Clonazepam (Klonopin) Withdrawal Story

[kevinw]

Now a I know a lot of people don't get prescribed this for PLS. I was early on when I mentioned that sleeping was a problem with soreness in my legs and my mind racing trying to get to sleep. This a story about my past week attempting to taper off of Klonopin.

I was taking three per day, well about six weeks ago I was on my last bottle with no refills, so I decided this was going to be my last and I started tapering them off. I went down to two per day for three weeks, then one per day for three weeks, finally running out mid to end of last week.

Well I was fine until mid-morning Tuesday when I stood up and tried walking. I was back to "extreme" stiffness and had a couple close calls in the house. Wednesday I really knew something was wrong. In addition to the extreme change in my legs, I noticed that my coffee didn't taste right in the morning (thought it was a bad batch), laid in the recliner all day with my head in fog.

By the time my wife got home and we had dinner I realized I lost all sense of taste, which really confused me. Finally that night I got up and took three steps and couldn't move, my wife broke out the walker which I never needed around the house.

Thursday was much of the same, no taste, couldn't walk, head in the clouds, and felt "clammy" and hot. But I did email my Neuro late about the Klonopin being the only thing I changed.

Only slept two hours Thursday night and had a funeral for a family member to attend on Friday. Got showered (barely) Friday morning and dressed. But head was lost and I was sweating.

My wife asked if I was okay and I couldn't answer her. She decided to take me to a Urgent Care center and I thought for sure I was going to the hospital. The doctor there agreed it could be the medication, but wanted me to check with the Neuro about the other symptoms because I only mentioned the walking in my email.

Well, my wife spoke to her and she confirmed the script was called in and to pick it up ASAP and try it. I took my first 1mg pill at 11:00 and by 12:30 I could walk without my walker, could taste my lunch, felt a normal temperature, and my head was back in place. And last night I got a solid nine hours sleep.

Now I know this story is not for everybody and I'm sorry it went on so long. But I just wanted to get across my experience of trying to play doctor with my medication. I started thinking that I was getting some kind of the worst flu I every had, never really thinking that one pill would do that.

 

[Atsugi]

Yep, ALWAYS coordinate with your doctor. Meds and their withdrawals do funny, sometimes unfunny things.

My wife was a doctor. Told me a lot of "stupid patient" stories. They all started with: "So this guy didn't do what I told him to do..." and one of the stories ended up, "and now she's dead."

My own experience with Klonopin was just the opposite. My neuro said I would need to wean myself off Klonopin and start ramping up a new med. OK. So of course I quit cold turkey and went back to the doctor to get the new med.

"Really!?" he said when I told him I just quit. "What were your withdrawal reactions?"
I said, "Ummm. Was I supposed to have a reaction?"
He said, "Most people have a hard time weaning off of Klonopin."
I said, "Sorry. I didn't know. Maybe next time."

But that's just me. n=1.

 

[kevinw]

Yeah, I guess I would cauterize under a "stupid patient story". I had tapered off of Zanaflex with no problems (I do take 80mg/day of Baclofen), so I thought that was overkill. Then I moved onto trying to taper off of the Klonopin, since it was basically prescribed for anxiety and to help me sleep at night. And I thought my six week program would really work. Well, my clinical trail failed miserably. And not within a day, it took about six days I guess to all be out of my system, then started the detoxing on Tuesday. Well, lessoned learned. I never, never, ever want to go through that again!!! Oh....and a final note: I guess I should have told my wife that I was eliminating it. Because when I mention it on Thursday (when I was really in rough shape) I thought she was going to kill.....another lesson learned that I will never hear the end of.

 

[Atsugi]

"I guess I should have told my wife..."

As soon as I read that, I burst out laughing. That lesson--keep your wife informed--is so, so difficult for us men to learn. I know exactly what you mean.

Even today, my kids found out I went to the ER and didn't tell them. They were all over me. "No big deal." I said. That made it even worse. But now I know better.

The people who love us are more concerned about us than we are.

