What next!: Having suffered for 4... - Restless Legs Syn...

Restless Legs Syndrome

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What next!

Tuccatoo
Tuccatoo

Having suffered for 40 years and tried most things I am now just on 30ml Codeine and totally exhausted with lack of sleep as it doesn't really work.

I've been reading through all the wonderful advice about medicine to help RLS, concluding that Tramadol or Medical Cannabis is the best next step?

Maybe Joolsg or Manerva could advise me as to whether Mirtazapine (which the doctor has offered for sleep) is not a good idea. It is an antidepressant and I gather they have an adverse effect!?

Many thanks in advance

44 Replies

Do NOT try mirtazepine!

Trazodone can help sleep and is not as likely to make your RLS worse.

Tuccatoo
Tuccatoo in reply to Manerva

That is fascinating! If they are both antidepressants why is one OK and the other isn't? Sorry bit ignorant and would love to know. Afraid I trust fellow sufferers more than doctors as they don't seem to have a complete handle on RLS!

Manerva
Manerva in reply to Tuccatoo

Most antidepressants make RLS worse. Mainly these are the SSRI and tricyclic antidepressants. Mirtazepine isn't one of these but is well known to make RLS worse. Trazodone isn't one either and is commonly known among RLS sufferers to be less likely to make RLS worse. Bupropion is another, but isn't as acccessible depending where you live.

Trazodone isn't particularly good for depression, but is better where sedation is needed i.e. help sleep.

Tuccatoo
Tuccatoo in reply to Manerva

I don't need it for depression. I just need sleep! I rarely get more than an hour when RLS kicks in and I have to get up and walk around for an hour. I would just love to sleep for 2 or 3 hours at a stretch which is rare.

Manerva
Manerva in reply to Tuccatoo

Trazodone might help then.

Opioids can help with RLS if you can get a prescription. NeitherCodeine nor Tramadol are the best, not being potent enough. People seem to find best results forma low dose of a more potent opiod, commonly oxycodone, methadone or mre recently, buprenorphine.

joepublic
joepublic in reply to Manerva

I recently started taking Targinact which is a low dose opioid combined with a laxative. GPs can't prescribe it as it's on their banned list, but you can get Oxycodone on its own & take a laxative. Sleep is much better - maybe 5-6 hours a night now. It is early days though.

I agree with Manerva. No idea why Trazodone & Wellbutrin are safe- maybe they latch onto different receptors in the brain.

Many people report that they never had RLS until being put on certain anti depressants & even when they stopped taking them the RLS remained.

I suspect it’s a form of epigenetics- a gene or receptor is switched on or off by the drug resulting in a permanent change.

More money for more research is so badly needed.

Amrob
Amrob in reply to Joolsg

That was certainly my experience. I first experienced restless legs when taking an SSRI more than 20 years ago. Never taken one since but the RLS remains!

Joolsg
Joolsg in reply to Amrob

There’s definitely a link.

Codeine does seem to lose efficacy faster than other opioids. Tramadol is the only opioid known to cause augmentation so perhaps OxyContin or Buprenorphine or pregabalin would be better options as the next step.

I really feel for you not getting more than an hour of sleep Tuccatoo. Sooo hard. Jools and Manerva have given great advice.

Pregabalin can be really good, as can Oxycodone and Buprenorphine. It's finding something right for you. Finding a doctor who is willing to prescribe is important too. I think lots of people in our community find that if they do their research and go to their doctor with a request, backed up with documents or even stories from people on here, they often are willing to prescribe.

Good luck, keep us posted.

Tuccatoo
Tuccatoo in reply to Sampsie

Thanks, I don't know what I would do without this forum. It's so helpful. It was 4 years ago when I was totally desperate and stumbled on it at 3am in the morning. Doctor didn't understand augmentation and was increasing my dopamine antagonists!! It was hell coming off them but so glad I did. But now it is a case of how do I cope with so little sleep and what is going to help. 😊

Joolsg
Joolsg in reply to Tuccatoo

Medical marijuana in the form of cannabis oil with 20% THC (now available in the UK) has really helped my sleep. It works 2 hours after ingesting & puts me in a deep sleep & the RLS then doesn’t wake me until 4 hours later.

Pregabalin is also sedating & can help with sleep. A combination of a low dose opioid & low dose pregabalin would probably be the most helpful combination for you.

Have a chat with your GP & see what happens.

Ranjits
Ranjits in reply to Joolsg

Many problem is constipation with codiene

Joolsg
Joolsg in reply to Ranjits

Take magnesium citrate at night,solves opioid induced constipation & helps relieve RLS for some people.

