My Doctor upped my Medication of phenobarbitone from 90 to 120 with 3 x 150 keppra. I told him a Nuerologist said no higher than 90 ever. I told my Doctor this but he said I needed them now, I have burning in my gullett and tum and all I can taste is bleachy smells etc. I have now downed them back to 90 but still get a bad heartburn and sicky feeling in tum and my skin feels hot ...I know I need to see Doc again but I do not feel I can trust him after this. He poo pooed what I told him. !! just wanted to give Vent
Hi win🙂
I find it interesting how we all react to meds in a different way.
my neurologist has me taking 3000 mil a day of keppra and I absolutely can't stand it.
i got in to see an epileptologist and she said we need to change it straight away so over the next several weeks I'm shifting from that to another med.
im by no means an expert because I haven't dealt with it like you,mo-jas and Les but that doesn't sound good at all and you must be miserable.
in my mind you need to see the doc again and speak your mind...
id like to see you enjoy the holidays in comfort🙂
All my best,
Allen
p.s. 🎶 Winnie 🎶
They taking you off Keppra Allen ??
You always put on a brave front but you must feel like saying to the bleeping get your act together lol xx Do you get nasty taste or smells ?
All the Best and go get em Allen xxx
When ever I feel afraid I hold my head up high
I whistle a happy tune and no one will suspect I'm afraid........ Whistle whistle
Your pal Win xxx where are the others ??? lol done a runner from my mystery stench ha ha xx
Find the missing m Allen ..Typo lol
Yes they're taking me off keppra and putting me on limotrigene..
another slow extended process of one to the other...
yes I do get those weird tastes and smells..
the smell is of electrical burning and the tastes are of ( and this ones strange) welding galvanized metal!!
told you it was weird🙂
I think everyone is caught up in the holiday spirit to be honest...
hopefully anyway,,,,,And that's a good thing!
i hope your Christmas was wonderful and all my best for a happy and healthy new year🎉😉
your friend,
Allen
p.s. 🎶keep singing Winnie🎶
All medication has some side effects but cannot be as bad as your Keppra (notice they are your Keppra now lol ).
I haven't had a single choc over the holidays oh yes I did but only on Christmas day xx and two milky drinks lol.
Keep well and remember head up !! shoulders back and say to Doc "Side effects first please" Wishing you good luck over the New Year xx In other words Back at ya lol xxx keep a smile handy, I'll be thinking of you xx
Pally wally doodle all the Day xx Off to look up limotregene
Well I gather you are not pregnant or breast feeding lol so all should be okay xx
Joke Allen xxxx
Now a song
Oh Dannyboy the pipes the pipes are calling
From glen to glen and down the mountain side
The Summers gone and all the leaves are falling
Tis you tis you must go and I must bide xxxx Too Sad I'll think of a happier one xx
Hey win🙂
Yes that's a very safe assumption on your part my dear .....
i have to tell you though that "Danny boy" is an all time favorite of mine!
if you get a chance listen To Ray Prices version of it....
it's wonderful
Winnie
I was on phenobarbitone years ago. We all have different experiences with these meds. I felt stupid and didn’t realize how stupid until my meds were switched. You shouldn’t have to deal all of these side effects without your Dr’s concern. Your skin burning should be looked into asap. Is it leaving scars or turning your skin red? Some anti-convulsants can cause a serious skin side effect known as Stevens-Johnson, which in extreme cases, can be fatal. It only happens in a small number of people but it can happen at any time when taking some seizure meds. Allen, lamotrigine seems to be one of the anti-convulsants with a higher risk of developing Stevens- Johnson syndrome. Young people starting out with lamotrigine seem have the greatest risk. I don’t know if it’s coincident, but I started getting what looked like bruises on my arms after starting lamotrigine. They didn’t burn, but just showed up. I called my Dr up. He didn’t think it didn’t sound like S-J.
Steve
Hey thanks Steve I'll keep that in mind because I'm getting introduced to it slowly at 25 mil twice a day into 100 mil twice a day over several weeks tapering out of the keppra..
honestly with the keppra I'm the most miserable angry person anyone would ever come by aside from the other side effects that's the one I hate the most and I'm being told so by others so it's not an exaggeration like my mind would make me think...
I've gone the rounds with my neurologist about it and the pharmacist as well.....needless to say I've not made any friends lately!
all my best,
Allen
No My Brother Terry sings it, well used to but he is older than me by a just over a year and he used to sing it in the key of C I will listen to his though (he is 21 lol oh a pig just went overhead) ha ha
So be well and good luck on the other pills
My dog will cross her paws and I'll cross fingers for you.
