I have just joined this forum as I had no sleep last night at all. I get a horrible "tickling" feeling in my thigh and arm. Is this RLS? There is no pain, just this horrible tickling, crawling sensation that is relentless all night long. I was thrashing about in bed, then out of bed, tried again, same urge to move legs, out of bed etc etc. I took so much night medication and eventually slept from 4am until 9 am. I'm over 70 and I never ever sleep until 9! Is this feeling RLS do you think?
Thank you in advance for any help you are able to give.
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sarah38chall
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What do you think might have brought it on so suddenly?
Many things trigger rls- especially medications such as antihistamines and antidepressants. Had you just taken a cough medicine? Or something like that?
Thank you, my medications havent changed. I experienced this 2 yeats ago. I was prescribed Ropinerole 0.25mg. I took it again last night together with ptescribed 150mg pregablin and slept soundly but feel drugged this morning so Im not taking the Ropinerole tonight!
I'll leave the Ropinerol for someone else to answer.
Cheers.
Hi Sarah. About the Ropinirole. The symptoms you describe and the fact that you were prescribed Ropinirole seem to confirm you have RLS.
That is unless you were prescribed it for something else e.g. Parkinson's disease.
You also mention Gabapentin, which can also be prescribed for RLS. However, that also Can be prescribed for other things, e. g. Nerve pain.
If your RLS did suddenly flare up then it would appear that something might have triggered it.
However, if you were prescribed RLS medications 2 years ago it may just be getting worse as it tends to do. Certainly, RLS doesn't just go away, there's no cure.
There's a few things to consider -
1 If you were prescribed Ropinirole, it's not something that really you should be taking "as necessary", it's something you should take every day and it sounds as if you haven't been.
2. You will find that Ropinirole does not relieve a RLS attack once it's started, it needs to be taken before it's likely to start to prevent it starting. Best 1 to 2 hours before lying down. Take it the same time every day.
3 You also mention "night medication" but don't name it. If this is something else and you take it regularly, then this is also a complication.
Additionally, you say you took "so much" of it. If this is a prescribed medicine you need to be really careful about taking more than the prescribed dose. It's potentially dangerous.
It would be good if you could say what it is.
4 If your sleeplessness is caused by your RLS and when you take Ropinirole AND might medication you're drowsy next day, it's probably a good idea to take the Ropinirole and, at least, not so.much might medication.
If you take any of these medications regularly, Ropinirole, Gabapentin or "might medication" you must not stop taking any of them suddenly.
I appreciate that it's not always easy to understand medications and doctors don't always explain them clearly or don't check to ensure we understand. I suggest you see your doctor for a medication review. He/she can look at all the medication you're taking, whether it's all necessary, what exactly you've been prescribed them for, what they're exposed to do and what side effects they may have. It might be a good idea to take someone with you to help remember it all, or take notes..
As Madlegs says, this sounds like RLS unfortunately. A crucial issue is whether it was relieved when you got out of bed and walked around. Most people with RLS find an alleviation of symptoms when they move and many reference one of the symptoms as being an 'urge-to-more', the other principal symptom being a creepy crawly feeling in the limbs (usually but not always the legs) which you describe. The fact that your symptoms start to wear off near dawn is also a positive indicator as dopamine levels start to rise then naturally.
Like Manerva, I would urge caution about using too much of any one medication for fear of overdose (depending on what it is - I believe it may be difficult to overdose on chamomile tea for example but I'm assuming it's something more significant that you are taking).
An attack of RLS is like a form of torture and at times one would take anything to make it go away but it is better to tackle it from a number of different angles than take large amounts of one drug.
There are a number of remedies that people on here find helpful that can be employed cumulatively:
- Solpadeine - it's the codeine you want - obviously don't use this if you are intolerant of opioids or you are already taking opioids;
- Gentle stretches of the legs - yoga type stretches;
- A VERY diverting activity such as a computer game (unfortunately there is widespread agreement that reading, watching tv, paper puzzles, chatting etc are not sufficiently diverting) - I find playing chess online for 20 minutes can give me up to 2 hours of symptom free sleep;
- Magnesium - taken as a supplement or rubbed into the legs (dilute epsom salts in water) helps lots of people;
- Some people report taking an iron tablet (iron bisglycinate - can be purchased in Holland and Barret) helps with an attack and raising iron levels generally has a significant positive outcome in over 50% of sufferers - see further below;
- Some people find that having a cup of coffee when RLS symptoms come on helps - this is to do with adenosine levels apparently;
- Very hot water - a hot bath with epsom salts is good;
- Very cold water - this helps me;
- Vibrations - eg tens machine, female stimulation machine of the intimate type, or a vibration plate.
There are endless other suggestions out there that individual people have made: glusosamine supplements, rooiboos tea, apple cider vinegar, taurine, l-theanine, cbd oil etc etc. Many of these only work for individuals however and you can spend a fortune on supplements without much success.
