Hi all, glad I found this forum!
I've had what I'd describe as RLS for probably about 4 years, I'm in my late 30's (Male) and my doctor really wasn't sure what it was when I described it to him. He did a full blood work out and ruled out iron deficiency. When I saw him the next time after the tests came back fine, he said "Do you suffer from Restless Legs ?" and when I re-described it to him, he then prescribed 0.5mg Clonazepam per night saying that should help.
The first week it seemed to do some good (or is it the placebo effect ?), then I had a few days where it came back, then was on holiday and didn't notice it (although I kept taking the Clonazepam), and now I'm back to work I've had several severe nights of it.
I get it in both legs and for the past 4 years, and only saw the doctor because it started happening in my left arm. It feels like trapped nerves, ants crawling through your legs and sometimes pulsing sensations working through my legs and gives me the sudden urge to move my legs or get up when its at its worst. Getting up and walking around reduces but never totally goes away. I don't get any pain from it like some RLS sufferers seem to get.
I've been on Clonazepam now for 3 weeks and am going to see the doctor again because Clonazepam doesn't appear to be working, what do you think ? Could it just be:-
1) It's not RLS but something similar
2) It is RLS, keep on the Clonazepam and give it a longer than 3 weeks
3) It is RLS, Clonazepam is working just not all the time (you get this sometimes)
4) It is RLS and I need to try another drug ?
Most days are okay, I do a lot of sitting whilst working and it doesn't cause me much problem then until 6-7pm when it starts up, but if I sit around all day and read or watch TV, I'll find it happening in the day (but not as bad as at night after 7pm at night). It gets to its worst around 9pm and I go to bed around 11pm.
I've also had the odd muscle spasms but it seems to have got worse (and throughout the day) since taking Clonazepam (not sure if it's this that's causing it).
What do you think ?
Any advice would be appreciated from anyone who has tried Clonazepam or have any ideas or have experienced similar problems.
New - Doctor not sure if its RLS + Clonazepam
You might print out the Mayo Clinic Algorithm algorithm http://www.mayoclinicproceedings.com/pd ... thm%20RLS' . In it you will find a variety of treatment options. If you are questioning your diagnosis, here are the criteria for RLS:
Uncomfortable sensation in the legs with a clear need or urge to move the legs. The sensation may be described in many different ways from aching and pulling to creepy crawling feelings. The sensations can also be painful, not just uncomfortable. But in the end, all sufferers can clearly identify a need or urge to move the legs as a driving force behind their complaint. Some individuals may have symptoms not only in the legs but also in the arms or body.
The symptoms are worse at night. This may be only at bedtime or it may start in the evening when trying to sit for any period of time. Some individuals may have symptoms throughout the day but these symptoms will always be worse at night and be at their best sometime in the morning.
The symptoms come on with rest. Whether trying to lie quiet at bedtime or sitting through a long plane flight during the day, the sensations are likely to strike. Whether trying to sit through a movie or quietly reading a book, the symptoms will make what used to be an enjoyable event, a most unbearable one. You cannot rest; you cannot relax; you cannot slep another night.
The symptoms are relieved with movement. All sufferers learn quickly that getting up and walking will immediately relieve the symptoms. However, as soon as the individual settles back into a restful state the symptoms will usually return. Any movement of the legs will usually bring about some immediate, although temporary relief. If the legs are not moved, they may jump on their own. In some individuals, there may be semi-involuntary movements of the legs preceded by only a very brief sensation. Most individuals with Restless Legs Syndrome will have rhythmic or semi-rhythmic movements of their legs while they are asleep. Although they may not be aware of their movement, usually their bed partner is. It is this movement of the legs, this constant walking to ward off the sensation, that gives the viewer the perception of the sufferer being restless, thus the term Restless Legs Syndrome.
Your doctor might want to put you on a Dopamine Agonist, such as Mirapex or Requip. Unfortunately, those do take a little while to build up. It is my understanding that Clonazepam doesn't "build up" like these others, so you might need to consider a different direction. Keep us posted.