Keep Well Pal xx
I was fine on them Steve but the Dr's said we have to up them, I told them that a Specialist said never take more than 90 in the mornings, but did they listen to me in a word Nope !! grrrr lol ...
My skin feels hot since they overdosed me lol as I feel that's what they did/done to me. Well back to 90 in the mornings with white pills for burning windpipe (As you see Steve I am melodramatic) but they really messed me up not had a seizure in 6 years and got the shakes this morning got hubby up at 5am !!! lol Ahh well perhaps they wont give over the allotted amount ever again!! Grrr Listen you Docs !!
Keep Well Steve and Allen and thanks for being here ..any requests for a song? ha ha
Love to you both and keep well
Win
Allen my brother beat him hands down lol
Winnie, You can sing “You’ve got a Friend” by James Taylor or Carol King. Both on youtube. You’ve had to have heard it. It's a classic. James Taylor is the one who made it famous. Carol King wrote it and has her version.
Allen, Its good they’re tapering you on and off slowly. My Dr witched me from 450 mg of lamotrigine to 2000 mg of Keppra and I became a different person. The slightest thing could cause me to lose my temper. I almost got arrested one time. Now I’m on both lamotrigine, 450 mg (maxed out) and levetiracetam (generic Keppra) 1500 mg. With both, I don’t have the anger issue.
Steve
I'll make my own words up when I can't think of them okay Steve as I always do lol For All who have Epilepsy to the tune of "You’ve got a Friend as sung by Carol King and James Taylor
When you're down and troubled and you need a Doc to listen
And they keep changing all, why all of our meds
Think of Allen and all of us and soon you will feel a smile
To brighten even your darkest times
You Just type out your thoughts and you know whenever we can
We'll come typing and share your big E problems
Winter Spring Summer or Fall
All you gotta do is call and we'll be there yes we will
Aint it good to know that we have some friends x2
Altogether "Doc's You listening to us!! "
Well did I sing it okay added my words as you saw lol Be Well All
Winnie
Very good! I like it.
Steve
'ho ho ho' and merry christmas, all ..oh no ..it's new year - have a good one of those instead! ..lol ;o) hi winnie and sorry to hear you had such a ratbag of a time with your meds ..especially considering it's the time of year for goodwill to all men - don't imagine you've been able to include your docs in that!! mine's been a mix of a great christmas and a little run of seizures threading through to spoil it a bit ..nothing bad and no injuries so kinda counts as a success! ..hmmm 
and hi again to allen - sorry been so slow getting back on your remarks about the specific 'welding' smell.. auras - frequently herald the onset to a full-on seizure and are absolutely well observed. mine became everything from an 'early warning system' counting down through 'the beast is in the room' to 'here we go'. the irony was that the first thing the meds did was take them away so for a year or two i was just going face down in the furniture and breaking things! seemed to have got better at spotting them heading my way eventually so i hurt a lot less now. mine were, amongst other things, the taste of a battery on the tongue.. crazy fairground music with a 'waltzer' roundabout, horses going up and down and the oddest one was standing right next to a rocket as it lifted off - all accompanied by that 'deja vu but can't put my finger on it' thing they're always banging on about. if you can spot auras, make them your allies - they might just save your life one day.
oh blimey steve.. hello, but i REALLY coulda done without looking up the stevens-johnson thing.. firt wiki item in google showed a 'so wrong' picture! ..lol on the other hand, i'm sure i remember one of my med's info sheets had the line 'and other possible side-effects up to and including causing death'.. thankfully i look at all that kinda stuff and think 'nah.. they're talking about the other guy'.
i'm on keppra and lamotrigine too ..it's interesting to see how each of us react to the things and the common themes ..speed of changes, different drug combinations and especially of inexplicable anger bubbling under.. i characterise mine as 'frustration' but it's all the same thing.
right now tho? happy as larry and only hope all you good folk are too!
so happy 2016 and hope we can all look back in a year's time and can say 'made some progress; things are better'.
jas. x
Hi all ,
Well happy new year to each and every one of you!
Gosh I think it's been tough on each and every one of us for one reason or another!!
I want you all (particularly jas) to know something....
Each and every one of you have been fantastic about responding to my sometimes weird goofy posts....
I've had but one from here in the states...
Yes it's strange guys but I can almost always tell when the seizures are happening or coming on....
Yesterday was lousy with em cuz it was a stressful day...
They tire me and I get awful headaches!!
Jas?? I'm ready to try the c without the b and d!!!
My absolute best to each and every one of you in the coming year!
With luck it'll be better for all of us😊
Pleasure to meet you Steve and ....Winnie??.... You keep on singing!🎼🎼
Jas?....you're the man😀
Allen
..yeah rite ..'the man' ..hahaha