Clonazepam and Doctors

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Sleeper
Posts: 2
Joined: Fri Nov 22, 2013 9:27 pm

Clonazepam and Doctors

Post by Sleeper »

For years I had RLS (pre-internet so no online help) so I had no idea it was a thing. During my 30s it got so bad I took up jogging before bedtime to get the excess energy out of my legs. That helped some but I still often had to get out of bed and run in place and do squats to calm my jumpy legs. I don't have pain just intense restlessness in my legs and sometimes upper body. I learned to stay away from cold medicine as that made things worse. For years I managed like this losing many nights of good sleep.

During the early 2000s I turned 40 and started my yearly physical. The first 3 or 4 year I saw him I never mentioned mentioned my restless legs as I did not know it was a disorder. Then one visit I mentioned it and he put me on a few of the common anti-RLS meds but they did not help. Then he prescribed .5 mg of Clonazepam. That helped about 70% of the nights. So the following year he put me on 1 mg Clonazepam before bed and that mostly cured me, but a few times a month I would take two if I got hit real bad and could not sleep. Then at the end of the 3 month prescription I had to go a week or so without and suffer. So the next yearly visit he put me on 1.5 mg and said take 1 mg nightly and a second 1 mg if I had an attack and the extra .5 would give me enough so I would not run out at the end of the month.

Then we moved and when finding a new doctor, I explained I was on Clonazepam and if there was a problem with maintaining my prescription, let me know and I'll find a different doctor for my yearly physicals. Anyway, found a doctor, and for 2 or 3 years he refilled the prescriptions no problem. Then around 2013 he said he is not comfortable prescribing Clonazepam and asked me to see a neurologist. I found a neurologist here in the Detroit area that specializes in RLS who had a web page detailing his experience with RLS. So I set an appointment and saw him. I had a 15 minute consult with him and he chuckled and he said he often gave his patients much stronger stuff his patients and said if Clonazepam works for me that's great and stay on it. He offered to fax my doctor a letter saying he recommended I stay on Clonazepam for RLS.

About 3 years ago we moved about an hour away, but I continued to drive to see him as my doctor because I did not want to go through the Clonazepam fight again. Then 2 years ago he moved from the practice and was replaced by another doctor. Anyway, she gets on me everytime she has to refill it. When I requested my last refill she said she would like to take me off it. I told her the neurologist story and they should have a fax from him. She said she could not find anything. So I tried to find the neurologist I saw and I can't find him or remember his name. I have my insurance company pulling my records for 8 years ago so I can find out who I saw. I think he might have moved or retired...

I like Clonazepam because in only makes me sleepy and prevents RLS - it does not give me any kind of euphoric feeling so there is no temptation to take one to get a high.

I read about many here that are on stronger stuff than I am. Because the new doctor and hour away wants to cut me off, I will start going to a new doctor near me. Anyone have experience with doctors that don't want to prescribe your medication? How did you find your doctor? I think with the opiate crisis doctors want to stay away from these drugs. Clonazepam is not an opiate but I guess people do abuse it.

TL;DR

Need to find a new doctor that will maintain my Clonazepam prescription for RSL- any idea how to find the right doctor that won't treat me like an addict?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Clonazepam and Doctors

Post by stjohnh »

Hi Sleeper, and welcome to the forum. Finding a doctor to prescribe a satisfactory medicine is a common problem on this forum, but mostly for those who need an opioid for their RLS. I can't think of an easy way to find a doc to prescribe clonazepam. It is not approved for RLS, and while some here have had good results with it, I think most RLS aware docs would prefer that you be on something else. Since you started clonazepam further information has developed for optimal treatment of RLS.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://reader.elsevier.com/reader/sd/p ... 83A240A179
Blessings,
Holland

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Clonazepam and Doctors

Post by ViewsAskew »

Yeah, it's a tough situation. As stjohnh mentioned, it isn't one of the commonly used substances these days - that will make it more difficult, I'd guess. It's great it works for you - it doesn't work for many of us. People definitely do abuse it - and about 50% of people who take it have difficulty stopping it.

I use an opioid and have had three different doctors refuse to continue to see me/write the script. It's always an issue to find a new doc. I have no hints because every time I did, it failed within a year. I eventually moved to Southern California where one of the well-known RLS/WED specialists practices - it was just easier.

