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Restless Legs Syndrome
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Which therapy helped you the most?

Can people say which of these helped them the most? I don't think there's an option for adding a poll.

Dopamine agonists: These are most often the first medicines used to treat RLS. These drugs, including pramipexole (Mirapex), rotigotine (Neupro), and ropinirole (Requip), act like the neurotransmitter dopamine in the brain. Side effects include daytime sleepiness, nausea, and lightheadedness.

Dopaminergic agents: These drugs, including Sinemet -- a combination of levodopa and carbidopa -- increase the level of dopamine in the brain and may improve leg sensations in RLS. However, they may cause a worsening of symptoms for some people after daily use. Side effects can also include nausea, vomiting, hallucinations, and involuntary movements (dyskinesias).

Benzodiazepines: Benzodiazepines, such as alprazolam (Xanax), clonazepam (Klonopin), and temazepam (Restoril), are sedatives. They do not so much relieve symptoms as help you sleep through the symptoms.

Opiates: These drugs are most often used to treat pain, but they can also relieve RLS symptoms. Because opiates are very addictive, they are usually used only when other drugs don't work. Hydrocodone (Vicodin, Norco) is one example.

Anticonvulsants: These agents, such as gabapentin (Neurontin) and gabapentin enacarbil (Horizant), may help relieve the symptoms of RLS as well as any chronic pain or nerve pain.

Alpha2 agonists: These agents stimulate alpha2 receptors in the brain stem. This activates nerve cells (neurons) that "turn down" the part of the nervous system that controls muscle involuntary movements and sensations. The drug clonidine (Catapres) is an example.

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Opiates - any and all. From the milder Kratom type one to Oxycontin hands down opiates the best with for me the minimum amount of side effects.

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I’ve tried ropinirole which worked well for 6mths then I augmented and it was horrific to withdraw.

Following that I was on 50mg of Tramadol which worked well for 18mths but then it lost its effectiveness and I was reluctant to increase the dose.

Now I’m on 150mg Pregabalin and it’s worked very well for the past 4mths. I’m assuming at some point this will also stop working.

Pam

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I was on DAs for many years but had to increase dosage to way above the now recommended maximum. Have been able to reduce it to a very small amount by using kratom, but after 6 months it is slowly losing effectiveness. Pregabaline only works for me at high dosages which sedate me beyond being able to work.

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You need to add a class of "other" Don't assume the drugs are the only choice or the first choice.

Some of the experts say raising your ferritin to about 300 by means of an Intra Venous iron infusion should be the first thing to do before trying to find a drug. This might cure up to 50% and relieve up to 80% of patients. If it cured 10% with no side effects then it would be better than drugs.

I had bad reactions to a couple of drugs so decided to look for another approach. Finally reached the FODMAP diet with a bit of Low Chem diet added. Its not perfect but I am sleeping better. Others have found that other diets are good for them eg Vegan diet. There are many people who have been helped by diet but there seems to be different diets for different folks.

Somewhere in the maze there is a connection between the gut and the restless legs, perhaps only for some lucky ones, but a significant fraction.

Its cheap to try a change of diet and might have good effects in just a few months.

Good Luck

Graham

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Low-dose methadone, no contest.

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Fat chance of getting that prescribed in UK. They just seem to make us feel like drug addicts whereas I know a few people have said how effective methadone is, and in a very low dose.

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Opiates.Kratom.Codeine.Tramadol.x

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Diet

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Hot showers.

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Ferrous bisglycinate chelate, and now diet.

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I was on 1 mg of Clonazepam for ten years - it worked well but the side effect was daytime low energy. Now I'm taking Gabapentin and it works well with a minimum of side effects.

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Opioids. The very first treatment documented in the 1600's ( Dr Willis) and now back as first choice treatment by a lot of experts.

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I would say keeping the dose as low as possible of whatever happens to work. Rls symptoms seem to be capable of ramping up eventually to outdo almost all forms of treatment in some if not all patients. I think it is a tribute to the elasticity of the human brain (as well as taking account of the potential for side effects and unpleasant withdrawals attendant on most of the more effective rls drugs).

Also a combination of meds at a low dose helps to keep the disease on its toes as variations in the dose can be shifted between the various meds. For me it has been a question of staying one step ahead of the condition while keeping treatment drug doses low.

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It is a real shame there isn’t an option for adding a poll. This post would make an excellent candidate

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