Restless leg syndrome

[Lynnygrl]

I have been taking 1 or 2 mg ropinorole for about 5 years. It worked sometimes, my Doctor started giving me 5/325 hydrocodone which has helped me ALOT. It seems if I walk a lot or have a lot of stress my legs get bad at night. At least I know that I will make it through the night. I also take trazadone to help me sleep on those nights when it's bad. I also had taken gabapentin and my legs started to get really bad again. Took myself off of that. Hope this helps someone.

[ChrisColumbus]

After 5 years on ropinirole you are probably augmenting (see link below). Gabapentin won't work while you are augmenting on ropinirole. Others who have been through this such as Joolsg and SueJohnson can give you further advice with this.

rls-uk.org/augmentation-reb...

[Lynnygrl in reply to ChrisColumbus]

Hi thank you Chris. I only started the gabapentin a month ago to help me walk as I had hurt my leg at work. I thought initially I could take it with the ropinirole, but my RLS go worse even while I was awake. So it wasn't used to augment my ropinirole. As soon as I stopped the gabapentin my RLS immediately got better on my current medications of ropinirole and hydrocodone.

[Joolsg in reply to Lynnygrl]

The hydrocodone is what is keeping your RLS under control.It would be better to get off Ropinirole completely and stay in hydrocodone, adding gabapentin if the hydrocodone doesn't help.

Just read about Augmentation. The fact that your RLS became worse on Ropinirole and you have had to add hydrocodone and gabapentin is a clear sign that Ropinirole has not only stopped working, but is worsening your disease.

Dr Earley at Johns Hopkins believes EVERYONE will suffer worsening RLS on these drugs. It's better to get off now and use the hydrocodone to settle the withdrawals.

Go slowly. 0.25mg every 2 weeks. Your RLS will flare up at each reduction so use hydrocodone and cannabis to settle symptoms.

Once off Ropinirole, your RLS will reduce in severity and you can try to improve it by increasing iron stores via pills/iron infusions.

I see you're in the USA, so do consider joining rls.org. They fund research into RLS.

[SueJohnson]

If the ropinirole helps sometimes but not others, you may well be augmenting as Chris Columbus suggested. 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. Do you meet these criteria?

[SueJohnson]

By the way, gabapentin can have side effects you can't live with but it cannot make RLS worse. Something else must have caused it.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[Lizzybuz27]

I take gabapentin 900mg.. I spit dose 300mgs at 7pm and 600mgs at 9pm, so its better absorbed. I did not want other meds like ropinirole, as they can eventually stop working, make symptoms worse , and are hard to withdraw from. So I persevered with gabapentin until I found a dose that worked. Hope this helps as I had horrendeous rls

Regards

Liz from uk

[Cobobay]

I can sympathise with what you are saying about gabapentin as I was on ropinerole and used to switch when they stopped working between them and pramipexole. After doing this for a couple of years, I found this group and asked for advice, as these were definitely not working long term. Sue recommended that I take Gabapentin and to say I was sceptical was an understatement as had been warned by Doctors these Forums are there to promote and help pharmaceutical companies make money! and was actually told this by a fill in Doctor whilst mine was away over Christmas and I had to beg for gabapentin as she wanted me to go back on either ropinerole or pramipexole!! I would NEVER go back on either, I'd rather cut my legs off. I started and gave up after a month as my ankles swelled up like balloons and went back on the dreaded ropinerole with relief immediately but I started within days to need a higher dose as days went on, it then made me realise this had to stop, as the augmentation was already getting worse. I asked for help again and I persevered, believe me it wasn't easy coming off Ropinerole, even though slowly was a terrible experience and the 1st month I wanted to give up many many times, but with the help from this group I am now 7 weeks in and completely off Ropinerole and thank god for that. I still get restless at times, but that's because I think I've taken my 1st dose too late in the evening due to me not feeling restless and I forget. I'm taking 300mg around 7/8pm and 600mg at 9/10pm but never later, or I start to get symptoms, to which I then take 1 x Dihydrocodeine to try and help. I really hope you get sorted as I think I now am but probably aware that I may have to increase the dosage at some point as this is a low dose, but think long and hard about staying on Ropinerol, it is such an awful drug to be reliant on.