Drug withdrawal

Porkette

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Hi Itr786,

Keppra gave me a wicked temper and I was on it for only 1 month the drug also increased my seizures. This could
be the reason why you are having anger problems and it's going to take some time for the keppra to be completely
cleaned out of your system. Also if you have frontal lobe seizures or right temporal lobe seizures that can cause a person
to be very emotional and sometimes have problems with their temper. I had that problem in my teens and it wasn't until
I went on Depakote that all of that stopped. I wish you the best of luck and May God Bless You

Sue
 

Nakamova

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I recommend you wait before doing the next step in the taper -- it can help to give your brain a chance to adjust at each level. Another thing to consider is taking a B6 supplement -- it’s known to help with Keppra's mood-related side effects. Some people find that B6 interferes with their sleep, so if you try it probably best to take it earlier in the day.

Good luck! It's no fun having a medication mess with your moods.
 

Itr786

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I'm doing well all things considered. I'm not far off 4 years since brain surgery, and how fast it's gone by. No seizures since, still on meds.

I've suffered from severe anxiety I've finally gotten to grips with by taking antidepressants and antipsychotic drugs. Hopefully things continue as they have been.
 

XxBlaqkxX

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I know this post is quite a few months old, you can disregard this message if you like. I have weaned off of Keppra after an extended period of time and my experience is below:

When I was a teen, I was on Dilantin for a time, it didn't work and I hadn't been taking it long before I was taken off of it and don't remember any withdrawals. I was put on Lamotrigine and was on that for about 4-5 years and then it seemed to lose effectiveness so I was placed on Levetiracetam, the Keppra genric, 500mg twice a day.

Keppra worked well, but I absolutely hate the stuff. I took it for 10 years, no issues with seizures at all. Neurologists wanted me on it since it worked and my levels were far below the therapeutic dose. Some neurologists had asked me if I was ever interested trying to come off of the stuff. After a couple years of taking Keppra, I was hesitant about it as I was afraid my seizures would just return, but after 10 years - I was ready. I was done with all the side effects I believe the stuff caused me.

Anyway, I had a neurologist that in 2018 or 2019 said she would be willing to let me try to go off of Keppra. I weaned off of it a little slower than she mentioned I should. She wanted me to take it down 250mg at a time and that made me a bit nervous because it was so built up in my body. So, when I would cut it up, I would only take off about 125mg off of the capsule at a time. I took 3/4 of a pill in the morning and evening for one month and then I started cutting them in half for both doses for another 3 weeks. Then, I cut off 3/4 of the pill, leaving about 125mg left for both the morning and the afternoon for another 3 weeks. Then, I stopped taking the morning pill since there were times I'd skip the morning dose and not even realize it because I wouldn't feel any different - did that for about 3 more weeks. The final and most nerve racking step, I stopped the night dose, but I was taking 125mg only at night every other night and then I shortened that by one day each week that followed.

When weaning off of it, when I was taking about 1/2 off of a 500mg tablet morning and night, my joints ached so terribly. I had so much pain in my body, I could barely move. When I was sitting I was hurting and moving felt unbearable. That lasted for a few days and got better as the week went on. I had more energy, that's for sure - Keppra makes me pretty tired and it was nice to have an energy boost again. After a few weeks, the aches, pains, and nausea were gone.

While I was weaning off of the stuff, I was making sure to continue taking my Vitamin B-Complex w/Folate, Fermented Cod Liver/Butter Oil gel, and doing my best to stay away from high amounts of sugar and artificial sweeteners (as usual). I also took chlorella (must have a cracked cell wall to be effective) and that helped a lot. Months later, I started chewing up and swallowing a clove of garlic a day and that really helped me out! I still do it. Definitely had to be downing water to clear the stuff out of my body.

