How do you know if your medication is the right one?

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Intothatendlessblue

Intothatendlessblue

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Hello all.

I'll be headed to see a new doctor tomorrow as my seizures have increased in number and severity. I've had some really terrible side effects related to Keppra and have had to increase the dosage four times since I was diagnosed in June 2012.
What I'm trying to ask is...
How did you(and your doctor) know that the medication you are/were on is/was the right/wrong one?

Did you have trouble and asked about a new medication?
Did your doctor decide it was a good idea to try a different medication or medication combination?

I'm sorry to sound naive about all of this, but I am way out of my depth and I've nowhere else to turn. I'd appreciate some help and advice.

Thanks.
:e:
 
cost vs effect.

are the side effects worth the out come,

are they doing what they are advertised to do, and at what price. some of the meds have horrific side effects

are you happy with the way you feel,
 
Intothatendlessblue

The thing about medication to control this is like hit and miss if you like, the only one who actually knows how its going is you. Keppra has worked for some but for myself and others it did not. There is always a certain trouble related to getting meds changed with a doctor, but deciding to change or try other medications has to be in agreement with you. It can turn out that it will take a combination of medication to give you some control. You do not sound naive just concerned. Any decision about medication has to be between you and your doctor, always ask about side effects of medication before you leave the neurologists office they may not like it but its you who will be taking the medication. Write down all the side effects that happen to you, you should be keeping a diary as it is, if not then start one for yourself.
 
if you ever say "I'm trippin bawls" you may be on the wrong meds.


or you may may be on the right meds, once again, it depends on what you habve to do with the rest of your day.
 
:agree: I agree with Fedup.

I was on Dilantin and phenobarb. for around 30 years, Dr. wanted to try NEW meds. on me and I agree.
I was on about all the meds. out there, come to find out the Dilantin along with Clonazepam is the best for me.

Each meds. have side effects, it's a matter of what meds. gives you the best seizures control and at the same time you have a quality of life.

With E. it seems it is only by trial and error that each person finds what is best for them. Having said that it is not easy.
 
It was ALOT of tiral and error with me.

Some meds worked, some didn't and some that worked I couldn't take the side effects of. Just because the med works for someone else doesn't mean it might work for you.



After awhile we found a nice group that managed to control my seizures. The only one that I really hate being on is the Keppra, I'm very moody on it and sometimes just want to punch people.

I told my neuro that I'd like to try to get off of that and look into taking something else, so the trial and error might start again.

Good luck.
 
Thanks! I've started my seizure diary (something that was suggested to me when I joined this site) and I'll talk to the doctor today about the side effects I've experienced on Keppra. I wish there was a better way to go about all of this, but it seems that trial and error is my only option.

Thanks for all the advice and information! I really appreciate it.
 
Agree with the other replies. I was put on a med and the side affects were intolerable, I was taken off the med and put on the next one.

Fortunately the Keppra has given me the least problems and im no longer having daily grand mals during the day. Just nocturnal now.

I also take many vitamins. Just added papaya enzyme this week; that fixed the horrid constipation problem. :woot:

Alot of life style changes and yes that daily journal!!!!!

Fyi, I added some forms to my website that anyone can download - pdf format. Generic calendars, medical journaling, etc to get you started.
 
For me, it was a lot of what worked for me when I was younger and had epilepsy. I had about a 6 year break with no seizures and now they are back and worse. A lot of it is trial and error since no one will know how you will interact with a med until you try it. Right now I'm on tegretol XR, keppra, and lamictal. The keppra, I'm slowly weaning off since I hate what a cranky biatch I am when I'm on it. Yes I did say that to my nurse and doctor, because you need to always be honest with them. Make sure they know what birth control you are on, because a lot of seizure meds interact with birth control and cancel out the effects of the bc. Good luck to you! I hope all goes well!
 
I've only been on two, and I'm still on them: Keppra and Lamictal. Keppra was the first one I was put on after my initial diagnosis, and like you, my dosage was changed a few times, especially because I was having a LOT of simple partials still. I don't know if I would've been having T/Cs as well without it because EVERYTHING got worse after that last T/C, but it didn't seem to do anything for the simple partials. My neurologist thinks it controlled the generalized seizures though, so I'm still on it (even though I didn't like it).

