It Ends Here

[JLogefeil]

I think it's over for me. Today it happened, I lost it. I just got done crying for two hrs, my hubby thinks its the Keppra. I have made the chose to stop takin my Keppra, the reason behind that is, all the docs I ve been to have or are thinking my seizures are fake. For a year now I havent drove becuase I knew I shouldn't. So since I haven't been diagnosed with epilepsy (just a seizure disorder, that can mean a lot of things)I m going to start living my life like I used to, I m going to stop taking my meds, stop going to my neruo doc.
If they don't believe me why should I believe them, or believe in myself that there real.

 

[CQ:)]

Hi Jlog,

I can imagine it must be very frustrating with the drs still saying you are having pseudoseizures & the medications aren't working for you.
Please do not stop the Keppra on your own as going of your anti epileptic meds on your own can put you at more risks of having seizures. Speak to your neurologist about how you are unhappy on the Keppra & see if they will slowly take you of the Keppra or try another med.

Keppra is also known as Keppra Rage as it can affect peoples moods. I am on Keppra & haven't had any problems with Keppra Rage but there are alot of other members who have had Keppra Rage so they may have more insight on how to deal with it.

 

[Fedup]

Hello JLogefeil

I was on keppra and had to come off it slowly, the things it done to me, some were funny when I look back, CQ is right talk to your neurologist and tell them how you feel, it took a vet to diagianose me, so do not give up, its frustrating but you just have to keep at it. Always believe in yourself, your worth it.

 

[AngelwithDentedHalo]

First, going off Keppra all at once is dangerous, even if you remain seizure free and second, get another Neurologist, find one who will listen to you, it's not easy and I've been lucky to have found one. I know it was meant to be cause I was actually referred to another and ended up with Dr Riess and I couldn't be happier. Go to another Neurologist & don't stop taking meds until you do or when you do go to another doctor, tell him the side effects and he can switch you. Just because they don't believe you, doesn't mean you're not having seizures, just means you need a different doctor. Going off meds all at once can actually bring on more seizures, go to another doctor. I had to build up to taking what I do a day now because my doctor said it's dangerous to do the max dose immediately and same goes for going off the meds.

 

[momof3boys]

Yes I agree, Im on Keppra XR and I was told by my neurologist that I cannot just stop Keppra. It is very dangerous to do so. When I was in the process of trying a new seizure medication last year, i was being slowly weaned off of Keppra. I was going down 250mgs each week. It would have taken me 12 weeks to get completely off of Keppra. Thats one thing I would strongly advise against to do. Please dont just stop taking the medication. It can cause more harm than good.

 

[julie wishes]

http://www.coping-with-epilepsy.com/forums/f20/over-40-simples-16454/

Please read this. If you want . Stopping keppra cold turkey was awful. I wouldn't suggest doing so. You have to wean off. It is the safest route.

Now for the rest.... GRRRR !!!!! With the whole thing! I know you are soooo frustrated. Before making an emotionally charged decision about your health, might I suggest a two day cooling off period. Get some rest, eat well and hydrate. Take a few walks and think things through. Get out of the house to some neutral territory to think this through.

First, you experience stuff
Second, it affects your life
Third, you've tried to play it their way
Fourth, its not working
Fifth, you still have issues that are affecting your life
Sixth, ........ what's the new path?

Take it slow, devise a plan that is BEST for you. You deserve the best care and a kind medical professional that will help you. In the end it comes down to one thing....

You need a different doctor. And most likely a different medicine or no medicine if you want to test the waters..... but please do it safely. We care about you and don't want to see you struggle worse which may happen if you just quit cold turkey.

Chin up hun... you will prevail!

 

[valeriedl]

Keppra can make you crazy! I know this and every one in my family does too. My dr is looking for a different med to put me on because I want to stop taking it.

A few months ago I lost it and locked myself in the bathroom for about three hours. I layed on the floor crying. Life just overwelemed me and I know that the keppra probably had something to do with it. The whole family tried to talk me out of there and I told them if they wanted me out then they had to pick the lock. Finally they just let me stay in there and do what I needed to do. My husband did end up talking me out but as I said that was around 3 hours later.

