Depakote and keppra
Posted , 6 users are following.
hi all my name is Allen and I was wondering if anyone would know the answer to this question?!
9/9/2015 I had a subdural hematoma resulting in an epilepsy diagnosis.
im 57 years old and they put me on depakote for three weeks that helped but didn't stop the seizures completely so he's switching me to keppra and am in the process of doing that today is day 8 at 500 milligrams and at two weeks I'll be taking 1000 a day.
he tells me that if this isn't successful it could be stress related.
im still having 4 to 7 seizures a day and am hoping the keppra will do the trick.
my question is does anyone know of another med I that works with keppra that I could bring into the conversation if need be?
thank you 
1 like, 105 replies
Winnie143 allen07303
Posted
Oh the moonlight shines tonight along the wabash
Thru the fields there comes a breath of new mown hay ...of new mown hay
Through the sycamore, the candle lights, are gleaming
On the banks of the wabash far away...so far away
Repeated bits are harmony xxx Now I want you to all sing when feeling down but a happy song you like xx music is good for us Good luck All and hope pills are working xx
Win lol xxxxx For us all song xx now smile when possible and we can and will beat it xxx Hope all is going well for you all xxx I woke up last night with a feeling of the dreaded 'E' but I sang and it passed xx couldn't take my singing ha ha xx
allen07303
Posted
youve a lovely voice😃
Winnie143 allen07303
Posted
Be Well xx Allen I order you !! lol xxxx
allen07303
Posted
youve all gone kinda quiet....
a little update......so my neurologist forwarded all my info to the university of Utah neuroscience center yesterday....
i called the university to see if they'd received it and the length of time it'll take to get in and she tells me depending upon who takes my case it could be from mid December to as far out as 3 months.....
i explained to her that I've met my deductible for 2015 ($3000) and I really can't afford to meet another one...
she was very kind and told me to be (persistent) when they call to set up the appointment so here's hoping....
anyway they've upped the keppra dose to 2500 mil a day and it really doesn't seem to make any difference...
22 seizures last Friday and a dozen or so a day since...
question....
are they sending me there to diagnose which type of epilepsy I'm dealing with ?
perhaps some one here knows what I can expect?
i sincerely thank you and hope you're all well!!!!
Allen
mo-jas allen07303
Posted
bit hard to read much into them sending on your 'stats' to utah since we u.k.'ers have no way of knowing the american system; would seem they're at least pursuing an answer to your problem - i do think they should have clearly told you what they're up to though. could a phone call to your neurologist's office or another to the neuroscience centre perhaps give you some answers on that one?
as for the "3 weeks ..no, sorry ..3 months" wait thing i'm afraid to say that although i've had neuro attention pretty instantly, sadly it's an all too familiar tale here too!
hmmm.. numbers - i'm afraid i have enough trouble understanding the uk tax system so haven't a clue about how your deductibles work, let alone vis a vis healthcare but at least you felt encouragement from the lass at the uni. you never know, allen - there may even be a friendly irs whizzkid with epilepsy reading this! ..oh no ..one of those doesn't exist. ..epilepsy, maybe yes. ..irs whizzkid, possible. ..friendly?? ..erm
yup, allen - don't know how big your deductables are but as i recall at 2.5k your keppra intake's getting near the 'ceiling' ..it'll almost certainly take a while to settle and stabilise but you're throwing what to me would seem a scarisome number of seizures; do your neuro folk know the frequency?? if the meds fog your head anything like as much as mine you forget stuff so when there's a med change maybe try and note down the progress till everything finds its level, be it good or bad - including whether seizure numbers go up or down. all useful info for your consultant.
and so, the universal question ..'why'? any of us on here can really only guess at why precisely they're 'passing you up the line".. get in touch with the horse if you want it from the horse's mouth, i always say! give them a call and let us know how you get on.
(you never know - if your luck's really in there may even be a whizzkid irs type who's also a qualified neurologist 'in the house')!
all best wishes
allen07303 mo-jas
Posted
yeah the deductible is what I have to pay out of my pocket before the insurance kicks in and starts paying.
it works on the new year so any doc visits,procedures,tests etc. will be out of pocket again until the 3000 deductible is satisfied.
I spent 3 days in the hospital when this first surfaced and I get this bill from
an outfit called "inter mountain physicians services"
no kidding I seen this guy one time in the emergency room for about a
minute and I got a bill the other day for $1560.00
another neurosurgeon that seen me for a total of about 5 minutes was $1000...... I think I'm in the wrong line of work!
youre right it is a scary number and I rang em right up and the told me to take 500 more keppra.
i have only had one today which is good....
mo-jas allen07303
Posted
well, i know there's been a lot of hoo ha about obama care over there but it's at times like this i'm sooooo glad we have the NHS. That said, even that is under threat at the moment, rapidly privatising services and swooning over the american system as it changes, trying to survive increasing demand but fewer resources. and don't get me started on t.t.i.p.! ..lol - guess these are all political judgements.
the dollar figures you mention are indeed eye-watering ..i think the point is well made that without the tightest of regulation there are those who're more than happy to extract exorbitant payments ..even from a corpse if they can get away with it! what i find so cruel is that without the right level of cover, americans - in the wealthiest economy in the world - really are simply left to make do or do without! i dread to think how much i must have clocked up over the 30 years since the accident - just had my second major jaw op on account of it and i know that including the metalwork it runs at £20k a throw! mind you, that's only 1 hour and 40 minutes of your neuro guy's time so all considered i s'pose mine was bargain basement!.. hahaha
it reflects on the way your setup works that on the strength of a phone call they simply up your meds by 25% ..especially since it's still such a new drug to you. yes, i've had similar increases but never without first sitting with my consultant for an hour or so and never, never so soon after starting it from zero. i hope they at least gave you a proper consultation and screwed every bit of info they could from you before making that decision. either way, my bet is that it will 'knobble' you for a few extra days at worst and at best may just keep the frequency down. only one yesterday.. how about today?
