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Posted

Hi all hope your all well. Went back to neurologist wed and had my preassessment for angigram also and the neurologist feels that I do have temprol lobe epelipsy and perscribed another anti convulsant tegretol thing is after trying keppra and latimal and feeling horrendos on them I am worried about trying more. I have had some "odd" experiences and he thinks these could be temprol lobe sceizures. Apparently all sceizure activity starts in temprol lobe. I only had one grand mal in my sleep and I suppose I need to weigh up the pros and cons of taking the medication! I know some of you have experience of this as you said in other posts So I was wondering how you decided to take the medication or not. Also has everyone got scaring after the bleed? I have been told I have which irritates the brain and this will never go? Also I asked what chance of finding something on angigram are and he said probs a bit higher than the risk of having angigram which is 1% so he said about 2to 3% chance of finding something like anyursm or avm so its a waiting game till I have it x

Posted

I didnt decide I was just given the Meds to take....if you've been given them you should take them

My BP meds were changed and it was hell then thanged again rotten but third time was lucky I was fine...

Posted

Hi Bev

Think I've sent you information about Epilpsey, If Ive not, just remind me.

"Anticonvulsion Drugs" take a little to to get correct. What works for some, may not for others.

I've been on the ones you've stated, plus a lot more, but now I'm only on "Keppra/Levetiracetam" and it has taken a while to get the correct doseage for me.

Taking them at a set time also helps, as they are a top up drug, as in they are working all the time, slowly realising medication into your system.

Please stick with it,it does help.

It also gets easier.

Don't let the condition run your life!!

Posted

I know what your saying it is kinda taking over my life at moment cos everywhere I go I am afraid I will drop down and fit. Ill just try use meds! I find it hard to trust drs after initial mis diagnosis I think and hope a neurologist knows what he is talking about. Ill take the medication and persevere x

Posted

My niece has tried every medication on the planet (she's gone outside of the US system) and has found very little relief. She was seizing everyday though.

I know another person who has permanent scar tissue in his brain as well after his SAH and had a seizure like you've described. He hasn't had one again and I'm not sure what meds he's on, but I know these anticonvulsants are hard to get right. Tegretol is an old one. It can also be used to help PTSD, depression, and attention deficit at times so this might be an added good side effect for you. Hang in there and just experiment. You'll find the right dose that works for your body. I know the unstable balance side effect can really throw you off, though.

I'm glad you're watching and waiting about the Angio. I think it is right. I'm in no better condition today by having had a second one. What a waste of time thinking it would tell me something. Alas, not knowing sucks, but I've learned that we can't know everything and even if we did...would the treatment be any different? I think not.

~Kris

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