Klonopin for CIDP

[COLOR=”Purple”]Hi Jim. I take klonopin for anxiety and have for quite a long time. It works well for me. The only side effect I experience is drowsiness but I only take it at night. I just found out my mom is taking it for “restless leg syndrome”, which kind of surprised me. I’m not sure why your doctor would prescribe it for CIPD in general. If there is specific symptoms he prescribed Klonopin for I’m sure there are other drugs you would be more comfortable with. I would discuss it with your doctor. Take care….Vicki[/COLOR]

Jim,
My husband takes it for sleep waking, it is actually an antiseizure medicine that they have found helps various other things, just like neurotin.
If it helps then it is good for you. What were the side effects you were concerned about , my husband has been taking for about 14 years.
Cindy

I take klonipin for anxiety disorder, have taken it since 1996. But after I got CIDP in 2002 I did notice it was listed right after Neurontin as one of the anti-seizure meds that is given for nerve pain. It is used as a sleep aid as well, so will make you drowsy if you are not used to it. What are you taking it for? If it is for nerve pain, then neurontin (gabapentin) works much better.

I take it right at bedtime, but should probably take it a half hour before. I don’t know wy it would cause heart palpitations, but would definitely talk this side effect over with your PCP. I also take it in the morning & again at 3:00, but remember I take it for anxiety disorder, not for my CIDP. So I am taking 3 mg a day total, which is quite a large dosage. But like I said, I have been on that dosage for 10 years now & not had to up it.

[COLOR=”Purple”]Hi Jim, I take atenolol for heart palpitations. I have had no problems with the klonopin. I understand your concern, being a chronic A-Fibber. What meds do you take and is your rate controlled well? Low dose Klonopin 1mg or less is usually tolerated by most without major side effects. I take mine an hour before I’m ready to go to bed, along with my other meds, some of which also cause drowsiness. I don’t think Klonopin alone would be enough to make me sleepy. Take care Vicki [/COLOR]

It lessens the frequency and severity of my muscle spasms. I only take 1mg at night, and maybe another 1mg during a bad day. Its like most other medicines, there is a tradeoff and a price to be paid for relief.

Hi,

I have been taking 1mg of Klonopin every night at bedtime for years. It has worked for anxiety and helped me relax so I can sleep. I remember that at first it did give me some fast irregular heartbeats. I am prone to them. After awhile though, they subsided and I kept taking the Klonopin.

I was diagnosed with CIDP just one year ago. Up until then, everyone thought it was Fibromyalgia. Then I started getting worse. Now, I am experiencing short term memory loss. It is so frustrating. My Psychiatrist told me that Klonopin can cause this side effect. We are in the process of reevaluating my meds and IVIG.

Do any of you experience memory loss and if so what do you do to help with the utter frustration? I also have a lack of motivation and have a hard time concentrating. Any advice you can give me would really help. 😉

My Rhemetologist told me that he wants to do a nerve biospsy to nail down the CIDP diagnosis. I am scared and confused. Is this really necessary? Is it hard to recover from? Is it common to have this done?

I have been hit with so many things this week that I am not sure what to do. Thanks for your undersanding.

Sandila 🙂

Since I was on klonipin for 6 years before even coming down with CIDP & at 3 mg a day, I feel like I know quite a bit about this drug. I was a high school English & math teacher, also taught Adult Ed for 4 years right before getting CIDP & had absolutely no memory loss. This all did not start until after I had CIDP. At first I thought it was the Neurontin I was taking (originally 3600 mg a day), but then weaned myself down to 1800 mg a day within the first year. I don’t believe it is the neurontin either, as many have posted about memory loss who have no nerve pain & have never taken this drug. I think it is the CIDP, caused by the fatigue that goes along with it. The more rested I am, the better my memory is. I cannot stress how much rest is needed with having CIDP, it helps us in all areas (muscle weakness, strength, speaking coherently, memory.)

Hi Sandila,

Yes many of us have had short term memory issues. We have had threads about them before. If you do a search you should find some here, the rest were lost when our old forum went down. Anyway, I had severe short term memory issues for about a year post-CIDP. My memory is back to normal though I still have issues very rarely. We chalked my issues up to PTSD and/or Neurontin. If you are on high dose Neurontin (I was on 3600mg/day) perhaps speak to your Dr. about it.

The things that helped me most we lots of list making and note taking. I bought a day planner etc. I was horrible for awhile, I also was put on Ritalin. The Ritalin helped with my focus and energy issues and I think helped me with my memory issues in the long run. I also take Lyrica now instead of Neurontin, so the amount of medicine I take for Lyrica is alot less, 6 pills 600mg per day versus 18 pills 3600mg/day when I was on Neurontin.

I hope that helps, discuss it with your Dr.

Jerimy

PS-Welcome to the forums and to our dysfunctional family 🙂

[quote=Sandila]Hi,

I have been taking 1mg of Klonopin every night at bedtime for years. It has worked for anxiety and helped me relax so I can sleep. I remember that at first it did give me some fast irregular heartbeats. I am prone to them. After awhile though, they subsided and I kept taking the Klonopin.

I was diagnosed with CIDP just one year ago. Up until then, everyone thought it was Fibromyalgia. Then I started getting worse. Now, I am experiencing short term memory loss. It is so frustrating. My Psychiatrist told me that Klonopin can cause this side effect. We are in the process of reevaluating my meds and IVIG.

Do any of you experience memory loss and if so what do you do to help with the utter frustration? I also have a lack of motivation and have a hard time concentrating. Any advice you can give me would really help. 😉

My Rhemetologist told me that he wants to do a nerve biospsy to nail down the CIDP diagnosis. I am scared and confused. Is this really necessary? Is it hard to recover from? Is it common to have this done?