I was off of it for about a month before my next neurologist appointment. Their pharmacist that came in asking about my medication gave me weird looks when I said the neurologist gave me permission to come off of my medication. She was like, "Uh...okay...no issues...?" And I said, "None." and she did her paperwork and left. Two other interns came in and they were like looking me over...like checking my eyes, reflexes, teeth, and just talking to me and though the whole thing was a fluke or something. The neurologist marked me as, "No follow up needed."

I was medication free for about 15 months. I felt a whole lot better in the long run as far as more energy, less sugar cravings, and less achy joints and bones. Unfortunately, last month I came down with COVID-19. I think I had it for a few days before I had a seizure because my sense of smell was gone and I was super tired. I didn't feel good and I stayed home. I had a seizure one evening and hit my chin on the kitchen floor. That was about a month ago now and my chin is still sore, my jaws are a lot better, but hurt terribly if any pressure is applied. I'm still on a soft food diet. It stinks, but at least it's getting better. That night, my husband said I wouldn't respond to him at all so he called my parents and I woke up to their voices. I guess it makes sense because I've never had a seizure around my husband before, not in our 10 years of marriage. When I was growing up, my parents were doing whatever they could to help me out and take me to appointments and would sit by me while I had seizures and such.


The next day, I had status epilepticus, 3 more seizures back-to-back and they didn't seem to be stopping. My parents were over again early that morning to see how I was doing and my dad ended up calling the ambulance since I had seizures while they were there that didn't seem to be stopping.

I hardly remember anything about the hospital. There are tiny things here and there that I remember, but my husband and parents were really upset that they only kept me for a few hours and discharged me before I was fully coherent. (I remember getting home and the look on my mom's face was like so worried and she's like, "They let her come home like that?!" My mom could always tell just my looking at my eyes if I wasn't all there, they just looked 'glazed over' she'd always say. I was so out of it and confused I thought I had done something wrong). They're just rushing people in and out of the ER right now. I am so glad that my husband was there at discharge so he could help me home...if I were all my by myself, I could've wandered outside and got hit by a car or something, you know? It's quite startling to thank about. They tried to keep my husband out, but thankfully he knew hospital security so they didn't bother trying to stop him after a point.

They sent me home with antibiotics, steroids, and 750mg Keppra tablets. I'd never taken a dose that large, but I suppose considering the circumstances, that's what it was. I took 750mg once a day or 2-3 days just to be sure. I still had some 500mg tablets that were still good so I switched to those. Took those once a day for a few more days. I've only been taking 250mg once a day for the past week or so.

I haven't gotten the chance to get into another neurologist yet, but the one I was seeing when I weaned off the medication has since left that practice so I'll probably have to see someone else, but I kind of know what they'll say. They'll just tell me to keep taking the Keppra and my sanity is just wearing down on this stuff...it doesn't make me feel awesome and I never feel my best. I feel like I can't reach my full potential while on this stuff...everything just feels so difficult.

I'm looking into getting some CBD oil because at this point, I am willing to try almost anything but AED's. The fact I went for 15 months seizure free was great...then I've been hearing COVID can provoke seizures from online medical articles and the ER doctor thought it was aggravating my seizure threshold. I'm afraid I'm back to square one, though. Things in life just aren't going right.

I wish you the best on your personal journey!
 

HumbleDeer

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I'm looking into getting some CBD oil because at this point, I am willing to try almost anything but AED's. The fact I went for 15 months seizure free was great...then I've been hearing COVID can provoke seizures from online medical articles and the ER doctor thought it was aggravating my seizure threshold. I'm afraid I'm back to square one, though. Things in life just aren't going right.

I wish you the best on your personal journey!
I'm going to be making my own oil. I'll be purposely overcooking it to convert THC to CBN (broken down THC). It's a stronger anticonvulsant but also a stronger sedative. It's hard to get anticonsulsant action without cognitive impairment. If anything, I'd prefer light sedation over feeling stupid (keppra)
 

XxBlaqkxX

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I'm going to be making my own oil. I'll be purposely overcooking it to convert THC to CBN (broken down THC). It's a stronger anticonvulsant but also a stronger sedative. It's hard to get anticonsulsant action without cognitive impairment. If anything, I'd prefer light sedation over feeling stupid (keppra)
Kudos to you for doing it yourself!

