Is anyone else still on clonazepam?

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Stainless
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Is anyone else still on clonazepam?

Postby Stainless » Tue Apr 11, 2017 3:00 pm

I'm just curious because I see it mentioned so seldom on the forum. I actually see it much more in relation to RLS on a benzodiazepine forum where everyone is struggling to get off.

I was on up to 3 mg. once a day for 20 years, came off it for a year using gabapentin to try the DAs. After giving up on getting any lasting relief, I have been back on 1.5 mg. clonazepam and 600 mg. gabapentin for six months and doing pretty well. Since this may be what I have to rely on for the next few decades my doctor and I are trying to keep the dosage down.

I would never recommend clonazepam for more than a few weeks if you have an alternative because getting off this benzodiazepine is very difficult. I was able to quit 4 mg. ropinirole in 1 day going back to it which surprised me. I'm just curious if anyone is in the same boat or most have moved on. Thx. Rick

Polar Bear
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Re: Is anyone else still on clonazepam?

Postby Polar Bear » Tue Apr 11, 2017 4:23 pm

I take Clonazepam, one at night as a sleep aid. I've never considered that it was of any benefit for RLS symptoms.
Don't know that it's of much benefit as a sleep aid either !
Betty
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ViewsAskew
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Re: Is anyone else still on clonazepam?

Postby ViewsAskew » Tue Apr 11, 2017 6:39 pm

Most of what I have read in terms of studies shows that it isn't very effective for most of us. The docs use it less and less so my guess is that you are one of the few it worked for and one of the few still using it. And, as you noted, it can be TERRIBLY hard to stop. I was only on it for a few months and went through the wringer to get off of it.
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

yawny
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Re: Is anyone else still on clonazepam?

Postby yawny » Tue Apr 11, 2017 8:45 pm

Rick, I believe I wrote you awhile back about your use of Gabapentin to get off a benzo...sorry, I had a particularly bad night so my memory is not working so well. I'm not on Clonazepam but my mother is and trying to get off of it. She has a sleep movement disorder but not RLS. She just got a prescription for Gabapentin to try and help her get off Clonazepam but also Trazadone if that's applicable. I'm wondering how much Gabapentin you used to get off Clonazepam? Do you know how it helps the transition? And does Gabapentin help people transition off other things like Trazadone? Any feedback would be appreciated. Good to hear your doing well on your current meds.

QyX
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Re: Is anyone else still on clonazepam?

Postby QyX » Tue Apr 11, 2017 9:44 pm

Benzodiazepines helped a lot at the beginning. Especially Diazepam and Clonazepam was helpful. However I was suffering from horrible side effects like severe social anxiety and later depression the longer I took them. Then it was pure horror to stop them. Because of physical dependence you can reduce the dose only very slow and with each reduction my anxiety and depression got more severe. It took me months to recover and because of no alternatives at that time I got hooked on Benzodiazepines over and over again. Also they were the only drug who worked to counter the alertness caused by opioids. It has been a real struggle for me.

Now I know that I am way more sensitive to Benzodiazepines then average but lot's of people have similar experience. It might just take longer and the side effects are not that extreme.

For moderate and severe RLS opioids are by far the best drugs available. Dopamine agonists are useful for until some Doctor is willing to prescribe opioids. That's how I see it. Long term DA seem to cause only problems. It is just a matter of time in my opinion when you take them daily.

QyX
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Re: Is anyone else still on clonazepam?

Postby QyX » Tue Apr 11, 2017 9:54 pm

yawny wrote:Rick, I believe I wrote you awhile back about your use of Gabapentin to get off a benzo...sorry, I had a particularly bad night so my memory is not working so well. I'm not on Clonazepam but my mother is and trying to get off of it. She has a sleep movement disorder but not RLS. She just got a prescription for Gabapentin to try and help her get off Clonazepam but also Trazadone if that's applicable. I'm wondering how much Gabapentin you used to get off Clonazepam? Do you know how it helps the transition? And does Gabapentin help people transition off other things like Trazadone? Any feedback would be appreciated. Good to hear your doing well on your current meds.


Easiest way to get off from Clonazepam is to use Diazepam. You may wanna read here: http://www.benzo.org.uk/manual/index.htm

This is the best source on how to stop any Benzodiazepin.

I am very sceptical that drugs like Pregabalin (Lyrika) or Gabapentin might be of any use for Benzodiazepine withdraw symptoms. There is unfortunately only one way: take your time and reduce the benzo dose only so slow that you don't suffer extreme withdraw symptoms. Depending on the dose on how long benzodiazepines have been taken it can take many months and in some cases even years until benzodiazepines can finally be stopped.

