New member - diagnosed tonight

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Stu8866

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Hi all

Just a quick hello. Started having 'episodes' this year, first 6 months I was having one every few weeks, however in last 2 months they were happening everyday, which triggered me going to doctors.

Episodes involved feeling spaced out for ~10 seconds, nauseus, deja-vu, tired afterwards. If happens when in conversation I wouldn't be able to understand what was being said for those 10 seconds and I can't talk.

Anyway, got referred to neurologist who I saw last Friday. Had an MRI and EEG at start of this week and tonight I was diagnosed with having temporal lobe epilepsy :s. Started on keppra tonight.

Hello!
 
Stu8866

You are very welcome to C.W.E. you will enjoy yourself here I hope. On a more serious note you need to watch the keppra it can have some very bad side effects.
 
Hi Fedup

Bad side effects, really? My consultant advised to try it first but I believe it just depends on the person in regards to side effects. Will likely have to try a couple of types of pills before find the right one.
 
Stu8866

Sorry I tend to just fall asleep for no reason lately (well there is a reason) you are quite right it does depend on the person that is why I said keep an eye on them, I am very against keppra but it can turn your life upside down very quick. It can effect your mood (give you mood swings) quite badly.
 
Hi Stu...

Sorry to hear about your symptoms...I pretty much experience all those myself but when it's really bad I usually get abdominal distress from a racing heartbeat and vertigo/tingly like sensation...then I have to run to the bathroom lol...not taking Keppra though...Depakote ER...I wish you the best :)
 
Welcome! You'll get a lot of good help and advice on here.

I'm on a few meds including keppra. One of the side effects, which we call keprage, is that it makes you angry pretty easy. It doesn't take much to set me off about the stupidest things. Give it a try though and if you can't handle the side effects that come with it you can always ask the neurologist that you'd like to change meds.
 
Thanks all for the welcomes.

Took my first Kappra last night so will keep you guys posted on how I get on ;)

I do hope they stop these damn complex partial seizures in the first instance; they've become very exhausting over the last month or two.

S
 
Hey,

Welcome to the forum. I am sorry that you were diagnosed with epilepsy, but at least you're getting it treated now! Just like to remind you, that you should take your medicine as prescribed or else if you skip around it increases your chances of getting seizures.

But I hope the medicine works out for you well
 
Great thanks for the note. It's the first time (luckily) that I've ever had to take meds, so I have set about a million alarms to ensure I take on time. (1 each evening for first 2 weeks and then 1 both in morning and evening after that).

Cheers
 
Is there anything else I should be doing following my diagnosis? Do I need to let certain people know - work? (possibly not as I'm in IT ;) ).

S
 
Hi Stu and welcome, I too take Keppra along with Lamictal. I take both in the extended release form which can lessen the side effects but honestly, I have not yet been on a medicine for epilepsy that does not come with some side effects where by mood and energy level is affected. But on the bright side, even with those side effects, it is still not as bad as you would be if you were wore out from having seizures all the time. But I have taken many different meds over the years and have found Keppra to be more tolerable than say klonopin, dialantin , or tegretol. But where as telling other's is concerned, that is a personal preferrence. I never told people( especially at work ) because I did not want to be treated differently. And if you tell your employer it will cause them to see you in a different light and possibly as a liability. But whatever you decide, I wish ya luck.
 
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I agree people can look at you in a different light, but its not always safe to hide it unless you can be fully controlled.......... and how many of us can say that.
 
Oh well if mine were nocturnal then I would do the same as you have as there is no need.

Julie
 
k35k35k35

I agree with you on what you said about telling others, it is a personal thing but nocturnal seizure not counting, now that is wrong.
 
well, what I mean by that is that no one see's mine or has to worry about what's wrong with me except my wife. But I still know quite well that if you tell your employer about it as I did one time cause I had 5 seizure's in my sleep and could not make it to work the next day, they will hold it against you. They see you as unreliable and possibly someone who might use your condition as a way of getting out of work. Needless to say after 23 years with Kroger and 3 years after revealing my condition to a store manager, I retired because the harassment from management was stressing me so much that I was having more seizure's.
 
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Stu --

Just wanted to add my welcome to the others', and wish you well on the Keppra. It's often the first drug tried because you can get up to a working dose very quickly (other meds can require a slower ramp-up period). I hope it does the trick for you. If possible you should wait a few weeks before passing judgment on its efficacy, since there's often an adjustment period in terms of side effects.

It can be helpful to keep track of how you're feeling. If you don't already, consider keeping a seizure/symptom/side effect diary. It can help you gauge how effective the medication is, and also give you a sense of whether you are experiencing side effects, and/or whether they are changing.

Keppra can cause mood-related side effects in some people. If you think it is affecting you that way, consider taking a vitamin B6 supplement. It can help offset that particular side effect.

Best,
Nakamova
 
Hi Nakamova. Thanks for the welcome. Yes - will certainly give it a few weeks before passing judgement on the Keppra; I have an appointment with the neurologist in 3/4 weeks so probably a good time to think about it then.

Will continue keeping a record of when I have episodes!

S
 
Hi Stu, welcome to the world of E. Epilepsy treats every one of us differently; some of us it's horribly mean to, and others is just more of a nuisance. Only you will know for sure how it affects your life. Your episodes sound like aura's, which are a seizure in themselves. I've dealt with similar aura's for 27 years, though many times they were followed with my head jerking to the left. Ask many questions of your doctor, and if you don't like the answers then search out another. I'd recommend reading through the various forums on this site as I've found a lot of info and help here without having been a member very long.
 
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