP. If not, please try and get a neurologist (an epileptologist, if you can find one). They know a lot more than the average physician about this. Is the doctor aware that the medication isn’t working? Then you should talk to them about changing it. There are literally dozens and dozens of anti-epileptic drugs out there; one of them surely will work. If not, there are alternative treatments as suggested in Stephanie’s article, although there isn’t much significant research to indicate how helpful they are.
If you’re not happy with your physician at all, is it possible to see another physician and get a second opinion? That could also be a good idea, if you can. I’d suggest, not reducing your medication, but simply changing your treatment. Own your epilepsy and push for your own health!