Struggling with RLS

[Paul007]

Hiya everyone I'm new here but have been suffering from restless legs most of my life and it's getting progressively worse. Doctor prescribed me Clonazepam which worked great for 2 years but now Ive become tolerant to it. Trying to come of Clonazepam but apparently it's one of the hardest drugs to stop and after trying to I can agree. I need help with any remedies that people know that work, thank you in advance

[Madlegs1]

Cloniddine and valium helped me getting the last stages of Fentanyl.

You need to drop down slowly in very small steps.

Good luck.

Worth checking out Matt Finch site.

[Gidgetmoondogg]

I took Clonazepam for a few years as well. It stopped working. I have been on Myrapex for many years and it does the trick. Do you consume a lot of aspartame? Try limiting that and see what happens.

[Paul007 in reply to Gidgetmoondogg]

Not heard of myraplex. My doctor put me on pregablin which didn't work at all so he says there's 3 treatments left to try but I must get off clonazepam. I'm hoping there's a more natural way of doing it as the chemicals are doing more harm than good I feel. But coming off clonazepam is a real battle. Thanks you for such a quick reply I really appreciate it

[fallevening in reply to Paul007]

I think she means Mirapex.. it's a drug used for Parkinson's & RLS

[Paul007 in reply to fallevening]

Yeah I noticed my spelling mistake, let's put it down to lack of sleep 😁

[Maureen133 in reply to Gidgetmoondogg]

I use ropinirole.helps a lot,but not all the time.

[Henshaw241241]

I have been with RLS for years climbing walls now it a lot better about 8/30 pm I take 2 pramipexole and 2 codeine about 10 to 1030 bed most nights a have a good night's sleep all the best Tony x

[Maureen133 in reply to Henshaw241241]

I heard codeine helps,but how.it's a pain killer.

[Hidden]

I hate this site!!!! Well not really but I keep typing up big replies only for someone to sneak into the site and delete them before I put them up. My Mrs says its me and my clumsy meat slab hands but I refuse to take responsibility and prefer to think it is internet imps trained by Madlegs1 as he's jealous of my stunning good looks, (I keep them in a box under the bed). Don't think I don't know that what you're up to ML1!!!!!!

I read a very good book on addiction once, (well I've read quite a few), that stated benzo addiction/withdrawal is one of the toughest. That said EVERY addiction/withdrawal is tough if not done right and believe it or not with the right support and approach they are generally not that bad, (if people get their heads in the right place - please no abuse from those that have gotten over a deep seated addiction and want to tell me I don't know my arse from my elbow - I am in no way minimising the horrendous time many have and I have nothing but respect for those that beat any addiction).

So please get that mindset changed ASAP, it will make the process more difficult. You want to change and if you want it you can have it that is not in question.

Have you drawn up any withdrawal regime? If you don't mind me asking, (if you don't want this on the open forum you can PM me), did you misuse - as in take more than you were prescribed. Did you use at all to take the edge off a difficult emotion as opposed to the blasted RLS? Have you alternative drugs to ease the RLS?If you hit a bad patch with RLS any/all resolve could crumble in an instant.

I had little sleep last night so my head is a bit fried at the minute and can't focus but if you give me a bit of info I can't see how with a bit of input from some of the other dudes and dudettes on here that we don't have you benzo free and in a much better place sooner rather than later. AND if I forget to answer chase me down and I promise I will. Get Madlegs1 to send one of his imps to get me

Take care and rest assured you are in great hands here - I thought I knew all there was to know about RLS til the guys here made me realise I knew very little!!!

[Paul007 in reply to Hidden]

Cheers for the reply, I've been on 1mg of Clonazepam which was 2 0.5mg tablets a night for 3 years and although they worked for most of that time I can notice a change in me that I don't like. Recently I decided to slowly come off them which I spoke to my gp about and told me how to do it. I went down to one tablet for 2 weeks then half for another 2 weeks then totally stopped. I was fine for day 1&2 but on the 3rd day things started to get rough and I couldn't sleep at all. Day 4 was even worse and I'll admit I give up and that evening took 2 tablets. My symptoms seemed to have gotten worse than I remembered before I started the clonazepam and went back to the doctors and explained what happened. He suggested 1 clonazepam and 1 pregablin for two weeks then stop taking the clonazepam but got the same symptoms. I'm struggling with this as I don't want to be on any more chemicals.

