Depakote and keppra

Hi mo,

Day two just taking keppra.

What an unpleasant ride.

I'm very tired and totally bummed...

Actually looking forward to doc appt next week.....

Does anyone ever feel like what did I do to be blessed with this "life altering nightmare"??

always thought i knew what i did to be blessed with mine.. 

..but shock, horror - what if it's all about something we DIDN'T do?? ..lol   

sorry to hear the keppra's giving you such a kicking allen but it likely will settle a great deal as your body sizes up to the increased dose.. i guess your doc's primed you on all that at the outset.

problem can be if it simply doesn't let up but goes from bad to worse, as it was with me and the evil tegretol retard.   any and all of these meds are powerful voodoo and hit us all so differently and in so many ways but with tegretol my only way out was to get off them.   i hope you haven't just discovered your own personal 'tegretol black hole' with the keppra.

that said, even with a bit of damage the body remains an incredible machine, even if it is utterly bombed-out asleep for much of the day right now; with a little luck, in a week or two yours will be putting all this upheaval out with the trash - where it belongs - and you'll have your head back.!

 

Hi Winnie, thanks for your well wishes, I'm having a bad day today, can't come soon enough for my next visit to the hospital for another adjustment. I've had a few good days (2-3), and hey ho epilepsy shows it's ugly face, I've collapsed on the bathroom floor and my son had to come in.

It's depressing and degrading, do you ever get that way and want to lock yourself in a room and be alone?

You're so right about the keppra....I feel like I've Been bombed!!

the seizures every day?

yes I'm afraid so and I'm trying to figure out. What triggers them.

..the sound of tiny wings

To All my Pals on here xx

Mainly Allen and Karen who aren't well today hope Wednesday brings you some relief both of you xx

Just call me Miss Piggy,  Mo  lol x

Perhaps you need another drug better suited to you Allen and Karen have you been stressing out?  Bet you are both shattered  xx

Keep chin up and so scary for you both xx  Love you All and feel for you also xx My daughter used to run when I had one.   I'll pop in tomorrow and see how you 2 are coping  xxx laters All xxxx Thanks Mo luv Miss P lol xx

 

Hi more jas, I like the picture you've attached to the message. it's brilliant and speaks volumes. Karen x 😁

hiya karen.. yeah, i snapped it going over when i realised my consultant was actually listening ..thought it might reassure winnie that some really do!  in fairness, most of mine do - just the one that doesn't.  i guess i should be thankful that for me, 3 out of the 4 do - or things would be a whole lot more difficult than they are!

Right told Consultant about me downing/lowering pills he was a little peeved and said "You have a scar on your brain and a seizure could kill you" which cheered me up no end lol. I said I do not want to live my life sleeping like a Zombie ie zonked out. I said I also do not want to spend what's left of it asleep.  I want to enjoy what life I have left and taking Keppra isn't giving me that option.  He said "well if you know better than me no point in me seeing you"  I told him it's my body and I know when I feel ill by a drug. So we both looked at each other and he wasn't going to budge lol  so that was that  xx Ahhhhh  lol xx So made another appointment for a years time lol xxx  Hope you all had a good one xxxx

Told you I was dramatic lol  xxxx

For all of us to let you know it is better to fib to Consultant xx sorry about the lol's but I feel shattered  and laughing brightens me up xxxx

Hi Winnie ,

the keppra is making me feel like ugh too....

im thinking he put me on it for a good reason?!

in my mind that's what I pay him for....

i too have considered not taking them at all and see what happens but I don't have your where-with-all

in short I'm a chicken

I'm sorry your feeling shattered...

god speed to you,

allen

Good luck Allen and we should take some notice of them, but if we feel worse on a drug we should also let them know, shouldn't we

It is easier they told me on my system ie liver etc  He told me you have been on phenobarb so long you are addicted to them (Thanks) lol

Keep Well and do not be down, as the song goes  (this is our song) Ready?  Don't worry be happy and go to bed with a smile tonight xx love to my Pals xxx  Win

hi winnie - and alan too.. have to say i'm pretty depressed to hear how things have gone on the consultant front.  i'm pretty appalled that a senior physician - a consultant - would for any reason reduce the very valid discussion you wish to have about a medication which has so seriously impacted on your life, to a case of "so you think you know better than me?" and shut the door on you.   but then, he's a consultant, so 'nuff said!

it's simply not good enough, winnie.   if you're in the uk then i reckon you should consider chasing up someone like "PALS" at the hospital if only to put it on record; your gp (if uk) really should also be wading in to help you.  as i recall the notes that always come in the box with any meds list all known potential problems and specifically say if you have problems with them, then tell your healthcare professional!  it couldn't be clearer.

had you perhaps thought about asking for a second opinion?  you're perfectly within your rights to ask for one.  lord knows why i haven't myself, considering my only 'difficult' consultant has been so like yours. ..o.m.g. - seeing as it's such a tiny world, what if it's the same chap?? ..eeeeeek!!  ..lol!     

Sorry to hear mo but I kinda get it too..... They've doubled me up on keppra to 2000 mil a day in an attempt to knock down the seizures (5 yesterday) cuz if not then it's off to see an epileptologist at the university hospital in Utah that's 220 miles away. Question for all!?!?

Just how long does keppra keep you knocked down in the dirt???

Good grief!!!!!