Ranjits
Ranjits in reply to Joolsg

Thanks very much I am so greatful to all of you this is really very good forum wonderful people since last year this forum help me a lot One more thing I want to ask I also got like ants crawling under my feet is this RLS as well .? Sometimes sole of my feet burn

Joolsg
Joolsg in reply to Ranjits

Very probably. A lot of people with RLS also have peripheral neuropathy which causes burning sensations & pins & needles.

Augmentation worsens all the sensations and should reduce once you’re off all dopamine agonists.

sudokufan
sudokufan in reply to Joolsg

Can I ask where you get the legal cannabis oil you describe? Is this only available via prescription? I have tried marijuana but it's difficult to know the best type. Any advice would be much appreciated.

Joolsg
Joolsg in reply to sudokufan

There are now several private clinics offering medical cannabis in England. I use twenty21. Initial consultation is£99 &

Cannabis oil with THC is £150 for 100ml. I use 0.3ml -0.5ml a night so it will last me around 250 days. Under £1 a day.

Your GP or neurologist has to write a letter/report confirming your conditions & medications . Ask for the pain doctor rather than the neurological doctor as the waiting list is shorter & he understands the link between pain meds & RLS.

drugscience.org.uk/project-...

sudokufan
sudokufan in reply to Joolsg

Thanks Joolsg. I'd looked at Project21 before but don't quality, I have RLS but not MS or any of the other listed disorders. I don't think my GPs would support it anyway - of course I never even see them these days! Thanks anyway and good luck.

Joolsg
Joolsg in reply to sudokufan

I still think you should apply. RLS is similar to pain - if you apply I bet you’ll get it. There are others who get it for sleep. The doctors prescribing are helpful. Speak to your GP & explain you want it for ‘pain’ and sleep & your GP lists all the meds you’ve been taking.

Sampsie
Sampsie in reply to Joolsg

At my clinic, to get round me not having MS or the other things listed, they put me down as having anxiety as you can get it for that. The doctor knew it was for RLS, but he said it was a tick box exercise. Then he put sleep and RLS as the secondary reason.

I also had to prove that I had tried other prescription medications for pain of anxiety, so I sent in photos of Gabapentin, Tramadol and Pregabalin. That qualified me.

Joolsg
Joolsg in reply to Sampsie

Exactly- another area where RLS isn’t taken seriously. If you can get it for MS you should definitely get it for RLS.

sudokufan
sudokufan in reply to Joolsg

Thanks again. I'm impressed that you have a good relationship with your GP. My group practice is ok, but it isn't easy to speak to a doctor during this pandemic. I'm always asked to fill in one of those darn e-consult forms and get a text in reply. So if I have to get a GP to do this for me, I think it will be too difficult at the moment. I'll keep it in mind though. I'm also at the moment trying to come off Rotigotine due to the patches causing skin irritation so I've all sorts of things on my mind I guess! I'm sure it's better to use legal drugs though, so I'll keep your advice in mind. Best wishes.

Joolsg
Joolsg in reply to sudokufan

I have never seen the same doctor at my surgery & didn’t tell them about applying for cannabis but the receptionist rang me to ask about payment for the GP letter & I directed her in what I wanted in the letter- stress the sleep problems & that RLS is similar to pain & similar meds work for pain & RLS. I think the fact I had been on Ropinirole then tramadol then Gabapentin & finally OxyContin & pregabalin helped more than anything.

Do not give up- send a detailed email to the surgery & I bet they are helpful 🙏

I haven’t seen a GP in nearly 2 years.

sudokufan
sudokufan in reply to Joolsg

Aah - thanks for your patience. I've had another look at the link you gave me and realise I didn't understand how to get started - just had another look and think I understand it better. So I need to do something first - ok. I totally agree RLS is a VERY bad form of pain, and I've found problems with Ropinerole, Rotigotine, (currently weening off the latter) and now don't seem to be able to sleep on Pregabalin (though I'll persevere a bit more yet). I'm REALLY short of sleep at the moment so will have another look when I'm feeling a bit more human again. Once again, many thanks Joolsg.

If sleep is the main problem and apart from RLS, oxycodon may not be the best treatment. Opioids are known for their insomnia inducing ability. But they are usually very good to control RLS. Maybe a combination of very low dose opioid (if you can get it) combined with cannabis, pregabalin or a more innocent substance to help you sleep may be your best option. As always, hard to be specific as WAAD we are all different.

Codeine you can sleep nicely but it got side affects like constipation do you know any other painkillers which don’t give constipation please tell me I Amon Rotingine patchs but it’s not helping don’t know what to do

Joolsg
Joolsg in reply to Ranjits

The rotigitone patch causes augmentation quickly- especially if you’ve been on other dopamine agonists before.

The only solution is to reduce the dose over a minimum of 3 months.

Then the codeine (with magnesium citrate to reduce constipation) may help better. No meds will work properly until off dopamine agonists.

Read all the posts on Augmentation.

You can ask for smallest dose patches or cut them ( many people cut them even though the leaflets warn against doing this).