 

[ShiftKicker]

Thanks for the tale, Kevin. Yes, always tell your doctor first. And definitely tell your significant other. They're the ones who have to collect and pile up all the pieces and pat it back into shape when we're done messing around.

Were you wanting to get rid of the Klonopin for a particular reason? Or are you like me where you just want to see if you "actually" needed it (and really do, but need to find out the hard way).

Fiona

 

[kevinw]

Atsugi....Lol, exactly...I thought it was no big deal to try messing with my medication. After all it worked with the Zanaflex, but by Thursday I could no longer hide it or pretend that everything was ok when she was home from work. Now that I'm back on track I jokingly keep hearing "idiot" and that she now has the detox center phone number on speed dial.

ShiftKicker....You're welcome for the story, it was meant to inform anyone (not just Klonopin users) that if they mess with their dosages things can go bad real quick, and it's not fun. Also, I guess to inform others is also a good idea I found out to let others know. Regarding the "why"...I am going to say it is your second reason, "do I really need this". At one point I was taking Bacofen, Zanaflex, Klonopin, Lipitor, and some blood pressure medication. In my "un-professional" opinion I was on too many medications. So I came up with my plan to work myself off of the Zanaflex, which went great and still don't notice any difference. Then decided to move onto "do I really need Klonopin", and put my plan into action. Which worked great for about 6 1/2 weeks, 6 weeks of tapering off them then about 3-4 days of feeling okay. I guess it was that 5th day that my body decided to let me know that I was an idiot for thinking I was a doctor or pharmacist and that's when my well laid out plan fell apart. I honestly, truly, 100% thought I was going to the hospital yesterday morning not knowing what was going on and I felt like I was going to pass out.

Edited: Also, I was sick of always getting prescription refilled and filling my weekly tray of medications.

 

[Atsugi]

"In my "un-professional" opinion I was on too many medications. So I came up with my plan to work myself off..."
I know exactly what you mean.

Years ago, I swore I rarely needed an aspirin. Tough guy. Perfect health. One time, in a group standing in our underwear (military medicine) the doctor in the middle with the flashlight looked at me and said "slightly flat footed." I felt so insulted I nearly leaped over to punch him!

Now my "new normal" life has 15 meds in a tray, diet restrictions, finger pokes, and a calendar constantly full of tests, labs, and doctor visits.

 

[Duker52]

I take 1/2 Clonazepam pill before bed. It was prescribed to help with my laryngeal spasms. Are other PALS taking this medication for ALS symptoms? Just curious.

Bill

 

[kevinw]

I take 1/2 Clonazepam pill before bed. It was prescribed to help with my laryngeal spasms. Are other PALS taking this medication for ALS symptoms? Just curious.

Bill

I was taking 1mg, 3 times a day (3mg's/day). I didn't notice anything about six weeks ago when I went to 2 per day. Then I went to 1 per day for three weeks and still felt good. I would say it was the fifth day after I took my last one when things fell apart.

 

[Nuts]

I take 1/2 Clonazepam pill before bed. It was prescribed to help with my laryngeal spasms. Are other PALS taking this medication for ALS symptoms? Just curious.

Bill

My husband takes 1mg 3 times a day. I get panicked when we are down to just a day or two of pills, so we've finally gotten an extra fill just so we have some in reserve.

 

[Duker52]

I was taking 1mg, 3 times a day (3mg's/day). I didn't notice anything about six weeks ago when I went to 2 per day. Then I went to 1 per day for three weeks and still felt good. I would say it was the fifth day after I took my last one when things fell apart.

Kevin, for which symptoms are you taking it? Bill

 

[kevinw]

Kevin, for which symptoms are you taking it? Bill

It originally came about after I mentioned that I couldn't get to sleep at night. My legs were driving me crazy at night and it kept my mind racing. I think the intent was to not let me get worked up at night. But once I stopped it along with many other things, I couldn't sleep because my legs were "burning". The best way to describe it was it felt like my thighs had the worst sunburn ever.