Really stressed out

[Russ23]

Hi

I'm new to this whole epilepsy thing, being diagnosed just 3 months ago. I reckon I've been having partial seizures though for around two years, but it only got so I knew something was wrong at the start of the year, when I wrote off my car.

At the moment I'm having absence seizures where I do random stuff that I have no recollection of, myocyclonic seizures (umpteen times a day) and these strange ones that wake me up at night. Even the neurologists are confused.

At first I was ok with it, but now I've been on tabs for 2 months and if anything its worse (except the night ones, which have disappeared for the minute), so it's REALLY getting me down. I just cant see any light at the end of the tunnel - the jerks are becoming really debilitating and I've lost a lot of coordination so I knock stuff over all the time. I am constantly exhausted from so many seizures and my joints ache from jerking. The neurologist says he cant say it wont get worse, and I'm really worried its just a matter of time before I have a full blown one and wind up on the floor.

Absolutely everything seems to set off my jerks. I'm getting more frustrated by the day, and I just think everyone is getting sick of me being sick, and sick of hearing about it - I know I am.

How long does it usually take before tabs kick in, and has anyone any advice?

[Bernard]

Hi Russ, welcome to the forum.

Generally, anti-epileptic drugs should be working within a couple weeks of attaining the therapeutic dose.

Sounds like whatever med you were prescribed is not offering you 100% control. Your neurologist might consider switching you to another med or adding another med to your schedule.

*You* might consider a Proactive Prescription for Epilepsy. HTH!

[skillefer]

hi Russ! Welcome to CWE. Sounds like you need to tak to your neurologist and let him know that the meds aren't working. That's one of the frustrating things about epilepsy...it can take multiple tries before you find a med that works for you. Because each person is different, what works for one patient may not work for another. Also, have you tried figuring out what is triggering your seizures? For some here, it's food allergies, for others it's lack of sleep and too much stress. For other's it's flickering lights or certain patterns. Not everybody figures out what their triggers are, but to try, you can start keeping a journal. Write down everything you eat and drink as well as how much and when. Also write down how many hours of sleep you get every night and any stress your under. Then, write down the seizures you have(if you can remember), when, how long they last, and what you were doing right before they hit. Then, take that journal in to your neurologist. You may find that there's a pattern. Like only having seizures after you ate or drank something or if you've not had enough sleep. Also, if you're a caffeine addict (like I used to be....9 cups a day) you will want to start cutting back. That means coffee, tea , and energy drinks. Don't quit cold turkey. Just try trimming back slowly. Oh! Also, you definitely want to cut back on any alcohol consumption. It can mess with your meds. Oh, and depending on what med your on, you might want to stop eating or drinking anything with grapefruit in it. Some meds won't work with grapefruit juice. I hope this helped. As I said, welcome. Trust me, we all know what you're going through. So feel free to ask questions, vent in the padded room (epilepsy can be very frustrating), or just chime in.

And most importantly, remember that epilepsy is not the end of the world. I know it seems like it right now, but it isn't. Many of us here have advanced degrees, careers, families, etc.... In the US, one in 100 people have epilepsy. It's NOT that rare. So you're definitely not alone. Try to think of it like asthma or diabetes. Something to be dealt with. At least, that's what helps me. Anyway, hope this helped. Also, check out the Epilepsy 101 thread in my signature. It's got some great basic info.

[RobinN]

Hey Russ - Welcome
I agree... meds are right for you.
Seizures were worse on meds for my daughter.
For me my intuition tells me that her liver couldn't handle the added burden of the meds, and her intestinal system not functioning properly her whole life also added to bad absorption of the drugs.
In my book if things get worse... back track.

Heal from the inside out Russ. Your threshold was higher three months prior for some reason. Let's figure out why.