HI EVERYONE,
I'M HAVING A VERY BAD DAY TODAY. IVE HAD 100'S OF PETI~MAL FITS ALREADY TODAY AND ITS ONLY 1pm . I'M NOT LOOKING FOR SYMPATHY OR ANYTHING LIKE THAT.FORTUNATLY I'M NOT THAT TYPE OF PERSON.
I GUESS IM TALKING TO YOU GUYS INSTEAD OF THE PEOPLE WHO CARE ABOUT ME. I REALLY FEEL FOR THEM. ON DAYS LIKE TODAY THEY WORRY SO MUCH AND I WISH I COULD MAKE IT BETTER FOR THEM.
I SWITCH ON AND OFF SO OFTEN (NOT FOR LONG) MAYBE 10 SEC OR SO BUT ITS JUST THAT ITS ALMOST CONTINUIOUS.
I MUST ADMIT AT THE MIN I'M VERY SCARED BECAUSE EVEN THOUGH THEY ARE PETI~MAL FITS AND ALL I EVER HEAR IS DRS SAYING THEY DON'T DO ANY DAMAGE I'M HEAR TO TELL YOU DIFFERANT (WELL THIS APPLIES TO WHEN YOUR FITTING EVER FEW SECS). MY EYESIGHT IS WORSENING WITH EVERY BAD PATCH I HAVE.I'M ALSO AWARE THAT IF I CAN'T SLOW THEM DOWN THAT IT WILL EVENTUALLY LEAD TO A GRAN~MAL AND I DON'T SEEM TO DO THEM IN HALFS .I HAD 5 IN THE SPACE OF 4 HOURS A LITTLE TIME AGO AND NEVER WOKE UP FOR A DAY AND HALF.DAMAGED MY SPINE BADLY BIT MY TOUNGE SO BAD I COULDN'T SPEAK FOR A MONTH. ETC.
I'M JUST SOUNDING HOW SCARED I AM TO YOU GUY BECAUSE I DON'T WANT MY FAMILY TO KNOW AS I THINK THEY JUST ABOUT COPE WITH IT BECAUSE THEY THINK I'M COPING WITH IT..
SORRY TO GO ON BUT THANK:angel: S FOR LISTENING

PINKY1 XX

Hi Pinky,


So very sorry to hear about the bad day you are
having.I hope your back is doing much better.
Take care.

Thank You Xxx

HI Pinky, I am so sorry you are having so many seizures. I DO understand for my son, Tripp has them everyday too. He had a grandmal seizure Sunday evening and has one about once a month. He also had complex pratials( I guess that is what they are called) His head will turn left and IF he is standing he will go around in a complete circle. Today he had 2 drop attacks. He recovers quickly, goes about what he was doing before the "fit"and for that I am thankful!!! BUT I want them to STOP!!
He has been on many add ons to Tegretol xr....he has been on ZOnegran, Topomax, Depokate, Pheno and Lamictal as add ons to Tegretol xr. RIGHT NOW he is taking Tegretol xr 400mg three times daily....PLUS 1500mg of Keppra in the morning and 1250 mg of Keppra in the evening....NO HELP!!!
Neuo does not seemed to be concerned about these partials because they are mild but I want him seizure free. He is mentally delayed and limited speech so he is not able to tell me when he feels one coming on.

Tell me what happens when you have a seizure.....how do you feel after?
I hope you can get control of them.

HI, ITS VERY FRUSTRATING ON A BAD DAY AND UNFORTUNATLY TODAY SEEMS TO BE ANOTHER ONE.
I CAN NORMALLY PICK UP THE CONVERSATION WHERE IT LEFT OFF IF SOMEONE PROMPTS ME AS TO WHAT WE WERE TALKING ABOUT.BUT ON A BAD DAY IT DOESN'T MATTER HOW MUCH PROMPTING IS DONE...I CAN'T RECALL WHAT I WAS DOING OR WHAT I WAS LAST TALKING ABOUT....OR EVEN WHO I WAS LAST TALKING TO. I TEND TO FINISH PEOPLES SENTENCES FOR THEM (I DO THAT ALL THE TIME) AND ITS NOT BECAUSE IM BEING RUDE,ITS BECAUSE I HAVE A VERY SHORT TIME TO ABSORB WHATS BEING SAID,SO I KINDA NEED TO RUSH THE CONVERSATION. (DOES THAT MAKE SENSE?). IM JUST PUTTING IN A NEW THREAD WHICH IS A TEST THAT YOU CAN DO WHICH IS THE CLOSEST THING I CAN TO LET YOU KNOW HOW IT FEELS TO HAVE A PETI~MAL FIT (ABSENSE SEZIOUR) .CHECK OUT MY THREADS XX