Stjohnh has some good advice - it could be that you could eliminate the symptoms if you could improve the iron in your brain.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Sleeper
Posts: 2
Joined: Fri Nov 22, 2013 9:27 pm

Re: Clonazepam and Doctors

Post by Sleeper »

"I eventually moved to Southern California where one of the well-known RLS/WED specialists practices - it was just easier."

Yeah, the Neurologists I saw was one of the well known RLS docs. Unfortunately, I can't remember his name can't find him on the web and where I think his practice was there are no neurologists.. He either move or retired. Anyway, I am filling out a request for 5 years of insurance records so I can spot his name. I guess for now, I will continue to make the drive and fight with the new family practitioner that wants me off it, the more I fight for my medication the more I sound like an addict. Like I mentioned, I get no euphoric high from it and it only makes me sleepy so there is no temptation to take it recreationally.

Some mention they take tramadol here. I took that after knee surgery and boy that made be feel good and after about 3 weeks of taking it and stopped I had some nasty withdrawal symptoms and a definite craving for it. I would stay away from that stuff.

I have taken 1 mg - 1.5 a night for 15 years - My prescription is for 3 month 1.5 per day, but I mostly take 1 mg and have about 4 months supply extra that I am hoarding for the time that no doctor will prescribe it to me. Since I don't take a lot the weaning process should not be that bad. I think I will move down to .5 mg a night and take more if I have an attack and hopefully stockpile more.

When the time comes I'll look into the IV iron treatment. But for now, I'll keep taking what works and hopefully find the neurologist. If he is still around and I'll go from there.

Stainless
Posts: 274
Joined: Tue Dec 01, 2015 9:30 pm

Re: Clonazepam and Doctors

Post by Stainless »

Our stories are so very similar. I lived with RLS maybe forever, Jr. High at least. I first heard of RLS in the 80s. In my late 30s I asked a doctor about it & he put me on Clonazepam. Still had to deal with late afternoon & evening Jimmy legs but slept well. Still had a lot of nighttime leg movements but I was oblivious. Girlfriends weren’t. Started at .5 mg & worked my way to 3. Still sleeping great at 57.

Then I read an article about potential link between benzodiazepines (Clonazepam) & Alzheimer's. Asked my doctor & I weaned off over six months of hell. Then I tried every alternative short of opioids over the worst year of my life. Then at doctor’s recommendation back onto Clonazepam. New pain in thighs progressed until I was seeing neurologist every 3 months & added 300 mg pregabalin. I have good & bad streaks but can sleep. Pregabalin only knocks me out. Nothing I would describe as pain relief. I have the same fear of “doctor shopping” to stay on Clonazepam. Don’t know what to tell you.

I had good results on Clonazepam for almost 2 decades with no side effects or pain until I messed with it. Doctor said 3 mg had respiratory issues so I’m stuck at 2. Pharmacies treat you like a drug addict. For many years I had to refill every month. Now finally 3 months.

Clonazepam is hell to get off of. Make sure you have something better to go onto. Gabapentin didn’t do it. Requip made it worse. Check your iron and think about opioids but be careful about quitting. I feel for you. Best of luck.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: Clonazepam and Doctors

Post by yawny »

Sleeper, if you do decide to reduce your usual Clonazepam dosage, consider using the Benzo reduction program created by a UK doctor. I forget her name but she’s mentioned here if you do a search. My mother was on Clonazepam and just like you started having difficulty getting her prescription filled. She also felt that it drugged her throughout the daytime and wanted to have a clearer head. I found the online program and she followed it until she got down to a pretty low dose and thought she was having a heart attack. The ER doctor immediately put her back on the higher dose so all gain she made was lost. I’ve always thought that she would have been fine if they had just increased her dose a bit. She started the program again and lowered her dose as far as she could and had more problems so we decided she should stay at a low dose forever. I had great success sleeping after taking Xanax. It would knock me out so I didn’t notice any leg movements but my neurologist wouldn’t let me continue on it because of the recent findings of brain harm. My problem has always been anxiety and hyper-awareness of my leg/arm movements. I changed my diet to one for Histamine Intolerance bc I found I became more aware of leg/arm movements after eating foods high in glutamate and histamine. And I also started taking OTC supplements that affect Gaba. I’m having success with diet, and the Gaba affecting supplement Skullcap. Rarely, if I eat badly, I need extra help from Passion Flower or Valerian. Maybe my success with Skullcap is related to my success with the Gaba affecting benzo? I had to experiment with many of the Gaba affecting supplements before finding the one that best worked for me. It’s clear to me that they affect people differently. My husband has success with Lemon Balm while I do not. Good luck.

