New to the group

Hi, how refreshing it is to watch the video on here. Hearing people talk about my symptoms. Symptoms I've never been able to explain before because it is hard to explain what the feeling is like. No one understands

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

If you are still having symptoms but are on pramipexole, it is probably because you are augmenting. 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.

Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.

This means you need to come off it. First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[DesertOasis]

Adele, you should probably start by telling us all medications you are on. Including ones like SSRIs, birth control or HRT, melatonin, or proton pump inhibitors, by way of example.

[Hidden in reply to DesertOasis]

What makes you think I'm on any? Why would you need to know all that information?. I've joined this group to her people stories nothing else

[DesertOasis in reply to Hidden]

You’re young to have severe or even moderate RLS. When I was your age I started to take melatonin which then turned my mild intermittent RLS into the devil incarnate. I didn’t sleep for three nights straight until I came onto a site like this one and found a good treatment. A year later I was getting tired of the treatment and came on this site and found out that melatonin makes RLS symptoms much worse. I should have made the connection myself, but I didn’t. The night I stopped the melatonin is the night my RLS went silent.

[DesertOasis in reply to DesertOasis]

SSRIs and HRT can do the same as the melatonin. And to a lesser extent PPIs and certain allergy medications like Benedryl

[Joolsg]

Welcome. Start by reading RLS-UK website. RLS-UK runs this forum.UK doctors are not taught anything about RLS or the drugs routinely prescribed.

They don't know that iron therapy and replacing trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers & PPI meds etc) should happen BEFORE meds are prescribed.

RLS-UK follows the latest research from USA ( Mayo Clinic Algorithm) & the new AASM guidance. All dopamine agonists are no longer first line treatment because they all worsen RLS and withdrawal is hell.

So read all you can. Knowledge is power.

We normally ask people to let us know what meds they're taking because many meds cause or worsen RLS.

[DesertOasis in reply to Joolsg]

Too late. I scared her off, in usual fashion. If you have RLS, you gotta have some kahonas, otherwise the disease will swallow you whole.

[Joolsg in reply to DesertOasis]

😔

[Joolsg in reply to DesertOasis]

We do ask everyone to state in their bio what meds they're taking. It's essential. As we all know- so many meds can cause/trigger/worsen RLS.

[DesertOasis in reply to Joolsg]

It can be embarrassing disclosing one’s prescription drugs. I truly believe this is a case of mission accomplished. I think she is on one of the drugs we mentioned and now she is free of the ignorance a lot of us had when our RLS first became supercharged. Another day saved! 👐

[countryboy111]

I noticed that - although you didn’t ask for any advice - you got it anyway! Yes it’s good to know that others have the same symptoms as you have 😄

[Kakally]

we all wish you the best and are always here to share other peoples’ stories and experiences. It is so great just knowing that we are not alone with RLS. Also we are always here for any questions or information that you might seek.

No one wants to upset or provoke you or anyone. We are all in it together

LOVE

🤗🤗🤗

[Doped]

Which video is that, I'd love to see it!