Hey everyone. I have been seizure free from big seizures for 2 months now! Thank goodness! But i have picked up on somthing new. This may sound completly odd, but smells have been bothering me like no other! Like today I was eating today and i thought it was my food that smelled bad, but suposbly it didnt. I was sitting at my computer the other night and i already "didnt feel well" i could tell my brain was just being odd and i again smelled somthing terrible, but nobody else smelled anything. I have still been having a few myoclinic sz. but this whatever is going on is just annoying me! I go see my nuero next week and is it bad that i hate talking about all of this with him? I dont like really talking about it with anyone.

Dear tos8

that is great that you have not had big seizures for 2 months!

do please tell your neuro about the smells... those sound like simple partials.

i can appreciate your not liking to talk about it... perhaps when you talk about it with another person it makes the reality of it hit home (or hit harder). i can surely understand how you might wish none of it were happening, that there were nothing to be talked about. so, please do not judge yourself badly for that. nonetheless, it is in your own best interest to talk to your doc about it, even if the process is hard/unpleasant at the moment.

perhaps after some time it will be less difficult for you... i hope so.

take care now.

~ waves ~

Hey guys just wanted to update. I have still been seizure free from any big ones. We are still adjusting my meds. I have been tremoring really bad, but with the increase in my tegretol that seems to help. I was just upped on it again last week. I now am on 800mg of depakote a day and 600mg of tegretol a day. Both meds at the higher doses make me tired which i dont like since im already on pain meds to manage my chronic pain from tos. My dr again told me because or the seizures i do have to not be suprised if i would start having them again. But things are ok at the moment and im good with that.

Good to hear from you. Wonderful news to hear of you being seizure free at least from the big ones. I can recall when you have a high dose of these you can feel quiet sleepy. THere have been times I have had to lay down and take a nap.

My prayers and thoughts are with you.

Christian love,

Darlene

I had to reply to this about smells.I have gotten to the point where I crawl around sniffing the floor and go through cans of lysol.I pick up and rewash rugs and rearrange couch cushions. I keep a sinkful of lysol water to wash everything down constantly. I sniff all the bedding and act like a total whacko but at least my house is clean.

Update: im still having seizures and they are becoming more frequent, almost everyday, My parents are more aware of them then me, its the complex partials. Over the weekend was terrible, they were just over and over again, where my speach was repetitive and what i would say didnt even make sense and im time lapsing. Its now getting really frustrating for me!! Im on 1000mg of depekote a day and 1000mg of tegretol a day. Im looking into other drs now because this has been a year now of seizures starting and never being controled. Err these things are annoying!

Hi Tos8,
I'm sorry to hear that you are having more sz. You might want to ask your Dr. to do a CBC (complete blood count) and also do a drug level test. I know when I was taking both Depakote and Tegretol sometimes the drug levels would drop for no reason. Another thing that could be happening is that you may be having more sz. in the spring and summer than in the fall and winter. This is known as seasonal sz. A lot of it has to do with the amount of seriton and light you see in a day. Take note of the weather and if there's a low pressure often this will trigger sz. for many people. If you are still having problems smelling things that other people can't smell this is known as an aura or simple partial sz. I will often smell natural gas, or deviled eggs when this happens. It's weird but it is a sz. believe it or not. Here's wishing you well and my advice to you is to see an Epileptologist at an Epilepsy Center to get the best help. You can usuallly find thest Drs. at University Hospitals. Good Luck and May God Bless You!

Sue

I will agree with Sue about the time of the year. Most of mine came in the summer time, hopefully they won't come this year. At one time during the summer if I was eating cold ice one would appear. My thoughts and prayers are with you.

Darlene

Are you experiencing more seizures during Spring / Summer
than you do during Fall (Autumn) / Winter? It is not unusual
for quite a few people experience a rise during the Spring
and/or Summer time than those in Winter. While others
remain unaffected all year round.

On top of it - it is not unusual to be on medication (whether
having been on it for a prolonged period of time or just started)
and suddenly developed "new seizures".

I would strongly recommend that you speak to your Doctor
pertaining to this matter. While it is wonderful to know you had
gone through the period span of several months; sometimes
it does take time for the body to become "adapted and
adjusted" to the medication(s). On top of it, sometimes
medications too high, too little, side effects, and other
reasons - can be a reason for experiencing new type of
seizures ... or sometimes, it could be other reasons.

As for my end - I am the opposite, for cold is a seizure
trigger for me, and I do not need to amplify how bad it
had been for me this year considering how frigid it had
been in this Tropical State!

Here is wishing you all the best and keep us posted!

I went to a pain mangment clinic and they didnt want to mess around with my pain medication im on now because they said most meds are out because of my epilepsy! Just great! So they put me on nuerontin hoping they could kill 2 birds with one stone and after the second dose it made me toxic! I was sick and it took me 2 days to recover from it! I was confused and double vision, slurred speach, agitated, sick, it was awful! For some reason i cannot go any higher then 2000mg of seizure medication and right now im on 1900, but any higher then that i end up with all those crazy side affects! And this dr was wanting me to get up to 2700mg of that med a day, i couldnt even get up to 500 let alone 2700! Its frustrating because i feel i cant get the sz. or pain under controle!