jacwillheal
Posts: 14
Joined: Fri Mar 12, 2021 11:04 pm

Re: Clonazepam and Doctors

Post by jacwillheal »

Really interesting and useful thread. I have been on clonozepam for 12 years, when I first developed RLS. At the time, I was told by my doctor it was the "best thing for RLS." He never discussed how hard it would be to get off it or even if it was habit forming. Over the years, I have had some very scary moments with this drug, caused by doctors who refused to refill the script and then kicked me into serious withdrawal symptoms. Sweating, confusion, shaking, a weird spacey feeling and inability to make simple decisions. The most I ever took was 1.5 mg. I am now down to a 0.5 but anytime I try to halve that, I experience these horrible symptoms. I'm also on Ropinerole. I do ok with 1 mg of that, for a while. And then it stops working and I go up to anywhere between 2-4 mgs, until that dose stops working and then I do a holiday with gabapentin. The holiday is generally extremely painful for about a week until I can start taking the ropinerole again. I recently had a doctor suggest I take Lorazepam as a way of weaning off of clonazepam. I'm uncertain if I'll try it as I'm feeling like all I need is 1 more pharmaceutical in my brain. (forgot to mention when it's really bad I also take ambien) I would like, at the very least, like to get off the clonozepam as it does nothing for me anymore and I experience such serious withdrawal when I go off it, it scares me to be that dependent on something. My neurologist also offered to do a liquid clonazepam so I can gradually reduce the dose and I think that's the direction I'm going to go. I'm glad it gives some people here relief. For me, the relief I initially found with this drug is gone and I just want it out of my life.
Living with RLS for 13 years.

Stainless
Posts: 274
Joined: Tue Dec 01, 2015 9:30 pm

Re: Clonazepam and Doctors

Post by Stainless »

When I got off Clonazepam I read about titrating doses below .5 mg. Dissolve a known quantity in Vodka and dispense it very accurately. If I was to do it again that's what I would do.I just kept breaking the pill into smaller and smaller pieces and staying on a dose for a week or more but still had side effects for over many months. Problem was it was the only thing that kept the beast in check so I ended up back on it. Best of Luck

badnights
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Location: Northwest Territories, Canada

Re: Clonazepam and Doctors

Post by badnights »

My neurologist also offered to do a liquid clonazepam so I can gradually reduce the dose and I think that's the direction I'm going to go. I'm glad it gives some people here relief. For me, the relief I initially found with this drug is gone and I just want it out of my life.
I have not, thankfully, gone thru a benzo withdrawal.It sounds like you have a plan, and I hope it works!

1 mg ropinirole is the max recommended for RLS/WED by some specialists. It must be horrible to withdraw multiple times. Would your doctor not prescribe an opioid for the withdrawals?

There will hopefully soon be a medication that blocks the D1 dopamine receptor which is thought to be responsible for augmentation; if it pans out, it might allow us to take dopamine agonists without getting augmentation.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jacwillheal
Posts: 14
Joined: Fri Mar 12, 2021 11:04 pm

Re: Clonazepam and Doctors

Post by jacwillheal »

HI Beth

This is a long overdue reply to your last post. Sorry, I'm still trying to figure out this forum and didn't see your post. I am finally off clonazepam. I ended up taking lorazepam to do it and that worked, with a strict titration schedule. I am now seeing a neurologist at the University of Washington sleep clinic who has me on 2.5 of methadone along with 900 gabapentin. It worked great for a month and now I am feeling so dizzy and lightheaded all day, plus sleepy. I can barely function. I also sweat profusely. It's completely eliminated my RLS but now it's the other symptoms I am struggling with. I wish I were a candidate for iron infusions but he says I'm not due to my levels. I was always such a health nut and never saw myself doing all these drugs at this point in my life. Anyway thanks for your response.
Living with RLS for 13 years.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Clonazepam and Doctors