I have looked into making it myself and I know it can be done, but the whole process just seems so daunting. I'm sitting here thinking how I could even afford this each month...CBD oil is not cheap. In my state, they are in the process of legalizing marijuana for recreational use so it wouldn't be hard to get a hold of the stuff should I need to make it myself. Although, I've read the strain of marijuana is important, too, so I'd have to find what would be needed. The carrier oil wouldn't be an issue at all, though.

Yes, that's the one thing that I'm worrying a bit about. I hate feeling tired again, but I agree - Keppra doing more than just tired, it makes it hard to do a lot of things in life among the other host of side effects. I'd rather natural any time if I could. I'm worried about what 10 years of Keppra has done to my body already.
 

HumbleDeer

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Kudos to you for doing it yourself!

I have looked into making it myself and I know it can be done, but the whole process just seems so daunting. I'm sitting here thinking how I could even afford this each month...CBD oil is not cheap. In my state, they are in the process of legalizing marijuana for recreational use so it wouldn't be hard to get a hold of the stuff should I need to make it myself. Although, I've read the strain of marijuana is important, too, so I'd have to find what would be needed. The carrier oil wouldn't be an issue at all, though.

Yes, that's the one thing that I'm worrying a bit about. I hate feeling tired again, but I agree - Keppra doing more than just tired, it makes it hard to do a lot of things in life among the other host of side effects. I'd rather natural any time if I could. I'm worried about what 10 years of Keppra has done to my body already.
Here are some tips:
Don't panic
Get a thermometer
Use scraps from trimming. I get them for free because otherwise they go in compost.

I use Cannabis oil as needed because I'm not supposed to be treating my seizures.

What is meant by strains matter is that thc is useless for epilepsy generally. Only when it decomposes is it useful. People that think thc helps their epilepsy are not using thc. Lots of oil guides will tell you to be careful with heating. They tell you overheating will destroy the thc. But that's exactly what we want to do. Decompose the thc into CBN!
 

XxBlaqkxX

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Here are some tips:
Don't panic
Get a thermometer
Use scraps from trimming. I get them for free because otherwise they go in compost.

I use Cannabis oil as needed because I'm not supposed to be treating my seizures.

What is meant by strains matter is that thc is useless for epilepsy generally. Only when it decomposes is it useful. People that think thc helps their epilepsy are not using thc. Lots of oil guides will tell you to be careful with heating. They tell you overheating will destroy the thc. But that's exactly what we want to do. Decompose the thc into CBN!
Haha, sounds like good tips :)

Yes, I've been concentrated on finding either a full spectrum that's low in THC or an isolate.

I've heard similar information - that it's definitely the CBD and not the THC that's the beneficial part for health conditions. Although, I'm no expert.
 

Nakamova

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Yes, since THC is the psychoactive component it's not going to do you as much good (and may do harm) compared to the CBD. CBD is an analog of the endocannabinoids (the cannabinoids naturally produced by out bodies) that play a calming role for the brain, so that's the route to go if at all possible.

I hope that CBD oil works for you, but in case it doesn't, I've had good luck with Lamictal -- long-term seizure control (12 years) and no obvious side effects after the first few months.

Hopefully they will make Epidiolex available for more varieties of epilepsy. (Epidiolex is the standardized oral solution of pure CBD derived from plants.).
 

XxBlaqkxX

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Yes, since THC is the psychoactive component it's not going to do you as much good (and may do harm) compared to the CBD. CBD is an analog of the endocannabinoids (the cannabinoids naturally produced by out bodies) that play a calming role for the brain, so that's the route to go if at all possible.

