Levetirecetam ER Withrawal

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Hi all, Just wondering if anyone has been through Levetirecetam ER withdrawal. I was taking 1500 mgs a day & now I have weaned down to 750 mgs a day. I am experiencing both sleep maintence insomnia & a burning sensation in my stomach every morning about 3am. Just wanted to contact someone who has been it, Sturg
 

Debbie53

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Levetiracetam

Hi all, Just wondering if anyone has been through Levetirecetam ER withdrawal. I was taking 1500 mgs a day & now I have weaned down to 750 mgs a day. I am experiencing both sleep maintence insomnia & a burning sensation in my stomach every morning about 3am. Just wanted to contact someone who has been it, Sturg
Hi John,
I have weaned myself of it with the help of my GP of course. I was taking levetiracetam from March 2016 but I was having problems with insomnia - I couldn't get to sleep - and depression. When I first consulted my GP I burst into tears which I did not have any idea that I would.

You will probably understand sleep problems. I was only taking 1000mg but it didn't work. During the weekend when my GP was trying to get hold of a neurologist (I am now consulting a different neurologist) I had to keep taking levetiracetam of course but during that weekend I know I had a seizure. It did not get to the stage of a big one but I or my body was trying to seize but just managed to be an absolutely awful big faint. I felt sick which is the warning. My mother thought it was the menopause but I know that it wasn't. The only person who knows what is happening to them is the person who has the condition Epilepsy.

I had to wean off this medication 25mg every two weeks. It took me about 8 or 9 weeks for levetiracetam to leave my body. However it wasn't plain sailing for me. The final 2 weeks were hell. During the night which was the worst time I had really awful "wizzing about" of strange things all over my body and scary things happening to my coccyx (bone in your bum - have I spelt it right?). When I got up in the morning my gums had terrible pains which slowly decreased during the day but started again the next morning. My mother told me that I was clenching my teeth during the night, hence the gum pain. Awful aching started which sounds really small but let me tell you it was horrible. As I was weaning off levetiracetam and starting zonisamide I have not idea which drug was the culprit but I think it was a mixture as I have been told that I could be sensitive. Everyone reacts differently to every drug so don't worry.

So I started Zonisamide 100mg twice daily. I am not going to go into details of Zonisamide as it was a horrible drug and I had to come off that one - got no help from the medical profession with coming off Zonisamide.

I wonder if the "burning sensation" is acid. I usually get up out of bed and take some ant-acid liquid and sit on the sofa - in a upright position - as that is a good way of letting the ant-acid liquid go down into the stomach and stay down. I watch the TV for awhile (half hour to 1 hour) or read a book/magazine. Perhaps you could eat a slice of dry bread. Ask your GP about this burning feeling he will probably be able to tell you if it is ant-acid I could be wrong.

Have you been to your GP about your insomnia and sleep maintenance. A GP that you can trust! My GP took me off it straightaway because of these sleep problems and depression. I said to him that the body has a clock and when it is dark the body knows that it is time to go to sleep. Levetiracetam has been know to cause agitation - 1 in 200. A neurologist told me so. It is written in the Patient Information Leaflet with the pills. I had problems so a different medication was tried. Speak to your GP and tell him if your sleep problems are stopping you from a good quality of life and you are not able to sleep. I have to tell you that I trust my GP more than the neurologist that I was consulting at that time of my problems.

When did your start levetiracetam. I started taking it March 2016 and my problems started 22 July 2016. My GP knew it was levetiracetam. So even if your problems started many months after starting it your GP or/and your neurologist should still take into consideration that levetiracetam could be the culprit.

I hope you get help from your GP. Good luck and my best wishes. Could you give me an email back with what happens. Through this website of course. I would like to see know how you get on.

Debbie
 
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Thank you so much for your reply Debbie. I have been on this Levetirecetam over 10 years. The maintenance insomnia has forced me to stop my weaning process to get off this AED. I do know that it directly related to taking this lev xr pill because 2 nights ago when I went back on my full dosage 1500 mg each night at bedtime I slept thru the night with no problems. I also have just found out that Activis no longer supplies this pill. I am looking for a different manufacturer, besides Lupin, which I can order from. I am so happy that you are off this medication. Please keep in contact, thx Sturg
 

Debbie53

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Thank you so much for your reply Debbie. I have been on this Levetirecetam over 10 years. The maintenance insomnia has forced me to stop my weaning process to get off this AED. I do know that it directly related to taking this lev xr pill because 2 nights ago when I went back on my full dosage 1500 mg each night at bedtime I slept thru the night with no problems. I also have just found out that Activis no longer supplies this pill. I am looking for a different manufacturer, besides Lupin, which I can order from. I am so happy that you are off this medication. Please keep in contact, thx Sturg
Hi John, I will keep in touch. Are you in the UK or USA. I used Keppra's version of levetiracetam. I have heard a lot of people had problems with withdrawal from levetiracetam. I had been trawling the internet when I was having awful problems coming off it. Now I have a lovely GP that I would trust my life with him as he is the only medical practitioner who knows that I would have a bad time with it. There you go, John, proof from a medical practitioner. He told me that he had done some research on the zonisamide that I went onto next. My GP goes that extra mile for his patients. He really cares.

I will go for now as I am watching a film. Bye for now. Good luck.

Debbie
 

Porkette

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Hi John,

It took me about 1 week to go off the Keppra but I was only on it for a month the drug triggered to many seizures and made me very moody. I then started vimpat and that worked great for my absence and complex partial seizures along with cbd oil (medical marijuana). Here's wishing you only the best and May God Bless You!

Sue
 
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