Uncomfortable sensation in the legs with a clear need or urge to move the legs. The sensation may be described in many different ways from aching and pulling to creepy crawling feelings. The sensations can also be painful, not just uncomfortable. But in the end, all sufferers can clearly identify a need or urge to move the legs as a driving force behind their complaint. Some individuals may have symptoms not only in the legs but also in the arms or body.
The symptoms are worse at night. This may be only at bedtime or it may start in the evening when trying to sit for any period of time. Some individuals may have symptoms throughout the day but these symptoms will always be worse at night and be at their best sometime in the morning.
The symptoms come on with rest. Whether trying to lie quiet at bedtime or sitting through a long plane flight during the day, the sensations are likely to strike. Whether trying to sit through a movie or quietly reading a book, the symptoms will make what used to be an enjoyable event, a most unbearable one. You cannot rest; you cannot relax; you cannot slep another night.
The symptoms are relieved with movement. All sufferers learn quickly that getting up and walking will immediately relieve the symptoms. However, as soon as the individual settles back into a restful state the symptoms will usually return. Any movement of the legs will usually bring about some immediate, although temporary relief. If the legs are not moved, they may jump on their own. In some individuals, there may be semi-involuntary movements of the legs preceded by only a very brief sensation. Most individuals with Restless Legs Syndrome will have rhythmic or semi-rhythmic movements of their legs while they are asleep. Although they may not be aware of their movement, usually their bed partner is. It is this movement of the legs, this constant walking to ward off the sensation, that gives the viewer the perception of the sufferer being restless, thus the term Restless Legs Syndrome.
Your doctor might want to put you on a Dopamine Agonist, such as Mirapex or Requip. Unfortunately, those do take a little while to build up. It is my understanding that Clonazepam doesn't "build up" like these others, so you might need to consider a different direction. Keep us posted.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Clonazepam is hepful for some, but not the majority of people who take it. It was the drug of choice maybe 15 years ago, as there weren't many other drugs. The dopamine agonists that Brandy mentioned are now the preferred choice for people who need daily help with the RLS. The algorithm she mentioned is a great place to start when looking for direction on what drugs to take.
You might also want to check out the "sticky" post in the New to RLS section. It has many bits of information and links that will help you help yourself and help you help your doc! It's unfortunate, but many of us find we have to educate our docs as they aren't as up to date as we'd like them to be.
Glad you found the board and hope you can find some information here that will help you get a better resolution.
You might also want to check out the "sticky" post in the New to RLS section. It has many bits of information and links that will help you help yourself and help you help your doc! It's unfortunate, but many of us find we have to educate our docs as they aren't as up to date as we'd like them to be.
Glad you found the board and hope you can find some information here that will help you get a better resolution.
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.
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.
to RLS 101
Hi,,
Please dont get on clonazepam as there are more meds out there. I was given conazepam 18 years ago at 1.5 mgs per day for MS and . In 2000 I was at 2.5 and decided to get off. Well believe me, I lost 45 lbs and could not even get out of the house. Thought I'd die. Almost drove my family crazy so I wemt back and after 6 years I'm down to 0.5 and still struggling.
Go to benzo.uk.org and you will see some horrors from benzo addiction. Dr. Ashton who did some research for over 25 years said that it was as bad as Heroin to get off. It kills you GABA receptors and it does not grow back in one night.
vinton
Please dont get on clonazepam as there are more meds out there. I was given conazepam 18 years ago at 1.5 mgs per day for MS and . In 2000 I was at 2.5 and decided to get off. Well believe me, I lost 45 lbs and could not even get out of the house. Thought I'd die. Almost drove my family crazy so I wemt back and after 6 years I'm down to 0.5 and still struggling.
Go to benzo.uk.org and you will see some horrors from benzo addiction. Dr. Ashton who did some research for over 25 years said that it was as bad as Heroin to get off. It kills you GABA receptors and it does not grow back in one night.
vinton
Had multiple sclerosis for 35 years +
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
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I am so sorry you had to go through that. I, too, used that site when I detoxed from K - or klonopoison 
.
