Seizures and Involuntary Movements

Hi everyone.

 

I’ve been on and off lorazepam for 22 years. But have taken them almost daily for the past 11 years. I was prescribed up to 2mg “as needed” so one day I might take 2mg to sleep, the next day skip a dose, the next day take 1mg. So, a pretty variable schedule but probably took them at least 4 out of 7 days a week. Not one doctor or nurse practitioner prescribing these meds to me ever warned me about the dangers!

 

Last Monday was my last lorazepam dose. I didn’t realize I needed to taper off, so started having some pretty awful withdrawal symptoms. If I were able to do it again I would taper, but now it’s day 10 benzo-free, and I don’t want to go backwards.

 

I have 2 questions. I’m terrified of having a seizure! Do people think this would’ve happened by now, if it was going to?

 

I am also experiencing jerking movements in my head, neck, shoulders, and arms, making it almost impossible to sleep. If anyone else has experienced this, how long did it take for these to at least improve a bit? I know everyone’s experience will be different but I’d love to hear from you.

 

We will get through this!!!!!

I was told by a PhD Neuro-psychiatrist seizures happen within in the 1st 5-7 days of stopping. However, if you feel a mini-one, not an Anxiety within you saying so-you’ll know: don’t pass go: call 911!

Thanks so much for your reply! Yeah I really hope I’m in the clear for a seizure. Some people say 48-72 hrs after, some say up to a week after, some say all the way up to 2 weeks after.

 

Did you ever have the involuntary movements? These are what are killing me and making it so so hard to sleep. They seem to only happen when I’m laying down or not moving about. But then they are out of control; severe jerking movements mostly in my head, and every few seconds I’m really, really hoping these will at least improve a bit soon.

I had this real bad back in the first few months of my ct. It was the same as you describe. As soon as I was about to drift off my body would jerk. Sometimes it was my whole body. Sometimes it was just my head, or my arm, or my leg. Sometimes it was just my jaw would snap shut. I am 13 months out now and it has decreased considerably. I still get it sometimes but it is not as often. Of course I still have real bad insomnia but I have been taking seroquel at night and it has been helping. I just hope that I am not causing more problems by taking another drug. I had to choose between going insane from lack of sleep or taking a drug and hoping that it doesnt cause major problems down the road. I decided that I needed relief now and I will worry about the future later. I also think that the seroquel helped with the jerking.

Thanks Xray for your response. It’s encouraging to hear that the movements have subsided a bit for you! I totally hear you about the insomnia-this was the primary reason I was taking the lorazapem! Don’t feel bad for doing what you need to make yourself more comfortable. Hopefully the doctor you’re working with knows what they’re doing. Sometimes we just have to get through to the next day or the next moment. I’m glad you are sleeping a bit better. Hang in there. I do believe we will get through this. I’m trying to keep a positive attitude, and “go with the flow” as much as possible with these crazy symptoms. I keep repeating positive mantras in my head which I know to be true. This seems to help. It’s also helping to try to focus on other people instead of myself (ie helping my daughters, helping friends). Even if it’s something small it makes me feel good about myself and gets me out of my own head a bit. Distraction techniques have worked pretty well for me too. I hope you continue to feel better and get more sleep!