epilepsy

Anna,

As someone with epilepsy myself I understand your concern. And while I would never presume to second guess a consultant's treatment & prescribed medication, if I was in the same situation I would list all you have done here along with anything else that concerns you and/or your daughter and politely (but seriously), point out all your worries to him. Then, ask him for his definitive 'professional advise'.

One thing that's not clear from your post though is how often you daughter attends her consultant's clinics or when she last saw him. Is he in fact aware of the increase in seizures, weight and sleep time yet?

Some Epilepsy Medication leads you down the track of weight gain.Some medication has the opposite effect. I went through that in my late teens. (now in early 30's). I have had Epilepsy since Puberty.

Hi I also suffer from  epilepsy and I had the same thing happened to me I lost all my child hood memory but my family pointed out to the GP they put me on to high a dose and they did a blood test and found I was 4 times over the amount I should have been  taken as bad as that was it also was rong medication so they put me on sodium valproate also known as convelx look it up it is realy good for epilepsy as I have been fit free for over 5 years now

Sorry to hear your daughter is not having a good time of it at moment to say the

least.  I have had epilepsy since puberty (around 14 yrs. of age) now 60 plus.

I was put on phenobarbitone in those days, I was fine but then they added valium

there was a scare about it so I came off them.  They have put me on keppra and I

found that it causes me to  have an itchy ear.  I wish I was just on my tablets I've

been on most of my life.  Ask about side effects of a drug always. 

They just give us pills and do not suffer any consequences ie they gave me

epanutin and my lovely teeth have gaps !! Good luck

 

Sorry I can not help with any knowledge of medication, but when I wish to know more I contact my local pharmacist as I feel they may have more insight to medication, you do not need an appointment and they are usually very willing to help.

My wife has been on meds from the age of three she is now 50. She takes Epilim 2000mg, Tegretol 800mg, clonazepam 3mg and was on lamotogine, however we were told to reduce and remove the lamotrigine before starting the Keppra...

as it happens the keppra did nothing for her so we have now stop this and are trying zonisamide but again initial results are bad (3 fits in last 3 days)

My wife has very bad memory forgets how to work phone or remote control??, lack of confidence and spends lots of time either dosing or alseep - this is due to the drugs and there is not a lot that can be done to avoid this most of the AED reduce brain activity in one way or another hence felling sleepy.

It is a fine balance getting the drugs just right but over time the body changes and the drugs need to be changed. my wife had 6 years of very little activity, however sometime last year something changed and we have been trying to fix it ever since..

It will get better new bettter drugs are coming through all the time

Get her up the hospital and see the Doc who deals  with her epilepsy in the mean

time speak to GP.

I am only speaking from my epilepsy experiences.

Get daughter seen to though and good luck to you all.

xx xx

I was on epilim I think it was 200mg I can't quite remember, but like your daughter I used to get bullied at school but they never caused it, as i got older I grew out of it I've not had a fit since the early 2000s, in time your daughter might be lucky, when ever I had a fit i would always want to sleep, my uncle has it badly and in the past has been in hospital cause of it, his meds have been upped to what I don't no as I hardly see him but I do have the odd absence spells I many have them at work now due to been so close fluorescent lighting but I have to bring myself round out of them n after I carry on with what I'm doing, I tell every1 I no so they no I'm not ignoring them, she will over come this as she gets older they will eventually fade away and go but will remain in they brain/system waiting to start up again like mine

tablets I am of the bedrinoll and satalitpram tablets now and am just on sodium valporate 2400mg now.

And I take no fits now

hi ....i have juvinile myiclonic epilepsy and im 18 years old. i was diagnosed when i had a grand mal seizure about 3 years ago! im on kepper 750mg x2 a day for now. if you have any questions (esspecially bout how your daughter feels) im happy to answer. i would love it if my parent would reach out to others and try understand and know what im going through physically and emotionaly. good luck with it all!

They don't seem to see the person we are just patients.

I know it's annoying, I was 14 when I had my first seizure, so scary and to this day I still shout out "oh help me Mum"  ha ha.late 60's now !!

Be careful of what pills they  put daughter on and ask them if they would give them to a loved one. Keppra make you put on weight,sleep and lose hair.

Epanutin make teeth fall out as gums shrink, the only one I have took

all my life has been phenobarb,  so beware and Good luck to Daughter,

Tell her some famous people have Epilepsy like Prince (singer).

Good luck xxxx

 

Dear Guest

Just to give you a little support  and encouragment my wife was found to have Epilepsy at 18 years old. been taking 100mg of Phenytoin twice a day. all these years she is now 80 years old. She was also taking large dose of Primidone twice daily for 50 years. was taken of this after problems 5 years ago

I honestly cannot understand all the medication your Daughter is on, need to talk to her consultant about it.

my wife had 4 children one died very young. her Epilepsy as been under control since 1987 when she had a grand mall fit. not had one since.

Sorry to say she now suffers from Alzhiemers.