Epilepsy... anyone else have it??

MR.BA.GT.332 · 07-11-2009, 11:28 PM

bit of a rough day for me today.... suffered another seizure this arvo. Been over 3 1/2 yrs since my last ones and was 11yrs before those when i had my 1st one so they few and far between.... but means that i might not be able to drive again for upto 6months again which is a real kick in the guts for me... so was curious as to who else suffers this bastard of a thing :(

Ralliart · 08-11-2009, 11:27 AM

i used to have it when i was younger had to take epilan tablets to control it it wasn't pretty, go glad i don't have anymore

yetchh · 08-11-2009, 12:07 PM

my sister has it very mildly from any sort of bright flashing light, multiple camera flashes etc.. four of my cousins in one family also have it mildly, the last one to have a seizure accidentally touched an electric fence and had a reasonably big one cos of it.. i'm always a little bit in fear of the major triggers in case it turns out i could be afflicted.....
do you know what the trigger was?

atec77 · 08-11-2009, 01:27 PM

Quote:

Originally Posted by mr_460bigblock

bit of a rough day for me today.... suffered another seizure this arvo. Been over 3 1/2 yrs since my last ones and was 11yrs before those when i had my 1st one so they few and far between.... but means that i might not be able to drive again for upto 6months again which is a real kick in the guts for me... so was curious as to who else suffers this bastard of a thing :(

Find the trigger and with the right medication you wont have them again , Grand Mal or Jacksons ? as each has it's own treatment

MR.BA.GT.332 · 08-11-2009, 03:14 PM

i have the grand mal seizures. Funny thing has been, i been on antibotics to fight this viral cold i got when Overseas... i have a seizure... almost 4yrs ago, i had seizures, same thing, whilst on antibiotics from a viral infection and both were around the same time, when i had about 2 antibiotics left on the script.... too much coincidence for my liking to suggest otherwise.

4yrs ago i had the seizure at work, just got out of the dump truck, walked 15steps and just collapsted... no flashing lights/welding/grinding in the workshop at the time

yesterday, i was in JB hifi in the DVD movies section... only thing that made me scared at the time was i was struggling to read the dvd spines and then went searching for my sister whom i couldnt find.... next thing i know i was on the floor and heading to hospital... and they my reasons for the triggers.... ANTIBIOTICS!

gotta try and get into a GP tomorrow and go from there tho. Im back on epilum (valpro brand) currently on 600mg but will be stepped upto 1000mg.

will keep ya's posted

MethodX · 08-11-2009, 09:12 PM

I have it too.
Woke up on the floor one day a few years ago. strong seizures, wrecked my back.
Get little mini zone outs these days.

GUTLES · 08-11-2009, 10:32 PM

I feel so sorry for you guys that have it.

My brother's got it, I remember his first one about 15 years ago, we we're going fishing & I was sitting in the back next to him, he leant over towards me & I thought he was moving from a Spider on the roof, then he started shaking.. Thank god he wasn't on his own when it happened.

Since then his had another 3, I was with him when he had his third one aswell.

Touch wood his medication is working well, he hasn't had one for over 5 years now.

Dave_Obsession · 08-11-2009, 11:14 PM

Quote:

Originally Posted by mr_460bigblock

will keep ya's posted

Best of luck mate.

Fev · 09-11-2009, 09:31 AM

My lil bro (18) started having them when he was 15 or 16. First one was in the shower - got out of the shower, faceplanted into the tiles of the bathroom - we didnt know for a few mins, came in etc etc.
Then the next day he had another one. i think 2 days later he had another one again.

Then about 4 or 5 days after the first seizure i was up late reading, it must have been about 4am. I heard some funny sounds, remembered my lil brother, ran in and he was blue. I rolled him over to his side and he got some colour back.
Scary stuff.

He's on medication for it now and he hasn't had one since.

Dr Jekkyl · 09-11-2009, 10:18 AM

I can't imagine what living with epilepsy must be like so I won't pretend to. All I can say is that I hope that you can get your meds sorted so that you are able to remain seizure-free.

Given the concurrent use of an antibiotic, it sounds like the result of a drug interaction which has reduced the levels of valproate in your system and precipitated seizure. Anti-epileptics are infamous for their interactions with other medications. The antibiotic was not erythromycin was it?

A couple of pointers.

You need to make sure that your doctors are aware of all the medications you are taking...they should ask but if not TELL THEM!

Antibiotics will NOT treat a viral infection. You may need to ditch the doctor that has prescribed you the antibiotics OR stop demanding them. I mention the latter only because it is not uncommon for doctors to prescribe antibiotics to appease patients who think they need them - I am not taking a swipe at you.

Regardless I wish you all the best and hope that you can soon again be seizure free.

MR.BA.GT.332 · 09-11-2009, 06:58 PM

Quote:

Originally Posted by Dr Jekkyl

I can't imagine what living with epilepsy must be like so I won't pretend to. All I can say is that I hope that you can get your meds sorted so that you are able to remain seizure-free.

Given the concurrent use of an antibiotic, it sounds like the result of a drug interaction which has reduced the levels of valproate in your system and precipitated seizure. Anti-epileptics are infamous for their interactions with other medications. The antibiotic was not erythromycin was it?

A couple of pointers.

You need to make sure that your doctors are aware of all the medications you are taking...they should ask but if not TELL THEM!