Talk about side effects :-/

Hi Allen, if the side effects done subside after a period of introductory then your Dr should consider an alternative. I used to do the opposite when starting a new AED in that once the 'honeymon' period is over I revert back to how I was before trying a new drug. It's Drug Resistant epilepsy, and no amount of drugs will help. I had a VNS fitted in July and I'm slowly having it ramped up. It might be an option for you.

hi again allen ..and all   :o)

hmmm.. 2k of big white ones a day has a familiar ring - i was doing the same for a spell during my last regime (keppra and my personal bete noir tegretol).  i'm doing less now but they still hit me.  i'm now taking lamotrigine with them.   this is the first one they've hit me with that hasn't laid me out flat.  at one time i was unable even to sign my own name; much improved now but far from ok.  one way to look at it could be that they simply do "exactly what it says on the tin" - or in this case box ..and in it, not on it!   i'm talking about that bit of paper again.  the one that says "may lay you out like a kick from an ornery mule".  can't say they don't warn us - in fact i'm sure i recall one set that tailed off with "and other reactions up to and including causing death"   (haha) -  but that takes me back to my post to winnie ..what is her consultant's job if not to bust his ass trying to find the right med for her?

Hi All,

Allen sorry you are having the horrid things still, perhaps they will kick in soon xx

Mo you make me smile, ta for that as we all need laughter especially Karen and Allen xx at this moment xx Hope things get better soon xx

Les and Evelyn hope you 2 are keeping well xx

Love to All and if I missed someone out sorry  xxxx  Smile All xxxx

All take care of yourselves and sing xx xx  when poss !!

 

Hi Allen,

I have been through "hell" this week with anti-epileptic drugs, and what happened nobody even seen coming, not even myself.

On Saturday it was my wifes birthday, but all day I felt really "out of sorts", and not felt like it in a long time. Anyway, I retired to bed earlier than normal, my wife asked if I felt okay, I said apart from a stomach ache I was fine.

Anyway, I got in to bed, adjusted it so I could watch TV, and the last thing I remember was playing the movie on NetFlix. After, that I was sort of in a daze, drifting in and out... but I did not really know what had happened until I came around properly.

I went in to a seizure around 11.30pm, my wife thought she would try and give me a drug that my doctor had prescribed that can bring people out of seizures called Bucculam, about 5ml orally and within a few minutes - something was not right, I was told instead of coming around I didn't, it caused an Adverse Drug Reaction (ADR) and the symptoms are rare according to the directions. But this is what it said "aggression, agitation, anger, confusional state, euphoric mood, hallucination, hostility, movement disorder, physical assault." - I was hallucinating for ages, hostile, movement disorders become worse and my wife had to try and stop me trying to rip my skin off my forehead!!

Only one paramedic arrived first, and tried twice giving me Valium with no effect. Two more paramedics turned up in an Ambulance, they agreed to taking me in to hospital by leaving the first paramedics car behind and two stay in the back with me, trying to calm me down and get the seizure down. I infact had 9 seizures within 2 hours, before I calmed down to what I classed as normal, not normal by the Doctors though, because I also suffer from Generalized Dystonia which is another nerve related condition.

I had a word today with my neurologist to book an appointment in 12 weeks time, and more BoTox Injections in 10 weeks time. It was not my Neurologist I seen today, it was just one of the team. But I need to make more appointments to see my Epilepsy Specialist and my Doctor. Because the drug I was given caused a major ADR, which should have been checked prior to prescribing it.

But I am okay now...  well, what I call normal - not what Doctors call normal.

Regards,

Les.

You wrote to Allen, Les but me being a woman I have to butt in xx

Hope you are well now Les. 

Take care and rest up xx

Night Les ..Dunno what to say to you.  xx

Be Well and Good luck, as what happened to you sounds awful.

Win xx

I agree with Winnie Les...

What a horror movie and I hope alls well now as I do with all of you.

I can't imagine the toll that takes!!

All of you are so kind to respond to my stuff I feel bad for you all.

University hospital calls me back today and tells me it could be as long as three months before they can get me in depending on what my neurologist exactly refers me to be tested for....it's really turned into a waiting game :-/

My absolute best to all of you!!!!!

Thanks Winnie and Allen,

30 years with Epilepsy, and still not controlled - the main drug I'm on is Soldium Vaproate 2,000mg a day. They will not go any higher because it can have an adverse effect, which I just been through, but with two drugs reacting with one another. I am on other drugs, but when an (ADR) happens normally the Police are called in to try and restrain the patient while the paramedics are treating you.

Epilepsy I have lived with all my life, I was not born with it, it only revealed it's ugly head in my early 20's! But, my dad had Epilepsy - so I knew what it was all my life.

Allen, over here in the UK we can actually phone our Neurology departments, once you are registered with one and can book appointments in advance, I do it all the time to make sure BoTox is administered every 10th week on a Thursday. But, to see my own Neurologist whom is well known in the UK, I have to book him 3 months in advance, there is a difference to having BoTox being administered by a member of the Neeurologist Team and your own Neurologist. BoTox is done on 5 minute appointments, whereas a Neurologist Appointment is 15 minutes and you can actually chat to him about concerns, or additional issues, sometimes this may lead to a full review, which is all done in the allocated time, sometimes they do go over.

I was actually diagnosed by a Professor in Neurology from New York in the USA, many years ago. Sadly, he passed away quite young and it shocked the world of Neurology, but I'm going back years ago!

@ Winnie, you had to bring in the word "butt" lol - thats were Valium is administered by paramedics. My wife made me laugh, she said the paramedic said his bum is "really clean" - it's only because we have a Bidet/Toilet, and not a standard toilet. That was paid for by a Disability Facility Grant, basically to purchase disabled adaptions to your premises up to £5,000.

Anyway, I'm off to bed - no more of that nasty drug!

Regards,

Les.