[Hidden in reply to Paul007]

Personally since you've not been successful the first time I'd slow the whole process way down.

Start with normal dose then drop one tab on alternate nights. Keep that going for a month. Your body may find some mild withdrawals but at most they will be mild.

Next take 2 tabs one night then one for the next TWO nights. Do that for a fortnight or so.

Then drop down to one tablet per night and stick at that for a month.

Then when stabilised take on alternate nights for a month then stretch to 1 tab on then two nights off for a couple of weeks, then three nights off, then 5 nights and finally clear.

Right that is the benzos gone however you will need to take a lot of positive action on the RLS, and whether you want to or not you may have to take something to make sure you don't fall back to the benzo's.

It may help to look at your mind as a bit of an enemy at this stage and not to be trusted. You could even find yourself sabotaging yourself unknowingly so your body can get the benzo - I kid you not.

DIET - off all caffeine - ALL. No alcohol either - 1 it can exacerbate RLS and 2 it can spa your resolve. No sweeteners like aspartame and I would go as far as to avoid gluten too as it is inflammatory. Be very careful with sugar/sweets as they can cause crashes which can instigate cravings. There is lots of info on here about diets - low GI, low sulphate and Food Map are three that spring to mind.

SUPPLEMENTS Many of us get relief from RLS by taking gentle Iron on an empty stomach in the evening due to us poor sods not being able to store iron in our brains to utilise the Dopamine. B vitamins and supplements that help calm the system can be used as your body has become used to the 'calming' effects of the benzo and your system will likely, (but not definitely) be more excited. So anything that will ease it will help - check out natural anxiety relieving herbs and the like.

DRUGS This is an emotional topic but there are a lot of drugs like Gabapentin, Codeine, Lyrica, Targinact and dopamine agonists like Neupro patch which can be utilised. Check out treatment options here:

rls-uk.org/treatment/

Also cannabis can be used for the RLS but depending on where you are and your moral stance it may not be an option. IMHO - no victim no crime so I'd not have any moral objections but the police might not agree with me

MORE DRUGS Make sure you aren't taking things like antihistamines or antidepressants that are making it worse, (do not stop an antidepressant without consulting with your GP - NEVER).

DISTRACTION keep yourself occupied as best you can. Look at this as a time to kick start a new healthy time. Exercise will help the body and keep you occupied. Elisse keeps banging on about sex, (no pun intended ) and I would have to say I agree with her - plenty of sex if you can get it, (mind you that's my motto for life). The closeness is healing and the body produces lots of lovely chemicals that can be very chilling and of course it is distracting. Puzzles, games gardening, you name it if you can focus on it, it is helpful.

HOME REMEDIES Many get benefit from hot baths/showers, yoga stretches, compression socks. I use youtube for yoga stretches that help the sensations and distract too. There are others that will chip in with more suggestions try any and all and see what works.

HAVE A LAUGH It can get very serious and stressful so good comedy and laughter helps lift things and releases endorphins which will help. Again youtube will be a boon here.

Remember you may have not gotten it the first time, but that is down to it not being planned right. There are plenty here that have gone through hell with the RLS and the drugs both taking them and getting off them and they will be only too willing to help you through this.

Final thoughts - you will only be beaten if you stop trying!!

Take care and gimme a shout if you need anything and don't forget to let us know when you get over this and life is good again - I look forward to that post.

