qestion re; epilepsy

[sturdygirl]

My Hubby has been suffering from Absences, he just literally stops and stares into space, usually there is some thumb twiddling going, but thats been it until recently.
He can have a cluster, - I wake him and he 'goes' again almost straight away, or he can just have the odd one. There is often no warning, but if he wakes with a headache, I watch hm like a hawk!
If he is standing when it happens, he just leans and we have to catch him.
When I wake him, he is very confused, he looks all around the room as if he doesn't know where he is, often has a serious headache pinpointed the the left hand side, feels ill, really tired, his vision blurrs, he trembles, his legs shake, he has no memory of previous conversation ( this does come back slowly) and no concept of the time lapsed.

He is under Neuro, and has been given Lamotrigine to take as a trial, but no confirmed diagnosis, just possible epilepsy ( Partial Absence Siezures) and lets see if the meds work.
His next appointment should have been March, but has been put to the end of May
The medication has reduced the frequency, he was having the episodes almost every day, now he can go 2 or 3 days without, a few weeks ago he did 9 straight days and the difference was amazing, but they came back with a vengance!

Recently though, I have noticed that it is harder to rouse him, and when I do he has started patting his hands on his knees and not being properly aware, he jumps as if he has gone again when I touch him or speak to him, his legs seem to be moving more as well.

Has anyone had any experience with this?
Does Epilepsy escalate? (if it is epilepsy)
I am going to phone the docs on Monday, but just wondered if anyone could offer advice in the mean time as it is a tad worrying
Thanks
xx

[Myrtle]

I don't know, sorry
(((((((((((((((((((((((((((((hug))))))))))))))))))))))))))))))))

[charles47]

All sorts of possible answers...but the best thing is to talk to the doc. I would have thought a referral for scans/EEGs would have been in order rather than messing around with meds, though?

[sturdygirl]

Hi Charles,
Hubs has had an MRI, which was clear, an EEG, also clear and a sleep deprivation EEG which showed activity on the left side, the exact spot where he gets the pain. These tests were last August and September.
It wasn't until all test results were in that Hubs was started on the meds.
I'll give the GP a bell on Monday, it's just a worry as they are knocking him for six.
xx

[Melly1]

Hi Sturdygirl,

sounds like the patting of his knees could be part of the seizure. If the seizures are presenting differently, it would be worth trying to get the appointment back to the original planned date. Do you keep a seizure diary? Videoing the seizure to show the consultant can be useful too.

Has OH reached his the full dose now? If so, having seizures as often as he is doing, isn't good enough and this is another reason for not waiting until May for an appointment.

GP maybe able to push for an earlier appointment, but they don't tend to have sufficient knowledge of epilepsy to do much.

Melly1

[sturdygirl]

Hi Melly, thanks for your input.
Hubs has been on the full dose since the 25th Jan - he started low in Dec and built up over 8 weeks.
I keep a diary, have done for over a year, but it's really difficult to video them, as I don't want to leave him 'spaced out' while I record him, and often it's all hands on deck!
Good idea though, I think I will have a word with the kids and try and get one of them to record one while I help Hubs.
I think I might try phoning the secretary at the hospital as well and explain the situation, although she wasn't too helpful last time
Once again, I feel as though Hubs has just been put on the shelf for later inspection
Thanks again
xx

[Melly1]

Hi Sturdygirl,

if OH has been on full dose since end of Jan - then either the dose or the medication isn't right, or he needs an additional med on top of the lamotrogine. Having as many absences as he is experiencing, his epilepsy is can not be considered under control. Maybe worth getting GP to badger the secretary too or even speak to the consultant on OH's behalf.

If OH doesn't mind then definitely worth getting someone to video a seizure, even on your phone would do.

Melly1

[sturdygirl]

Hi all,
Just thought I'd let you know that I have got nowhere!
Neuro fully booked so will have to wait until May, unless a cancellation comes up, then Hubs will be 'considered'.
I have managed to record one of his episodes though, (just on my mobile) and he had one with his SW last week, not ideal I know, but at least someone else outside the family has witnessed it happening.
xx

[Melly1]

Hi, at least you tried and hubby will be considered for a cancellation. I would ring up regularly to check if there is a cancellation - if you can bear it - just to keep him at the forefront of their minds ...

Does OH have an epilepsy nurse? S doesn't but some do and they are helpful and have some clout.

Well done for capturing one on your mobile. Did the SW "write up" the one they witnessed - as that could be presented too at the next appointment.

Melly1

[sturdygirl]

Hi Melly,
Firstly, no, Hubs doesn't have an epilepsy nurse as still no formal dx has been made. It's quite frustrating as any forms we fill in we have to just explain what happens, we can't write in a definite condition.
Secondly, I'm not sure if the SW 'wrote it up', thanks, will ask him.
I was going to ask him to write us a letter, just for our records, then if ATOS decide play silly games again, at least we have something to back us up, but didn't think about the next Neuro appointment!
So much going on at the moment, my head is fuzzy
Thanks Melly, so good to have sound advice to keep me on track
x