Unconditional recommendations on gabapentin and pregabalin scares me.
I am today 70+ years old and have a lifelong experience of RLS. My medication started at age 35, with low-dose opioid, later combined with low dose pramipexole. It was helpful for decades, but I am now trying new combinations, still too early to evaluate. However, I know that gabapentin or pregabalin is not for me. Guided by an experienced doctor, I raised doses slowly, but side effects as dizziness, depressive thoughts, and finally cramps, got worse well before a dose that reduced my problems was reached.
I know that many find these drugs helpful, but from personal contacts I also know that my experiences are far from unique. German, and many other RLS-Experts gives multi-dimensional recommendations: neurolrespract.biomedcentra... .
Reactions are, and treatments must be, individual.
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Swedane
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As we are continually finding on this forum, RLS is an incredibly unique illness.
Everyone has different symptoms in minor ways, and different reactions to the various medical options offered.
But there are also common generalities ,such as needing to meet the 5 criteria of diagnosis.
And that dopamine agonists are not best first line treatments .
That diet / microbiome is important.
That brain iron is involved and that iron supplementation can help in many cases, but not all.
That Gabapentin/ Pregabalin are now first line option -- but ,as you say ,are not tolerated by all.
That opioids- again if tolerated ,are a very good option.
It is a question of individual trial and error, to find out what works.
Our most difficult challenge on this site is coping with the ignorance among some of the medical professionals,as to what is best practice. Not necessarily their fault ,since it is rarely taught in medical colleges.
This is hugely hindered by the the lack of updating of official guidelines-- especially in Europe --- and ,as a committed European, I am greatly ashamed of this.
So ,thanks again for contributing to the discussion.
Everyone reacts differently to the limited categories of medications available for RLS.Thanks for sharing Claudia Trenkwalder's ( & others) new German guidelines.
At least they have now agreed with the top experts that levodopa should only be used for occasional RLS.
It's sad to see that they still have dopamine agonists as first line therapy. Even with the caveat that DAs should be kept to a minimum dose.
This website is run by RLS-UK which follows the USA experts and the Mayo Clinic Algorithm(2021) and the new AASM guidance (Sep 24) which relegate dopamine agonists to end of life scenarios.
Gabapentinoids do work well for many people as long as they realise the side effects of dizziness, double vision etc wear off after around 2 months. Most people stop taking them in first few weeks, before the side effects settle.
Presumably you are no longer taking dopamine agonists?
The reason I asked is your symptoms may have been partially from the other things you may have been taking or in combination with them.
By the way the German Guidelines although issued recently are not up to date with the latest guidelines as they STILL have dopamine agonists as first line med treatment which it isn't.
Tty it. If it works for you that’s fine. It certainly works for me. Don’t be put off by negative comments. There is a lot of scaremongering on this site. My neurologist recommended this combination to me and I’ve always been very grateful for that. Good luck!
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