fits 4 years apart , just put on topiramate - dosage question

[corsetine]

hi i am new to the forum and have never really looked into my "issues" they are usually put in a tight sealed box left far far away were i dont have to deal with it so with that in mind ill get you all up to speed to see where i am coming from. When i was a kid { 8yr} being the good sister i am , climbed up to the bench to get a cup down for my little brother while my mother played the pc. this resulted in the cupboard being pulled down landing on me , it was about just over a metre wide { a yard and a bit ??} filled with every bit of chinaware my mother could put in it lol . behind me was the fridge that was now sporting so huge dints. so i came out looking like id been hugged by edward scissorhands. anyway i wouldnt say my mums first aid skills were top knotch and i am not going to judge her on that but obviously i needed a hospital not the neighbours. anyway a few hours later i was in and out of consciousness and off to the hospital in an ambo. so this is the event that had shaped my life for a while.

fast forward to gr 12 { 17yr} had an eventful year , bfs parents thought i was dead but it was the first seizure id ever had , so bundled off into the ambo sirens a blazing , i got called a drug addict , drug mule , all those awesome things and then eventually given valproate this was after a few months though. i took it , i gave it a fleeting chance but i am stubborn teen and took my self off it. that stuff was the worst and turned me into a zombie.

now im 25. after being fit free for so long and the world threw me a curveball last year. it was somewhat stressfull , id gone through huge fights at work that went on so long that id forgot what it was about but it was a daily abuse that got me down { understandable right } and im the one who just takes it and then shoots the odd glare and ofcourse id gone through the attempt kidnap on my daughter from daycare which eventually trickled down to a consent order with the daughters father.

apparently i have grand mals but i dont wet or loose well anything. i had one like that when i was 17 and that was my first. i dont have sore muscles or anything liek that. my last one looked like i had fainted according to my 6 y/o and showed me what i did. she just said i looked like a drama queen and then tried to vaccuum up all the cereal i spilt. i went back to work the next day even with forklifts doing laps of the warehouse around me , no biggy. lights a flashing!

so now im trying to go for my drivers liscence. ive done all my lessons , as far as im concerned my seizures are far and few apart and i dont feel like theyre going to come back any time soon. ive noticed a pattern and know when to chill out etc. so ive started topiramate. im on 25mg daily until i built up to three tablets a day. i personally do not think im going to function on 3 tablets a day. ive been on one tablet a day 4 nights now and the tingling is already kicking in. i think my first experience with the medication valproate has just put me off so much i was so hesitatant to try another. even though this one is different i still need to function. has anyone been in my shoes were their fits are far and few apart , then put on meds? im also scared of having more fits. but my doctor does not understand me , im pretty sure im still labelled as the drug addict , but if ud ever met me youd see im far from it!

 

[survivor]

First of all welcome dear Corsetine! All of us here are sailing in the same boat. So dont think that nobody will understand u! When I went through the post one thing which i really felt was resentment. Lots of resentment in u! Why dear? U know as far as the drugs are concerned and the side effects, there are great experienced people over here who can help u but my single suggestion to u is to bring down the resentment levels as this feeling has an affect on the body which is opposite to healing- detrimental!

 

[corsetine]

i feel resentment towards it pretty much because of how my parents handled it. like it was a problem they could treat as if it were the common cold. nothing was really explained , it was more take these pills, clean the house , look after your brother , get your bro and yourself to school on monday cos i have work kinda attitude. so i try not to be a downer about it lol in my original post i just wanted to get the past out so all knew where i was coming from but positively to myself as all my fits are in the morning every morning i tell myself not to be anxious and try and think of something happy to replace the negativity and then tackle getting my daughter ready for school

i just find that when i got my prescription last tuesday , my doctor was very walled up and had his mind up so to speak and i just couldnt get any more information out of him about this type of medication. he was also the one who had cleared me several years earlier and pin pointed my trigger to be hyperventilating and the to have the recent eeg scan done this year to be flickering lights. i also didnt know it was possible to jump from one trigger to another i thought you had for eg hyperventilating + lack of sleep + stress = fit also i dont understand why i have to take three pills a day when i am not having frequent seizures imho.

so as you can see i literally do not talk about seizures with anyone so i end up having a ton of theories / questions. lol

 

[corsetine]

oh just to clear up

- hyperventaliting eeg scan result came from the dr i saw last tues.
- flickering lights eeg result came from a private hospital.

here in australia there can be some controversy on what hospital you get your scans at and unbeknownst to me at the time the hospital had a bad rep for rushing whatever result onto their eeg scans when they came back from their holidays. o_0

 

[Nakamova]

Hi corsetine, welcome to CWE!

Like you, I wondered whether I needed to be medicated for infrequent grand mal seizures, especially when afterwards I knew I would be seizure-free for awhile. But the last time I went off meds (under my doc's supervision), my seizures began escalating in frequency -- instead of every 6 months, it was 4 months, and 3 months and then 2. That's the risk of not having your seizures controlled -- your brain can get in the habit of seizing and your seizures can get worse as a result.

That said, there are other meds out there that you could try that might have fewer, more tolerable side effects. I'm on Lamotrigine, on a low dose, and it does the trick with no obvious cognitive side effects. It's not perfect (none of them are), but it's worth trying if your current meds are unsatisfactory.

I may also try neurofeedback in the future when I have the funds to pay for it. I'm now 3.5 years seizure-free, and I'd love to try going off the meds again sometime in the next few years. I figure the neurofeedback might be helpful preparation for that time.

Best,
Nakamova

 

[corsetine]

so far these meds are working out at one tablet a day , sometimes at night i might get jittery so even now on day 5 im not as jittery , switched to decaf and the tingling has stopped. i dont eat as much though either so , so far this med is working out. it just seems like a stab in the dark about the dosage. its not like i have anything to work with ie increase dosage until no seizure activity.

like i can see im taking my day to day activities somewhat better but i still have alot to get a hold of! ill be wanting to get a new job soon. how do interviews pan out? do you lay all your cards out or do you keep this one a secret even on medication? id be going for office jobs or IT work so to me its easy stuff lol but ill be on public transport. hmm anyway id love some comments on that too .

 

[Nakamova]

You're not required to disclose your epilepsy on a job application. Here are some CWE threads on the topic that might be helpful:

http://www.coping-with-epilepsy.com...lication-they-suffer-e-been-sucsessful-12994/
http://www.coping-with-epilepsy.com/forums/f23/myoclonus-petit-mal-job-disclosure-11539/
http://www.coping-with-epilepsy.com/forums/f23/do-they-have-right-my-medical-info-3986/