Tired of the RLS: I am also struggling... - Restless Legs Syn...

Restless Legs Syndrome

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Tired of the RLS

OJBW profile image
OJBW
7 Replies

I am also struggling with restless legs syndrome and it is absolutely driving me insane. I have tried everything that's over the counter but nothing seems to work. I can't sleep and now has effected my driving. I am on Primprexole and it doesn't work anymore. I have been taking it for 20 plus years. I just don't know what to do anymore.

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OJBW profile image
OJBW
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Pippins2 profile image
Pippins2

Hi very brief as dropping off to sleep hopefully.What dose of Prami are you taking ? Have you increased the dose over the years ? My guess after 20 years on it and RLS driving you insane is that you have augmentation from the med .There is a pinned post explaining it .

Someone will be along with a more detailed reply but will help to know what dose you are on and any other meds you are taking x

OJBW profile image
OJBW in reply to Pippins2

I was on 88 mcg and now i am on 150 mgs.

One word

Augmentation!

The pramipexole is NOT treating your RLS, it's making it worse. It also CAUSES insomnia.

You've done really well to stay on it 20 years, I managed 9 and at least of those were awful.

There are several solutions for you.. The main one is

STOP taking pramipexole before it kills you.

Apologies fir perhaps drsmatically overemphasisng what I write, but my own experience of pramipexole and the many posts I read of people having problems with pramipexole or it's bad buddies, ropinirole and rotigotine are, at times, overwhelming.

WARNING - being dramatic again.

1 - Do NOT stop pramipexole suddenly

2 - start on an alternative RLS medication before reducing pramipexole, up to 4 weeks.

3 - reduce pramipexole slowly, the slower the better. R.g. I reduced by 44micrograms (ug) or half a 0.125/0.088 mg tablet every 2 to 4 weeks.

4 - be prepared for withdrawal symptoms, temporary worsening of symptoms plus sleeplessness. These can be helped by a benzodiazepine and or an opiate.

The alternatives to pramipexole are either gabapentin or pregabalin.

It's best to start one BEFORE reducing pramipexole. They should help but they take about 4 weeks to work and they won't be really effective until you've reducned the pramipexole.

Heres a link to

info on augmentation

sleepreviewmag.com/2015/02/...

Heres a link to info on all treatments for RLS

uptodate.com/contents/treatment-of-restless-legs-syndrome-and-periodic-limb-movement-disorder-in-adults

Last dramatic bit -

Pramipexole may once have been your friend. You may not yet realise it, but now it's your enemy.

OJBW profile image
OJBW in reply to

I did not know this. ThNk you so much for the information. I was on gabapentin before they put me on prampexiole. Gabapentin didn't work besides the side effects were awful.

in reply to OJBW

Sorry to hear about the gabapentin, you could try pregabalin instead.

Unfortunately, the factr remains, you are suffering augmentation.

You either need to change to an extended release version of pramipexole, that might help, or stop it.

Ohhhheather profile image
Ohhhheather

I have struggled in the past as well. For 1 year I was prescribed Requip... then it was a combo of Norco and Restoril for another 6 years. After I quit the Norco cold turkey and then tapered the Restoril, I started taking Kratom. I had come across it on YouTube. I take 4-8 mg before bed and it has been amazing. I take Bali Green Vein capsules and purchase them from Kraken Kratom, which is the BEST online supplier. Kratom is banned in a few states due to lack of proper understanding by the FDA, but legal here in California. You'll have to check your state law and some research. I highly recommend it... I have read about people having withdrawal issues, but I haven't had any issues... my dose has increased a bit over the past 2 years, but I can care less. It keeps my legs AND arms in check. krakenkratom.com

bill54321 profile image
bill54321

Minverva is very correct. Listen to her. Be pro-active for yourself. Meanwhile, some old fashion advice. Sleep centers don,t like a full meal after 6:00 P.M. Going pee pee from drinking to many fluid needs attention.. (Remedy by your grandma. ) Eat the big meal at noon. 1 cup of coffee in AM. Green tea or camamile (SP) in early afternoon. To stay hydrated, fill a glass jar with plastic top with good water. Pour enough Hyimalayan pink salt to saturate with some undesolved crystal remainings. Take 1 teaspoon of the solution in a cup or small glass. Do so on an empty tomacyh in AM before meals. Increase to a tablespoon AFTER 1 week. If diarrhea comes, cut back to every other day. We do this a lot in the high altitudes of Taos,NM. to KEEP HYDRATED. Coffee is a diauritic. A good morning tea is uera Mate (National drink of South America) It is an acquired taste with not as much caffine as coffee but many more minerals. ( Some people south have a habit of drinking too much, too hot and have a history of throat problems. But this is excessiveness) Many common problems stem from the lack of fluid hydration. So keep your meals early as well as restricting evening meals. Also, Grandma says, boil 2 bananas cut up with skin on at 2 inches width . Boil 20 minutes, Drink the strained juice 1 hour before bed (small cup) Set. your alarm so you don't over sleep. This is all common stuff that works for me. Thought you all should know.

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