I have been hit with so many things this week that I am not sure what to do. Thanks for your undersanding.

Sandila :)[/quote]

I was taking a small dose of Klonopin at night to help with pain and with sleeping. I had big problems with short term memory during the earlier phases of my GBS recovery, although I don’t think it was related to the Klonopin.

This problem improved as recovery progressed, and I still take Klonopin. Now (2 yrs 10 mos post GBS), I find that my memory is usually fine when I concentrate, but becomes markedly worse when I’m either tired or have too many things going at one time. This holds true for other GBS residuals as well.

I used to be great at multi-tasking, but now I find I need to greatly limit the number of things I try to do at one time. Like Jeremy, I find that list making and note taking are a huge help. Also, I have told my family and friends that I am aware of the problem, and what causes it, so they won’t feel uncomfortable reminding me of things.

Hi Jerimy, Suzanne and all,

Thanks for the information on short-term memory loss.

I take loads of notes and have a to-do list that is continuous. 😀 I have never been even close to getting everything done. I try so hard to remember, but most of the time I can’t.

Names are especially difficult for me. I have to tie them into something else to stand a chance of remembering. For example, I met a woman named Alexus this weekend. I couldn’t remember her name so I decided to remember the car – Lexus. Now, I can retain her name. Crazy, huh?

I went to a bookstore today and couldn’t remember the name or author of a book that my husband would like. I could only remember that it was written by a comedian and just released in paperback. They couldn’t find it. I left frustrated.

I also have trouble staying on task. It’s hard to follow through. I have several projects going on at once. What a mess. Any ideas? I can’t read a book because I can’t remember the next day what I read. Can you read and remember?

I am so glad that I found all of you. My doctor wants to do a nerve biopsy and I am very confused about it. Have you had one? Is it common?

Thanks for everything. I wish some of this confusion would clear up! :confused:

Sandila

Hi Sandila

I just had a nerve biopsy done on Monday. I was also nervous about getting this done because a very small percentage of people get something called a neuroma afterwards, which is basically a painful tangle of nerves above the incision site. I haven’t been feeling particularly lucky these days — I’ll guess that you know the feeling! But I agreed to the procedure because my doc thought it was important enough to outweigh the risks. I do have substantial sensory issues to start with, but the foot below the cut nerve is totally numb now. I should add that the sural nerve feeds the outside of the foot, so the bottoms are still the same. The neuro sugeon said to wait 6 months to know what the final outcome might be in terms of nerve regrowth. The trickiest part of the procedure for me was walking with crutches for 2 days afterwards, lol.

I wonder if the confusion and lack of focus and concentration may actually be symptoms of anxiety or depression? This is probably something you should consider.

Best wishes,
Helen

We have fought the memory loss thing for a while, with my husband;s CIDP- very frustrated for him as his genius IQ and photographic memory is now severely challenged. He takes a list to go to staples or lowes these days.

We find the lyrica or neurontin and other meds for CIDP including klonopin are part to blame, and I agree with Pam H that general fatigue from fighting pain and CIDP in general is part to blame. Depression is part to blame. Not sleeping well at night is to blame. At 2 am now, I just got up to give Todd another klonopin to get through the night- the more he does, the more he hurts- including muscle cramps. But for risk-versus-benefit, it is an amazing drug in a small package with fewer side effects than you might think.

Sandila- the nerve biopsy is not absolutely necessary- see [url]www.cidpusa.org[/url]. BUT, having said that, Todd had one, and I”m so glad- it nailed the diagnosis and is one constant when we are checking and rechecking things, and so unsure of what works and what doesn’t etc. Healing time is fast. Get someone who knows what they are doing and does a good surgery- our neurologist did ours and was very good.

Goodspeed everyone,
Sigrid and Todd
CIDPers since 2005
partners for life since 1992

Hi guys! SO glad I found this chat about this klonopin. I went to see my Neuro yesterday and he is still like WTH w me and while sitting on the table in front of him, I proceeded to have 6 charlie horse type cramps and then it took me 20 mins just to stand afterwards.

He said he was putting me on klonopin for my muscle spasms and I said ok. He also put me on higher dose of steroids and Lyrica.

I’m concerned about the klonopin though. He has me taking Zanaflex at night and now wants to me to klonopin AND Lyrica on top of steroids? Doesn’t this seem like a bit much?

I have TWO very small kids, 3 and 5 and I want to wake up alive you know?

I have been diagnosed w CIDP and he’s called Mayo Hospital in Jacksonville, FL to see if someone better can treat me/see me. In the meantime, it’s him, but I have to say coming home from CVS, I’m nervous to take these meds. I would rather hurt and be ALIVE you know?

Mel

I have never taken klonopin myself but work in the mental health field and have worked with people who were on it.
Klonopin can increase the affect of other medications you are on. For some medications this can be a good thing–example I had a person who could take less of his medication for seizures because the klonopin boosted the effect of that particular med. In some cases depending on the medication this may not always be a good thing.

if my memory serves me right (lol) klonopin is in a class of drugs–benzodiazipines (?sp) which works by slowing down the thought process in the brain.
This is why it is so frequently used for anxiety/panic attacks. Makes sense that it would affect memory and multi tasking.
this was a good refresher—-now i should do well on my next crma recert test. 🙂

I have tapered myself off of a benzo similar to Klonopin and it was no small feat. I was taking it for sleep and noticed I just wasn’t as alert as I needed. Since my taper I have been able to read novels again and feel more mental acuity. What a pleasant surprise.

Please make sure you research the long time effects of Klonopin and see if you are willing to be on it forever. It is extremely hard to go off of.

Lori 22 is definitely correct about benzodiazipines affecting memory, cognitive functions and increasing the effects of other drugs.