I know someone who has taken keppra and was taken off of it. The dr told her to go off of it slowly because it can cause horrible withdrawl effects. It took her a month to stop taking it.

If your dr isn't working then find another one! When I first started seeing my neurologist every other visit I would see his physician's ass, oops I mean assistant (but she was an ass). I was having seizures like crazy inbetween visits and she told me it was because I wasn't taking my meds. I told her, my husband told her and even my mom (who was at that visit too) that I always take my meds and I take them on time. I have an alarm on my phone to make sure about this. I don't know how long we argued with her about this. I don't remember if she did any changes to my meds or not at that vist, it was a good many years ago that this happened.

When the visit was over and I went into the waiting room, where my neuro's secretary was, to scheudle my next appointment I started yelling like crazy, keppra probably helped with that! I told her that I was never going to see that woman again because she didn't listen to me and was no help. If I couldn't see the actual neurologist then I was going find a new one. Haven't had to see her since.

If I have a problem going on inbetween appointments then the actual neurologist will call me to see if he can help me over the phone. If I need to come in inbetween visits because something is going on his secretary doesn't even ask me if I want to see his physicans ass (oops), she schedules it with the neurologist.

 

[CQ:)]

I know someone who has taken keppra and was taken off of it. The dr told her to go off of it slowly because it can cause horrible withdrawl effects. It took her a month to stop taking it.

I've been told that Keppra is a very difficult med to come of & it can cause a few withdrawl symptoms.
I speak to a lady on an Aussie epilepsy forum who had brain surgery (right temporal lobe) in 2010. Before her surgery she was on keppra & Lamictal but 12 months after her surgery she was taken of the Keppra but she did it very slowly. I think it took 4 months for her to get completely of the Keppra, she had some unpleasant withdrawl symptoms at 1st (shakes, felt out of it) but she found Vit Bs + B6 helped her.

I think other members on here who are on Keppra have mentioned Vitamin B has helped them aswell.

 

[Nakamova]

No doubt the Keppra is making you feel lousy, and I understand why you want to quit. But don't quit cold turkey -- even if you don't have epilepsy (and I believe you do), stopping abruptly can cause a seizure. Tapering off slowly is the safest way, and can help minimize withdrawal side effects.

If you want to be med-free I completely understand, but if your symptoms persist or progress, please consider trying another medication or treatment. There are many anti-seizure meds out there, and there's a good chance you would find one that would help control your seizures. There are also other treatment approaches such as diet and neurofeedback that might be helpful too.

 

[julie wishes]

Keppra can make you crazy! I know this and every one in my family does too. My dr is looking for a different med to put me on because I want to stop taking it.

A few months ago I lost it and locked myself in the bathroom for about three hours. I layed on the floor crying. Life just overwelemed me and I know that the keppra probably had something to do with it. The whole family tried to talk me out of there and I told them if they wanted me out then they had to pick the lock. Finally they just let me stay in there and do what I needed to do. My husband did end up talking me out but as I said that was around 3 hours later.

I know someone who has taken keppra and was taken off of it. The dr told her to go off of it slowly because it can cause horrible withdrawl effects. It took her a month to stop taking it.

If your dr isn't working then find another one! When I first started seeing my neurologist every other visit I would see his physician's ass, oops I mean assistant (but she was an ass). I was having seizures like crazy inbetween visits and she told me it was because I wasn't taking my meds. I told her, my husband told her and even my mom (who was at that visit too) that I always take my meds and I take them on time. I have an alarm on my phone to make sure about this. I don't know how long we argued with her about this. I don't remember if she did any changes to my meds or not at that vist, it was a good many years ago that this happened.

When the visit was over and I went into the waiting room, where my neuro's secretary was, to scheudle my next appointment I started yelling like crazy, keppra probably helped with that! I told her that I was never going to see that woman again because she didn't listen to me and was no help. If I couldn't see the actual neurologist then I was going find a new one. Haven't had to see her since.

