My rls is now so severe my insomnia is worse than ever
I’m still awake at 3 and 4am.
The last time I spoke to my neurologist she suggested Rotigotine patches or ropinirole tablets but I refused because of my fears of augmentation
I now am thinking maybe I should go down that road but with caution
I do need help with deciding
I currently take 150gm on Pregabalin and 60gm codeine nightly but this doesn’t help anymore
Any help woebegone appreciated as I’m getting desperate
Oh no, You have been badly let down by your doctors. I recall they refused to consider helping you by prescribing stronger opioids because of your age. That is so ridiculous. There are people on here in their 80s suffering terribly with severe augmentation of RLS symptoms on dopaminergic drugs and they will have to go through the horrors of withdrawal to get relief with a high risk of fractures when they fall over from exhaustion.Targinact is available for RLS and is mentioned by NICE as being effective for RLS and more doctors are now prescribing low dose Buprenorphine. One lady of 85 was prescribed it in the UK recently.
I honestly think you should go back to your doctors, face to face with someone to help argue your case. If they're not doing face to face appointments, write everything down and keep a detailed diary of your symptoms and how you feel hour by hour.
Send it to your doctor with a request for either Targinact, 10mg at 10am and 10mg at 10pm or Buprenorphine 0.2mg starting dose at 10pm, rising to 0.4mg if ineffective.
It's unacceptable to let you suffer every night like this.
150 pregabalin is still a low dose. I would suggest increasing it. I am on the equivalent of 250 pregabalin.
See my reply to Munroist
In don't see any reply from you to Munroist. id you mean your reply to Hoochybaby?
Siorry, I hadn't clicked on reply to Munroist. I have now.
This is what I wrote
"Sadly for hoochy, higher levels of pregablin are out of the question."
I see now checking her previous post - she can't take more because of heart palpitations.
Have you had your iron status checked? It was a big game changer for me - almost overnight! It took care of the severe RLS symptoms - but alas - not the protracted insomnia as last night was testament to.
I rarely reply to you anymore as I'm very much aware of the troubles you have and can't really help.
All I can offer is my continuing sympathy and concern for you.
I appreciate it's difficult to see a doctor and get thm to even listen to your case.
I agree with Jools and I also suggest you contact an Independent Advocacy Service. They may provide you with an advocate who can go along with you to an appointment and support you or even speak for you.
If you have difficulty getting an appointment, saying you have contacted an advocacy service may speed things up.
It is a long and weary road trying to get attention for this especially at the moment. I have taken Ropinerole for over 5 years now. I take 3 mgs a night which generally manages it enough for me to get to sleep. It is not a nice drug but better than some I think.
Whether it's better than some other drugs depends on what other drugs you're thinking of or tried.
There are better drugs than ropinirole.
After being on 3mg for 5 years I am guessing that ropinriole has come to the end of it's usefullness for you. In fact it may be causing you more problems than help. It only "generally" manages for you. I suspect this won't last.
Before you were started on ropinirole, your doctor should have taken you through the "General Considerations" for RLS treatment, which should always be considered for ALL RLS whether drugs are prescribed or not. In some cases dealing with general considerations may even avoid the necessity for drugs in any event.
I'm sure this was what happened in my case. General considerations were ignored and I believe if they hadn't been, I may never have started on a "dopamine Agonist" (DA) such as ropinirole. In my case pramipexole. This may have caused me years of unnecessary suffering.
This ws also because I was never informed of the major complications of taking a DA, which are augmentation and Impulse Control Disorder (ICD). I never suffered an ICD, but I did suffer augmentation for years, not knowing about it.
DAs are no longer recommended as the preferred first drug for RLS because of their high risk of augmentation and risk of ICD. Both life changing conditions.
The first drugs recommended for RLS are Pregablin or Gabapentin and in the US, gabapentin enacarbil.
They are the first for 3 reasons, 1) they don't cause ICD and have a low risk of augmentation 2) If you use a DA first and it fails due to augmentation then using a gabapentinoid following that may not work. However the other way round is OK. 3) Gabapentinoids are as equally effective as DAs for RLS.
see this link
pubmed.ncbi.nlm.nih.gov/274...
I suggest you read up about augmentation and if the ropinirole is even beginning to fail, before you even suffer it, you wean off the ropinirole and start taking a gabapentinoid. This is both a way of preventing augmentation and a way of treating it.
The "General considerations" for the management of RLS no matter what stage you're at are these
1) Iron therapy is a fundamental treatment for RLS. Drugs only relieve its symptoms.
2) Identifying "aggravating factors" and eliminating them if possible can at least help if not entirely eradicate RLS.
See this link
pubmed.ncbi.nlm.nih.gov/274...
It's just an opinion, but the main reason that so many people suffer with RLS is ignorance.
You'd expect doctors know about RLS, but generalky speaking, they're ignorant.
As long as we ourselves, as RLS sufferers remain in igorance the poorer the outcomes will be.
This site can be brilliant for informing that ignorance.
