Can I pick your "brains" folks?!

[Elaine H]

Hi Guys

After 10 weeks of feeling very low and miserable, I've got onto my Professor in London, and he has suggested introducing a new drug to accompany the Keppra, and I just wondered if anyone has taken it, and what it was like if they did, has it helped, hindered, or whatever? It would be great to hear back from you, I'll be on Keppra 1000mg am and 1000mg pm, and he has suggested that along with the Keppra, I take Oxcarbazepine (Trileptal), starting off with 300mg am and 300mg pm for the first week, then 300mg am and 600mg pm the second week, finally 600mg am, and 600mg pm all being well the week after that. It's not a drug that I've come across, or read a lot about, so I thought I'd ask you guys.

The Keppra, as some of you will know, has made me a miserable, moody, paranoid human being, and I don't like being alone at the moment, I know it's a combination of stuff going on in my life at the moment, but I'm not exactly the life and soul of the party at the moment!! I also know that some of you guys on Keppra, have experienced the same sort of misery? It wouldn't be so bad if it worked against the epilepsy, but it still goes on, nowhere near as bad or as frequent as before the surgery, but nevertheless, it is till happening!!

Hope to hear back from you wonderful folks soon?!

Lotsalove

Elaine xx

 

[Cint]

Hi Elaine,

I'm sorry to hear you're having such a miserable time. I was on Trileptal, 300mgs., 3x's a day, along with Keppra- 3000 mgs. I think it did help somewhat in hindering the seizures, but I had to be taken off the med because it interfered with some of my other meds. It can cause one's sodium level to drop, which is what it did to me, so my neuro and endocrinologist decided it was better for me not to take the medication.

Since we know Keppra can cause one to feel depressed, could your dr. change that medication for you? onder:

I hope you feel better soon.

Cindy

 

[haird18]

Trileptal washard!

Hi Elaine,

While I was on trileptal I had all kinds of side effects that screwed me badly I am sorry you are still dealing with so many issues right after surgery. It seems to be hitting you like a ton of bricks . I am so sorry Elaine.
David

 

[ashmstng]

Hello Elaine~
I am so sorry the side effects you are getting from Keppra. I am on Keppra now and the only time I got depressed was after my surgery. But I have been on it for a long time. I hope your doctor can find something else than can help you feel comfortable and like yourself again. And of course not depressed. I wish you the best. I hope you feel better Elaine. Take care.

 

[Elaine H]

Hi You Darling People

Well, it was great to hear from you all, I know now that some others have tried Trileptal, and good to hear how you did or didn't get on with it.

It seems that these tablets just play around with our heads full stop! But I must say in 22 years with this godawful condition, Keppra has definately had the worst side effects!! I can of course try the Trileptal as Polytherapy as opposed to Monotherapy, I read that it can improve things, I can only try eh?

I'm more worried about my impending MRI Scan!!!! I hate the flipping things! I guess if you have a bit of claustrophobia, then there are other things we'd rather spend half an hour doing eh?

Anyway, I'm still smiling, finished my two university courses on epilepsy, and working hard on the book, I will get it finished, I'm still job hunting, determined to crack that too. Keep in touch all you wonderful folks, I so appreciate your support and feedback! Loadsalove to you all!!


Cheers

Elaine xx

 

[Elaine H]

Hi David

Thanks darling, good to hear from you, we have to keep smiling eh? Just getting feedback from you wonderful people is great for me!!

Keep in touch eh?!

Lotsalove

Elaine xx

 

[RobinN]

Sure does seem to me that they have you on an awful lot of drugs.

but then... I am the one that would rather cut out caffeine, alcohol, make nutritional changes and play with vitamins and minerals, than be on a drug.

 

[Elaine H]

Hi Robin

No,I'm only on the one drug at the moment Keppra 1500mg am and 1500mg pm, as I said the other day, I may aswell shove 'em up my nose, as they really do not work! I just wondered, as someone who doesn't like taking tablets, what everyone else's experiences of this drug were, if it works, I will happily take it.

Hope all ok with you, and thanks for your reply!

Best Wishes

Elaine x

 

[RobinN]

Rebecca tried Trileptal as her fourth and final med. She began to have fever type side effects. Since she has such a terrible time with tegretol, they are in the same family. I didn't want to see a repeat. As I have learned, I am not sure why a doctor would even put her on something that she had reacted to in the past. This is why we have taken a "leave" from medication.

Yet, we began all medication at 100 mg and worked up. I am curious what the max dose is of Keppra for your body mass. 3000 mg seems like an awful lot... but then I am not a chemist. Only someone very nervous of chemical reactions.

