Please help .. New+First seizure medication

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jayde-101

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hello,
im getting a be confused i got signed off from the neurologist back in febuary as my MRI and 3 EEGs came back clear but the last week ive been experiencing somthing at night times about 3 times a night i cant really describe it , its starts as a numbness in my mouth my tongue it compleatly numb and i cant speak i then start to have a decreased level of conciousness and and my boyfriend says i go ridgid... when i come back round theres blood everywhere where i have bitten my tongue ....
i went to the GP and shoe him my poorly tongue and i explained everything and he said i want to start you on seizure medication asap , so i have been put on clonazepam just a night time dose ... im just wondering about peoples experiences with clonazepam .and there seizures anyone have anything like mine ?? please help thanks
 
Hi Jayde, apologies for the short reply but i'm still recovering from a bout of seizures. I would definitely agree with the doctors decision, your symptoms are classic of seizures. I haven't ever been on Clonzepam so I can't say but I would be asking your GP for another referral to your neurologist.

I used to have nocturnal seizures as a kid. I was so reliable, my mum would sit outside my bedroom door for 20mins each night because they occured just as I was drifting off. I did have them during the day too, but I was lucky that it didn't affect my days too badly.

It's great that you have someone sleeping next to you, to keep you safe but also to witness them. Good idea to video it for the Neuro if you don't mind.
 
thanks,, ive just never heard anyone that has the numbness and the ridgidness :( its very scarey cause i start choking as i cant swallow and also becuase my mouth makes more saliva ....
my gp was fuming that my neurologist signed me off and he is writing to him asap :(

i just feel like im on a rollacoaster one min im up in the air being told no you dont have seizures your dont have epilepsy then the next min im back down where i started saying i do :'( its really hard ... i took my first clonazepam last night and im quite drowsy this morning .... i would still love to heard other peoples experiences
 
Hi Jayle - 101

I too am on clonazepam 0.5 mg. I take 1/2 tablet every 4 hours except at 10:00PM then I take 1 whole tablet. I was put on it back 2004.
I am also on dilantin 100 mg. 2 capsules morning and supper time.

With these 2 medic. my seizures are uncontrol more than they have been.

I have been on I don't how many seizure medic. they either caused more seizures or I could not tolerate the side effects.

Quailty of Life is important to me as I know it is for all of us with E.

Clonazepam is a habit forming drug. I was not told this when I was put on it. Having said that, I will always be on seizure medic. it doesn't matter if the medic. is habit forming or not.

I'm hoping I am not scaring you, ALL seizure medic. react differently with each person.
 
well , hi everyone i just thought id give you an update on my seizures and clonazepam ..... i have now been on the clonazepam since the 9th and so far my seizures have gone from about 2 a night to about 4/5 a night (usually early hours) i have a drs appointment tomorrow im getting really down with it now :( as my neurologist dont want to know at all :(
 
Can you get a referral to a different neurologist?
 
Hi Jayde,

I'm guessing tomorrow's neurologist visit may likely involve the switching your meds or, adding another E drug in combination. Considering the increase in frequency of seizures, I'd be somewhat surprised if the new plan of action didn't involve transitioning to a whole new drug.

We certainly don't all have the same response to the same meds. I've tried many drugs that didn't control my seizures, but did help other people with the same condition. Finally, I found a drug that worked.

If you're not getting the care you deserve or, are not comfortable with your neurologist, do not hesitate to look for another. As well as getting a good diagnosis, it is important that you feel comfortable with your doctor. Yes, it could be a bit of a hassle, but worth it.

Finding the best treatment for you may test your patience at times, but hang in there, eventually it will smooth out.
 
I am sorry to hear of your seizures increasing.

I had hoped that it would only take one medic. to control my seizure, but I've always had to take 2 or 3. Having said that, this might not be the case for you.

It might be time to change neur.

Keep us posted.
 
Sometimes a med that works for one person may not work for another.. it can take some trial and error to find the right one. But don't worry, you will, and things will get better.

I hope you can get a referral to a new neuro as well..

Chris
 
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