Antibiotics will NOT treat a viral infection. You may need to ditch the doctor that has prescribed you the antibiotics OR stop demanding them. I mention the latter only because it is not uncommon for doctors to prescribe antibiotics to appease patients who think they need them - I am not taking a swipe at you.

Regardless I wish you all the best and hope that you can soon again be seizure free.

thanks for the advice.

couple of things i would like to point out tho. i have NEVER asked a doctor to precribe me antibiotics, i trust their judgement and will take medications that they recommend.

Its funny how you mentioned that antibiotics wont treat a viral infection, cause thats what i have been given both times ive had some form of a viral infection.

the seizures i had almost 4yrs ago, i remember the doctor at the hospital asking me if i suffered from seizures before she gave me the medication, naturally i said NO cause at that time i was medically cleared by my GP for being seizure free for 10+yrs medication free, ... so naturally you would think that i dont suffer from them and at that time id only had the one off. 4days later im having seizures...

fast forward to now, got prescribed these antibiotics (cant remember if same or different brand now, but was prescribed KLACID) anyway 5 days into the script, BAM, havin seizures again....

My GP almost dismissed the fact the antibiotics caused it but i said to him straight that both times ive had antibiotics in the last 5yrs, ive had seizures so something isnt right..

Waiting to get into the neurologist again now and hopefully can get the ok to start driving again. Im also back on Epilum (Valpro) which i hope if i take that wont give me anymore... and lets me drive again sooner.

like always will keep you all updated how i get on, and thanks for sharing your stories

MethodX · 09-11-2009, 11:00 PM

Quote:

Originally Posted by mr_460bigblock

thanks for the advice.

couple of things i would like to point out tho. i have NEVER asked a doctor to precribe me antibiotics, i trust their judgement and will take medications that they recommend.

Its funny how you mentioned that antibiotics wont treat a viral infection, cause thats what i have been given both times ive had some form of a viral infection.

the seizures i had almost 4yrs ago, i remember the doctor at the hospital asking me if i suffered from seizures before she gave me the medication, naturally i said NO cause at that time i was medically cleared by my GP for being seizure free for 10+yrs medication free, ... so naturally you would think that i dont suffer from them and at that time id only had the one off. 4days later im having seizures...

fast forward to now, got prescribed these antibiotics (cant remember if same or different brand now, but was prescribed KLACID) anyway 5 days into the script, BAM, havin seizures again....

My GP almost dismissed the fact the antibiotics caused it but i said to him straight that both times ive had antibiotics in the last 5yrs, ive had seizures so something isnt right..

Waiting to get into the neurologist again now and hopefully can get the ok to start driving again. Im also back on Epilum (Valpro) which i hope if i take that wont give me anymore... and lets me drive again sooner.

like always will keep you all updated how i get on, and thanks for sharing your stories

Epillem make you hungry all the time?
They do to me.
Ruddy side effects

dannyxm · 10-11-2009, 09:46 AM

My cousin has it.

Poor bugger, during his wedding reception there were many cameras flashing as he danced with his stunning bride.

He went into a seizure. It was not too bad as he has had worse, but still a terrible thing to live with.

Dr Jekkyl · 10-11-2009, 10:07 AM

Information on interactions between valproate (EPILEM) and clarithromycin (KLACID) is scarce. It would appear that clarithromycin is largely safe and that if anything will prevent the breakdown of valproate. This means there would be MORE valproate in your body putting you at more risk of toxicity rather than seizure. Perhaps these seizures are different to the seizures you would normally have?

Alternatively you may have been suffering from diarrhoea at the time. Clarithromycin may cause it and this would reduce the amount of valproate you absorbed from your gut.

If you were my patient I would certainly not be prescribing you clarithromycin ever again!

I hope you get some resolution from your neurologist on this issue.

MR.BA.GT.332 · 10-11-2009, 05:08 PM

Quote:

Originally Posted by Dr Jekkyl

Information on interactions between valproate (EPILEM) and clarithromycin (KLACID) is scarce. It would appear that clarithromycin is largely safe and that if anything will prevent the breakdown of valproate. This means there would be MORE valproate in your body putting you at more risk of toxicity rather than seizure. Perhaps these seizures are different to the seizures you would normally have?

Alternatively you may have been suffering from diarrhoea at the time. Clarithromycin may cause it and this would reduce the amount of valproate you absorbed from your gut.

If you were my patient I would certainly not be prescribing you clarithromycin ever again!

I hope you get some resolution from your neurologist on this issue.

i wasnt on the epilum until after my seizures on saturday and the doctors in the ER put me back on it.

I dont find the epilum to make me hungry... if anything the opposite, maybe a little more thirst but certainly not hungry.

As for the symptoms of the klacid medication you described, i had non such effects, have had nothing to suggest as a side effect really, so is hard to pin point, just seems coincidental that i have been on antibiotics twice in the last 3 1/2yrs and both times ive ended up with seizures with no pre-warning side effect etc... its just "bang" and it happens... without the 'normal' triggers needed like flashing lights etc...

i go in for an EEG on tuesday, then, its a waiting game til maybe the end of january to see the neurologist... but im also on a cancellation list so hope can get in sooner cause like to find out if i can be cleared to drive sooner rather than the 6months and to figure out whats goin on!!