Help please

[Twitchyfeet]

I have been suffering with RLS for over 30yrs. I was prescribed Ropinirole 6mg for 20yrs, experienced augmentation and was prescribed gabapentin 3tabs x3 daily 900mg. Initially the gabapentin had calmed my RLS. No more twitching during the day. Some twitching during the night. However, recently the twitching is back - worse than ever and I’m not sleeping again. It’s just horrendous. I’m feeling so depressed and unable to deal with the day. Can anyone help? Give guidance? Many thanks.

[Madlegs1]

My usual call on triggers still stands.

What has changed in your life? Food/ drink/ medications etc?

Medications- such as HRT, statins , antihistamines, antidepressants and so on.

Food such as raising agents in biscuits and cakes, msg- in sauces and soups etc. and so on.

Keep a food diary- although eating out is a huge challenge

We had a meitheal here in the house(work party to do up a room)

She inside ordered caterer to bring in fabulous food- including a beef stroganoff.

Well--- I was in absolute torture that night.

Had some left overs the next day-- just to test?? Murder again.

If something tastes too good-then watch out!!?😭

[ziggypiggy in reply to Madlegs1]

Stress and anxiety are also sneaky triggers for some of us. Sometimes you may not even be consciously aware that your body is under stress.There are so many possible variables that can go into a period of increased symptoms it's crazy. It's a good day if your lucky enough to pinpoint the source and remedy the situation. That process in itself can drive you nuts.

[Rayme in reply to ziggypiggy]

so true ziggy. I was reading madlegs reply and agreed and then yours is so true for me also. Well said. It sure is exhausting having RL. I have oesteoarthritis and that sure affects my RL too. Phew!

[Heidi_SF]

I took ropinarole for about 8 or 9 years, with augmentation throughout the final couple of years. My doctor did not know about augmentation so I thought I just needed a higher dose. I quit the ropinarole and switched to Gabapentin. Didn’t work very well and made me feel drunk. Now I take a very low dose of an opiate, hydrocodone, and 98% of the time it works very well. Also it kicks in quickly, half hour, and I never need more than 10mg. Usually 5 or 7.5 is enough. I take 2.5 as needed, late evening and sometimes in the middle of the night I need another dose. Of course many doctors don’t want to prescribe an opiate which in my opinion is just plain cruel. It’s such a miserable condition to live with. There is no augmentation from opiates other than Tramadol, and dose never needs to be increased.

Hope you can find someone to help you. I truly sympathize when I read posts like yours.

[divasmom8 in reply to Heidi_SF]

I disagree, there is definitely augmentation with opiates. I just had this discussion with my neurologist. I started opiates to control my RLS 8 years ago. Starting dose was 5mg twice daily. After several years it went to 7.5mg twice daily. I am now up to 7.5 mg 3 times daily and it doesn’t always control my symptoms.

[Joolsg in reply to divasmom8]

Augmentation does NOT mean increase in dose. If you increase dose to achieve same effect, that is called 'tolerance'.You have developed tolerance to your opioids. The short half life opioids ( tramadol, oxycodone) are more likely to cause tolerance than the long halflife opioids ( methadone/buprenorphine).

In RLS only dopamine agonists cause augmentation. And it means increase in severity of the disease itself. The DAs actually drive/feed the disease. It increases in severity.

[MrCrow in reply to Joolsg]

I wonder if a drug rotation strategy can be used to manage RLS. Like u take drug a for 6 months and then cross taper to drug b for the next 6 months

I wonder if this can prevent tolerance, severe dependence, augmentation etc.

[Joolsg in reply to MrCrow]

This doesn't work with DAs because of the mechanism of augmentation. Augmentation causes up regulation and hyper excitability of D1 dopamine receptors. If you switch to another DA, the D1 receptors are temporarily flummoxed, but quickly become hyper excited.I know some people rotate between gabapentinoids and opioids but they will have withdrawals from both.

Dr Winkelman's opioid register was set up to show tolerance doesn't seem to be happening when low dose opioids are prescribed for RLS.

I haven't increased my Buprenorphine dose in 3.5 years. I remember having to increase Ropinirole very quickly.

[MrCrow in reply to Joolsg]

Well not between 2 different da's but say between a DA and a gabapentinoid? Take pram for 6 months. Cross taper to gab in 2 months. Then take gab for 6 months. Repeat.

