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qestion re; epilepsy - Page 22 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
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Hubs got his appointment through yesterday to see the Epilepsy Nurse Image
It's not until June, but at least he should have started his new meds by then, so if I have any concerns I can ask.
Hubs was rough yesterday Image
Hope everone's o.k
xx
That's brilliant. S had to wait ages to see the e nurse, but (unlike the neuro) she was interested and willing to listen and "thought aloud" until we had worked things through.

GP still not heard from neuro re meds increase, but has prescribed them anyway. Am hoping increasing more slowly, will cause S less problems.

Perhaps worth contacting neuro's secretary, letter might be in "to do" pile! Might give them a nudge or perhaps they could fax it to GP?

Melly1

Crocus, good luck Friday.
Hi Melly,
I hope the increase for S helps x
If the neuro letter hasn't arrived in todays post I will phone I think.

So, question... what can we expect from the Epilepsy Nurse? I know it will be great to have a port of call to someone in the know, but is this where I get to ask my 1001 questions? Image
x
Hi Sturdygirl,

S's visit from the epilepsy nurse was great. She was in demand and we like you had quite a wait. I suppose there are good and not so good ones, but she WAS interested, did listen, did answer questions and was very knowledgeable. Encounters with the epilepsy nurse at my school have also been similiarly positive. Keeping my fingers crossed your and hubby's experience is the same.

Sturdygirl, S didn't have many seizures over the hols and has been so happy - which makes me reticient to start the increase. However, he was so lively and cheerful in the hairdressers and then had a complex partial, which took it out of him - so back on course to do the increase. Hoping the benefits out weigh the effects of increasing.

Melly1
Hi sturdy, I find the epilepsy nurses here knowledgeable and I have a phone number for them if I need help, although Ive never actually rung it
Hi all,
Hubs has had a really bad few days, lots of seizures and he feels really low again Image
We had a call on Friday from his GP practice, his Doc wants to see him for a chat regarding the change of meds Image

I will still need to get on to Neuro though as I need a copy of the letter for the mortgage insurance Image

Q... OH's DD gets married on the 11th May, this change over of meds is going to make Hubs a bit rough, he's not at the docs until the 24th April, should I hold off starting the new meds until after the wedding, or just go for it? What do you think???
It's like the devil and the deep blue sea, he's not brill at the min, but will he be worse while the change over is in effect?

Crocus, how did you get on on Friday? Hope it went well xx
Q... OH's DD gets married on the 11th May, this change over of meds is going to make Hubs a bit rough, he's not at the docs until the 24th April, should I hold off starting the new meds until after the wedding, or just go for it? What do you think???
Tough call sturdy Image
My experience is that the changeover will make the fits worse while you are changing them.
Why not talk to the GP about this when you see him. Or alternatively, have you got the phone number for the epilepsy nurses?

Hubby got on fine at the neurologist and he is not having his meds changed. Im a bit concerned though as he seems to think that all his problems are due to side effects of his drugs Image I suspect that he is now aware of his deteriorating mental capacity and is trying to blame something else. Im thinking of phoning the epilepsy nurse to talk to her about this.
So,... not much choice in the start/hold off meds saga..
GP phoned at 8pm last night to tell me there is a prescription waiting for Hubs, and can I go get it in the morning! (Oh, yes, no problem, I'll just dig out the broomstick and fly over Image )
He wants him to start the new meds so he will have had a weeks worth before he sees him, then we can chat about the increase of new/reduction of old.
Problem solved lol
The new stuff is called Trileptal (big posh name is Oxcarbazepine)
Looked it up and apparently it can interfere with OH's NSAIDs, will have to ask about that.
Let the games begin...
Sturdy, phone the epilepsy nurses. They are usually more knowledgeable than GPs and are usually very sympathetic and understanding.
Crocus, you're right, I should. The appointment letter hasn't got a direct number, but I can ask to be put through.
2 chemists didn't have the new pills in, so had a nice wander Image , 3rd time lucky!
I asked about the interaction with OH's pain relief, the pharmacist was very nice, trotted off and found out for me that it won't interfere with Hubs particular brand. Image
The increase will be a doddle (compared to the old meds) , it will only take 4 weeks, I just hope the reduction in the old one will be as easy! Image

How is everyone?
xx
439 posts