as you can see from my previous post. i was experiencing just about every type of spasm there was but with one big difference. i was always conscious and the convulsions would last for hours, not minutes. this had the doctors completely stumped, but also fascinated. they had never seen this before so a lot of the time they were just guessing at the correct treatment/drugs. trying out different combos until they found something that worked. i think that in the end it was the gamma knife that started making the difference, not the medication - although of course the medication helped.
colin and i went back and forth between dr. chung and dr. tai, desperate. nothing's working! i'm not getting better! dr. chung counseled patience, he said that "right now it is as if you never had the gamma knife, the symptoms will get worse before they get better. maybe in 6 months you will start to see some improvement". 6 months! august, the date of my first follow-up MRI. dr. chung estimated that it would/will take a year and a half for my AVM to be completely obliterated. eventually the AVM will be too small to see on an MRI and i will have to have further angiographies (ugh!) to ensure that it disappears completely.
so we turned to dr. tai, the medication is not helping. i had been taking 15 mg of baclofen (anti-convulsant), 2 mg of clonazepam (anti-seizure) and 2400 mg of piracetam (brain metabolism strenthener) daily and was told just to take more clonazepam if i had bad convulsions. i remember one night, monday March 12th, i had been having bad convulsions for days and i ended up taking 8 mg of clonazepam in one day, desperately trying to control my body. that turned out to be too much and i woke up in the middle of the night having wet the bed. i had taken a lot of medication to switch my brain off and it had worked. my brain couldn't even wake me up to go to the bathroom.
that wasn't helping, so dr. tai upped dosages and added new drugs. currently i am taking 20 mg baclofen, 4 mg clonazepam, 2400 mg piracetam, 200 mg phenytoin and if the convulsions get bad, 0.5 mg xanax. i also take as many headache tablets as i need. taking all these drugs means that i have to have monthly blood tests to check my liver and kidney function and the phenytoin levels in my body. all the drugs in my system put a huge strain on my liver and kidneys, another reason not to drink. if i had one glass of wine, my liver would just 'pack up'. the phenytoin can be especially dangerous. if too much 'builds up' in your system it can cause seizures, weaken bones and lower white blood cell count, leaving your body less able to fight off future disease.
the other interesting thing about all these drugs is that you can't just suddenly stop taking them, you have to be weaned off them slowly. your body becomes so dependent on them that you form a physical addiction. if i just stopped taking the clonazepam, baclofen or phenytoin it would cause all sorts of crazy side effects like seizures, hallucinations, vomiting, depression etc. etc. so, i think i will leave it up to my doctors to decide what happens with my drug intake. although ... hallucinations could be interesting ;-)
