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Anyone caring for someone with epilepsy? - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
Is anyone caring for someone with epilepsy?
Hi Russ,
I care for my wife who is a stroke victim after a brain bleed. I think they call it 'scar epilepsy'. Originally it was about once every 14 days but now we seem to get away with one per annum. I am luckier than a lot of folks; the drugs are working fairly well, but I have to watch out if she gets an infection as this alters the potassium balance I am told and makes her more likely to fit.
Take care.
Hi Russ.
I care for my son who is 23. He has epilepsy.
Hi amateur and LilyRose. Thanks for replying. It's always good to meet others who care for a friend/relative who has epilepsy and to compare notes, so to speak. My wife has major and minor seizures, also what's termed as myoclonic jerks, which can be debilitating. She used see various neurologists, but they proved to be more unhelpful than any help, so our experiences of them haven't been particularly positive. She's on three different types of anti-convulsants due to her type of epilepsy and unfortunately like most meds, the side-effects can be problematic too.

All good wishes.
Hi Russ,
My son also has different kinds of fits. sometimes he just has abscences but he has also started to have really frightening ones that start with an awful noise . When he had his last one of these i thought we would have to send for an ambulance it was so bad, he could hardly speak after but he was his lovely sunny self after a while. I feel so sorry for him as another time he fell and he was very bruised and couldn't move his arm for a week. The fits are so frightening to look at but he is so brave and never moans about them.
He is taking keppra and Tegretol and the specialist nurse has just put up the dosage of the Keppra as his fits are becoming more frequent.

Take care

This is just to see if any one has experiences of the following medications and reasons of why prescribed.

Tegretol ( previously mentioned by Lily )

I know each individual is different and some of the above prescribed as anti depressents or as anti epileptics.Just wondering if others can share their thoughts.

Hope everyone is well
x x x
Hi Rosemary,
Our AED is a mix of both Lamotrigine and Epilim Chrono. This works fairly well. When my wife has a fit I also have Valium (diazapam) to inject to get her out of the fit. This saves our having to go to the hospital for them to give her the valium.
Hi Rosemary lisa is on Gabapentin for pain she gets epilim for her seizures she was also on amytryptilene for pain but they are going to try a new one just out in the uk it is an epilepsy drug but she wil be geting it for pain its called something like lyrica dont know a lot about it but supppose we could give it a try lisa is not to good today had a seizure so she is shattered maybe have a better day tomorrow
hope everyone else is well
take care
Hi rosemary

My wife takes one of the meds that you listed, Lamotrigine, which I think is used to supplement other anti-convulsants, rather than stand-alone-treatment. She's on a mixture of three, which is Epilim, Epanutin (Phenytoin) and Lamotrigine. Of all the three, Epanutin seems to be the worse because of its toxicity and the side effects produced, such as gum and teeth problems, which she is receiving specialist dental care for. She used to take Tegretol, but these didn't seem to be controlling her seizures very well.

Hi LilyRose
Yes, this can be alarming when someone has a major seizure and cries out. Sometimes my wife has seizures in the night and after 21 years of marriage, I still get woken up with a start! I'm sorry that your son has injured himself and can relate as my wife is a regular at accident and emergency. It depends on where she is when she has the seizure - and if I'm nearby where I can catch her to break her fall. Like your son, she never complains and takes it all in her stride.

I'm pleased that the post has had a good response as you see other postings for medical conditions, but somehow epilepsy seems to be left out of the scheme for some unknown reason. Same was when you see people collecting in the street.....it's never for epilepsy - just an observation Image Hope everyone is well.
Love and light
Hi Russ no you dont hear a lot about epilepsy my daughters epilepsy keeps getting pushed to the one side l think because she has autsim and learning disabilities amongst other things it they think it wont make much difference to her but she is just as afraid in a siezure as anyone else l had to fight to keep epilepsy nurse when she went into adult services and when l ask to get meds changed because they are making her to spaced out they look at me as if to say how can you tell the difference but l just make sure l make myself heard l dont put into charity cans l would rather give money to the actual person who needs it l asked one collector that l saw who was collecting for children with special needs where the money went and she said l dont know so that just put me off right away now l help out people l know we had a charity night last september to raise money for my friends two girls to get them motorised scooters it was a great success we got help from central mobility scotland and once l get my daughter use to working one they will arrange to get it for her lisa also mets medazialm dont think lve spelt that right but it goes up her nose its good if we are out as there is no facilities to use rectal diazapam which she was on before sometimes its good to talk about a specific condition and get other peoples ideas on different meds speak again soon
take care
96 posts