Hi there - from a new guy

[Pinchie]

Hi guys and girls

My name's Mark and I'm 25.. I started having seizures a few years ago - either I had my first after whacking my head really hard or I whacked my head during my first. We never figured out that part. Managed to fracture my T9 vertebra at the same time.

About a month later I started getting regular seizures.. like to the point I could mark on a calendar when they'd happen. Every 26-28 days I'd have a three or four day period where I'd be pretty well out of it.

My neurologist immediately started me on Epilim, which really reduced the severity of these seizure periods (often leaving me with only partial seizures). After six months he added Lamictal, which didn't reduce the severity any further but did totally randomise the timing

Another six months later my neuro took me off Epilim and replaced it with Tegretol. Under this cocktail I saw no real difference.

I'm on my last week of Lamictal now - I'm being weaned off it. I had Keppra added at 1000mg/day about two months ago... and boy, these ones hit hard. I've managed to go from a severely-underweight (58kg, 6'2") normally-rational person to a 75kg nut. This stuff seems to make me so irrational, but I don't know whether that's because I'm worried about this sudden weight gain - 17kg in 8 weeks isn't too good. Is this normal on Keppra?


The neurologists have spent a while trying to figure out more about my exact epilepsy.. I've had nine EEGs now, and they've only picked something up on two of them. I've got my first conscious MRI at the end of the month.. my last one was after my original head whack, so I was well-and-truly in la la land. I'm a little claustrophobic, so I'm a touch anxious about that.


I think the main thing my epilepsy has made me realise is that I'm really... biological. I don't know how else to explain that part.
The doctors have pretty much made me feel a guinea pig the whole way, curiously selecting new medications and telling me bugger-all about them :/


Anyway.. it hadn't occurred to me to find somewhere online to see if what
I'm feeling is normal. I found you guys while looking up information on MRIs.

See you around

 

[Nakamova]

Welcome Pinchie!

There's lots of good information on this site, and lots of good folks to chat with. Feel free to explore and vent as needed. In particular I recommend reading about alternative approaches to treating epilepsy (such as diet and neurofeedback) that members have had beneficial experiences with.

I know just what you mean by feeling "biological". People with epilepsy are at the mercy of our seizures, and then just as much at the mercy of the anti-seizure medications. And we're at the mercy of the neurologists -- they have an array of drugs to offer, but don't really know what will work in each specific case for each specific person. So yeah... we're guinea pigs, at least some of the time. It sounds like you've had an especially unpleasant ride on the medication merry-go-round. Your neurologist should be providing more and better information to you about the drugs and their side effects. Be a squeaky wheel! Demand that he explains what he's doing and why. If you're not satisfied with the answers, find a different doc. Regarding Keppra: It can make you very moody and irrational -- some people have found that taking B6 helps with that. Keppra can also cause weight changes, so that may be the cause of your rapid weight gain.

I hope your upcoming MRI proves useful. If you're claustrophobic make sure your doctor knows that. In some cases they will give you a small Valium to help you stay calm.

Good luck!
Best,
Nakamova

 

[epileric]

Welcome To CWE

I do know that feeling of being a guinea pig.

I agree with Nakamova, don't be afraid to ask questions. I usually mark them down because I often forget at least one of them. Also look up new medications so that you can be aware of what to expect http://www.drugs.com/drug_information.html Keep in mind though that the side-effects listed are all possible side-effects meaning that everyone reacts differently to these medications & you may not get all the listed effects. It is nicer when you know what to possibly expect though. Oh.... & yes, I also got pretty fat on Keppra but the emotional side-effects were the real horror. I hope it helps you better than it did me.

You also might want to check out other therapies to help your seizures. Quite a few people here seem to have had success with neurofeedback. http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

As for your MRI- Definitely tell them about your claustrophobia. Also the hospital I went to let you chose what kind of music you wanted piped into the MRI while you were scanned, I found out after I could even have brought my own CD so bring one just in case. Remember you're going to have to sit still so don't make it something you're really going to bang your head to. Keep us updated how things go & good luck.


Meanwhile take your time & check out all that we've got, this is an excellent reference site.

 

[Cornczech]

I think the main thing my epilepsy has made me realise is that I'm really... biological. I don't know how else to explain that part.

onder: I know EXACTLY what you mean. I have been kinda on the fence about what I joking refer to as "God, the Devil and the Fairies"......but as soon as I had that dang first seizure at age 42 this last March......I realized I was NOT going to wake up after death on some spiritual journey, I was just gonna be dead...because I am simply flesh and bone and nothing is special about how I see the world in that...it is all brain and a biological function and not some kind of mystical experience...hurt that brain and the perception of your world completely changes......that's the BEST way I can describe how I feel....you may be completely different in your perception...but that is how best I can define it in MY organic mess called a brain.....

Ciao, ya'll