If I have a problem going on inbetween appointments then the actual neurologist will call me to see if he can help me over the phone. If I need to come in inbetween visits because something is going on his secretary doesn't even ask me if I want to see his physicans ass (oops), she schedules it with the neurologist.

YES!!!!!! Excellent story .... :banana::rock::bjump::brock:iano:

 

[Dolores]

Jlog - Take care of yourself - Find a doc who you can trust and who cares about you and your quality of life - It really sucks that some docs just don't care but I finally found one who does and I promise you it makes all the difference. Then you can take control of what is happening to you and get on with living your life.

I really hope you don't quit the Keppra cold-turkey because that may just make things worse. I am so very sorry you are going through this.

 

[JLogefeil]

Thank you all, you all had lifted my little spirt I m going to continue with my Keppra.
Since I didn't take my morning pill, is that going to effect me?

 

[AngelwithDentedHalo]

Thank you all, you all had lifted my little spirt I m going to continue with my Keppra.
Since I didn't take my morning pill, is that going to effect me?

I've forgotten mine a time or two and nothing happened. Glad you are going to continue taking it but be sure to tell your doctor about what happens when you take it, he may be able to get something else that is just as effective without the side effects. I take the same thing but luckily have no side effects I'm aware of.

 

[acpollard2010]

Prolly not if.it hasnt yet and u take your night dose more than likely will be ok.

 

[AngelwithDentedHalo]

acpollard, did you get my message?

 

[acpollard2010]

Ya I did

 

[Hand of Blood]

I think it's over for me. Today it happened, I lost it. I just got done crying for two hrs, my hubby thinks its the Keppra. I have made the chose to stop takin my Keppra, the reason behind that is, all the docs I ve been to have or are thinking my seizures are fake. For a year now I havent drove becuase I knew I shouldn't. So since I haven't been diagnosed with epilepsy (just a seizure disorder, that can mean a lot of things)I m going to start living my life like I used to, I m going to stop taking my meds, stop going to my neruo doc.
If they don't believe me why should I believe them, or believe in myself that there real.

i understand how u feel! ur right about if docs dont believe u why should u bother! id have that attitude too, some neros seem to think its just panic attacks i take! that made me angry! you could go to the docs and demand u want off the keppra to try it! or even a different drug! its best not stopping it urself!
i know how u feel on the keppra its a nightmare drug and i hope to get off it too soon!
If you go to neros tell them everything how u feel be honest about the whole no1 believes me part it may work and they may help you!

 

[hharpe03]

Thank you all, you all had lifted my little spirt I m going to continue with my Keppra.
Since I didn't take my morning pill, is that going to effect me?

I was going through the same thing as you. My Keppra rage was AWFUL! I hated how it changed me and how I treated people around me. And a few times I was dead serious on stopping it cold turkey... But I didn't because I would finally cool down and remember that I am taking it for a reason... And if I needed to change meds, I had to go about it the right way.

As for it effecting you by skipping your morning dose, it may or may not effect you. If I skip a dose, I usually feel a starting of a seizure a few hours later. I think you have to put into account how much sleep you got and other factors that may trigger a seizure for you.

Remember, non epileptic seizures ARE real seizures, not fake. I have been SO scared that my seizures were psychological. I did have an abnormal brain activity on one EEG and I was relieved, but the Keppra was too crazy. I finally went in for a video EEG to see where they are coming from and to change meds to best suit what I need... And guess what?!

I was just diagnosed with non epileptic seizures! I mean, really, less than an hour ago. They took blood and watched the video EEG and no changes in my brain. And I have to say, I am happy!!! I accept this diagnosis with open arms even though I have been dreading it. I know I am not in control now and they are real seizures, just not caused by my brain. Infact, my neuro increased my Keppra to 2500mg/day. It is crazy that I have breakthrough seizures on anything less than 2250mg/day.

Now, I can work on this and one day be Keppra free! Free from all meds! It seems like such a freedom!

Good luck with what is going on with you! This website and the people here are SOO amazing and you CAN and WILL get through with whatever you are going through!!!!