Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
Hi Barbara,

We're going next week to look at some so hopefully we shall have a dog within next few weeks. Fully trained E dogs are a great idea - it's just the waiting and diary keeping thats the bug bear, as he doesn't like to keep a diary. If your meds change in the 6 months of the diary you have to wait for 6 months then start another 6 months of diary - which is why we are going to get one from dogs trust and teach it ourselves. The advantage of a seizure alert dog is that it can go any where with you - like a guide dog - where as a dog you have trained yourself can't. Image

Not sure if topomax (new meds) are working, as he has had a 19min sz yesterday and 2 during the night. His longest sz has been 8 min before and this long one yesterday was very different - he went rigid then shook, then thrashed about, then curled and went rigid, tried to suffocate himself, tried to strangle himself, bowed rigid and was unconcious through out. Usually he just goes into feotal position and rigid, occasionally bows rigid and is usually unconcious but they only last for 4 mins at a time but he often has clusters. So now I'm on continual watch incase it happens again. Image

Right now I'm scared as I don't know what's happening. My partner has told me I have to wait until a sz has been going continually for half hour before I phone for an ambulance. Image

I hope everything goes well for your hubby. If the lamotrigine aren't working go back to the neuro and tell them.
Hi, I would not wait for 30 minutes seizing before getting an ambulance!

Try an get your GP to have a word with your partner if you can!
Our GP says, if the seizure activity deviates from the usual pattern, either prolonged seizures or clusters too close together, call the out of hours services for advice.

Tonic clonic or seizures with the type of activity you describe are not ones I'd comfortably leave for that length of time.

Changes in meds can cause differing seizure activity too, having been caught up with this myself, I know how you feel. Image
It's very difficult. Image

Maybe you'd feel comfortable with some rescue meds? some GP's are in favour and some are not, ours isn't - he prefers you to phone for further advice instead although others are quite happy to give you a supply at home as it can often save on a hospital admissions.

Keep strong, Image
marie x
All the advice I've seen says 5 minutes is the longest you should wait before calling out the ambulance service.
Hi charles, usually I would agree with that but it depends on the person really. Image

Living with someone who regularly has prolonged and cluster seizures it's more about if the activity is more than usual or unusually aggressive in nature the advice is get help!

Some people do have long-ish seizures that are the norm for them!
marie x
Phoned GP and told her and she said it was probably due to new meds and to keep on them til monday.

My OH said I was not to call ambulance unless sz had gone on for 30 mins, so what do I do Image

OH has a supply of clobazam at home - but it's not possible to get tablets down him when he's havin a bad sz, so have to wait till he comes round and then get him to take one. Will have to ask GP bout injectable form and to have word with OH bout time length.

Thankfully today has been just normal (usual clusters)

Thanks for the advice. ((((((((((HUGS))))))))))))))
I have been told to ring 999 if seizures/unconsciousness go on for longer than 5 mins or are different from usual.
I follow this instruction- when OH was having regular full tonic clonic seizures I knew some of the local ambulance crew quite well! But they were always quick to reassure me I had done the right thing in ringing. I found that them giving OH oxygen made a real difference to his recovery. The crews will administer oxygen at home and not take you into A&E if you recover. Our GP will not prescribe oxygen to keep at home but I know others who do.
However GP has prescribed rectal diazapam for me to keep at home to use if seizures go on for too long.

Greywolf - if I was in your position I would certainly call an ambulance because those seizures sound really scary. It is all very well for OH to give instructions not to ring but he does not have to witness someone he loves struggling. If he gets upset you could always be a little confused about the exact timing - he will not know how long he was unconscious!!

Thanks to all for the advice about medication. I have been very concerned about OH's reaction to the increasing dose of Lamotrigine and other meds given to me when we went to A&E last Sunday - never be ill on a Bank Holiday; the A team are not working!!
I felt I needed some expert opinion so rang the consultant neurologist's secretary - several times!! - asking for an early appointment. Late this afternoon the consultant himself rang me at home, spent time discussing OH condition and has told me to stop medication given by A&E immediately.
Just talking to somebody who seems to know what they are talking about is reassurring, so we are going to persevere with Lamotrigine until we hit optimum dose, then see consultant and make some decisions.
Everything about OH's epilepsy is made more difficult by his post stroke aphasia - he cannot explain how he feels so has to rely on my best guesses!
Greywolf - thanks for the 'ants' description of seizure symptoms - OH totally identified with this.
Hi charles, usually I would agree with that but it depends on the person really. Image

Living with someone who regularly has prolonged and cluster seizures it's more about if the activity is more than usual or unusually aggressive in nature the advice is get help!

Some people do have long-ish seizures that are the norm for them!
marie x
Thanks for that, Marie. Image
My OH has a serious phobia of hospitals since the attack that caused his E. He lost 8 days during that time and signed himself out twice, and was brought back each time. He wont even go to the hospital with me he is that afraid, and I only go for check ups for rheumatoid arthritus. It took ages to get him to calm down to see the neuro. He doesn't trust anyone there either. Image

I think I'm going to have to talk to his GP and neuro and see if there is anthing that they can do. Even if it means that the GP has to come out each time.

I really don't know what else I can do, even the thought of hospitals sets him off. Image

Will post and let you know when I've managed to talk to GP. Image

Thanks for the advice.
Hi and (((Hugs))) it's a difficult call isn't it - allowing someone their right to choose and making the call for help! Image

Maybe an answer would be the buccal form of diazapam as you can place this in the cheek - if you mind to be careful of your fingers though! Image

Some GP's are ok with this and others like ours prefer you to seek medical advice. Image

You know how it is, new meds or even dose changes can always be an issue. Image

Here's hoping for calmer, more settled times. Image

marie x
Hi Marie,

Will definatly ask if we can have the buccal form of diazapam. Thanks. Image

Last night he slept for a full night so I'm hoping that things have started to settle, as it's his first full nights sleep in weeks. Image

Thanks for the listening ear and the advice. ((((HUGS))))
96 posts