Drugs like Gabapentin probably can help with withdraw symptoms like insomina and Pregabalin could be of use against anxiety but these drugs don't work and act like Benzodiazepines and have a huge potential of side effects.

For Trazadone: it just needs to be stopped slowly. It probably would be easier to stop Trazadone first and later the benzodiazepines because benzodiazepines would be effective against Trazadone withdraw symptoms but it doesn't work the other way around. Also the effects of benzodiazepines would be limited because of tolerance.

yawny
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Re: Is anyone else still on clonazepam?

Postby yawny » Thu Apr 13, 2017 11:07 pm

QyX, I appreciate your feedback...we actually used the Ashton Manual and switched her from the Clonazepam to Diazapam per one of the suggested schedules. She started at 30mg Diazepam and following the schedule she tapered starting last year in February and finishing in September. She did really well with it and suffered some uncomfortable but manageable side effects but a week or two after that last pill she ended up in the emergency room one night thinking she was dying. They put her back on 5mg Diazapam and she's been there ever since. I think she's still experiencing withdrawal symptoms. Benzos can be so awful, and yet so effective. She was on them for around 14 years. So based on what you're saying, she needs to taper very slow, and slower than she did. She also ended up in the hospital when she tried coming off Trazadone. She's on very little, like 50 mg? But like me, she's very sensitive so I'm guessing this is why she has had such difficulties. Your advice is noted as we start the Trazadone withdrawal this week.

QyX
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Re: Is anyone else still on clonazepam?

Postby QyX » Fri Apr 14, 2017 12:18 am

Hey,

what the hospital did is in my opinion a mistake. Sounds like she is suffering from anxiety / panic disorders. What she needs is a psychotherapy and maybe, just maybe benzodiazepines in emergency situations.

Benzodiazepine withdraw symptoms can last for months and in some cases even years.

Dealing with psychological problems is time consuming and so the hospital took the easy way to solve the situation. She by herself should have told the doctors that she was addicted to benzodiazepines for many years and that she doesn't want to start taking them again.

There are ways to deal with these situation without taking Benzodiazepines but for now all she learnt is that Benzos are the only solution. Therefore the next time after she withdrawn from Benzos and is experiencing here next panic attack she will ask for Benzos again.

She needs to know that after she stopped the Diazepam in a proper way (like you did in the past) she needs to fight her way to the withdraw symptoms who are still present.

After so many years on Benzodiazepines it must be really hard to experience emotions in a normal way again. I would recommend seeing a Psychotherapist or Psychiatrist who has experience with situation like this.

It is so easy to just take a pill when anxiety comes knocking at the door. However the underlying psychological problems will never be solved this way.

Probably she is motivated to see a support group to here stories from other people.

It should be possible to stop Trazadone within 2 to 4 weeks, of course some withdraw symptoms will occur but as long as she is still on Diazepam it should be manageable. 50 mg Trazadone is not that much but all drugs who have potent antihistaminergic properties can be hard to stop. Symptoms like insomnia are normal. It is hard but the best way is just to accept the insomnia at some point and sooner or later it is possible to sleep for some hours.

These biochemical changes in the brain are very stressful and demanding. I wasn't able to do anything when I was stopping similar drugs. You are very ill and sick, like a severe fever. Things just have to play out. It takes time and insomnia, anxiety and being weak is just a part of the process. I am sensitive too and unfortunately there is no way around these symptoms. It's tough but things will get better. When I was dealing with Benzodiazepines, I only left my bed to go to the toilet and answer the door when the pizza service came. I was living in my bed for months. Sometimes it's just the way it is. Going back on Benzos will just restart the hole dependence.

From 5 mg I would say it is possible to stop Diazepam within a maximum of 10 weeks. Normally 5 weeks should be possible.

If it is really bad and she can't live without a drug maybe Lyrika (Pregabalin) is an option. But just maybe. An expert psychiatrist with time needs to determine this and not some doctor in an ER setting.

I also would advise to stay away from SSRI Antidepressents because they are very hard to stop. Lyrika is in a way addictive but compared to other drugs it is relatively easy to stop.

Stainless
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Re: Is anyone else still on clonazepam?

Postby Stainless » Fri Apr 14, 2017 1:29 pm

I agree with most everything in the posts. I just never had side effects from clonazepam and only quit because of a possible link to Alzheimer's found in a large Canadian study. The study has been questioned by a U of Washington study that found no link. I had more side effects from gabapentin but the little hangover I got has gone away.

