Where do I go from here?: Hi everyone... - Restless Legs Syn...

Restless Legs Syndrome
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Where do I go from here?

Scattypatty
Scattypatty

Hi everyone, I‘m back looking for advice again before seeing my doctor. A quick update: weaned myself off Ropinirole after augmenting which was horrendous. I was on Co Codamol for a while and then prescribed Pregabalin which didn’t suit me at all so came off it. Went back on the Co Codamol for a while again and was then prescribed Pramipexole by a different doctor, it was only when I got home that I realised in was another DA. Needless to say I haven’t taken them and guess what I’m back on the Co Codamol. My sleeping has been horrendous since before coming off the Ropinirole so I’m desperate for advice on where I go from this. I know from reading this Forum some people go on to try Gabapentin if the Pregabalin hasn’t worked, is this what I should be doing? Or is there anything else. Keeping it together at the moment but not sure for how long. As always I really appreciate any advise.

Can I take this opportunity to wish everyone a Merry Christmas and a peaceful 2020 x

19 Replies
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You could try prescribed codeine (codeine is combined with paracetamol in cocodamol and is the element that is helpful)

Thank you, that is something I had considered.

Hi Scattypatty

When you say pregabalin didn’t suit you at all, what do you mean? There are common side effects with it like dizziness, nausea, water retention, increased appetite and double vision.

If you keep the dose as low as you can ( say 100-150mg) instead of the maximum of 300mg and only take it at night, you can reduce the worst of the side effects.

I found the side effects tough at first but they resolved after 2-3 months.

Gabapentin is not as easily absorbed and has slightly different side effects,

After DAs, there are 3 classes of drugs for RLS. The alpha2delta ligands ( Gabapentin and pregabalin), benzodiazepines like clonazepam and diazepam, and opioids ( codeine, tramadol, OxyContin and methadone).

You could perhaps stick with the pregabalin or, if you really can’t handle the side effects, ask your GP to consider an opioid.

Scattypatty
Scattypatty in reply to Joolsg

I probably didn’t give Pregabalin long enough before stopping it, but the truth is after the trauma of coming off Ropinirole I’m really worried about taking a different drug now. The Pregabalin affected my eyes the most which scared me. I so wish I could manage the RLS without any drugs at all but I know that’s not possible, but every time I read the side effects of different drugs it immediately puts me in panic mode.

Joolsg
Joolsg in reply to Scattypatty

Totally understand. I think I had PTSD for months after getting off Ropinirole. I couldn’t sleep with the lights off for months- I’d wake in a panic.

Pregabalin gave me severe double vision for about 30mins every morning for months.

However, that has now gone. I was on 150mg to begin with ( as well as 25mg OxyContin). I reduced slowly down to 100/75 mg.

I think that if you try it again, start slowly- 25mg every 3 days and titrate up to 150mg.

You could also try raising your serum ferritin above 100 and serum iron above 60. Raising iron levels seems to resolve RLS in 50% of sufferers, so the odds are good.

Withdrawal can last months- ropinirole is very dangerous. Dr Buchfuhrer believes it can permanently damage our dopamine receptors.

I hope you can find something that gives you some sleep.

Dr B also believes the best we can aim for is 90% relief ( although I know some people are lucky enough to get 100%). I now accept that I will have at least 1 hour of RLS in any 24 hour period.

Scattypatty
Scattypatty in reply to Joolsg

Thanks for your reply. I congratulate you for sticking with Pregabalin, I don’t think my mind is in the right place at the moment to take any drug seriously enough, I’m almost dismissing it straight away after reading the side effects associated with it.

Hi, l have had RLS since l was a child and found that NewEra Mag Phos number 8 really helps alleviate the discomfort. I relied on this for years, it was readily available in Holland and Barrett.

Then for reasons l do not know the whole range disappeared and l sought help from my GP.

He prescribed me a drug normally used to treat Parkinson’s, but to be fair it worked and l had no side effects.