Consider whether you have made any changes in your diet, lifesstyle or medication that may have caused this sudden outbreak. There is a list of medications that exacerbate RLS on the EARLS website.
Other items can trigger RLS - ice cream, alcohol, particularly red wine, sugar, over-eating generally, artificial sweeteners, raising agents etc etc. A lot of people find a restricted, 'clean' diet helps.
It is important to be aware that there are very few medical professionals posting on here. We are mostly posting from our own experience. I am not a medical professional - just someone who has read widely and experimented extensively on myself in the treatment of my rls so what I say should be read in light of this but unlike Manerva, I believe it is possible to use drugs like ropinerole on an intermittent basis - it is a departure from the usual manner in which it is used but I have read of instances of people doing so successfully for their rls provided the dose is kept really low. I have used a drug from the same family in this manner from time to time but would repeat that it is really important to keep to the lowest amount of the drug - 0.25mg in the case of ropinerole. Drugs like ropinerole do have to be treated with caution, however, and even the medical profession can be somewhat unaware of their long-term effects. I would agree with Manerva that ropinerole is far more likely to be effective if taken in advance of an attack.
Finally but importantly, if you have RLS you should get your GP to test your serum ferritin levels and make sure they give you the actual figure in your results - not just that you are 'normal'. RLS sufferers need to have serum ferritin of over 100 and 'normal' can be as low as 20. Many GPs are unaware of this fact. Raising iron levels can result in an improvement and even a complete alleviation of symptoms in a good number of sufferers. Many on here find iron bisglycinate to be a good supplement for raising serum ferritin but eating liver - if you can stomach it - is probably an even better method.
Good luck, I hope you get it under control. You will see the word 'torture' cropping up here over and over again in relation to RLS and it is no surprise.
Hi Involuntarydancer. You have set me pondering now whether you can take a DA intermittently or not. I find for myself that I simply can't, if I miss a dose I don't sleep that night at all.
I have a theory that medicines with a relatively short half life need to be taken regularly because once levels fall past a certain point you will get withdrawal symptoms, plus, the next time you take a dose, it might not be as effective as it will only be on top of a very low amount left from the previous dose. Whereas, if taken regularly, it will be topping up a higher amount left from before.
I know that people taking painkillers for acute pain certainly should take painkillers regularly for this very reason. Some people put off taking them for as long as possible. This is not a good idea because you may get a phenomenon known as "wind up", where the pain gets much worse than it would do with a regular dose. Then it takes more painkiller to get it back under control. In the end by avoiding taking too much painkiller people end up actually taking more.
In the 1980s PCA appeared. Patient Controlled Analgesia. This is where, instead of getting a tablet or injection every 6 to 8 hours, patients more or less got a constant, (smaller) dose which kept them topped up. It did have to start with a larger "loading dose".
Similarly transdermal patches give a constant steady dose.
With intermittent dosing, levels go up and down like a yoyo.
It might be a bit different for RLS as it circadian related, but then, why have Neupro patches.
What are the benefits of only taking a DA intermittently? Presumably trying to avoid side effects and augmentation. It might avoid side effects, but see above, at the cost of reducing efficacy or risking withdrawals.
I wonder if it helps avoid augmentation? I have no idea about that.
It might be the dose that you take that's a significant factor. If you only take a low dose anyway, it might not make as much difference taking it intermittently.
Logically, however, if you were taking a higher dose, it seems better to take a lower dose regularly than take the higher dose intermittently, because on average you might end up taking less.
Still, everyone on here seems to have different experiences and different things work for different people.
I hope you agree that it doesn't really work to wait until you're having an RLS attack before taking medication, because it's simply not going to be effective in stopping it. It's too late. So how do you judge when to take it intermittently?
Definitely it is only possible to take a dopamine agonist intermittently if on the lowest possible dose - no higher than 1 x 0.088mg of pramipexole or 1 x 0.25mg ropinerole. That is the dose that Sarah said she takes so in my view (but subject to proviso I am not medically qualified) she could take it intermittently. Personally, I would not take a higher dose than these of a dopamine agonist if you paid me a kings ransom. Although I appreciate that these are lower than the current recommended upper limit, bitter experience has led me to the conclusion that anything that messes significantly with the body's dopamine system is to be treated with extreme caution - much greater caution than the average GP is prepared to exercise. In my view, the dose of dopamine agonist should be maintained at this low level and supplementary treatments employed for breakthrough symptoms. If symptoms cannot be covered by that dose, then a different treatment should be sought.
Taking the drug intermittently guards against habituation, dependence and augmentation as well as impulse control issues. It also enables a sufferer whose symptoms are not unduly severe or are intermittent to monitor their condition. Obviously it is not a viable option for many sufferers however.
I do agree with you (I state it in my response to Sarah) that dopamine agonists are far more effective if taken in advance of an attack.
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