and talking of interrogations, the 'big question'.. the 'why?' ..did you manage to get any of the info you want out of them re the specifics of what utah are aiming to achieve?
hope your day has a cheerful outlook to it, allen - good luck with it all.
allen07303 mo-jas
Posted
well I called the university today and they have my records so now I'm just waiting on the call to schedule an appointment ....
i was thinking the same thing about upping the keppra over the phone :-/
they asked me how I'm handling it and to be honest the biggest thing is it makes me have little patience and I get angered very easily...
over stupid stuff too!
well I'm assuming that they're going to diagnose the type of epilepsy I'm dealing with?
ive asked the pharmacy if I can expect to get used to the keppra so I'm not feeling like I've been kicked in the head?
sh said I should tolerate it soon.....
has anyone taken it and had o change to a different med because they couldn't ?
thanks mo
i hope Alls well with everyone here!
Allen
mo-jas allen07303
Posted
the little patience and getting ratty at the drop of a hat sounds familiar ..i chatracterise it as frustration coming out. ever so familiar in brain injury circles (i'm a card carrying member of that mob too - that's where the epilepsy came from). unfairest bit is that it's those closest to us that get the worst of it. :o(
as for the pills and the effect they have on you.. my nightmare was tegretol retard yet some people tolerate it with no problem.. for others it's keppra, altho i seem to get on with those better than the tegretol. i daresay someone, somewhere is getting laid out by just about every med there ever was. i think if a particular type of pharmaceutical 'bullet' has your name on it, the only way out is to change to another. must be a killer if the one that wrecks your life is the only one that works.
"should tolerate it soon".. i think that's what they're told to say in the pharmacy, allen.. i had exactly the same spiel from a neuro nurse over here - "you'll be right as rain in a couple of weeks, dearie".. instead of which i ended up unable to write, barely able to speak.. and then it only got worse them from there on!
however much i admire pharmacists as just as wise and far more clued up than some of the doctors i see and they'll certainly have knowledge of others on the same pill, even if they'd taken the meds themselves they could only say how it was for them, not for you.
so.. let's see how things unfold from here!
mo-jas allen07303
Posted
soooo.. three weeks on - how are you getting on and have you heard from utah yet? i've been keeping my fingers crossed that the keppra's been getting easier on you.
if you're in reach of a pc, do let us know how you're progressing and what news you have regarding what's in store.
with all best wishes to you,
mo
Winnie143 allen07303
Posted
Sorry not been on here for a while looked at post and nothing from anyone so thought you were all busy getting ready for Hols ie Christmas.
I have written once already so if you see another post from me half finished..Sorry xx ha
I hope you feel better sooner and tell them about the amount of seizures you are having and can they do something PDQ !!! lol. I mean you need a stronger or better medication to help you through this period. I wish you good luck and hope they work very quickly xx as they are horrid things. Best Wishes to All on here xx
Love to All your Pal Win xx Hope all the others are well also xxxxx
Keep Chin up Allen and all of you xxxx xxxx
Winnie143
Posted
old_nanna allen07303
Posted
SteV3 allen07303
Posted
I forgot to mention this previously, but do you have information on how to avoid main triggers of seizures? There are numerous things that a normal person can do in a day, but if you suffer from seizures you would be unable to do such tasks.
Your seizure level is quite high, which makes me think if you have been told the main seizure triggers - some of them I never even knew about.
Regards,
Les.
allen07303
Posted
It's very good to hear from all of you!
i posted a message on here earlier but I don't think it showed?!
im up to 3000 mil a day of keppra and the side effects are brutal!
lots of sleeping on it 2 to 3 hours a day anyway...
i feel like I sleep well at night I'm just tired all the time and 'very angry'!!!
i have no issue speaking my mind on this stuff!
i don't recall very good either cuz I'll have conversations about things and don't remember them....
appetite has gone away so m just not hungry.....at all!
ive lost considerable weight n this short time...
i haven't heard from Utah yet mo but I keep in contact with them two to three times a week so they don't forget about me....
im figuring out what brings a lot of the seizures on Les and they include stress and anxiety...ugh..
how does keppra make you feel nanna?
id say but the moderator would delete it for language😃
I hope for nothing but good health and happiness for my friends here and wish you all nothing but the best...
if that other message posted I apologize I put you through this again ...
Allen B.
SteV3 allen07303
Posted
I was laughing at the bit about the moderator, lol - it probably would be edited by them.
3,000mg a day is quite high, if that was me I would check with your Epilepsy Specialist. I'm on Sodium Valproate 2,000mg a day - which is high, they will not put mine any higher because it can cause adverse effects. Now, I have to see my Neurologist and Epilepsy Specialist due to the amount of seizures I have had lately, most of them have put me in hospital. So, I have seen a lot of Paramedics and Ambulances lately, on top of other appointments.
In my previous post about triggers, I was referring to things like baths or showers. A person with Epilepsy should never have a bath anyway, or go swimming, the reason is because it is one of the main triggers of seizures - cold or hot water acts as a shock trigger. The bath is obvious because you can easily drown, that nearly happened with me years ago - it is very dangerous. But back then I did not know as much as I know now.
Anyway, hope your day is better than mine, its been one of those Monday morning blues here... everything that could go wrong has!!! It's been on of those mornings - even had to cancel my Dentist appointment until tomorrow, because my doctor was running late!
Regards,
Les.
Regards,
Les.