Read the pinned posts and as many of the members posts as you can. You will see how prevalent these things are
1) the ignorance of dotors and specialists, general considerations and drugs.
2) the extent to which people are misinformed about DAs
3) How may people suffer from augmentation and ICDs and how this affects them.
I hope you find this informative
I didn’t really find pregabalin effective until I was taking 300mg a day.
I have taken Ropinirole for nigh on 15 years with a daily dose of 4 mgs S/R and another 2 mgs as and when necessary with the option of increasing to an extra 0.5 if necessary. I also take Gabapentine 300 mgs am and pm. Rotigotine patches I augmented on within 10 days. Until now Ropinirole and Gabapentin have managed the symptoms well with the occasional blip.
I am fortunate in having a GP who understands Rls; she also referred me to a Neurologist with a real knowledge of the condition.
I do have the broken nights sleep at times but nowhere near what some seem to experience.
I wouldn't presume to advise you as to what you should try, that can only be your decision, all I can say is the above has worked well for me and I hope it continues.
I wish you well and hope you find some relief.
How much ropinerole are you taking
4mgs slow release daily and a further 2 mgs daily with the option of increasing if and when I need it.
I am on 300mg prebagalin and my rls seems to be better. ( not completely) Maybe your dose is a little low. However I'm new to it, so there may be a reason for your doctor not increasing it
I have been on Ropinirole for years and have found that I take a low dose … I cut 0.5mg in half and I take as needed … instead of raising the mg I do better to just keep the lowest dosage possible in my system. I have had RLS as long as I can remember and I am 72 now. I have tried everything and anything. I also take 1mg of Colonzapam at night . Most days I can control pretty good like this and there’s some days that I need a little bit more. I figure if I cut pills in half I can take them as needed better than adding more mg. I hope this helps you. I’ve read that the effectiveness of the Ropinirole is about 6 hours. Most days I don’t need to take one 1/2 until mid afternoon and other days I need it earlier and then I have days that it’s early evening and I realize that I didn’t take any all day. Sometimes the 1/2 Ropinirole with the 1mg Colonzapam will work for me all night pretty well and there’s nights I have to take another 1/2 of Ropinirole to stop jerking. My theory is less is more and the key is to keep a low dosage in your system. I seem to be able to manage this way rather than trying different drugs and the stress of getting used to whatever side effects everything has!! This is a horrible way to live and I wouldn’t wish RLS on my worst enemy!! It’s definitely a life sentence and I don’t think it ever goes away. I know myself that I have suffered from it as far back as I can remember.
Many thanks for your informative reply Because I had bad reaction to a DA -pramipexole I have been frightened of suffering augmentation again hence my reluctance to take ropinirole
My problems started approximately 10 years ago when I started taking a beta blocker for a irregular heartbeat and my restless legs got steadily worse
At first I didn’t have a clue about rls I thought it was something that would jus go away and my GP at the time was just as ignorant
Over the years I’ve had just about all the available drugs and seen neurologists on the nhs and privately as well as a few quack doctors who have willingly taken money from me!
Insomnia is my worst enemy walking the bedroom floor til 4am is no joke but night after night it’s the only way I can get by.
Dear Hoochybaby, It all sounds horrible. My experience with the dreaded RLS is to go back to the drawing board and look at my triggers, in particular at what I eat. I occasionally make a diary of this and look at the days (or rather nights) when I am better or worse. I find most processed foods do not agree with me so I go back to simple food, fish, meat, vegetables etc. and cut out all shop bought biscuits, cakes, sauces, spicey food, mayonnaise, everything with high sugar content, some fruits such as apples, banana’s, pears, apricots, grapes, melon, strawberries, onions, garlic etc. It is all rather boring but it helps me. I like spinach and Bournville chocolate and actually if you think about it, they contain iron so can’t be bad. Simple home made food is best for me. Maybe take a look. Take care and sweet dreams.
I totally understand what you are going through and it’s HELL!! I have tried everything like I said and all medications have just a different side effect from one to the other. Ropinirole has been my best solution over the years but most doctors want to keep raising the mg but I have found it works best for me to just keep as low a dose as possible in my system. Best of luck to you I hope something works out for you and you can get some relief.
I wouldn't advise ropinirol or any other drug prescribed by your doctor, they only work short term and if anything make things worse, I just stopped taking it and didn't experience any withdrawal symptoms, my rls is still here but doesn't bother me every night like it used to do, I take a lot of supplements including Vit B complex which I think has helped, maybe going low carb has helped as well, Codeine is addictive and I stopped taking that at the same time as ropinirole, again only works short term. If you have a partner get them to rub the soles of your feet with the second joint in your fingers as this DOES help a lot, hope things can get better for you.
Me too fortunately I don't have to work. I just stay awake until I finally crash. Thanksgiving night I looked at the clock at 6:30 am Friday morning still awake....but again at least I don't have to try and be alert all day. RLS is for real. Better than Parkinson's though. I'm still thanking God because I have so many blessings health wise.
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