Post by badnights »

jacwillheal wrote:
Mon Aug 09, 2021 1:27 am
HI Beth

This is a long overdue reply to your last post. Sorry, I'm still trying to figure out this forum and didn't see your post. I am finally off clonazepam. I ended up taking lorazepam to do it and that worked, with a strict titration schedule. I am now seeing a neurologist at the University of Washington sleep clinic who has me on 2.5 of methadone along with 900 gabapentin. It worked great for a month and now I am feeling so dizzy and lightheaded all day, plus sleepy. I can barely function. I also sweat profusely. It's completely eliminated my RLS but now it's the other symptoms I am struggling with. I wish I were a candidate for iron infusions but he says I'm not due to my levels. I was always such a health nut and never saw myself doing all these drugs at this point in my life. Anyway thanks for your response.
no worries, I have a hard time keeping up here myself. Maybe I should have quoted your username in my reply.

Are you off the lorazepam now too? If not, that might account for your daytime sleepiness. I'm sure your medications can be adjusted to reduce those side effects.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Caitrin
Posts: 64
Joined: Thu Nov 05, 2009 2:49 am
Location: New Jersey

Re: Clonazepam and Doctors

Post by Caitrin »

My primary doctor gave me my scripts for ambien and clonazepam two days ago. She did not give me my usual dosage of 2 mg a day which dose I had taken for 30+ years. Instead she decided to prescribe.5 mg. In my opinion that is not an acceptable taper. I do have 10 more days of my last script and tried cutting one 1 mg in half and had serious withdrawal. I called her and asked if she could work with me on the taper and she said you can do it.” She also gives me my script for Ropinorole (1.5 mg/day). I would appreciate any advice or comments.

Caitrin
Posts: 64
Joined: Thu Nov 05, 2009 2:49 am
Location: New Jersey

Re: Clonazepam and Doctors

Post by Caitrin »

My primary doctor gave me my scripts for ambien and clonazepam two days ago. She did not give me my usual dosage of 2 mg a day which dose I had taken for 30+ years. Instead she decided to prescribe.5 mg. In my opinion that is not an acceptable taper. I do have 10 more days of my last script and tried cutting one 1 mg in half and had serious withdrawal. I called her and asked if she could work with me on the taper and she said “you can do it.” She also gives me my script for Ropinirole (1.5 mg/day). I do not have a neurologist. I would appreciate any advice or comments.

Polar Bear
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Re: Clonazepam and Doctors

Post by Polar Bear »

I think this is far too big a drop in your Clonazepam and it is so unfair that your doctor did this without even a discussion.

This is what I found with regard to tapering, there are three methods here.
Examples of a Klonopin/Clonazepam tapering/weaning schedule:
Decrease dosage by 0.5 mg every two weeks until 1 mg is reached, then decrease by 0.25 mg every week.
Decrease dosage by 25 percent during week one and 10 percent each following week.
Decrease dosage by 0.25 mg per week until no longer needed.


I would go back to her preferably with a face to face appointment and really lay it on to her how the withdrawals are distressing.
I'd also do a little research and find tapering information from a source she is likely to take notice of, perhaps from the Mayo Clinic. Print it out and take it with you.

You mention your Ropinirole at 1.5mg daily. This is high, the maximum dose is recommended at 1mg. You really need to get this down, again by a slow taper. Indeed, ropinirole would be a good drug to considering coming off as it does have a high rate of leading to augmentation.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Caitrin
Posts: 64
Joined: Thu Nov 05, 2009 2:49 am
Location: New Jersey

Re: Clonazepam and Doctors

Post by Caitrin »

Thank you for your helpful information. I scheduled a telephonic appointment with my doctor for late this afternoon at which time I will ask her if we can work together on a realistic tapering schedule. Hopefully she will agree to work with me. I think your first two suggestions would be appropriate for me. Yesterday I referred to the Ashton Manual online and find their withdrawal schedule similar to those you suggest. Re Ropinirole I think it may be easy to reduce dosage to 1 mg. by splitting the pill. I will report back after my telephonic appointment.
Thanks again for taking the time to provide the information.

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