Yawny, my doctor put me on gabapentin for six months before tapering clonazepam (maybe because I saw the doctor every six months). I was told to reduce 3 - 2 - 1 each month and lower dose if needed. It worked great until I stopped cold turkey at 1 mg. Over the next 3 months I did 3/4 - 1/2 - 1/4 - 1/8 while taking 600 mg. gabapentin. I cut up pills best I could but many use titration mixing the pills in a measured beaker of vodka and getting more precise doses. I had side effects that lasted months after I quit but eventually went away in a couple months. Some say symptoms last a year or more so I was scared. The problem was my RLS changed from an evening and sleeping issue to a 24 - 7 issue. I tried the DAs and nothing at all but still had RLS 24 - 7. At that point my doctor and a specialist recommended I go back on clonazepam but a lower dose. I tried that for a while but was kicking up a storm. I went back to adding 600 mg. gabapentin and that helped a lot at the lower dose.

My biggest clonazepam withdrawal symptoms were freezing feet and knees. Research leads me to believe this was a hallucination not a real reaction which seems very strange. It also put me in a deep funk.

I have considered opioids but doubt my doctor would prescribe and I like not having side effects (that are apparent to me). For 20 years I thought the clonazepam just helped me sleep but apparently it does way more than that.

I have to agree with the statement made in the thread above; Benzos can be so awful, and yet so effective. Rick

Yankiwi
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Re: Is anyone else still on clonazepam?

Postby Yankiwi » Fri Apr 14, 2017 10:55 pm

I took clonazepam for several months. My GP was so worried about addiction he had me take one tablet (I don't remember the dose) every three days. It seemed to do absolutely nothing for me so I stopped.

yawny
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Re: Is anyone else still on clonazepam?

Postby yawny » Wed Apr 19, 2017 11:49 pm

QyX & Stainless,
My mother is a tough cookie but the benzo withdrawal has really challenged her wherewithal. I'm not sure she completely believes me all the time (I'm family...what do I know?! :? ), so I read her what you wrote about your own experiences, and perspective and it really, really helped. I could go into detail but I'd just be repeating everything helpful that you said! So simply, Thank You for sharing and taking the time.

fuz_mind
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Re: Is anyone else still on clonazepam?

Postby fuz_mind » Wed May 24, 2017 11:00 am

this is a very late response....

but my neurologist is of the opinion that clonazepam helps with both sleep and pain, whereas he is less comfortable putting me on a sleeping tablet, like zopiclone, which helps with sleep but not pain

i was on it for a year plus and still on it; I know I have definitely built a tolerance to it. I was started on 1 tabs but it gradually escalated to 3 tabs at night, and even then when my rls symptoms are not well-controlled, i was still waking up a lot. i did manage to wean it down back to 1 tab - my experience has been - if the rls pain/discomfort is well managed by other medications or not flaring up - the main withdrawal i had was disturbed sleep for 1-2 months. but i am aware that the clonzepam is used by doctors to treat anxiety; hence if there are any background anxiety or mood problems, the withdrawal may make it more pronounced.

badnights
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Re: Is anyone else still on clonazepam?

Postby badnights » Sat May 27, 2017 10:32 am

Interesting that he said it helped pain and sleep. My understanding was that it helped anxiety and sleep.
Beth - Wishing you all restful sleep tonight
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Stainless
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Re: Is anyone else still on clonazepam?

Postby Stainless » Sun May 28, 2017 6:07 pm

I just saw my doctor after trying different doses of gabapentin with 1 1/2 mg. clonazepam. My RLS is manageable and I'm sleeping through the night but have shooting pains in the thighs from early evening through the night. I'm up to 800 mg. gabapentin. Like RLS pain varies each night. Each increase helps me sleep but not so sure about any less pain. Doctor said it is phantom nerve pain but I did not catch the medical name and said gabapentin is the right drug to control it. Doctor says will not prescribe over 2 mg. clonazepam, I'm sure would not prescribe opiates and would shuffle me off to specialists if I asked. I can get by like this OK but am not looking forward to future progression of this disease.

badnights
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Re: Is anyone else still on clonazepam?

Postby badnights » Mon May 29, 2017 5:21 am

Rick it sounds like it would be hard to get anything done while your evening/nighttime pain is going on. Is that what the big problem is now , with the RLS controlled, or do you think the pain might be part of your RLS? If it's not - if it really is neuropathic - then opioids are not likely to help it much and the meds like gabapentin are the way to go. I wonder why he said phantom - have you lost a body part? Or did he just mean pain from damaged nerves?
Beth - Wishing you all restful sleep tonight
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