Hello there, i haven't wrote a lot of posts so I am sorry for the lack of communication. I do like to read how other people are getting on and take comfort from the spirit of a lot of people on this particular forum.
there's loads of helpful information which is very reassuring as well. i know everyone experience epilepsy differently but it's good to know that some have similar experiences.
anyway, sorry to blab on. I just wanted to ask a really daft question. I have seizures once a month, which used to be once a week. I did though go 14 months without having a grand-mal seizure. i have aura like seizures before the TC seizure so i kind of know when it's due. they also continue after the TC seizure but eventually disappear.
Blah de bla. What i wanted to know was, should i be looking to change my medication if i'm having a TC seizure once a month? Compared to some experiences I've heard, I know I am really lucky to only have one a month. However I was just seeing what the general opinion was if they had similar circumstances.
Sorry for talking away there and apologies if I don't know the scientific or correct lingo as I know this may offend.
Thanks folks
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Dochead
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In the end - your choice! Depends on how happy/satisfied you are with having it just once a month. Also seriously consider - how many medications have you been on so far? Remember that the more drugs you have been on for epilepsy: the more resistant you become to them! If all that you are having is one tonic clonic a month, and nothing else for four weeks, then consider how long it takes you to recover from it.
that's a really good point about the medications so i'll maybe just bear with it for now. it is a little annoying and inconvenient but I understand that it pales in comparison to some of the things other people go through.
Thanks for that advice though. I'll be speaking to my epilepsy specialist nurse in a few weeks anyway but i'll keep your comments in mind!
Good advice, but don't forget to also take into account the side effects that different AEDs have. I would recommend being on as few at any one time as you can.
You might have seen me post in other threads about that I recently had my first two TC seizures after 7 years seizure free!!! On the advice of my epilepsy doctor and nurse we slightly upped the dose of my regular medication (Epilim Chrono), but also intoduced a new one, which I had never heard of before, clobazam. It is really great for me, and maybe would be for you since you seem to know when seizures are coming on. You don't take it regularly, but instead just take it when you feel at risk. It is really fast acting (about 20 mins), so if you take it before you have a TC, it might be able to stop it from happening, or even if you take it afterwards, it may calm down the smaller seizures after, helping oyu recover quicker. Maybe worth asking your nurse about medications of this type?
wow just read your story there Amy. That's terrible to hear. I got a bit like that after my 14 month seizure-free spell and thought that i had just about beaten it. I was playing football again and had no problems going out. Now I get really anxious about doing simple things like meeting my friends, going to uni etc.
I'm really interested in this medication prospect actually. I don't want to be telling the nurse what to do or anything but I feel like this is an option.
Thanks very much for sharing that, I'm definitely taking a note of that.
Take care Amy and Monaco and cheers for the advice!
Hi Dochead,
Many thanks for joining us and glad to hear you are only having one seizure a month! Great news - keep it that way.
I am currently on Carbamazepine and Phenytoin which I have been on for years, but have only just gone over 6 months seizure free, even though I have had epilepsy for 41 years now.
Side effects of medication can also make an impact, so if you are happy with the medication you are on, rather stick to it than changing and having an upset to the seizure routine. I have learned from experience that if the medication is working, leave it and don't start playing around with changes of meds, dosages and more.
Make sure you get your check ups and if need be, talk to your Doctor or Epilepsy Nurse about it.
You are lucky to have only one seizure a month. A tonic clonic seizure hits me for 35 minutes at a time when I do have.
That sounds hellish jeez!! thanks for the advice Les, I'll talk it through with my ESN and see what the best way forward is. I am happy with the 1 TC a month as well. I suppose i just want to try and strive for longer spells without a TC considering my previous 14 month spell.
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