Mother in search of answers

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DENISE

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Hi, my 24 yr old son just graduated from college in Dec. and Jan 5th had a grandmal seizure in his sleep and was rushed to the hospital. He was put on Kepra right away and after seeing the neurologist was diagnosed with epilepsy. He then had an MRI and EEG which were both normal. Maybe as a Mother I am just being hopeful, but how can they be absolutely sure this is Epilepsy? He was auditioning for the Airforce Chorus but now with this diagnosis he cannot.
 
Welcome. I had my first diagnosed seizure when I was 23. A grand mal (or tonic-clonic as they are more often referred to now) in my sleep as well. I was diagnosed with epilepsy then, based both on history and the fact that without meds I have the tonic-clonic szs, and even with meds I have lots and lots of partial szs., but I can live with that to minimize medication side-effects.
As for a diagnosis of epilepsy, it often has to be made by symptoms rather than by EEGs or MRIs or other tests. I have never had an abnormal EEG, and the first abnormailty in an MRI (some hippocampal atrophy) was after 15 or 20 years of seizure meds, and the neuro said that could have been the cause of it.
I don't know if there was any other possible cause of his seizure. I would do as much research as you can, get a second opinion if needed, and try to rule out any other causes. Also, be aware that there are a lot of good meds out there, and some have far worse side-effects than others. Not to influence you, but I was on Keppra for a couple of weeks a number of years ago and absolutely hated it. I got to feeling extremely depressed and hopeless and there is no way i would touch it again. Other people won't react that way. It's kind of a gut feeling I have that Keppra is prescribed a lot these days. Maybe I'm a bit cynical having worked in the medical field for about 15 years, but I sometimes wonder if docs prescribe meds because they are the best med or because they have the best marketing teams and the most generous pharmaceutical reps.

Best of luck with this! I wish you all well and hope you find some answers.
 
Denise,

Warm welcome to CWE.

"He was auditioning for the Airforce Chorus but now with this diagnosis he cannot. "

I am so sorry for your Son, can only imagine how devastating this is for him and you of course.

I so agree with Arnie, for 2nd and if needed 3rd opinion.

After 1 seizure only, and clean MRI and EEG it’s very rare to be put straight on meds. In fact, by rule epilepsy is only diagnosed after more than one seizure, my Son of 27 has had many and mainly nocturnal T/C. He has abnormal EEG = spikes so the E is visible. He is not on Kepra, but hates the meds he is on....so we do all in power to prevent increases, and yes lots of that is lifestyle, which is so hard in your 20s when u want to be out there having a good time..

These E meds can be heavy going, suggest you make a dairy, note anything out of norm, including all seizures and unrecognized/new behaviors/health concerns (not saying they will be – but no harm to keep close eye). Simple dairy on kitchen table (any kind of notebook) can be shared, used by your Son and all family can make note of anything out of norm. It will truly help you when facing doctors and it may help find triggers if another seizure occurs, which please God it will not.. If he is not at home, maybe he can ask roommates/friends to do same..


Keep us posted…
 
I'm glad you suggested the diary, Chaz. I second that all the way. I still keep a very basic record even after 30 years, but in the beginning it's important to be a lot more detailed.
 
Hi Denise --

Was there an EEG done in the hospital, before he was put on Keppra? If so, that may have shown abnormal brainwaves, and been the basis for the neurologist's diagnosis. If so, second EEG was done while he was on the Keppra, that might have prevented the abnormal brainwaves from showing up.

Either way, it's important to feel sure about a diagnosis of epilepsy. You and your son should contact the neurologist to discuss the diagnosis and find out the reasoning behind it. And getting a second or third opinion is an excellent idea as well. There is definitely a chance that is seizure was a fluke, perhaps brought on by unusual stressors in his life. About 2% of adults have a seizure at some time during their life. Two thirds of these people never have another one.

Best,
Nakamova
 
Hi Denise! Welcome to CWE! :)

Im sorry to hear about your sons experience with seizures. I agree with the others in looking into what the testing did say. If the tests did come back saying there was no activity seen, I would probably be seeking a second opinion as well just to see what they had to say.
 
Thank you so much, this really helps! The Dr. did want to change his meds to Lamictal, are you familiar with this medication?
 
Only a scan was done in hospital and it was normal. The EEG and MRI were done 3 wks. after diagnosis from Neurologist was made.
 
DENISE said:
Thank you so much, this really helps! The Dr. did want to change his meds to Lamictal, are you familiar with this medication?
Click to expand...

I've been on Lamictal for probably about 15 years now, and like it. In the past 6 months I've started taking Trileptal as well, which has reduced the frequency of my partial seizures. No matter what med I have been on I have always had a certain number of partials. I think if I took enough of one of the meds to stop the seizures I would be totally snowed or suicidally depressed and be unable to do anything at all.
 
It does seem premature to diagnose epilepsy after the one seizure then. Definitely have a chat with the neuro about this.

I'm on Lamictal as well -- almost 5 years seizure-free on it. It's supposed to have fewer cognitive side effects than some of the other meds. Everyone reacts differently though.
 
Is the generic for Lamictal ok or is it best to stay with the brand name drug?? It gets pretty expensive especially with no insurance
 
From a layman's point of view I would say the it's fine. That's what I have always taken for all my meds if there is generic available. None of my docs have ever said there was a reason not to take generic.
 
I'm on the generic Lamictal with no problems. For some people, switching from the brand to the generic can sometimes be problematic for them. Lamictal seems to cause fewer brand-to-generic problems, compared to other seizure meds. And if your son is starting out on the generic he should be fine.
 
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