I ask because as mentioned before by me on this forum, Opioids are not prescribed for RLS in India. Only Tramadol is and it's the only one known to make RLS worse.

[Joolsg in reply to MrCrow]

Well you could try it. But you then have 2 severe withdrawals every 6 months.I do know someone who tried this with a DA and an opioid.

But the DA still caused severe augmentation eventually.

Once the D1 receptors have been up regulated, if you start the DA again, even months later, the D1 receptors quickly up regulate again and drive severe RLS.

[MrCrow in reply to Joolsg]

Makes sense.

You mentioned earlier that cycling between opioids and gab is an option for some. I was wondering if that also causes withdrawals? Perhaps less severe than DA withdrawals?

[Joolsg in reply to MrCrow]

Yes. Any reduction in opioids causes withdrawal. Main symptom is RLS. Similarly, reducing gabapentinoids can cause withdrawals.You would have to take weeks/months doing so safely.

The Massachusetts opioid study is showing that tolerance doesn't tend to happen.

But I know you can't get opioids in India.

[MrCrow in reply to Joolsg]

Are you from the UK btw? Can you get opioids there? Can you get Buprenorphine for RLS there?

[Joolsg in reply to MrCrow]

Yes I'm in UK.Targinact is licensed here for RLS. But there is still difficulty getting a prescription because Targinact is more expensive for the NHS than plain Oxycontin. Many areas therefore will only prescribe Oxycontin.

And the prescribing rules differ for every single UK region. Some CCG allow GPs to prescribe tramadol, Oxycontin and Buprenorphine. Other areas do not.

Buprenorphine is cheap and readily available in the UK for pain. Getting it for RLS is a postcode lottery.

Where I live in S.London my GP can prescribe it. But in N.London it is red listed and only hospital specialists can prescribe.

But GPs can still refuse to prescribe opioids even if a neurologist recommends it.

Lots of obstacles.

[MrCrow in reply to Joolsg]

I'm not entirely sure how the system works in UK, but couldn't someone from North London just go to a physician in South London for a prescription?

Also, I don't quite understand the business about a GP prescribing something to you after hearing advice from a neurologist Can't a Neurologist directly give a prescription which you can use at a pharmacy? How is a GP who is less qualified than a Neurologist able to refuse even after a Neuro recommends it?

I ask because I am looking into immigration options to places where you can get opioids prescribed for RLS. I am currently in the US and although opioids are available for treatment, it's way to difficult for Indians (and Chinese) to stay here long term.

[Joolsg in reply to MrCrow]

It's very complicated and confusing. You have to be 'accepted' as a patient in an area. Some GP surgeries will only accept patients who live within 1 mile of the surgery. All GP surgeries have different rules. London is divided into different prescribing areas with different rules. I know someone from N. London who registered at a S.London GP surgery. She travels by train monthly to collect the NHS prescription.

Some neurologists can write 'green form' NHS prescriptions but some pharmacies in different areas still won't fill the prescription. It is MADNESS. I only discovered these stupid differences/rules recently.

And even when a drug is licensed for RLS, like Targinact, some GPs refuse point blank to prescribe it.

[MrCrow in reply to Joolsg]

Damn! and here I though the USA's system was complicated with its web of insurance policies, their exclusions/inclusions, doctors who are in/our of network etc.

[Munroist]

Could you please clarify how much gabapentin you are taking in total and what the dose per tablet is. I’m not clear whether the total per day is 900 mg. If it 900 mg a day then you are some way below the usual effective dose and you could try increasing in small amounts if you are ok with any side effects.

[hasta]

Hi, I am using Neupro patches (4 mg) along with gabapentin capsules (250 mg). They really help me. I apply the patches on my shoulder blades where they are most effective for me. They come in 1, 2, 3, 4, 6 and 8 mg dose versions. I am sure your doctor will determine what size is more appropriate for your case. I hope they help you too.

[Joolsg in reply to hasta]

Neupro patches are dopamine agonists.Max dose is 3mg. Neupro causes augmentation so if twitchyfeet took Neupro, the D1 dopamine receptors would instantly up regulate again and start the horrendous augmentation cycle again.

Neupro is 'not recommended' under the new AASM guidance.

Watch out for augmentation.

