Do you get withdrawal between doses?

[keaze]

Hello. I included a poll above and am anxious to see the results!

After a very brief look on the web I strangely found no discussion about this. I thought I would come and share it here.

Am i the only one getting withdrawals between doses? I have frontal lobe complex partials and I'm on 2x lamictal 225mg and 2x keppra 500mg.

I take my pills in the morning, but later in the day I will start feeling increasingly annoying withdrawal symptoms. You know... this feeling like you need your next dose soon because your body really doesn't feel well?

When I was diagnosed about 10 years ago I started on tegretol. I don't remember much about what symptoms I had back then because when you're new with epilepsy you just go with the flow. It made me very very tired, that's all I know, which is why I switched to only lamictal about 3-4 years ago.

When I woke up in the morning I was feeling those withdrawal and usually had 2 or 3 partials, and same thing at night before I took the next dose.

About 6 months ago my neuro told me to try stopping the pills (lamictal) because after a few years it's possible that epilepsy stops and we were thinking maybe my in-between-doses seizures were caused solely by withdrawal since i was on a very high dosage ( 325/325 ) and withdrawals can technically lead to seizures. It didn't work. I went in a coma for a week and heard very strange and ironically hilarious stories about my behavior in the hospital, of which i have absolutely zerio recollection. I've been told I was making such and tantrum and pushing doctors and nurses, they had to tie me to the bed! And before that I was pretending I was a cowboy on a horse making tongue clicking noises and things like that. (What the hell, right???? I'm such a calm and thoughtful person when I'm in my normal state of mind). I was having so many seizures and refused to swallow pills, they had to inject me with an AED (it's late and i can strangely not remember the name of it) that gave me a horrible allergic reaction that caused me to have GOLF BALL SIZED bumps all over my face and body. Anyways, all this confirmed me that yep...im stuck with epilepsy and my case is pretty serious.

At the hospital another neuro tried to make me take keppra along with the lamictal, because lamictal wasn't cutting it at all anymore because of my (and my neuro's) stupidity. I was refusing because of all the negative feedback everywhere on the net. I finally gave in and...it's a magical pill, really.

Yes Keppra makes you a little sleepy and disconnected. But I'm proud to say that I have not had one single seizure since I got out of the hospital 6 months ago. yay!


Back to my question.... (I was just rambling on and on, as usual. My epilepsy is so annoying to me I always need to vent !!) >.>

Now I still have withdrawal feelings, and theyre very strong! My body starts feeling very weighty, and I can get slightly shaky when trying to accomplish tasks that require physical precision. BUT the difference is the Keppra is so wonderful that I don't even remotely feel like a seizure could be coming (some of you might, like me, be able to detect: oh yea i know I'm in a state right now that a seizure could be coming). Well I don't have that state anymore... ever!

So why am I getting withdrawals? It's annoying!! I'd like to know that I'm not the only one feeling those... ?

Thanks for reading all this..

Matt-

 

[Cint]

Now I still have withdrawal feelings, and theyre very strong! My body starts feeling very weighty, and I can get slightly shaky when trying to accomplish tasks that require physical precision.

So why am I getting withdrawals? It's annoying!! I'd like to know that I'm not the only one feeling those... ?

Those withdrawal feelings you describe are more than likely a side effect of the Keppra. I've take 3000 mgs. of that drug for over 12 years now and although I don't experience "withdrawal" feelings, I do at times get very anxious and feel like I'm walking on pins and needles. Those are side effects of Keppra. So is shakiness. Talk to your neuro about it.

Check out this website:
http://www.drugs.com/sfx/keppra-side-effects.html

 

[keaze]

Hi Cint.

Thanks for replying. I was having withdrawal issues back when I was exclusively on lamotrigine. But since I added Keppra, it has it's own withdrawal too, which is a little different and now both "kinds" of withdrawals are stacked on top of each other.

Do you take Keppra alone? It's supposed to be a support medication to be taken along with something else. However there -are- a few people that take only Keppra and it's working for them.

I've been slowly diminishing the lamotrigine. I started on 325/325 along with the 500/500 Keppra but am now at 225/200 and still 500/500 Keppra. My body feels a lot lighter and I have more freedom of movement and I think more clearly than back when I was on the full dosage of lamotrigine and my seizures are still perfectly controlled.

I would love to know that the Keppra alone is working for you. It's clearly blocking something that the lamotrigine isn't, working on another part of the brain. I could maybe eliminate the lamotrigine completely and that would be a huge relief. I need to get some pressure off my brain. I will talk to my neurologist about it.

Since you have years of experience with the Keppra, can I ask you: are you taking it alone? Are you perfectly controlled? What kind of seizures do you have and do you know which lobe?

Thanks.

Matt-

 

[Cint]

Since you have years of experience with the Keppra, can I ask you: are you taking it alone? Are you perfectly controlled? What kind of seizures do you have and do you know which lobe?

Hey Matt,

I have Temporal Lobe Epilepsy and have had it for over 30 years. I've suffered from CP's and TC's, stemming from the left temporal lobe deep in the hippocampus. I also take Topamax-200 mgs. and a low dose of Potiga, another new medication.

No, my seizures aren't perfectly controlled. I had a left temporal lobectomy 20 years ago which only made my seizures worse. Before surgery, I had taken Dilantin, Tegretol, and Phenobarbitol and they didn't help. After surgery we tried many more meds: Felbatol, Lamictal, Neurontin, Sabril when it was in the testing stage, Trileptal and now Topomax + Keppra & Potiga. I also had my first VNS surgery back in 1998 and that is what has worked best for me. I had my 3rd VNS surgery this past April and so far, no seizures.
I am one with difficult to control epilepsy-refractory epilepsy.

 

[Eli]

I can usually "feel" it when it's time to take my Keppra. I can definitely tell if I'm a couple hours late taking my dose. I've been on Keppra 3 years now and we experimented with different Keppra dosages and with other meds. I found I do better taking it every 6 hours.

 

[N Sperlo]

Never had withdrawl from anything. Even had some pretty serious drugs and stopped cold turkey and would have never known otherwise. I don't get it, but why complain?

 

[C0urt]

people on the street would pay for half of the side effects we get.

 

[masterjen]

keaze - I've occasionally had what you might be calling "withdrawal" toward the time before my next dose, but could it be more that your blood level of the medication is dropping and you are feeling some pre-seizure type sensations, as opposed to withdrawal?

 

[C0urt]

usually if i miss my meds for abut 45 minutes to an hour i start to feel funny, disgraphia or dislogia, or i may be prone to a breakthrough seizure if i am active.

 

[Crash]

If i sleep past my med time in the morning or am late in the evening,i get a sore head.Not in the conventional type off sore head.Just a weird feeling,that reminds me iv,e missed my medication.It,s a strange feeling that's hard to describe but certainly (i think is a withdrawal feeling).But goes away as soon as i take my medication.

 

[JaneC]

My daughter takes 75mg lamotrigine in the morning but only 50mg at night. If she waits a full 12 hours to take her morning dose she'll start to have absences.

 

[Blonde Angel]

Sorry..I know this is off topic but can one get an increase in Seizure activity if the dosage is altered eg ..increased??

Also, as with most things you do get a level of tolerance to something, can a different med cause more seizure activity?

 

[Blonde Angel]

Ahem....

This comment was made way back in 2014 why popping up today??

 

[Nakamova]

...probably because someone responded to the poll. That bumps the thread the same way a new comment does.