I hope that CBD oil works for you, but in case it doesn't, I've had good luck with Lamictal -- long-term seizure control (12 years) and no obvious side effects after the first few months.

Hopefully they will make Epidiolex available for more varieties of epilepsy. (Epidiolex is the standardized oral solution of pure CBD derived from plants.).
Good to know. I knew I didn't want the psychoactive part of the plant. Can't afford those kind of effects.

I am glad that Lamictal worked for you so there is something there in case. I took Lamictal for about 4 years, but I was having way too many break through seizures. Ended up with a back up benzodiazepine, which was miserable to take, but worked. I ended up on Keppra. It already worked for 10 years so it is what they threw me back on and I so want off of it...

I have heard of Epidiolex, but don't know a whole lot about it. Just heard about it having more severe side effects than CBD or that it was probably synthetic. I haven't read too much into it, though.
 

Porkette

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The covid-19 can cause seizures as you mentioned my cousin is a Dr. and has filled me in about this. In regards to the cbd
my Epileptoligist told me to start using it a few yrs. ago after they found out I was drug resistant and since then I've had the lowest
amount of seizures, just this past yr. I've had only 59 seizures and that my sound like a lot but I used to have over 100 seizures a
year before the cbd. Another thing I did that you may want to try is apple cider vinegar with mother in it. I started taking 2 Tablespoons
in the morning to lose weight but it also reduced my seizures thanks to the protein in the vinegar. You may want to give it a try to see
how it works. I wish you the best of luck and May God Bless You!

Sue
 

XxBlaqkxX

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The covid-19 can cause seizures as you mentioned my cousin is a Dr. and has filled me in about this. In regards to the cbd
my Epileptoligist told me to start using it a few yrs. ago after they found out I was drug resistant and since then I've had the lowest
amount of seizures, just this past yr. I've had only 59 seizures and that my sound like a lot but I used to have over 100 seizures a
year before the cbd. Another thing I did that you may want to try is apple cider vinegar with mother in it. I started taking 2 Tablespoons
in the morning to lose weight but it also reduced my seizures thanks to the protein in the vinegar. You may want to give it a try to see
how it works. I wish you the best of luck and May God Bless You!

Sue
It is still so odd how COVID can cause seizures to happen/get worse. I never knew about it before it happened to me. I had always heard of the virus making diabetes or other autoimmune diseases worse, but never seizure disorders/epilepsy. Now I know. So unfortunate, though.

I am glad that you are having a lot less seizures, they are nearly halved and that is wonderful! I hope you keep seeing even more progress!!!

We always have Bragg's raw ACV on hand! I do remember taking a tsp of it in a cup of water from time to time. I haven't done it in a while, but probably should. I wouldn't think it would help seizures, but that is good to know! Thanks!

God bless you as well!
 

Nakamova

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It is still so odd how COVID can cause seizures to happen/get worse.
Anything that stresses the body can potentially be a seizure trigger, and an intense illness brings a lot of stressors: Fatigue, changes in oxygenation, fever, and dehydration are all known seizure triggers. People with sleep apnea sometimes have co-occurring nocturnal epilepsy because of the associated oxygen deprivation.
 

XxBlaqkxX

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Anything that stresses the body can potentially be a seizure trigger, and an intense illness brings a lot of stressors: Fatigue, changes in oxygenation, fever, and dehydration are all known seizure triggers. People with sleep apnea sometimes have co-occurring nocturnal epilepsy because of the associated oxygen deprivation.
Definitely true. I suppose what I mean to say is I've never had Status Epilepticus before and it was definitely unlike any other seizures I have had before. Definitely worse than anything I've experienced.
 

Itr786

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Does anyone suffer from insomnia whilst withdrawing from AED (keppra)?
It's always causes me to be tired all day, rarely any issues with sleep ,but whilst I'm withdrawing I'm having increasing difficulty sleeping, or when I doze off, I'll wake up an hour later WIDE awake. It'll be like that all night. It's getting torturous
 
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