[Paul007 in reply to Hidden]

Raffs this message has been brilliant thank you. I'm going to do what you recommend with the clonazepam and I will keep you updated. To be honest I've considered cannabis oil as I really think it would help but getting it is another matter entirely. Didn't know about the iron tablets do I need a blood test first? And any diet information is hugely appreciated. I'll also show the wife the part about regular sex as this is always great medicine 😁. I just want off any prescribed meds as I feel there doing more harm. I spoke to a doctor today who has a RLS clinic and he's pretty local and private so it'll cost but its gotta be worth a try. Thank you again

[Hidden in reply to Paul007]

The iron SHOULD be fine but some, especially those of a Celtic background I think are prone to Iron overload. A blood test can show normal serum, (blood) levels of iron but not pick up on the deficiency in the brain.

I took without getting a blood test but only because I was on Iron in the past and know how my body goes when there is too much. As a short term thing it should be fine.

Fair play in looking to get away from the drugs, they are best avoided imho, even though I take plenty I would rather not.

If you are thinking Cannabis oil there are CBD oils which are legal and if that is the case check out CBDBrothers oils which can be gotten on Amazon. Some get good results from them.

Personally speaking with my foray into Cannabis it was the THC that did the trick for me, however that's where the law comes in and pisses all over our rights to be well!

Take care, and if you manage to convince the Mrs about sex will you email mine and tell her how good it works might solve my problems

All the best.

[Paul007 in reply to Hidden]

😁 I will thanks again

[Hooc in reply to Hidden]

Hi Raffs

Just read your in depth report on rls and want to congratulate you on such an informative and useful piece of work. I am suffering with rls and little sleep but there is a lot in your work that I can take on board.

Thanks

Hoochybaby

[Hidden in reply to Hooc]

You adre very welcome. I have learned a lot, a hell of a lot here and it has made my life much better, might have saved my life!!!!!

aMy change in diet has been the best thing I have done. I miss steak and bacon, no nice lattes either BUT I can sit at peace. I have a quiet body and sometimes am amazed at the peace - its hard to believe that after 45+ years of suffering a change in diet was my answer, I lament the fact sometimes I have suffered so bad, (I bought stuff off the internet to kill myself a fee years ago), and my answer was always there.

If I can hep anyone I am here PM me and I will always answer and do my best to help. This is a great site with very VERY knowledgeable members and if you follow the advice like I have things will get better.

Good luck

[therugo2012]

I has had success with Requip/Ropinirole taking care of my RLS!

[Paul007 in reply to therugo2012]

I got prescribed that but Im done with the chemical solution. I want off chemicals as I believe there's a natural remedy for this

[Hartleyhare2]

Sorry to here it's bad for you at the moment. You have some great replies here so I will just add my little bit.

I believe the heat is making my RLS worse at the moment. My remedy is to have a bath as cold as I can take it with magnesium flakes and soak my legs for thirty to 45 mins. I hate staying in the bath so take iPad in with me and watch something 45 mins long.

I also spray my knees, thighs and calves with magnesium oil spray two or three times a day. I really should do souls of feet as well. I have no idea why I don't! Have not found a magnesium cream yet but that would be great.

I take a magnesium supplement, multivitamin and mineral, extra vit c, D and Vit B Complex with B12.

My Dr has had me on Diazipam 5mg twice a day. This is effective but not a great drug to be on, especially for the years I have. Augmentation has happened but I have resisted asking for more.

I do smoke the occasional cannabis joint and get relief and sleep from it. If I had a reliable supply of it I would use it more. I don't give a fig what the law says. This same law allows me to be doled out morphine tablets, oramorph, tramadol, Benz Ines and strong sleepers. All of which have huge side effects and high mortality rates from accidental overdoses. My wife is an experienced ICU nurse and says cannabis is far safer, the opiates lower respitory system and people stop breathing. Also people medicate with alcohol a bottle of cheap vodka £7-8! Again doing far more damage and none of the healing qualities of cannabis. At the end of the day big pharma and booze companies make vast profits and pay tax. In a caring non money orientated system cannabis is the way forward, hopefully edibles rather than smoked but it does work for any doubters. No one dies from it either and side effects are munchies, sleep and talking too much! Lol

I have heard quinine helps RLS too, via tonic water or tablets from GP.