Ranjits
Ranjits in reply to Joolsg

Thanks

Hi.I moved from codeine to tramadol and the latter works for me. Periodically it stops working due to tolerance and I take a month drug holiday and it kicks back in again. I have no personal experience of antidepressants but I understand that trazodone,serzone, and wellbutrin are considered safe options by Dr.B.Good luck.xx

Tuccatoo
Tuccatoo in reply to Jumpey

Thank you so much for your helpful comments and advice. I really do appreciate you ALL. I have a very understanding Doctor who is happy to listen to the information I have gleaned from you and we have decided to increase the 30ml Codeine to 60ml for the moment, switching to Tramadol if I begin to tolerate Codeine. He was also keeping an open mind to Medical Cannabis should I become desperate again!!

Thanks again for your help

I would suggest to start at the beginning - checking your Ferritin levels for your iron status. It is of course no guarantee that raising iron levels will alleviate your RLS, but RLS is really 2 things - the horrible need to move your legs and an associated insomnia.

I’m in the same boat as you. Having a really bad resurgence. Haven’t slept in days. It won’t let me sit or lie down. Only stand. Sometimes I’m so tired I fall asleep standing and catch myself as I’m falling. My neurologist just switched me from Mirapex to Ropinerole bc I was augmenting on Mirapex. I am beyond miserable. At first he added klonopin but that didn’t help. Then he added Tramadol. Nope that didn’t help either. Don’t know what to do

We can all empathise with you. Unless you suffer from RLS you can have no idea what it is like. Hang on in there and read through the wonderful advice from this Forum. It was here that I first learnt about augmentation having tried all the Dopamine agonists. Withdrawal was hell but I am glad I did it as I couldn't even sit down in the day time! Big Hug

Joolsg
Joolsg in reply to Averys-meema

Get off all dopamine agonists & sack your neurologist.

The ONLY solution to augmentation is to reduce the DA very slowly over a minimum of 3 months.

Raise serum ferritin above 100 & ask for replacement meds like pregabalin or Gabapentin or a low dose opioid.

Read all you can because it’s clear your neurologist is not an expert in RLS.

We have to do out own research & present ‘evidence based research papers’ to our GPs to get anywhere.

Tuccatoo
Tuccatoo in reply to Joolsg

Well said Joolsg!

Hello I was on Pramipexole too, and augmented. The doc then changed me to ropinerole, but it augmented on me within a month. I had the hell of coming off mirapexin, and then the double hell of coming off the ropinerole. I am now taking, iron tablets, magnesium, and vitamin D, besides gabapentin, codeine and Tramadol. I, m hoping to be able to cut down on the opioids, as my iron levels improve, but can't do so at the moment. I am in a much better place, but it hasn, t been easy. Good luck. You will improve, but it takes time.

I hope that doesn’t happen to me. He increased the Ropinerole and increased the klonopin. When I went to him I had hopes he was going to wean me off the Mirapex . Instead he just switched me to Ropinerole. Was very disappointed. He mentioned something called a neuropatch. (May have gotten the name wrong but something patch). Does anyone know what that is?

In my experience I can only re-iterate what Joolsg said a couple of days ago. Before I found this forum my doctor took me down exactly the same path. Miapex-Ropinerole-Neuro patches. In each case they initially made things better but ultimately made RLS much much worse. I am just so glad I took the very difficult decision to come off them. I suggest you read all the advice from other well informed sufferers on this site and then discuss it with your doctor.

Joolsg
Joolsg in reply to Averys-meema

Yet another dopamine agonist which will quickly cause augmentation. I despair of the lack of knowledge & ignorance amongst neurologists.

He clearly is not an expert & will just prolong your agony.

The top RLS experts say their main problem is dealing with the mess caused by ignorant neurologists over prescribing dopamine agonists & failing to recognise & treat augmentation.

Please don’t take Ropinirole/pramipexole/neupro/rotigitone patch & slowly reduce over 3 months & research alternative meds like pregabalin/Gabapentin/low dose opioids.

Codeine is measured in mg, not ml. For me, 30ml of syrup would be 60mg of codeine. Do you take it all just before going to bed? I never use more that 24mg of codeine. When that loses efficacy I spot using it for 2-3 weeks and then efficacy returns. The first day that I restart it does not work so well, but after that is does. I usually start with 16mg and work my way up to 24mg when efficacy declines at each level. As long as I climb 128 steps 2 at time each night, I can usually sleep about 6 hours before my legs get me up. By the way, when I stop using codeine I decrease the amount by 6mg per night because at one point I started getting chest pains when I stopped immediately.

Tuccatoo
Tuccatoo in reply to davidadill

apologies my mistake mg not ml

Ever since I started on weed I have left all other opioids.

I have suffered from addiction and just sticking with weed now.

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