What are you taking for sleepless nights

[Runedrun26]

I’m 73 and I would like to communicate with anyone who has restless leg syndrome

[Hidden]

Good (early) morning Runedrun. Or evening depending on where you live.

Welcome to the forum. I hope you find it helpful.

[Runedrun26 in reply to Hidden]

Ropinerole helps so far thank you for touching base with me.

[Hidden in reply to Runedrun26]

Glad the ropinirole wotks. Where do you live? UK?

[Runedrun26 in reply to Hidden]

Fruita co

[Runedrun26 in reply to Hidden]

Long live the queen

[Runedrun26 in reply to Hidden]

I swear by manerva,I think we are all so lucky to have her connected with us.

[BTABKWJ4561]

Hi yes I get RLS pretty bad for the last 6 years. Iam76 now and I take 6mg of. Ripinarol slow release which work on and off

[Hidden in reply to BTABKWJ4561]

You are taking in excess of the maximum recommended dose of ropinirole for RLS. The extended release version especially in doses above 4mg is usually prescribed for Parkinsons'disease.

Since you say it works on and off, then you may be suffering dopaminergic augmentation caused by the ropinirole.

[Dizzydisturbed in reply to Hidden]

.10mg Ropinirol I mean

[Eryl]

I'm controlling my diet and rarely have sleepless nights. You should be aware that insulin drives the cells of the body to consume blood sugar in order to keep it from getting too high, therefore by avoiding sugary or starchy meals and snacks late in the evening insulin levels will drop before you get to bed. I would suggest not eating sweet or statchy foods after 8 o clock, especially wheat based snacks like biscuits or toast as the gluten causes fast absorption and causes an insulin spike.

[Runedrun26 in reply to Eryl]

I will try this thank you

[Pagan707]

I haven’t found anything that works but I know my sleeping tablets don’t help.

[Runedrun26 in reply to Pagan707]

I take trazodone 50mg it helps after warm bath. Goof luck

[Pagan707 in reply to Runedrun26]

Thanks I will look this out, 50mg sounds a strong dose. I’m on 10mg of zoplicone and it does nothing.

[SueJohnson]

ropinirole is likely to lead to augmentation so is not recommended. I take 800 mg gabapentin and no restless legs and sleep thru the night.

[Dedou in reply to SueJohnson]

I'm waiting on some to be delivered. Glad to know it's helping you!

[Runedrun26 in reply to Dedou]

Hope it works for you good luck

[Dizzydisturbed in reply to SueJohnson]

I’m taking 0.8 mg Ropinirol and Gabapentin every day which work really well together. But yes my RLS has actually got worse so symptoms appear earlier and early in the day so I have to take them pretty quickly then wait for half hour or so for them to work. Tnite I ran out of both and arms, legs, body all squirming so I’m stretching, thumping my body with whatever I can find... not working. Banging feet against floor now to stop that horrible twitching and jumping. Again not working. I hate this

[Runedrun26 in reply to Dizzydisturbed]

I’m taking 2mg of ropinerol at night after warm bath

[Runedrun26 in reply to Runedrun26]

I’m taking 2mg of ropinerole at night after warm bath and 50mg of trazodone that’s it

[Hidden in reply to Dizzydisturbed]

What dose of ropinirolr are you taking?

0.8mg is a very odd dose as doses usually come in multiples of 0.5mg.

If you're taking 10mg, this is 2.5 times the official recommended dose.

From what you write, it is almost certain you are suffering dopaminergic augmentation caused by the ropinirole.

The best treatment for this is to start reducng the dose of ropinirole and eventually stop it. Reducing the dose of a dopamine agonist such as ropinirole causes withdrawal effects which can be lessened by reducing the dose in small steps.

If you're currently taking 10mg, you may try reducing the daily dose by 0.5mg once every 2 weeks. If withdrawal effects are too severe you can either stay on the same dose for longer than 2 weeks until withdrawal effects settle down. Or you can reduce the dose in smaller steps.

When you get down to about 4mg you may find reducing in steps of 0.25mg better. Again every 2 to 4 weeks.

At the same time you may try increasing the gabapentin. This depends on what dose you're currently taking. It can be increased up to 2700mg, but in practice, there's no benefit in taking more than 1200mg.

As you reduce the dose you will find the augmentation decreases.

If you don't reduce the dose of ropinirole, your RLS will carry on getting worse.

Please read this

cks.nice.org.uk/topics/rest...

You may also refer the person who prescribed you 10mg of ropinirole to this

cks.nice.org.uk/topics/rest...

EVEN if you're not taking as much ropinirole as I'm assuming, you are still suffering augmentation and you will find things get better by reducing and stopping it.

[Dizzydisturbed in reply to Hidden]

Hi okay just looked again - I take 3 Gabapentin (more if needed) and 2 Ropinirol 0.5 mg each, so just 1 mg I guess in total. Yes what you say about augmentation is true, I was on just one Ropinirol (about 4 or 5pm) but wore off later in the eve so now take 2. Ran out last night, only one pill, terrible state, legs and rest of body wriggling about, that horrible squirmy feeling you can’t get rid off, despite massaging and thumping body everywhere. So took 4 promethazine which knocked me out. Now midday and just woken up very wobbly and down.

[Hidden in reply to Dizzydisturbed]

Phew, 1mg is a more reasonable dose than 10mg.

However as I wrote, you are suffering augmentation, so really it's best to stop taking the ropinirole.

When you say "3" gabapentin, I presume you mean 3 X 300mg, not 3 X 100mg. 300mg is not enough.

You're lucky the promethazine knocked you out, but it sounds like you took rather a lot to do this.

Also note that it's a sedating antihistamine and these are known to make RLS worse.

