Seizure Number 8: Ergh. I woke up this morning... - Headway

Headway

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Seizure Number 8

B_S_A profile image
14 Replies

Ergh. I woke up this morning feeling alright, a bit sleepy, but my new meds does that to me anyway. I went in the shower, and all of sudden I got that weird feeling, I thought; "No way am I about to have a seizure, I've taken my meds about 20 minutes ago, and I've barely started the day". So I quickly got out and sat on my bed, until the point where I knew it was definitely about to happen.

I got my dad to come sit with me, I tried to breath deeply, but this was happening either way. I went over my right shoulder (as I usually do) as began my crazy dance moves (a seizure). Weird thing was though, this time, I was concious through the whole thing, which might mean the medication is working to an extent.

My dad watched the whole thing, which was good, as neither of my parents has ever seen one, so now the get the gist I think, and they know what I mean when I say; "Don't worry, I can feel them coming and I can tell that it's about to happen quite a while in advance."

I'm tired now, but mostly, I'm pissed off. I'm doing all the right things, and they aren't working (insert more bitching and moaning here).

Another weird thing, I now have a weird numbness in the left part of my skull, which I don't really understand.

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B_S_A profile image
B_S_A
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14 Replies
ricozoe profile image
ricozoe

hi , what medication are u taking , ive just managed to come off pheynitoin, after a year , im now on keppra,which seem to be working ,as u were awake through the fit thats a good thing ,hope you feel a bit bttr soon

B_S_A profile image
B_S_A in reply to ricozoe

Oh it is a good thing? That's good news :D

I'm on 2x150mg Lamotragine and 2x1250mg Keppra per day, we're trying to get me just on Keppra at the moment so we're just hoping the seizure was due to the change in meds.

ricozoe profile image
ricozoe in reply to B_S_A

im now taking 500mg keppra in the am, and 500mg at night, it was quite hard at first as i was taking 3 pheynition aswell , i had the begining of a fit , the warning signs and sat down but after 5 mins it cleared, i do still get headaches but now not so often ,the keppra does cause a bit of depression, which ive now gt used to , at first i thought oh no its hard enough fr me without this , but that seems to be calming down now aswell,it took me 3 mnths to come off the pheynition but now i just take the keppra im a lot better , i hope u ave sucsess with the change over .

B_S_A profile image
B_S_A in reply to ricozoe

Thanks I feel much better now :)

cat3 profile image
cat3 in reply to B_S_A

Makes me realise how fortunate I've been to have escaped seizures. I truly hope you can find a drug which works for you, before much longer, but It's admirable that you don't allow it to rule your life.

You too,ricozoe. xx :-)

PS Ben. If numbness continues, maybe a visit to the GP would be wise.

B_S_A profile image
B_S_A in reply to cat3

Seeing GP today, I'll let you know how it goes.

cat3 profile image
cat3 in reply to B_S_A

Cheers. x

Pazstan profile image
Pazstan

Richard's neurologist has referred us to the epilepsy nurse, for an education appt so I'm quite looking forward to this, to see what we will learn, and if it will put my mind at rest.

I hope the new drugs work for you. Richard has not had a seizure since being on Keppra, but since it was 18 months after brain injury that is started it's too early to say whether it's working or not. Will feed back if the epilepsy nurse says anything interesting.

Paula

B_S_A profile image
B_S_A in reply to Pazstan

I hope it keeps working for you guys :)

Has he always been on Keppra, or did he start on Lamotragine?

Pazstan profile image
Pazstan in reply to B_S_A

always Keppra, and just 250mg twice a day, but this will be going up as his neurologist things this is too low.

Sem2011 profile image
Sem2011

Thinking of u BSA, must be frightening to be aware of your fit. I know how frustrating this must be for you, but hopefully when the medication has been I. Your system long enough it will control the seizures. hang in there, I know it stinks.

!

coetzeegisela profile image
coetzeegisela

My personal advice is to leave phenyltoin. I think its pharmatologic science, though scientifically and probably as such medically possibly without peer (in this waxing age of science and the waning credibility of superstition and miracles) is laudable, it and many of its drug-related peers, still fail to deal with less extrinsic 'input'. If you wash your hands, they get clean. If you wash hands constantly, they get clean... Is 'mind over matter' only a dulling platitude?

Hi I'm new to this site but just wanted to ask B_S_A if your seizure medication are generics or the real branded ones, my husband had multiple daily absence seizures after his SAH which we got under some control but each time the pharmacy gave him a different generic make of sodium valproate tablets he would react having lots more seizures which meant he lost days. After 9 years of this I demanded our GP got hubby an appointment with consultant neurologist who prescribed the proper brand called Epilim which immediately brought the seizures under better control, he now only has an occasional seizure when he's muddled or stressed so life is obviously that much 'better' for him.

B_S_A profile image
B_S_A in reply to

Hey, yeah we went through a bit of that. About 3 months in my Mum put her foot down and started making sure I always got the same branded kind (I was a bit lackadaisical about it at the time, but she was right). I'm on "Teva" (that's what it says on the box", and I've had pretty good results with it.

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