I sincerely hope you get relief soon. As for coming off, do it slowly even though you want to rush and get it out of you. Eat well, drink lots of fluids. Keep busy even if just polishing shoes, cleaning out one draw. Watch tv, films, listen to music but keep your mind occupied. Be good to yourself, have treats and treat those you love. Remember this too shall pass, it's not forever, there is an end to it. Plot your reduction on a calendar and cross off days and just look how far you have come. You can do it. Be wary of some GPS whose easiest answer is to put you back on the drug you are withdrawing from. Some may offer a short course of Valium to help wean off. I came off Duluxotine at the New Year, three weeks of hell. But it's well and truly out of me and I can look back now and say I had the strength to do that, just as you will.

Patrick

[Paul007 in reply to Hartleyhare2]

Thank you Patrick for the reply. I have a doctors appointment tomorrow and I want to tell him enough is enough with meds I want help getting off this horrible drug. I've had so many great replies and have already learned a lot more on here than from any gp. I do believe meds are an easy option for most doctors but it's their job so I respect that but I want off meds and to start sticking to proper diets and look into this iron stuff. Thanks again

[Hartleyhare2 in reply to Paul007]

Hi Paul, appreciate where your coming from and totally agree. One problem I can see arising is that GPS only know about medication and not alternatives, it's beyond their training. Personally I would find a good Homeopathic practioner locally and use them both in tandem. It's complimentary medicine after all!

I agree the people on this site are a priceless source of information and break things down in a way far more understandable and personal than a book.

I have started a food diary for the first time. I want to see what I'm really putting in my body, not what I think I am! I'm vegetarian, non smoking, non drinking and caffeine free but I'm still overweight. I know my reduced ability to exercise doesn't help. But I must be putting in more calories than I think, portion size and late night snacking when I can't sleep are two areas to address.

Would be grateful if you let me know how you got on at doctors.

Best wishes

Patrick

[Paul007 in reply to Hartleyhare2]

I will Patrick I'll message you when I'm back tomorrow afternoon

[Hartleyhare2 in reply to Paul007]

Thanks Paul.

Good luck mate.

[Paul007 in reply to Hartleyhare2]

Hey Patrick a bit of a mixed message from the Doctor. He's referring me to UCL Hospital in London which has many specialist's in "involuntary movement disorders" which RLS comes under. Apparently I have "Periodic lymb movement disorder" which is another version of RLS and he recommends I stay on the Clonazepam until I've spoken to them. Also there's a Dr Monk in Colchester who is apparently a RLS specialist and after talking to his assistant it seems like a good positive place to go to get help with the Clonazepam withdrawal. If your UK based its worth a look as people who have had a consultation and 3-4 sessions with him which will cost about £300 had there symptoms completely go for around 4 years. And when they noticed there symptoms coming back they went for a top up. Dr Monk has been specialising in RLS for 30 years so I'm definitely going to give it a go. I'll keep you updated

[Kaarina Administrator in reply to Paul007]

Hi Paul, on googling I see that Dr. Michael Monk is trained in osteopathy and acupuncture as well as conventional medicine. He continues in private work since retiring from formal medical practice (which means he can't work in the NHS).

[Paul007 in reply to Kaarina]

I know he's not NHS anymore that's why it'll cost around £300 for the consultation and a couple of treatments. I'm trying to stop all chemicals which is why I want to try his treatment

[Paul007 in reply to Kaarina]

Do you think he sounds like a good idea kaarina, I'd like any input please

[Kaarina Administrator in reply to Paul007]

Hi Paul, I do not know any more than you do about him and his treatments. I was interested to read your posting so delved more into finding out about Dr. Michael Monk and found his website. If you have private insurance/can afford the cost of appointments and treatment and wish to get off medication it may well be worth pursuing.

I take it your doctor is referring you to the UCL hospital as it has a Sleep Centre.