PINKY1:wave:

What is your neuro doing to adjust your medication if this is pretty much standard for you? I't totally unacceptable for a doctor to allow so many seizures without trying more or different meds.....you don't need to go through so many/day, without at least trying something different....just an idea.

What is your neuro doing to adjust your medication if this is pretty much standard for you? I't totally unacceptable for a doctor to allow so many seizures without trying more or different meds.....you don't need to go through so many/day, without at least trying something different....just an idea.
AS FAR AS IM AWARE EVERYTHING AVAILABLE HAS BEEN TRIED.APART FROM ALL THE MEDS LISTED I HAVE HAD A VNS .WHICH IS STILL IN PLACE BUT NOW TURNED OFF. I HAVE TRIED AQUAPUNCTURE I AM CURENTLY ON DEXADRINE WHICH FOR THE LAST 3 YEARS HAS GIVEN ME QUITE A BIT OF RELIEF BUT MY BAD DAYS ARE STARTING TO TAKE OVER FROM MY GOOD DAYS AGAIN. TO BE TOTALLY HONEST I HAVE YET TO FIND A DECENT NEUROLIGIST. THEY ALL JUST KEEP SAYING THERE IS NOTHING MORE THAN CAN DO. IM NOT A CANDIDATE FOR SURGERY,SO AM PRETTY MUCH LEFT TO MY OWN DEVICES.. AND IM CONSTANTLY ON THE LOOK OUT FOR HELP. AT THE MOMENT I AM HAVING ABOUT 2 GOOD DAYS OUT OF 2 WEEKS WHICH AS YOU KNOW IS TOTALLY DRAINING. IM VERY TEARFULL AND A LITTLE BIT PANICKY AS I KNOW WHAT WILL HAPPEN IF THEY DON'T STOP

THANKS FOR YOUR CONCERN

PINKY1

Yeah, I'd be tearful too with all of those. Is there any major medical center around that can do a video EEG, to find out more about the seizures, and get them counted- imagine it's hard to keep track of all of them when they come so often, and see if a university or epilepsy center has a specific program for seizures? You need some relief and your brain needs some rest !!

Yeah, I'd be tearful too with all of those. Is there any major medical center around that can do a video EEG, to find out more about the seizures, and get them counted- imagine it's hard to keep track of all of them when they come so often, and see if a university or epilepsy center has a specific program for seizures? You need some relief and your brain needs some rest !!
MANY THANKS NEUROWRECK,YOUR CONCERN IS MUCH APPRECIATED. TODAY IS A SLIGHTLY BETTER DAY. I HAVN'T GONE WITHOUT A PETI~MAL FIT IN 30 YEARS. I LIVE IN THE UK AND FEEL AS IF THE NEUROS HERE HAVE GIVEN UP ON ME. I'M ON THE DEXADRINE AND IT REALLY DOES HELP AS MUCH AS ANY DRUG EVER HAS. I SEE MY NEURO REGULAR BUT ALL HE SAYS IS SEE YOU IN 6 MONTHS. IVE JUST STARTED LOOKING IN TO THE TAURINE THING. I DON'T KNOW IF YOU HAVE ANY VIEWS ON IT ,BUT IM KINDA RUNNING OUT OF IDEAS AND AM PANIC STRICKEN AT THE THOUGHT OF BECOMING INTOLERANT TO THE DEXADRINE.WHICH AT SOME POINT I WILL. ITS THE NATURE OF THE DRUG. I AM A MUM OF 3 AND AM SCARED OF WHAT MY FUTURE HOLDS ?? I DONT SEEM TO HAVE ANY OPTIONS LEFT

THANKS SO MUCH FOR LISTENING THOUGH. YOUR A TREASURE X