Help Pleese

[Fedup]

I am new to all this and may need some help along the way, I hate saying my age reminds me of what I said when I was a child any way I am married with no children.I have had epilepsy since I was a child, I have grand mal epilepsy, a lot of the things the doctors told me I could not do or would not be able to do I have done. I have forgotten the name of most of the medication I have been on, I have a job and drive (which I was told would never happen) at the moment I am on Lamictal and epineuton, this was good but three months ago Vimpat was added. At the start I got headaches which have since gone, a loss of appetite (which may not be a bad thing in my case) and being a bit tired but this last 2 weeks I have no energy, all I want to do is sleep this seems to be getting worse, Does anyone have the same problem, its starting to effect my job. Thanks,

[CQ:)]

Hi Fedup,

Welcome to the CWE.

Out of the 3 meds you mentioned I have only been on Lamictal so I am not very familiar with epineuton or Vimpat.
Did the headaches & loss of appetite only start after you started the Vimpat because they could be a side effect from the medication.Feeling tired & having no energy could also be a side effect from the meds.

I'm currently on Tegretol & Keppra & at the moment I don't have many side effects from the 2 meds. But there have been times when I have been on other Anti Epilepsy meds which have caused me to feel tired & have no energy.

Good on you for proving the drs wrong & doing things that they said you couldn't do (eg drive & work).

[Nakamova]

Hi Fedup, welcome to CWE!

If your meds are adversely affecting your quality of life, make an appointment with your neurologist to see about adjusting them. The Vimpat may not be working out -- especially if it is messing with your sleep and making you tired.
See Vimpat and disruption of sleep (REALLY vivid dreams/nightmares) and Has anyone else taken Vimpat? URGH!!

Best,
Nakamova

[Fedup]

Yes the headaches & loss of appetite start when I went on the Vimpat and yes there is little about the headaches as a side effect, thankfully they stooped, the loss of appetite does not bother me as I probably need to loos a few pounds, the nightmares according to the doctor are not a side effect and the fact that I want to sleep all the time especially today its effecting me working

[Nakamova]

Ask the doctor to take Vimpat for a few months and see if his sleep isn't affected. (Okay, I'm kidding -- but wouldn't it be nice if they really understood how the meds make us feel?). He can't force you to take a medicine that is making you feel lousy. If Vimpat "works" by making you unable to function, then it isn't really working, is it?

Can you see a different neurologist?

[Fedup]

Nakamova Thanks for the advice but I am back from the neurologist and to be honest it was a wast of time, I am a long time taking med's and this has just thrown me, why people do not listen is beyond me, but you are still right

[Eli]

My neurologist tried Vimpat on me as a supplement to keppra. I had loss of appetite, when I did eat I had nausea and vomiting, had problems sleeping and experienced depression (depression is not normal for me).

Imho, definitely keep a journal.

[Eli]

Ask the doctor to take Vimpat for a few months and see if his sleep isn't affected. (Okay, I'm kidding -- but wouldn't it be nice if they really understood how the meds make us feel?). He can't force you to take a medicine that is making you feel lousy. If Vimpat "works" by making you unable to function, then it isn't really working, is it?

Can you see a different neurologist?

Love that kidding comment!

[Fedup]

Nakamova, I like your style I might just ask the doctor to take vimpat along with the Lamictal and epineuton ( but whats the chance, unless I give it to him). My neurologist retired at Christmas and his replacement is supposed to be very good but I am thinking along your line of seeing a different one only thing is I would have to travel but once they are good I do not mind

[Fedup]

Eli they tried me on keppra but the side effects were unreal, walking into doors and wall, loss of balance when I would stand up.I like the kidding comment as well, its good

[Eli]

Eli they tried me on keppra but the side effects were unreal, walking into doors and wall, loss of balance when I would stand up.I like the kidding comment as well, its good

I have a horribly low tolerance for meds. Not sure if that's good or bad...
I had probs with the keppra at higher doses. At 1750mg I have tons of partials but at least no sleep walking and no t/c falls in almost 2 years, tg.

I think the biggest help has been getting me into a sitation where I have little stress, I have alot of routine, take my current meds regularly, etc, etc.

It's boring as heck but at least I'm not on a first name basis with EMT's and ER staff like I was

[Fedup]

I am lucky in 2 ways I seem to be able to get along ok with most of the meds and this is the lowest amount I have been on, between the 3 meds its 1500mg so far the vimpat has to be increased by another 100mg and it will still be the lowest

[Nakamova]

Are you still having seizures at the current dosages? If things are under control, then you may not need to keep increasing the Vimpat.

[Fedup]

still having seizures but its not that bad and to be honest the vimpat seem to be working in that way