[Paul007 in reply to Kaarina]

Yes my doctor referred me yesterday just playing the waiting game now. The drugs are getting to much for me personally which is why I want to try a few different routes. Had this since I was 6 and I'm 38 now so enough is enough lol

[Kaarina Administrator in reply to Paul007]

I wish you all the best, Paul, do keep in touch and let us know how things go for you.

[Hartleyhare2 in reply to Paul007]

All getting a bit complex Paul! Had no idea different versions of RLS but not surprised as symptoms differ between people. I believe mine is connected to lower spinal operation after parachute accident twenty five years ago. It's been great all this time but the reality is injuries in our youth catch up with us in later life and I turn fifty this year.

Dr Monk sounds very interesting and £300 to rid yourself is well worth it in my opinion. Also us Brits are going to have to get used to paying to see consultants as the government is set on total privatisation of the NHS. No insurance company will touch me with my miriade of problems!

Hope it works out for you Paul and you get some relief.

[Hidden in reply to Paul007]

I have to just say, that RLS is voluntary movement. PLMD is the involuntary movement which happens while you are asleep. RLS is while you are awake. Some people have just RLS some have just PLMD some have both conditions.

[Paul007 in reply to Hidden]

It turns out that I get both.

[Palamino in reply to Paul007]

Hi i have also suffered Rls Rd for over 45 years drives me nuts. Been on all the drugs then u get used to them and they make it worse . I have also discovered Dr Monk and am considering going just wanted some reviews from people that have tried it . If i had it and it worked i would be telling everyone as it drives u crazy . Have u done anymore about it Paul ?

[Paul007]

Sorry for not posting any updates it's been a yo-yo of a time. After advice from BATS which specialise in brain trainquilizers I was told to swap my 1mg of Clonazepam to 10mg of Diazepam. And every two weeks drop 1 mg to start the weaning process. The weekend just gone I did suffer from major withdrawal but it was expected. The plan I've been advised is to go down to 5mg of Diazepam gradually from 10mg as previously explained then stop completely. I'm going back to UCL London on the 27th for a review but to be honest all you get advised is chemicals chemicals and more chemicals and have you tried these pills or these pills. To anyone on here who remembers me my whole issue is the chemicals. I honestly believe they make the condition worse and once your on Clonazepam the weaning process is hell. For anyone who wants off the meds I recommend phoning BATS sorry I don't have the number but Google them as there incredible and go out of there way to ring you for regular updates.

[Hidden in reply to Paul007]

1mg of clonazepam is a fairly low dose. I take .5 mg and have gone on vacation and forgotten to pack and not noticed symptoms of withdrawal. Ignorance is bliss and that combined with a low dose helps. No one ever told me to expect withdrawal. How can you differentiate between withdrawal and the symptoms that drove you to the drug in the first place?

[Paul007 in reply to Hidden]

I can tell you've never had withdrawal. I came off clonazepam to quickly and had a horrible time. If you wanna know about what to expect read about it online there's lots of useful sites. After advice from BATS they said it can take 8-10 months to come fully off all meds and my specialist at UCL said maybe longer. 0.5 which you take stopped helping after about 2 months which is why I went up to 1mg and refused to go higher. I recommend Diazepam instead of Clonazepam as I'm down to 5mg of Diazepam and not getting any rls symptoms and 5mg of Diazepam is lower than 0.5 of Clonazepam.

[Hidden in reply to Paul007]

No, I don't want to read about other people's experiences because then it will lead me to believe that I too will experience the same and so far it seems that whenever I do stop I have no withdrawal such as when I had a very bad flu last month. I had no RLS for about 4 nights (just high fevers) thus no need to take iron or clonazepam, just Tylenol. I know that if I stop the iron and the clonazepam then I will return to RLS and lack of quality sleep - the symptoms that drove me to these substances in the first place. My doctor has told me that the amount of clonazepam I take is equal to a few ounces of alcohol. Some people have a glass or two of wine in the evening and it relaxes them. Others have some scotch. Some smoke pot. If the RLS ever stops for good I will stop taking the aforementioned substances. If I go through withdrawal then I will deal with it at that point.