How Does It Feel When Your Medicine Starts to Work (If Even For Awhile)

[Dline]

OK, So when meds start to work, is it gradual, like they taper off --one week you may have 2, then the next week 1, then 3 weeks nothing then you find yourself 3 months with none, etc., or is it like BAM--totally gone?

I know this sounds so silly and everyone is different, but as someone who has had at least two complex, several simple and multiple auras a week (I know it could be worse), for the past 2 years without a break, hmmmm, well I don't want to jinx it...

 

[valeriedl]

Many times it takes a few weeks for your meds to start working. There's no set time. And it's not a 'I took them today so my seizures are going to stop tomorrow' sort of thing.

I know with many of the meds that I'm on it took awhile to figure out what the right dosage should be for me. They may put me on something like 500mg a day and find out that I might need to be on more mg of the med or have the dosage times set differently. Like taking 250mg in the am and 250mg in the pm instead of all 500mg at once or putting me on 1000mg a day. There are times that they find out the med isn't working at all so I'll have to go all through the whole deal over again with another med.

On average my neuro will give it about 3 months, messing around with the dosages and times I take it during this time, to see how a med is working for me. If it's helping me with my seizures then he'll leave me on it but if it's making no difference then he'll take me off of it and put me on something else.

Sometimes you may have to take more than one med. You will have to figure out what dosages of the two (or more) meds work best for you.

There's no medicine that is going to guarantee that your seizures are going to stop when you're taking it.

When I was first diagnosed 11 years ago I was probably having around 30 seizures a month. They were usually partials with one or two TCs every year. I have a VNS and I've been on the same meds, dosages and times that I take them for 4 years now or longer. On average I have about 7 seizures a month and it's been this way for years. They are still only partial seizures, with about 1 TC a year, but the seizures themselves aren't as bad (even the TCs) as they were before. So it may just reduce the amount of seizures and how bad they are like what my meds do for me.

 

[Dline]

Thanks so much for your reply! I've try Keppra and max out on the dose with no response, now Lamictal and Topamax combo at different dosages and I'm starting to feel different--less intense seizures, last week only a CP and a few auras...we'll see.

Also, reading above--30 a month! I'm so glad you've found something that at least eased that number--sadly it's now currently down to the number that I'm complaining about You are in my thoughts, Val. Thank you for the perspective.

 

[valeriedl]

Don't worry you're not complaining. I don't think anyone on here uses that word when it comes to seizures. Only when you are talking about your doctor or spouse - lol!

There are people who could have a seizure a day and people who could have a seizure every few months. Everyone is different. There is no set amount of seizures that you should be having.

I'm glad that the meds that you are on seem to be working. It just takes a little time to find out for sure. One of the meds that I'm on now is keppra. I'd love to get off of it because I get some serious keprage very often. My neuro doesn't want to take me off of it though because he's afraid of what could happen with my seizures.

 

[Dline]

Thanks! The keprage I know all too well--one time my hubby dropped me off at the grocery store to grab a few things. My carriage was really stuck and I finally got it out. I was so angry the entire shopping trip that when my husband picked me up, I started yelling (really kind of out of character), about who knows what.

Ahhhh, yes. Lovely keprage I don't think anyone really wanted to be around me at that point. I don't think I wanted to be around me! Now with these meds I just fall asleep sitting up a few times a day! Sigh... You just never know.

 

[N Sperlo]

Meds always seem to work quickly for me. I was having multiple partials a day when I started. Keppra alone worked for me for a while.

Drowsiness has always been a problem. Naps help, but eat away the day. Best thing I've done is just get offthe couch and do something . It wakes me up.

 

[Dline]

That's starting to be my trick, too. I just CAN'T sleep my life away-it's making me so depressed. Plus I have two kids (six and four) and it just wouldn't be fair to them.

The hard part is to get the energy and will to pull myself up and out of that gross tired feeling. I've been trying to do what I call "The Energy Dance" , especially if my kids are around...I pull myself up, say I need the "Energy Dance", and start clapping my hands, jumping around and dancing (a silly one with my kids). Most of the time it gets the blood flowing...