Depakote and keppra

By the way, an Epileptologist is actually a Neurologist that studies moreso in Epileptic cases rather than any other disorders.

There is a saying over here "You can never have two Neurologists the same!" - which is very true.

I suffer from Epilepsy, but my underlying disorder is Dystonic - You can guarantee if a person suffers from a nerve disorder then somewhere along the line Epilepsy or Functional Episodes will creep in, because they all belong to the Nervous System. You could have Epilepsy as an underlying disorder, and in a few years another disorder appears, it's the way the brain and nervous system work together. Some people can get away with just Epilepsy, sadly mine is very complex and now my Epilepsy is no longer under control, so I have 2 appointments in January to see to different Neurologists, both of them belong to the same team, one is a top brain surgeon in Neurosymptoms the other deals with a few disorders, but not a brain surgeon. People say MS is not a disorder that can be treated, the Neurosurgeon I am under made the news back in 1998, he actually done a major operation and cured a MS sufferer!

It just goes to show the more Neurologists you know the better.

Regards,

Les,

Tell the Doc he changed you and you can't have that many fits in a day as it is tiring you ..Go get em xxxxx Then ..Ready for song ????

Sing sing a song, sing out loud sing out strong

Sing of good things not bad,  sing of happy not sad

Love to All on here and go get em Allen  wishing you good luck xxx

Win xx  All will be well xxxxxxxx There is a song called the drugs don't work !! .. can you get money back lol

Thats a very good carpenters rendition!

i enjoy your singing.....

lots of info today...

first after a visit with Dr Pegah Afra (google her you'll be impressed) I'm officially part of 'the club'.

she spent 2 1/2 hours with me yesterday and I feel it was well worth the 220 mile drive to finally get some definitive answers...

shes changing my meds from keppra to another that I can't remember cuz one it isn't working and two I'm the angriest most miserable person you'd ever want to meet.....even the needles falling off my Christmas tree p&$$ me off!!

theyre doing blood work to find acceptable levels of something...

the craziest thing though is I had a Deja vu when we got there and two seizures while in her company so I guess timing is everything....

i had a meeting with my employer day before yesterday and my career as a school bus mechanic is pretty much over

it was a good thirty year run and I'm satisfied with the programs I've put in place over the years......

so now paperwork is on the way to start the disability retirement process..

i do expect it to be a lengthy drawn out adventure but the school district will continue to pay my benefits and sick leave through all of next year which has weighed heavy on my mind....

it's funny how , let's say in my case that I was rolling along very comfortable then boom literally kicked in the head!!!!!

youre all wonderfully good folks,

thanks allen 

Glad they are changing meds for you, xx Good Luck to a fit free Christmas. 

My meds are burning my tum as since I took them I have started to feel worse and from my wind pipe to my tum it burns and I feel so ill.

Why they couldn't just leave them alone sheesh I don't know,  so I am taking what I feel ok with, saga of Win and her pills to continue.

Sorry about job Allen but do what is best for your health she says taking another pill for heartburn !!  Love to you all I have to go as I'll cry as a whimp like that xxxx  ha ha  I have started crying now !! shouldn't have typed that.  Good luck to my pals all of You XXXX Win xxxxx

delighted to see your positive post last eve - way too tired to start a reply but it cheered me up to see you've had what seems like such a positive encounter with "the man" ..(who of course, turned out to be a woman! ..lol).  re dr pegah afra - i did (google) and i was (impressed)!!  in my experience a clinician who can inspire confidence is worth their weight in gold and it seems like you just found yours!

silver lining to the epilepsy cloud is that if you're going to have to go through it you couldn't do better than have 'em in front of your doc - ..simply seeing them - that's her version of "worth it's weight in gold" if she's going to understand the nature of your seizures!

as for the work thing ..afraid the sad and inescapable fact that for many of us epilepsy has come uninvited, unwelcome and out of the blue - think i mentioned mine from getting a head injury when i was hit by a car.  you spoke at the outset about your subdural haematoma but didn't mention how it occured; i'm left wondering whether your "then boom literally kicked in the head" remark was more than just a 'throwaway' remark.  do you literally mean 'literally'?   were you perhaps assaulted?  

as with me, the epilepsy you have to cope with is the result of another event and as with me you really have no choice but to accept it really has changed your life.  the main task is one of managing it - as with the retirement process.  at least you appear to have a structure around you which will ease the financial worries you must inevitably be facing.

as for the good thirty year run - all the good years before the epilepsy struck ..you know what they say - smile cos it happened rather than cry cos it's over.  my guess is you haven't yet had a chance to start spotting all the positive changes that can follow.  time enough for that later but please know i'm wishing you all the best of luck and patience as you move forward building on the meeting you've just had.