The problem is that many people have no difficulties at all stopping it. It's so hard to know if you are going to be one that will. I was only on it a few months - in fact it took me longer to stop it than I took it. Like you, I lost a lot of weight - about 35 pounds. At first, it was like herioin withdrawal.
I am very ambivalent about it. I guess I'd prefer people try other drugs first. But, if it works, I also don't want people to be miserable because there is a risk they will have difficulty stopping it.
I suppose the only real solution would be to take a drug holiday from it every month or so.
.
The problem is that many people have no difficulties at all stopping it. It's so hard to know if you are going to be one that will. I was only on it a few months - in fact it took me longer to stop it than I took it. Like you, I lost a lot of weight - about 35 pounds. At first, it was like herioin withdrawal.
I am very ambivalent about it. I guess I'd prefer people try other drugs first. But, if it works, I also don't want people to be miserable because there is a risk they will have difficulty stopping it.
I suppose the only real solution would be to take a drug holiday from it every month or so.
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.
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.
Clonazepam
I've been on it for quite a while and it was used before for RLS but its the wrong stuff. Get off it because it is very addictive. To find out go to benzo.org.uk and you will see the horror stories.
Had multiple sclerosis for 35 years +
new doctor - not sure if it's rls + klonazapem
Hi everyone. I just wanted to say that I do take klonazapem .5mg and it is doing fine for me. I used to take Requip and did a number on me as I had rls 24/7 and very painful. I know that klonazapem is a control susbstance and is habit forming, but if it is working for me I will not change. I hope that it continues. I know what works for one may not work for someone else.
Everyone have a nice weekend.
Everyone have a nice weekend.
Charlene
Taking one day at a time
Taking one day at a time
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marywalker7890
- Posts: 3
- Joined: Sat Nov 11, 2006 6:18 pm
Other alternatives
Since my best friend just died from medication she was given for pain, excuse me for being lerie of meds docs prescribe. Here's a natural alternative for RLS and it does work, I've had RLS for 20+ years and it works everytime for me. I've been using it for 9 months now, no problems, just works.
http://naturesinventory.com/night_time_ ... ss_oil.htm
http://naturesinventory.com/night_time_ ... ss_oil.htm
new - doctor not sure if it is rls + clonazapem
Hi Marywalker7890 I am so sorry about your friend passing away. I hope that you are doing ok with it. Thank you for sharing this site with us and glad that it works for you. Please keep us posted on you are doing. It is a wonderful group and very supportive.
Charlene
Taking one day at a time
Taking one day at a time
medication
Hi,
I've read a few posts and I'm trying to sort things out. As I said in before clonazepam may help some but in my case they had me on 2.5 mgs per day which is too much of a price to pay but if it works for you at a low dosage then go for it but again it is very addictive.
I've started mirapex at 0.125 last night and slept well and could it be the placebo effect as this med does not react immediatly according to the pharmacist.
So from your experience how long does it take to get full effect?
I was considering natural remedies but I'M on other medication and my daughter is a GP and she had 2-3 cases of people mixing meds and the natural stuff and one almost died.
If I would not take anything it would be OK but its the mixture that is the problem and I cant quit the other meds as I've had MS for 35 years.
Being new on this site, I really enjoy exchanging opinions as it helps me to take a decision as I trust the one that are taking it more than the one that prescribes it..
Vinton
I've read a few posts and I'm trying to sort things out. As I said in before clonazepam may help some but in my case they had me on 2.5 mgs per day which is too much of a price to pay but if it works for you at a low dosage then go for it but again it is very addictive.
I've started mirapex at 0.125 last night and slept well and could it be the placebo effect as this med does not react immediatly according to the pharmacist.
So from your experience how long does it take to get full effect?
I was considering natural remedies but I'M on other medication and my daughter is a GP and she had 2-3 cases of people mixing meds and the natural stuff and one almost died.
If I would not take anything it would be OK but its the mixture that is the problem and I cant quit the other meds as I've had MS for 35 years.
Being new on this site, I really enjoy exchanging opinions as it helps me to take a decision as I trust the one that are taking it more than the one that prescribes it..
Vinton
Had multiple sclerosis for 35 years +