 

[Nancy]

Hi Elaine ..... Thunder storm banging here. I wonder if I can even finish answering.
I've been on Trileptal for YEARS. Right now I take two 300 mg tablets twice a day for a total of 600 mg per day.
Also the 300 mg total of Topamax each day.

I'm wallowing in miserable depression .......oooohhhhhhhhhhh poor me ....... but I truly don't think it's the meds fault. Right now how I'm living just sucks. I'm working hard to get it changed.

I have my next MRI on Oct. 2. Thank goodness, *that* doesn't bother me. Could your fireman go along with you for that and hold your foot during yours? Wouldn't that help?

 

[Georgiagirl88]

Hey Girl!

I wish I had an answer for you, but I just wanted to say Hi. Hope you really start to feel better soon! I go back to my neuro soon and am anxious to see what he says about my meds. Take care and know I'm thinking of you!!
Take care Elaine!

Michelle

 

[ashmstng]

Hello Elaine~
I really hope everything gets better for you. As for me I am taking Carbatrol 1,200mg a day, Topamax 150mg & Keppra 3,000mg a day. But I havent noticed anything like you have. The only time I really got depressed was after my surgery. I hope you get everything taking care of and dont feel like you do. Take care of yourself.

 

[Elaine H]

Hi Nancy

Oh my fireman will be with me that's a sure fact, where I have to go for the scan is miles away anyway, so the poor guy has to take the day off to take me, God I so wish I could drive!! He came in with me once before and stood an held my hand, but I just hate being in that tunnel, I have always had a big fear of choking, and the thought of being stuck in there and start coughing!!! Yuk!!! Even worse, having a bad aura like I had the other day, God that was bad enough sitting upright, I can't imagine it lying down in an enclosed space! I'm glad that some of the other folks on here have tried, or are currently taking Trileptal, I thought I'd tried them all, but not this one, I hope it's not an enormous great tablet, again, I'm terrified of getting one stuck in my throat, what a big girly I am eh?!

Thanks for getting back to me, and keep in touch eh?

Love

Elaine x

 

[josieb]

Hi Elaine:

I was on Trileptal for a period of about 3 months, about a year after having my surgery. I had bad effects from it, which included dropping the sodium level in my body, resulting in causing my only grand mal seizure. I had to be hospitalized for a few days while the physicians ran numerous tests and slowly put the sodium back into my body. Everyone has different reactions to the medications, and I've read how others have had no problems with the Trileptal. I hope you find something that helps. Wishing you well, my friend!
Sincerely,
Josie

 

[Nancy]

Elaine ~ Your fireman held your *hand* during a MRI? I can't imagine that during the MRIs I have done at "my" hospital. They have so MANY different machines and I think I've been in every one - lol.
Of course our local hospital has a brand NEW machine and it's smaller and .......
Oh what do I know ......

I do know that at 107 lb I had no trouble with Trileptal and after gaining all this weight I didn't have trouble. I hope and pray you don't either.

 

[Elaine H]

Hey Josie

Great to hear from you my friend! How brilliant to know that you guys are out there, and we all look out for each other!

Someone else mentioned the drop in their Sodium levels, I will have to ask the specialist about that, but thanks for mentioning it.

I am trying to have a positive day today, I have just updated my CV and cut it down from 6 pages ("War & Peace2 comes to mind) to 3 pages, and I am about to e.mail it back to the recruitment agency to see what they think, like I said to her, if I hadn't experienced so much ignorance and prejudice in the workplace from employers, there would be half the number of jobs on my CV! My dear dad is on his way here to stay with me while Mark's away, so I am so gonna make the most of our time, after losing my darling mum last December, it makes you realise eh, that we aren't all here forever! I just wish my brother thought the same way.


Hope you are ok, and keep in touch mate?!

Lotsalove

Elaine x

 

[Elaine H]

Hi There

I just lost everything on Keppra, and I mean EVERYTHING! Sex drive, appetite, ability to concentrate on reading a book, the lot, having said that, I have lost over a stone in weight! All I need to do is tone up a bit, and I should look pretty good in a bikini! Hopefully I won't have any problems with Tileptal, my Professor wants me to take it with the Keppra, I am not a tablet person, and am bad enough with monotherapy, let alone polytherapy, I wouldn't make a very good junkie I know that!

Best Regards

Elaine x

 

[Belinda5000]

Hi Elaine,
Topamax has done everything to me that Keppra has done to you.

I'm allergic to Keppra and Trileptal.

Belinda:e:op:

 

[Elaine H]

Hi Belinda

It doesn't sound too good this Trileptal drug, I haven't really heard anything positive about it yet, and in 22 years and countless drugs, none of them have ever worked anyway, so I'm beginning to wonder!

Thanks for getting back to me, and I hope all is well with you?

Many Thanks

Elaine x