[SueJohnson in reply to hasta]

I understand you don't want to come off the Neupro as I advised and that is your choice but PLEASE do not recommend them to anyone else. Lives haves been ruined by being on dopamine agonists like Neupro.

[hasta in reply to SueJohnson]

It made my life bearable. It may help others too.

[Joolsg in reply to hasta]

No it won't. The AASM has confirmed on 23 September 2024 that Neupro is NOT Recommended. It is to be prescribed only in 'end of life scenarios' where short term benefits outweigh the INEVITABLE longer term severe worsening of RLS.When augmentation hits, RLS becomes unbearable. And withdrawal is HELL.

I don't know ANYONE who has been moved to Neupro who hasn't experienced augmentation. It may take 2 years, normally months.

[hasta in reply to Joolsg]

Well that's the situation I am in along with my CLL. I am near the end, but I am comfortable.

[Joolsg in reply to hasta]

I am sorry to hear that. Dopamine agonists should only ever be prescribed in end of life scenarios.

[SueJohnson in reply to hasta]

I too am sorry to hear that.

[Optidad in reply to hasta]

Drug addiction. Hypersexuality, overspending , and most recently seperation and suicide attempt. All under the watchful eye of my GP who co prescribed SSRIS , followed by referral to a helpful psyciatrist who rotated mirtazapime , quetiapine and olanzapine . All within 2 years of dose increase of Mirapexin from 0.18 to 0.36 . No previous history of psychiatric illness or depression. I am a well educated health professional . DA'S ARE POISON . NEVER WORTH THE RISK . IMHO of course

[hasta in reply to Optidad]

You misunderstood me.

[Optidad in reply to hasta]

Sorry , read the thread and thought you were advocating DAs as a safe line of treatment. I'm really happy they are working for u , honest . But do be careful . I really didn't think I was actually behaving any differently , apart from wondering why people were "on my case" regarding my drug use . As the Hothouse Flowers sang ... I can see clearly now.....Be good and be happy 😊

[hasta in reply to Optidad]

Isn't this forum meant for us to share our personal experiences? I'm not here to tell others what they should or shouldn't use. As a patient, I found comfort and peace in using a particular medication. There is no need to jump to conclusions. Best Regards

[Optidad in reply to hasta]

Hasta La Vista 🫡

[SueJohnson in reply to hasta]

But you did say it may help others. That's what we didn't want to see.

[Joolsg]

Are you completely off Ropinirole? When was your last dose?Has your GP arranged full iron panel blood tests?

And finally, your GP has given you the nerve pain dosing schedule.

For RLS , gabapentin is taken at night only in split doses of 600mg 2 hours apart. You also need to take any magnesium supplements 3 hours before or after gabapentin.

[Twitchyfeet in reply to Joolsg]

I’m off Ropinirole now. Have been for a year.

I will definitely ask my doc for an iron test.

Thank you for your help.

[Joolsg in reply to Twitchyfeet]

Ensure serum ferritin is included as that needs to be above 100ųg, preferably 200ųg/L. The majority of RLS cases could be resolved if patients were given iron therapy before meds. But that requires training at medical school or during GP training.

[SueJohnson]

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

You don't say whether you are off ropinirole so I am going to assume you aren't and since you are/were on 1 and a half times the maximum dose and mention that you are/were augmenting, you need to come off it. Gabapentin won't help much until you are off ropinirole for several weeks and your symptoms have settled.

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

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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, Neupro 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 Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg 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. When you are off ropinirole you won't need it during the day.

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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

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.

[Twitchyfeet in reply to SueJohnson]

Thank you so much.

I am no longer on Ropinirole.

I am on gabapentin. I understand it would be better to take it at night time not x3 a day?

I do not drink alcohol, do not smoke, no caffeine.

I will definitely keep a diary.

☺️

[SueJohnson in reply to Twitchyfeet]

Yes you are right.

[Twitchyfeet]

So I have been taking 300mg gabapentin x3 times a day, breakfast lunch and dinner. This has relieved my RLS during the day but not at all during the night. The twitches start about 8pm and continue until morning. Any recommendations on how and when I should, perhaps take my gabapentin please, because I feel like I should be taking them during the night!!!! 🤷🏽‍♀️ many thanks in advance.

This forum is such a special place. So many of you are suffering too. It’s so good to discover help and discuss and relate. ❤️