last thought.. did you take notes of the meeting?  what was said ..what is in store?  if not it would seem perfectly reasonable to ask if they could let you have a summary.  i'm sure they won't be the least surprised to hear you didn't take it all in!   it might be useful to you to have such a record even if only that it raises questions you didn't think to ask at the time.

good luck with the new meds - maybe they'll work, maybe they won't but there's one way to find out ..just be cautious about expecting too much of them straight off.  give them time before coming to a judgement.

lastly, the usual.. stay in touch and don't be slow putting your thoughts down here if they're running too fast for staying inside your head.  we ain't doctors but we do have a clue what will be troubling you and may just be able to offer a measure of reassurance through the dark patches..

all the best allen.

Dr Afra actually called me yesterday to see how I am and if we got home safely......it's hard to carry a positive attitude through all of this and what I meant by the term 'kicked in the head' is just that....

i remember talking to my brother about the bratwurst I'd smoked earlier for dinner and then waking up n the back of an ambulance with some guy asking me f I knew my name...

(perhaps my brother clouted me in the head with a rock!!!)

when I went down I cracked my noggin on a rock and there were two neurosurgeons at the hospital that couldn't agree on how it happened....

one said I had bleeding on the brain that caused me to seizure and hit my head and the other said just the opposite...

my doctor now says that she's certain it was the first option...

and yes you're so right about having some answers mo😉🙂

no no more assumptions on my part or guesswork ...

it is what it is so now it's dealing with it and seizure meds for the rest of my life....

it's hard t find any good in any of this but I know I don't have this as bad as yourself,Les and Winnie ......

i guess what I'm saying is I'm fortunate in some ways and back in the day I could think more clearly I put things in place financially speaking that'd benefit me in case some disaster like this happened and I didn't think I'd ever have to use it but I am and it's paying huge dividends!!!

actually mo I recorded every word cuz I know I wouldn't have retained much of it...

pone of the best things I've done since is reach out to you guys for direction and advice and honestly?!

you have all showed more care and concern about how I'm doing than most of my own family!

my family is quite dis functional and whether it's right or wrong it's just the way it is.....

i really appreciate your friendship and kindness...

Allen

p.s. Sorry if this is rambling but hopefully it makes sense

how are you all doing?

ready for Christmas and all that good stuff?

..wow ..what a lovely touch that the doc rang to check you got home ok.. to give you some perspective over here the furthest inland point from the sea is just 70 odd miles - the idea of having to travel the distances you do just isn't an issue!  i only had to go 150 miles to reach one of only 3 specialist hospitals in the uk that do it to have an entire new tmj (same bang on the head from the car accident wrecked my jaw joints - first major op in '84; just took the whole lot out and replaced with metal and plastic in june of this year ..funnily enough, i found this site cos i wanted to post on the tmj subject but i immediately got so tied up with epilepsy stuff i still haven't yet done it - there goes that 'getting sidetracked' thing again ..you get that? think it kinda goes with the territory ..lol)

anyway.. enough about me - this is about you.

as for answers and "no more assumptions".. that must be an unbelievably liberating feeling for you; in itself it'll perhaps allow you to see a 'path' ahead, rather than constantly feel like you're stumbling around with no clear direction.  i remember the day well when they "named my beast" and after having by that time lived with it for so long just what a sense of uplift i got from finally knowing.  it wasn't news i wanted to hear but at least i knew what i was 'fighting'.  and now you do too.  bonus!

big thumbs up for your foresight in recording the meeting, by the way.. you're starting a journey and that's just the first piece of the map - one you may want to look at years down the road ..hopefully to remind you of just how far you've come.

glad you feel dropping in here was a good thing, allen.. sadly i can empathise with the family bit.. but i think that's just families for you - dysfunctional or not.  i suspect that by our kinda age our roles within the family are so entrenched there's almost a blindness to change.  also, as they say.. you'll not always recognise someone with a brain injury simply by meeting them but just you try hanging around with them for a couple of days!   on the other hand, one of my nieces totally gets it, but then she's a medical type so no great surprise there.

well, allen.. stick with it - stay with us as things unfold.. and while i can't speak for winnie and les ..don't u even THINK i/we must have things worse than you're facing.  it may be cos i'm nearly 30 years down the road, i'm well familiar with it and have figured coping strategies but i'd put money on yours being worse than mine (but remember ..that only applies right now ..check with me in a year ..it may just be that by then you too are cruising thru the whole thing.  aim high, allen - you might as well)!!

finally.. i've even heard of hippies smoking banana skins but NEVER bratwurst. no wonder you fell over!  give it up!   just say no!!!

 ..lol