Simple Partial Seizures

[StaceS]

Hey
So l'm new here and trialling 200mg Epilim for SPS with retained awareness.
The more l learn and read the more l think this is a posibillity. Not had the best of luck with doctors so far - but my current GP is assisting me with neuro notes.
I will be requesting to see a neuro who speclises in epilepsy in the next week or so.
My question is that the epilim (after side effects seemingly dying down) does not seem to be making a real difference. I'm 3 weeks in this Sunday just gone. Does anyone have any idea if this would be enough dose/time to have an impact/improve symptoms - l'm still not sure 100% whats going on - and the neuro had noted "possible SPS" - which my GP agreed on.... So it's not difinitive, a bit of trial wait & see method - am l being impatient or does it need more time. Any input appreciated.
Thank you lovely people

 

[masterjen]

I cannot answer for sure if 200 mg would be enough to notice anything; I just know that my "trial dose" to see if it would help was 500 mg: 250 mg AM and 250 mg PM (this was after 5 days of taking 250 mg at night only as a means of titrating onto the medication). Even 500 mg is considered a low dose, but I am also on other seizure medications. I had no side effects on 500 mg, but everyone is different and some people experience side effects at low doses and some not until very high doses.

 

[N Sperlo]

Everyone reacts different to different medications. Some here are controlled by one while others are not controlled while trying many different medications. It sounds like the medicine isn't having a noticeable difference, so you may need a higher dosage or the medicine may not be doing the job for you.

 

[valeriedl]

Everyone reacts different to different medications. Some here are controlled by one while others are not controlled while trying many different medications. It sounds like the medicine isn't having a noticeable difference, so you may need a higher dosage or the medicine may not be doing the job for you.

This is right. Just because a certain dosage of a certain med works for them doesn't mean it's going to work for you.

I tried several different meds and dosages before I found some that 'helped' with my seizures. I also have a VNS. I'm till having seizures though.

 

[StaceS]

Hi everyone, Thank you for your responses! I have been lucky as the side effects were short lived and just a slight nausea and reduced appetite (unfortunately that last one did not hang around.... - I got a bad taste in my mouth for 2 days - then no symptoms since. I've been told that the 200mg is a really low dose - but I'm kind of a bit uncomfortable with being a guinea pig with my GP.
Not wanting him to just up doses when it's not been established that this is actually epilepsy. I can relate to a lot of the experiences on here tho (starting to learn more and more). I have been having a lot of tingling, feelings of numbness (hot/cold), chest discomfort (had my heart checked a couple of times now ... and all good! Apart from ectopic atrial rhythm and a sinus node (& one ecg detected a delta wave), apparently nothing to worry about with all of this tho.
I also get a lot of olfactory hallucinations (a horrible smoke smell - that takes my breath away). The hallucinations along with feeling very tired are probably the worst things for me, they can become quite strong and make me feel really unwell. I also have muscle fascilations and jerks. This pretty much (or predominantly) affects the left side of my body - but sometimes spreads to the right side - when I get very strong symptoms.
I am hoping to see if I can get referred to an epilepsy specialist - as I would really like to try and find out what is going on.
valeriedl that is no good that you are still having seizures
masterjen did your trial dose of 500mg per day make any noticeable difference to your seizure activity - or did you notice any change in pattern etc?
I have been trying to ignore all of this for about the last 14 months after an unpleasant (& non communicative visit to a neuro). So now that I'm trying to get it sorted again I'm not sure if I'm paying to much attention to my symptoms....
Cheers and all the best
Stace

 

[masterjen]

I also get a lot of olfactory hallucinations (a horrible smoke smell - that takes my breath away). The hallucinations along with feeling very tired are probably the worst things for me, they can become quite strong and make me feel really unwell. I also have muscle fascilations and jerks. This pretty much (or predominantly) affects the left side of my body - but sometimes spreads to the right side - when I get very strong symptoms.
I am hoping to see if I can get referred to an epilepsy specialist - as I would really like to try and find out what is going on.
valeriedl that is no good that you are still having seizures
masterjen did your trial dose of 500mg per day make any noticeable difference to your seizure activity - or did you notice any change in pattern etc?
I have been trying to ignore all of this for about the last 14 months after an unpleasant (& non communicative visit to a neuro). So now that I'm trying to get it sorted again I'm not sure if I'm paying to much attention to my symptoms....
Cheers and all the best
Stace

Some of the symptoms you describe a certainly consistent with simple partial seizures, but only an epilepsy specialist can determine for certain. I hope you get your appointment soon. As for the 500 mg having an effect on seizures: no it did not. It has helped considerably with the migraines I have associated with the seizures however. I am on a couple of different medications as well that hopefully in time will result in better seizure control

 

[StaceS]

Thankyou Masterjen
Best of luck to you in your seizure control. I am learning what a strange beast epilepsy is....
I have managed to get an apt for 12th May with same specialist as 87sf (thank you kindly for details )
Fingers crossed this appointment is better, l'm still feeling apprehensive after my last experience.... But really want to know whats happening and try and get it sorted as it is slowly getting worse. But then nothing compared to most on here, so l am very lucky l think...

 

[valeriedl]

I am learning what a strange beast epilepsy is....

I know when I was first diagnosed it took a while to figure out what epilepsy was and what seizures were. Even after 12 years there are things that I'm still finding out. It's not just something you can walk out of the hospital or drs office and completely understand in just one visit.

Don't be afraid to ask your dr any questions you have. Tell him about things that are going on even if you think they might not be epilepsy related because who knows they might be.

 

[StaceS]

Thanks valeriedl
I will l've been told this doctor is very nice!
It will be good to hopefully find out what is going on. Your right it's a complicated thing, l am still not sure what's going on, and trying to find out more information - even if it is Epilepsy or not. - l dont know... A lot fits but not sure about everything....
So l will do my best to describe what has been going on, hoping that this person will be more patient. I really do have a hard tome trying to describe symptoms. - or even put a pattern to them.... But l will do my best to try to and take it from there

 

[valeriedl]

I don't know if you are keeping a seizure diary StaceS. Write down when the seizures happened, what you did during them and anything else that you feel could be important that he might want to know. This helps the dr understand more about what's going on.

A good bit of times when I'm trying to describe something to my neuro about a seizure or something that happened he will understand what I'm talking about. It's not like you are trying to tell it to a friend and they will just sit there with a confused look on their face.

Write down any questions that you want to ask or tell your dr. I know if I don't I'll always forget.