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Anyone caring for someone with epilepsy? - Page 7 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
hi guy,s my wife is allergic to most of the meds mentioned and is at the moment on epilim chrono but this doesnt controll the fits completely only reduces them.
she was given phenytoin and finished up in hospital with the side effects ive never seen such huge lumps on anyone before and she was in aagony for several days after.
her fits can paralyse her legs one arm blind her or take her speech for ten to twelve hours after one thing i can say though after 16 years we now try to live our lives as calmly and stress free as poss this really does help if you can achieve it. she also has a seizure alert dog which gives her twenty minutes warning of imminent seizures and (ginny) is an absolute godsend and all for the princely sum of a biscuit and a cuddle not bad eh ?
michael
Hi, Just to say thanks for the information here. My OH has epilepsy and his old consultant told him that he needs to only bother with Grand Mal seizures as the others are only small and not worth worrying about. He never knew about the other types of seizures until we got together and I started finding out about his 'condition'. We now realise that all the other symptoms - vacancy, leg convulsions, sleep seizures, body tingling (he calls them the ants) and the convulsions where he doesn't lose consiousness are all important. We have started adding them to his diary - which he hates doing - so that his GP can see. We are still waiting for an appointment to see a consultant at the epilepsy clinic where we have moved to.
hi greywolf,
does your other half get any kind of warning prior to seizures my wife does not but has a seizure alert dog who gives her twenty minutes warning of oncomming seizures which is an absolute godsend ,doesnt stop them occuring but at least we know when and can get somewhere appropriate for her.if your interested in finding out more info on these dogs let me know and ill forward it for you to look into.
Michael,

If you dont mind can you send me the information too please or even share it here.

Many thanks
Rosemary
No my OH doesn't get any warnings. We are waiting for the epilepsy clinic to contact us with an appointment so we can have his meds reviewed and get the forms signed by the consultant for a sz alert dog.

Here is there address, phone number and web address:

21 Jessops Riverside,
Brightside Lane,
Sheffield,
S9 2RX
0870 609 3476
fax: 0114 261 7555
www.support-dogs.org.uk

They train rescued dogs to detect a sz before it happens and to alert the sufferer. This gives them a little more independance and helps to relieve some of the worry of the carer.
greywolf beat me to it great to hear your applying for a seizure dog, my wife is on her second dog the first retired a year ago and couldnt manage without the support she (ginny)gives her deffinately worth all the effort put into the training process ,who knows we may even bump into one another at the headquarters .
Well where to start!

After a month putting this drug into OH's system it's now coming right back out again.

The flu symptoms continued, really badly, aching limbs all the time, chills, sweats & a cough.
He couldn't regulate his temperature so he was either sitting with a hot water bottle or high temperature and sweats!

He lost his appetite totally - in the last week he has eaten 2 slices of toast and 2 small bowls of soup, this wouldn't be a problem at 20 stone but at 9 -10 isn't so good!

More worrying effects - he hit depression for the first time, and very badly.
He lived in pajama's and would not leave the house at all! Image

He says his body feels worse than it did while seizing 30 times a day and suffering with pneumonia. Image

The most dangerous thing was his Phenytoin levels continued to rise, the safe range is 40-80 he went upto 109 and then even with a Keppra reduction, it still rose again to 113 Image

We are slowly reducing the drug and watching out for signs of him going toxic.

We had to try this drug as I've previously said - when it works it works very well, some people have seizure control for the first time using Keppra.

Unfortunately any gains we had in seizure control have been really out-weighed by the effects, OH says his quality of life has deteriorated really quickly!

We started to reduce on Monday evening and his depression has started to lift now.
I'm hopeful he will feel back to himself soon.

marie x
Hope all goes well with this Marie.

x x
hi marie,
my wife finished up in hospital with the side effects of phenytoin and is either alergic to or they dont work to most of the anti convulsants. she has been on epilim chrono for the last few years but it doesnt control them well but with that and her seizure alert dog we can cope. the worst drug she was on for depresion side effect was primidone she only took two pills and complained how down she felt. i hope all goes well and you find a suitable med soon.
michael
Michael, we have to stay with Phenytoin, it's his core drug and he's been on it over 20 years.
There's no question of it being removed at all. Image
It's been tried with loads of others over the years!

The problems began when he had pneumonia last year, the infection spiralled out of control as did the seizure activity and Phenytoin levels.

He has not been able to regain any kind of control, basically a poorly controlled Epilepsy became uncontrolled and a real problem!

Thankfully, he has not got back upto 30 seizures a day and is currently hovering between 8 and 12 all during sleep - it's Nocturnal Frontal Lobe E.

The Keppra was a bit of a nightmare but it did take the edge of some of the seizures, they were still there but a bit less severe. Image
The side effects were not worth it though - see above!! Image

Phenytoin's not so bad for OH, although because his blood/drug levels are all over the place he's been having blood tests ever 2 weeks all year long and adjusting the dose! Image

It just shows how a bad infection can fire everything up. Image

I must admit when someone beside him sneezes of coughs I've started to develop a mightily scary glare!
My mam says it's a sherbet lemon stare - a face like I've sucked on a sour sweetie!! LOL

You gotta laugh or you'd cry! Image

marie x
96 posts