Restless Legs Syndrome

[Elouis]

Why is RLS treated like epilepsy?

[Madlegs1]

I don't understand your question.

Do you mean treatment, or socially or attitudes by doctors or??

Thanks for initiating a conversation.👍

[Elouis in reply to Madlegs1]

My consultant is an epilepsy specialist, with an interest in RLS. Are there an RLS specialists?

[Madlegs1 in reply to Elouis]

Rare as hens teeth!😥

I imagine it has to do with whether they suffer from RLS personally or have someone in their family who suffers.

Otherwise,it's a condition that is totally ignorable.

We suffer on in a welter of ignorance.🤕🥵😢💀

[Elouis]

Thank you. I'l have to check the medication options for RLS.

[Amrob]

I've never heard of an "RLS" specialist as such.

In Australia, RLS (or Periodic Limb Movement Disorder (PLMD)) may be treated by a GP, by a neurologist or by a sleep specialist.

By way of example, my sleep specialist is a "sleep and respiratory physician".

My son sees both a pediatric sleep specialist and a neurologist for his PLMD. The neurologist specialises in movement disorders (epilepsy is a movement disorder as is RLS and PLMD).

[Elouis in reply to Amrob]

RLS just doesn't make sense to me.

[Eryl]

Because the things that worsen RLS also worsen epilepsy. Ketogenic diets are a recommended treatment for epilepsy and in my experience they help to reduce RLS.

[Elouis]

I've still not understood how or what is augmentation in connection with Restless Legs Syndrome. I thought it was the undesirable effect of taking too much of a particular medication. Apart from decreasing the dose or changing to an alternative medicine, is there any remedy?

[Munroist in reply to Elouis]

You are correct, augmentation is the result of taking increased doses of a dopamine agonist, of which there are many variants, e.g. ropinirole, pramipexole, neupro. Normal advice is to come off the dopamine agonist completely by reducing the dosage, very very slowly over a long period of time to avoid withdrawal (known as DAWS). Some people do try changing to other variants, occasionally successfully, and some people cope better at lower dosages or find it too difficult to come off completely. However for a lot of people long term DA usage damages the dopamine receptors and makes other medications less effective so remaining on a dopamine agonist has its risks.

[Elouis in reply to Munroist]

The online data does not classify clonazepam as a dopamine agonist. Does that make it safer than ropinirole 6 mg or 10 mg oxycodone 10 mg

[Munroist in reply to Elouis]

Clonazepam is a benzodiazepine and not a dopamine agonist. The RLS-UK website has a good page on medications which clarifies relevant medications.

rls-uk.org/medical-treatments

On this page it says this about Clonazepam:

“Benzodiazepines (diazepam, lorazepam, temazepam, clonazepam) before sleep may be useful for occasional RLS but longer lasting agents, like clonazepam, may result in more adverse effects such as unsteadiness in the night and daytime drowsiness and cognitive impairment.”

The normal recommendation for medication to replace a dopamine agonists are drugs such as pregabalin and gabapentin which are Alpha 2 delta ligands, or if these do not work or the side effects cannot be tolerated then the next step is opioids. These are described in the above link.

Aside from medication it’s worth considering iron supplementation as low levels of iron can contribute towards RLS, and there are many foods that people find which trigger their RLS, for example, coffee, alcohol, sugar, heavily processed foods. If you read an any of Sue Johnson’s comprehensive posts you will get a lot more information. For example this one:

healthunlocked.com/rlsuk/po...

I’d recommend you read through the pages on the RLS-UK website and also read the posts on this forum for the next week or so as these questions come up frequently and there is a lot of good advice and experience. If you are looking for more specific help, then it is useful to describe your symptoms, as well as any medications that you’re currently taking.

[Elouis in reply to Munroist]

I'd been prescribed Longtec 10 mg, an opiod, since June 2022. It worked erratically until March 2023. After a month of RLS episodes, I tried 8 mg clonazepam on my own steam and had a wonderful night's sleep two days ago, but got up feeling slightly shaky. Last night I took 6 mg clonazepam, but the legs kept kicking up to 2 am. I had a coffee and soon dropped off to sleep soundly, waking up at ~8:00 am feeling refreshed.

I'm confused and waiting for my next consultant led appointment.

[Munroist in reply to Elouis]

I can understand the confusion when things which used to work don’t any more and when the RLS changes. There is a tendency for it to get gradually worse over time but other things can interfere as well e.g. certain foods, exercise and other medications e.g. some antidepressants or statins. Iron supplementation and magnesium are things which some people find helpful and may be worth while waiting to see your consultant.

[Elouis in reply to Munroist]

Unexpectedly, dunking my head in cool water, about 35 centigrade, helps relieve the stress in the evenings, before scheduled bed-time!

[Munroist in reply to Elouis]

I have heard of people finding cold showers beneficial or alternating hot and cold. A quick google found this link which suggests that cold water immersion can increase dopamine levels

wellin5.ca/how-cold-water-i....

“We know cold water immersion increases production of mood-elevating hormones and neurotransmitters (beta-endorphins, noradrenaline and dopamine) that can improve symptoms of depression and anxiety by changing the chemistry in our body and brain. The rush we feel upon jumping in cold water is partly due to these chemicals communicating the experience to our brain.”

[Elouis in reply to Munroist]

Thanks. May it be mentioned at least alternating hot/cold drenching the legs, hips down, if possible.

[SueJohnson in reply to Elouis]

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[Elouis in reply to SueJohnson]

I get my medication changed after recurrence of RLS episodes 3-4 times a week. The Plan last June was to stop Pregabalin (usually, 2 mg before bed time and 1 mg each morning.) Clonazepam 3 mg was continued and 2 mg/24 hours rotigotine were taken each night for 3-4 weeks. This did not help, so I am now taking Longtec 10 mg and continue clonazepam. After 4 weeks the RLS episodes restarted along with sleeplessness.

I am waiting for a new appointment

[Munroist]

RLS is considered to be a neurological disease as the origins are in the brain and are related to levels of iron and dopamine. That means you will be referred to a neurologist. Neurologists also look after patients with epilepsy which is another neurological disease so it’s highly likely that a neurologist will cover both areas. Epilepsy has a higher profile than RLS and is better understood so it may well appear as a neurologist’s main specialty or interest. However, they also deal with all other neurological diseases including RLS. The problem is that RLS is not well understood or trained in the medical profession.

[Jetto]

Because their drugs work temporarily

both our problems are neurological

[wildlegs]

I’ve had RLS for 25+ years and five or six times I’d forgotten to have my Tramadol with me and I had the shakes really bad just like Parkinson’s.

[Elouis in reply to wildlegs]

I get bad RLS and sleeplessness about 3-4 times a week, and that's even after religiously taking my medicine and staying off alcohol.