I'm sorry you ran out of ropinirole last night and only took one pill. This in effect halved your dose. What you experienced as a result is withdrawal effects.

In which case when you start reducing the dose, I suggest reducing by 0.125 mg at a time. Otherwise you're going to find it horrendous.

I wouldn't advise the promethazine.

If you need something to help with sleep a benzodiazepine or "Z" drug would be better.

[Dizzydisturbed in reply to Hidden]

Yes 3 x 100mg or more if I need. I can’t just stop taking Ropinirol, they’re the only thing that stops the damn wriggling throughout my body. Specialist prescribed these. What I’ll do though is try and stick to one Ropinirol and take more Gabapentin when it gets really bad. Thanks for your advice

[Hidden in reply to Dizzydisturbed]

3 X 100mg gabapentin is not enough. The typical minimum effective dose for RLS is 900mg.

I don't wish to be offensive, but I repeat, you are apparently suffering augmentation. This is caused by ropinirole.

In this case ropinirole is making your RLS worse, not better.

If you wish to improve your symptoms, stop taking the ropinirole.

Specialists do prescribe ropinirole, but what they fail to do is warn you of its major complication, e.g. augmentation.

I suggest you read this

sleepreviewmag.com/sleep-di...

[Tanker1 in reply to Dizzydisturbed]

I’ve found that i can cut back on ropinerol if i take more gabapentin. I currently take 1200-1800 mg of gabapentin and 0-0.5 mg of ropinerol. I start with 1200/0 and take more if i need to. I have no idea why some evenings are worse than others. I keep an extensive journal and very little correlates with my problem.

[fishinphil1946 in reply to Dizzydisturbed]

When my feet are driving me nuts, I try a pair of compression socks. I use a device called a Sock Slider to get them on and use my wife or a long shoe horn to remove them. My worst days twitching seem to be associated with a poor nights sleep and a tiring, active day. I agree with Runedrun26 that 50mg trazodone can help me get more sleep. I am 75 and slowly reducing pramipexole from 2mg/day to 0. I gained 60 pounds (129KG) since taking pramipexole. After 5 weeks I am experiencing a definite reduction in compulsive eating. I take 1200mg Gabapentin/day. I had a ferritin test in 2012- 340, but it was done about 3 months after bladder cancer surgery and while I was being treated for the cancer. I need another ferritin test (iron).

[Josana13 in reply to SueJohnson]

Hello SueJohnson, May I ask, how long did it take for the Gabapentin to help you?

[SueJohnson in reply to Josana13]

I was on 600 mg for months, but it did not help. I first increased to 700 mg for 3 days but it didn't help. When I then increased to 800 mg it worked the first night.

[Josana13 in reply to SueJohnson]

Thank you

[Madlegs1]

I tend to read back all the historical posts on this estimable site. Usually get to deep sleep (coma?) after about 3 hours.!🥴😜

[Hidden in reply to Madlegs1]

Just read my comments only. Guranteed soporific. I can put people to sleep whilst still standing!

I could write more - - - -

[Josana13 in reply to Hidden]

I doubt that, Manerva, your comments are so crucial that I copy every one of them so I could read them several times. I thank you for your time and the help you provide all of us. May God bless you always.

[Allyp69]

I am 74 and have tried various sleep aids over the years...(Best to avoid prescription drugs, in my opinion eg Zopiclone.)..I try to vary them.. Valerian, Night Time 5- HTP, Melatonin ( has to be ordered from US) and CBD oil drops. If possible I take nothing some nights but wear copper bracelets.Alcohol, caffeine, sugary drinks all trigger RLS for me.

I have had a mini trampoline for the past year and try to use it once a day...not at bedtime..also exercise bike.

Think we agree that exercise last thing is no help...

Any type of boredom in the evenings is also bad for me...but I don't have the energy to be on my feet all day...

Hope this helps...

[Runedrun26 in reply to Allyp69]

You can do exercises sitting down all sorts of stretches

[Hidden in reply to Allyp69]

Melatonin can make RLS worse as it can lower dopamine levels. Any over the counter sleeping aid which contains a sedating antihistamine can make RLS worse.

I believe valerian is OK.

Some CBD oils may work, it just depends what's in them.

[Tanker1 in reply to Allyp69]

I find exercise helps me a great deal. My doc warned me that too much would make symptoms worse but this has not been my experience. For me more is better. I get the best sleep after hiking or skiing all day. But everyone is different.

[Goldy700]

I take CBD oil prescribed by my doctor. It is 100mg per ml so I only need at take 0.3 of a ml to hee Er Lo me get to sleep. It blunts the RlS and I could take a stronger dose but ok at this point. I find I feel great the next day and with the CBD you can drive and non psychoactive. I also have oil that is 1/2 THC which is stronger bit mostly in as m good with pure CBD - it is very sedating. Good luck

[Runedrun26 in reply to Goldy700]

What brand cbd oil do you take

[Goldy700]

I take Althea - Capilano - 1ml is usually enough - THC/ ThCa 9.91 mg/ml CBD/CHDa 12.65 mg/ml. I also get relief from CBD only oil prescription strength Cannatrek 100mg per ml. I find the THC:CBD mix a stronger but I like to take a break from THC if I have to drive so will take the Cannatrek. You can get stronger prescriptions if you have really bad RLS. Some doctors will prescribe the oil with a vaporiser. A vaporiser has the advantage of giving you instant relief whereas the oil taken orally takes a few hours to kick in - but lasts all through the night. I might add I think there are many good standardised oils available - I have only tried the above. This is a good site for reviewing the various oils available.cannareviewsau.co/verifyEmail

[kathmax]

I’m also 73 and suffer with it had it for over 30 years