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qestion re; epilepsy - Page 26 - Carers UK Forum

qestion re; epilepsy

For issues related to specific conditions and disabilities.
439 posts
Thanks for the back up ! Image
I have been in touch with the pharmacy, prescriptions lady at our surgery(who was great) and the Epilepsy Nurse again and left them to fight it out!
Pharmacy is rubbish, E-nurse not happy, so said she will be phoning the GP for me on monday, stating Hubs needs to be on one drug and one drug only, and if it happens that the only one to get continuity with is the more expensive one, then so be it!
I like having her in my corner, I don't feel so 'head and brick wall' Image
We'll see what monday brings...
Hi, glad things went well with the epilepsy nurse sturdygirl. It is true that cheaper versions of AED's sometimes are supplied so as the nurse says be very careful. It will get worse as the cuts dig in, our chemist tried it a long time ago and we had a slanging match but things have been ok since and they have been brilliant when we've been short of drugs.
Lisa has been mixed really and overall no change. We have been contacted by a TV company who would like to film Lisa's progress through DBS @ The Walton Centre Liverpool as production has just started on series 2 of Brain Hospital.
Lisa's last MRI done in March has been interesting according to the Neuro but we know no more as yet.
Good to hear from you paul. Keep us posted
Hi Paul,
Good luck with everything.xx

Epilepsy nurse phoned yesterday and is faxing the GP for me, hopefully a prescription will be ready soon for a drug that is always available, fingers crossed!
Marie, thinking of you & little Jessie today, hope all goes well xx

Finally the E-Nurse has faxed the letter to Hubs GP stating choice of meds, he should have them soon and can then start the increase, was getting a bit twitchy as he is nearly out, and I still had to phone them, the secretary faxed it while I was on the phone to her! Image

Crocus, how are you?
Hi sturdy
Glad the nurse has sorted out your hubs meds.
My hubby and I are going to find out the results of his neuropsychologists report on Friday. I have mixed feelings - on one hand I want the result to show that hubby will not be able to work (coz I know that he cant) so be able to use it as evidence in his appeal, on the other hand I worry that it may be worse than I realise and hubby will be devastated. Either way, I will have to pick up the appeal process again Image
Hi Crocus, no wonder you are feeling stressed.
I hope the results are good, but show your Hubs needs. Keeping fingers crossed for you.
Anyone had swollen joints as a side effect of E meds?
Hubs went back on Trileptal 1 week ago ( E-nurse mailed GP asking for proper brand to be prescribed, so same drug, just no messing about) , since then his knees/feet/ankles have ballooned. I have had a look at the leaflet and it doesn't say anything about swelling of joints, but it does mention pain as a side effect, but he has joint pain all the time so hard to tell! Image
Nothing else has changed.
Hubs joints do swell, but a couple of days with them up and they usually go down, they're so big now he can't get any footwear on!

Paul, good luck with everything, hope Lisa is o.k. xx
Marie, Crocus, how are you all?
Hi sturdy. Not come across that as a side effect of E drugs - its usually due to water retention from high blood pressure, kidney problems etc. Id contact the doctor.
Hi everyone,
thank-you Sturdygirl, big day on Wednesday as Lisa sits 3 hours of Neuropsychology tests in preparation for surgery starting at 8.15am, then at 11.30 we meet the Neurologist to hear their decision with maybe the Neurosurgeon aswell, i'll let you know what happens. We are still being followed around by the film crew from Rare Day who are producing the second series of Brain Hospital, although it will depend on Lisa's admission dates as to whether our case makes it to the final documentary.If it does I hope it really raises awareness and give new hope to those in a similar situation.
439 posts