Epilepsy

[ithinkineedahug]

I'm after some advice really...I have epilepsy and had a major episode of fits last week resulting in going to hospital. I'm very worried about underlying causes and aware that brain tumours can mask themselves with my symptoms. Am I able to request a scan to rule it out or would this have already been offered if the doctor was concerned? Really worried...

If it's your first episode of seizures then they will do a MRI to rule out any tumours as a underlying cause .

Go to your GP who will have your discharge notes and get a referral to a neurologist. It's part of a standard work-up and I was diagnosed in 2008 with epilepsy myself

There are lots of things that can cause fits, it may just be that you need your medication changing. Have you been referred for an appointment with a specialist when you went to the hospital? I would think they would if you have had a sudden change in frequency of seizures. If you haven't then i would make an appointment with your GP for a referral.

I know its hard not to worry, I think they would offer you a scan after what happened, did they do one when you were first diagnosed?

I was diagnosed about 16 years ago and never ever had an MRI. The only thing I've had is one EEG when I was first diagnosed. This change is really unusual and I'm seeing a specialist tomorrow just didn't know if I can request an MRI?

I have epilepsy and only had an EEG. However it may be that when you see the specialist tomorrow in light of recent events they recommend an MRI. You could if its not offered ask if it would be beneficial. However I would think they would want to carry out a series of investigations and that may include an MRI. Good luck x

Oh by the way if you are not doing so already it may be worth keeping a seizure diary or a record. There may be something that is triggering this other than "worst case scenario and a seizure diary may help pinpoint a connection somewhere. Maybe your medication is not doing what it should. Are you taking anything else that is interacting with your medication and stopping it working properly? Are you getting enough sleep etc etc. There are many things that can trigger this other than what you are worried about x

Thanks owl. I will ask for more tests just in case. I guess they can only say no!!

Of course you can ask. And you should definitely raise the question of causes.

Unfortunately, as you probably already know in many cases the 'cause' of epilepsy is not known, or we can have a guess at what it might have been but have no way of proving it. If you've had epilepsy 16yrs a brain tumour seems like an unlikely cause - I think there are some really slow-growing benign tumours which can still end up causing trouble, but then it would be odd for you to suddenly get worse. Owl's advice is good, and statistically I'd guess that she's right, some irritating combo of lifestyle change/hormonal change/medication change has thrown the delicate balance off beam and your brain has over-reacted in a big way. I've lost seizure control several times. It is horrible and I've never worked out why. But more meds/different meds have sorted it out.

But if you've never had an MRI it might be worth having one anyway, not just to rule out a tumour but also to see if there is any other scarring that might explain your seizures. That kind of knowledge is reassuring even if it doesn't fix anything.

It is a fucker. I hope the seizures settle down soon.

I remember when I was diagnosed (18 then 40 now) they started me on Tegretol and I was told as you age your body changes so you may need medication changes to meet that. Its another factor to consider. As it happens Tegretol is still working for me BUT I have developed very mild neutropenia (decreased neutrophils) which they think is caused by the tegretol so they are monitoring that very closely. Its all a very fine line and any change in equilibrium can throw things out as it were.

I hope tour appointment went ok.