New to site - Just started - Epilim 200mg

[StaceS]

Hi so l'm new here and wondering about Epilim.
Had some strange symptoms for a coyple years, feeling a bit like a too hard basket, as all tests from neuro were ok. He wanted me to try Epilim about 12 months ago, but as l was breastfeeding l couldnt. Was told "possible simple partial seizures "but he thought probably not, but said l cant rule it out" as my eeg etc was fine.
I have just followed up again with my gp as l've had new symptoms (as l found neuro not overly helpful), and now l' e been started on 200mg Epilim daily. Cant help feeling like a gunea pig, as l'm not sure what's going on, if epilepsy or not. Neither GP or neuro really take time to discuss sptoms etc - l have no one to bounce off and am finding it difficult to find relevant info.
So my Gp has started me (l'm on day 2) 200mg for two weeks to see if it helps.
He tells me l have nothing to loose, and if my symptoms improve he will keep me on it for 6 months then get me to stop to see what happens.... Feeling a bit unsure and worried about if this could be epilepsy or not. If it is would this help and would l notice an improvement in a couple of weeks, what side effects have people had.... Or any good links l could have a look at, any info input would be appreciated - tha k you kindly

 

[Nakamova]

Hi StaceS, welcome to CWE!

Simple partial seizures take all sorts of forms, usually as some kind of odd sensation -- anything from a feeling of dread or deja vu, to hearing phantom sounds or having distorted vision, too twitches or muscle spasms. They often won't show up on EEG, since they can be too brief or originate too deep in the brain to register. You can read more about them here: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures

If you have the episodes fairly frequently, then it may be easy to tell if the Epilim is helping to control them. Do you keep any kind of journal where you track your symptoms? That can be really helpful for seeing how the medication is working, and also for getting a sense of whether you are having any side effects. A journal can also help to potentially identify "triggers" that may be contributing to your symptoms -- things like fatigue, or a food sensitivity or hormonal fluctuations (estrogen is a trigger for some).

Epilim (also called sodium valproate or depakote) has been around for awhile, and is one of several medications used to treat simple partial seizures. You shouldn't take it if you are thinking of getting pregnant again. All of the brain medications can potentially have side effects, but each person reacts differently. You might have zero side effects. Or you might have a some side effects at the beginning that go away as your brain adjusts. Or you might have side effects that persist. keep track of how you feel and if you aren't happy with the medication or aren't sure about it, let your neuro know right away. It's not great that your doctors aren't being very helpful -- don't be afraid to push them to explain things better, and let you know what you might expect.

Below are some links from CWE about Epilim/Depakote/Valproate:
http://www.coping-with-epilepsy.com/forums/f20/any-epilim-success-stories-out-there-21158/
http://www.coping-with-epilepsy.com/forums/f20/hello-just-joined-little-about-me-15943/
http://www.coping-with-epilepsy.com/forums/f23/epilim-starting-family-3515/
http://www.coping-with-epilepsy.com/forums/f23/depakote-your-thoughts-9582/
http://www.coping-with-epilepsy.com/forums/f23/side-effects-valproic-acid-depakote-2235/

Please feel free to ask more questions here -- epilepsy is a mysterious disorder. Iit can really help to get as much information as possible and to connect with a community like CWE that offers a lot of anecdotal advice and support.

Best,
Nakamova

 

[StaceS]

Thank you
Yes definately can look at hormonal times as an increase....
I will start to keep a diary again l have not done so for about 12 months unless something biggish has happened. Thank you for links l will look into them!

Just managed a lovely conversation with a lady from Epilepsy Australia and she was really helpful, and has made me feel a lot better about things - and giving the Epilim a go.

I will have a look at your links, and find out as much as l can - as l know nothing about Epilepsy as all.... They have sent me some info too! It does seem very possible now, so l'm hoping for an improvement in symptoms. And have been advised to follow up/push for another neuro appointment regardless. At least this time l might be better able to explain things now l'm getting a better understanding. I have really struggled trying to explain or put a sequence to symptoms, as everything seems all over the place... Thanks again

 

[Nakamova]

Just managed a lovely conversation with a lady from Epilepsy Australia and she was really helpful, and has made me feel a lot better about things - and giving the Epilim a go.

Excellent! It's amazing how much more help and reassurance we can get from folks other than our doctors.

Seizures that increase during the phases when estrogen spikes during your cycle are called "catamenial epilepsy", and you can read a bit about it here: http://www.epilepsy.com/article/2014/4/what-catamenial-epilepsy and find CWE threads about it here: http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html

 

[StaceS]

Is is nice to have someone listen and understand
I think l will be very busy reading tonight!!