My neurologist put on me on Lamictal because Keppra alone just wasn't doing it, but left me on the Keppra and actually increased the dose a little. I actually asked about getting off of Keppra but my neurologist said if I did I'd need to start another one... and... I don't really want to readjust again, plus I don't feel like a walking zombie, and I know that can be a constant side effect of most.

Anyway, we're still trying to decide if I'm on the right combo or not... I think it's fine, but he's concerned I'm still having a reasonable amount of simple partials every month, so we're doing more tests... I can only imagine that part of the reason he's been so liberal recommending them is because I'm in the military and the military will pay it if I need it (plus we're kind of trying to figure out if the medications are doing a good enough job to warrant me staying or getting out).
 
Oh, and yeah... Keppra did affect my moods, especially before antidepressants. I'm now on Zoloft and Buspar, which seem to be doing a great job with my moods, but I don't like taking a medication to counteract another. Honestly, though, I had some mood problems before I was ever on anything - Keppra just increased them.
 
I've had problems with lots of meds. It depends on what the problem is, for me. When it was side effects, I would wait it out for a while to see if they went away. With Keppra, however, I didn't wait long because it made me paranoid and depressed, so I went to the doctor and told him to get me off this medication right away.

Other times, my doctors were usually pretty much in the same boat as me when it came to medication. By the time I was wanting a change, they were suggesting one. The only time that didn't happen was with Tegretol. I expressed to the doctor that I wanted to try something different, and she chose to raise my dose instead. So I sought out a new doctor who would work with me on my terms.

Don't be afraid to fight for what you want. Sometimes it takes a few rounds of doctors to find one that fits you best.
 
As much as I want to get on meds so that I don't have another tonic clinic I'm very worried about the side effects especially the depression and suicidal thoughts. I'm already not doing very well after the latest two episodes last Thursday (barely eaten anything since and I alternate between extreme stress and depression). Is it common to have severe depression after a tonic clinic or is this just another wonderful aspect of my character coming out?
 
Hockeyandringettemom said:
As much as I want to get on meds so that I don't have another tonic clinic I'm very worried about the side effects especially the depression and suicidal thoughts. I'm already not doing very well after the latest two episodes last Thursday (barely eaten anything since and I alternate between extreme stress and depression). Is it common to have severe depression after a tonic clinic or is this just another wonderful aspect of my character coming out?
Click to expand...

You really need to get back in contact with your doctor. Something that I've learned as I try to adjust to my new medication and my old medication... and the seizures is that we each respond differently, yes, but any medication can heighten those feelings of anger or sadness. I know that this is particularly hard for you, but talk to your doctor, its okay to ask for help. It can be difficult to move on after an episode (feel free to look at the mini-rant I posted the other day), but as another CWE user reminded me, we are better than this. We are stronger than this. Epilepsy is part of who we are, but it is not all of who we are. You need to talk to your doctor and keep your head up.

Be strong, I know you can.

-Mary
:e:
 
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My Neuro just started me on Levetiracetam. Started today and am hoping to find people to talk with about the side effects. I like a lot about the medicine but there are many things about it I hate also. My doc wants me to build up on this then start lowering my carbamazepine level. Part of me is anxious another part of me is scared as hell... Guess I will take each day as it comes

john
 
Side effects mostly u need one where u can work properly I been on tegretol for ages and for some reason they won't let me change! They make me feel like a zombie
 
Thanks intotheendlessblue for the words of encouragement. I just had another pass out/tonic clinic today 615pm Ontario, Canada time while I was on the phone with my mom. I had been talking to her for over an hour about how depressed and stressed out I am over last Thursdays 2 episodes. Not eating or drinking for the last 4 days probably didn't help matters. Hand of blood how do you know its not the keppra making you feel like a zombie? and why are you on 2 meds?
 
Hockeyandringettemom,
My doctor just started me on a second medication. I asked him why two medications... he let me know that sometimes one medication just doesn't control the seizures. I was started on Keppra at 500mg 2x daily, then had to increase to 750mg 2x daily, and then up to 1000mg 2x daily... all of these increases of Keppra and I was still having seizures... thus I was started on Tegretol. I hope that you get everything sorted. If you ever need someone to talk to, please feel free to message me. I wish I could do more to help.
 
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