Winb143 Posted February 25, 2014 Share Posted February 25, 2014 (edited) Right here I go again. When in hospital for SAH they lowered my phenobarb pills for epilepsy and my seizures got worse and stronger. I saw a specialist and he put them/phenobarb up but I am still on keppra also, so I go to my Doc with list asking can I lower the keppra as they make me sleep. He/Doc say no in fact have I might need more !! I have had epilepsy since 14 and I know how my body reacts but I need to be listened to, not poo pooed. It's my body and I know what makes me feel good and bad. I have not had a seizure in 3 years touch wood since phenobarb was upped. I do not feel like keppra helps me. How can I get off the keppra I know the draw backs of pheno and kappra/Keppra. Know advice isn't available but ranting and giving vent phew !! Regards WinB143 xxxx Edited February 25, 2014 by Winb143 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted February 25, 2014 Share Posted February 25, 2014 To be honest Win you do need the doctors go ahead to come off these drugs. They are not the type to just stop taking. Can you see another doctor in the same practice who may have a different opinion? 1 Quote Link to comment Share on other sites More sharing options...
Winb143 Posted February 25, 2014 Author Share Posted February 25, 2014 Hi Penny, I was thinking of seeing another Doc but my hubby said keep with the one Doc !! Why do I listen to him lol. Think I'll see a Doc who has humour xx Love Win xxxx Quote Link to comment Share on other sites More sharing options...
paul99 Posted February 25, 2014 Share Posted February 25, 2014 hi winn have you thought about contacting the epilepsy specialist at the hospital they normally have an epilepsy specialist nurse chat to them good luck you know your own body Quote Link to comment Share on other sites More sharing options...
Daffodil Posted February 25, 2014 Share Posted February 25, 2014 Win, my doctor has been super supportive and I faithfully see him but perhaps because I tend to put on a brave face sometimes with him he can be quick on occasion to brush past my concerns. After my awful turn in December I saw another doctor just by chance and it was good to get a fresh set of eyes on the issue. It helped. Next time I saw my usual chap he said it was a good thing. I am also reassured that there is now another GP who knows a little of what is going on with me. So I sit with penny on this one. Go see another doctor, maybe ask for a female then if they ask you why you aren't seeing your usual chap you can say you wanted a female point of view. You know your body , listen to your gut. Quote Link to comment Share on other sites More sharing options...
Macca Posted February 25, 2014 Share Posted February 25, 2014 Win, I do feel for you when you put this type of post on - you're usually the one pepping us up with songs and gags and one liners, sometimes you make us feel you haven't got problems and we forget - bless! Remember when you were little and you'd ask yer Dad for some toffees - he'd say no! what did you do -you went and saw yer Mum who'd cave in because she didn't know yer Dad had turned you down! Well your doc's yer Dad, now go and see another doc, AKA yer Mum, and get a second opinion like they're all telling you to!! Goodness gracious me! There's a song in there somewhere! Macca Quote Link to comment Share on other sites More sharing options...
Winb143 Posted February 25, 2014 Author Share Posted February 25, 2014 (edited) Thanks All, I wont take hubby with me next time !! I felt fine and now I feel all down but will have a chat to a woman Doc. Trouble is I always get the giggles in Docs, see I am laughing about it now even. Thanks to you all, a type/chat helps no end. Ta BTG'ers xx Thanks for being here xx Singing still, Win ~ ahh Macca xx Penny xx My Miss Daffs xx Paul xx Edited February 25, 2014 by Winb143 Quote Link to comment Share on other sites More sharing options...
iola Posted February 26, 2014 Share Posted February 26, 2014 (edited) Hi Win, I'm so sorry you are down. One thing I have learned about doctors are some know more than others. Some comfortable with what they learned 20 yrs ago and others keep abreast on the latest research. Do what feels right to you. I Edited February 26, 2014 by iola Quote Link to comment Share on other sites More sharing options...
Winb143 Posted February 26, 2014 Author Share Posted February 26, 2014 Thanks I, To be honest I never took much notice of him before lol. Thanks All for advice, Cannot see a specialist as I forgot an appointment so now I am known as a DNA (did not attend), and as one of my family said they are DNA's (did nothing a** holes ) sorry about language xx Love Win xxxxxxxxxxxxx Quote Link to comment Share on other sites More sharing options...
kpaggett Posted March 3, 2014 Share Posted March 3, 2014 I think you should consult another neurologist. Kep. might be helping or not. It is not one of these drugs you can just stop taking...you need to wean off of it, so it is best to do it under a doctor's supervision. That being said, a doctor works for you. If you want to try and go off of it, that is YOUR decision to make and the doctor only can give his/her advice to you and you don't have to take it. However, you need to inform your doctor that this is what you want to try and find out what contingency things you can agree on...like what you would do if you had another seizure. People go on and off of drugs all the time. It is your right to try it if you are willing to accept the consequences of what your doctor tells you might happen if you try. That being said, why does he not want you to try? Maybe there is a good reason. Listen if there is. Evaluate. ~Kris Quote Link to comment Share on other sites More sharing options...
Winb143 Posted March 5, 2014 Author Share Posted March 5, 2014 Thanks Kris, I did ask Doc if I could lower dose knowing I might have a seizure. As I know I have to take anti epilepsy drug but do not want to take too many. (ah liver and kidneys taking a bashing). The hospital Docs make me wait an age and then say "how have you been" I say ""fine" and then get dismissed. I did say once "I feel like you dismiss me too easily" which got his attention. I will have another go at Doc in a nice way if not I'll trip him up lol Always been under Doc as hospital I found was a waste of time. Thanks again Kris Love Winxxxx Quote Link to comment Share on other sites More sharing options...
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