To cut a long story short it augmented and neither myself or my GP understood at the time what was happening.

He told me to stop taking the medication and the withdrawal was awful.

With my legs and now arms going crazy we started the crazy gamut of all the usual drugs. I couldn’t tolerate the side effects of any of them and so ended up self medicating as best l could with painkillers.

Fortunately the New Era came back into production and is available via Amazon and l am now back to taking that and nothing else.

I know others have tried it and sadly it hasn’t helped them, but as we know what helps one person, will fail another.

It’s well worth trying the Mag Phos, l did try other forms when the New Era was unavailable, but they didn’t work.

Sorry for the long post, but l hope it gives you another avenue to explore. I count myself very lucky that l have found something that helps me, without turning me into a fat crazy zombie.

Good luck x

Jumpey
Jumpey in reply to Legsandmore

What dose do you take and when please.Glad you've found relief again.x

Legsandmore
Legsandmore in reply to Jumpey

Hi Jumpy, l use about 5 of the little tablets as and when you need them. It’s trial and error to get the amount that works for you. My mom has RLS too and finds she needs to take about 8. I find that if say 6 micro tabs works for you, then taking more doesn’t improve things and just uses up the pot quicker.

They are tiny little tissue salts and taste like very mild icing sugar.

They dissolve in the mouth and so you don’t need liquid to take them, but you can wash them down with a drink if you like.

With me it usually takes about 15 minutes before my legs settle down.

I only take the Mag Phos when my legs start up.

It’s not intended to prevent the RLS kicking off, but to stop it when it does.

It’s the only way l can fly any kind of distance and you don’t need to worry about legality, as it’s classed as a food supplement.

Each pot contains approx 240 micro tabs and costs vary, but expect to pay about £10 or less.

Hope that helps x

I’m definitely going to try this. This is the sort of thing I’m looking for and I hope I’m lucky enough for it to help me as well. Wish me luck. I’ll keep you updated. Xx

Give it a go you never know if you hit lucky you can help ease this awful affliction without resorting to opioids or DA’s.

Please let me know how you fare.

Wishing you luck

I second everything Jools says. It took several weeks for the side effects of Pregabalin to settle down but I’ve now been on 150mg for 16 months and have my life back. I’m prescribed eye drops as my eyes are drier as a result of the drug otherwise all is good. All drugs have side effects and unless they are horrific you have to give them a chance to work. Good luck

Pam

Scattypatty
Scattypatty in reply to Pam34

Thank you for replying, as I’ve previously said I don’t think I have the right mind set to try any strong drugs at the moment. I hope I’ll have a more positive attitude soon. X

I find that tramadol helps.It"s a stronger opioid than codeine.Good luck.x

Thank you, I will bear that in mind x

I have found that taurine is helping me sleep. I take 1000 mg an hour before bedtime. This supplement was prescribed to me by a naturopath in the spring. At first I got 8 hours of sleep, now only 7. I also have to completely avoid refined sugar and alcohol.

That's another one I will be definitely be trying. Thank you very much x

Have had RLS for about 25 years. For most of those years I was on ropinirole, going from 1mg to 3mg now. I started having symptoms during the day (probably augmentation) but I was not familiar with that condition at the time. My wife was at a retirement home when she heard one of the residents mention how her doctor had recommended compression socks for her RLS. My wife mentioned this to me and I proceeded to order compression socks (SB SOX) on Amazon.com. When I got them I immediately put them on and felt immediate relief. My legs felt fresher, less tired. I also found my RLS symptoms leaving during the day. Though they only recommend wearing the socks during the day, on taking them off, it seemed that there was a residual effect that went into the night. I am still on 3mg of ropinirole but I now, usually, have a good night's sleep. The socks are not a cure but they might help. They cost about $15 a pair.

Scattypatty
Scattypatty in reply to dklohrey

Thank you for that information, it is something I have considered before but never got round to, but I will try anything once.

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