SEVERE NIGHT TIME LEG CRAMPS

[Big4844]

I HAVE HAD RESTLESS LEGS SINCE I WAS 40 YEARS OLD & I AM NOW 88YEARS OLD. I HAD BEEN TAKING PRAMIPEXOLE 1.5 MG ALL THESE YEARS, BUT RECENTLY IT NO LONGER WAS HELPING ME. I WAS PUT ON ROPINIROLE 1MG BID WHICH DID NOT HELP & NOW I'M ON 2MG AM PM. I WAS HAVING SO MUCH BURNING IN BOTH MY LEGS & NUMBNESS & SEVERE CRAMPING IN BOTH LEGS(WHICH I HAD HAD FOR YEARS) SO I NOW ALSO HAVE BEEN PUT ON GABAPENTIN 300MG ONLY 1 EACH PM. ALL IS GOOD EXCEPT THE CRAMPING EVERY NIGHT IS UNBEARABLE & WONDER IF ANYONE ELSE IS BOTHERED WITH THIS?

[SueJohnson]

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

You were on 3 times the maximum dose for pramipexole and when your doctor switched you to ropinirole s/he should have given you 6 mg which is why you are having so much trouble. You should ask for 6 mg or switch back to pramipexole. 300 mg of gabapentin won't help you while you are on those dopamine agonists.

You are also suffering from augmentation. 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. this means you have to come off it as it will only get worse.

So first go on 6 mg ropinirole or 1.5 mg of pramipexole and let your symptoms settle.

Then check if you are on the slow release ropinirole or pramipexole. 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. 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 but they are not up-to-date on the current treatment recommendations.

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 it for several weeks. 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.

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, 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 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...

If you go back to pramipexole then reduce by half of a .125 tablet every 2 weeks or so.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, 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.

[Joolsg]

I agree totally with SueJohnson.Until you get off all dopamine agonists, you will never find relief.

You should join rls.org and find a good doctor near you who can get you off prami and Ropinirole and who knows how to prescribe replacement meds correctly.

[SueJohnson]

If you tell me what city and state you live in I may be able recommend a knowledgeable doctor.

[Big4844 in reply to SueJohnson]

I LIVE IN CORPUS CHRISTI, TX

[SueJohnson in reply to Big4844]

Dr. William Ondo - Houston Methodist , 6560 Fannin St Suite 1002, Houston, TX 77030 Phone: [phone] He is one of the world's experts. He doesn't live close to you but would probably only require you to visit once if that and then could do telehealth visits.

[fabPhilly in reply to SueJohnson]

Hi Sue, Thanks for all your great work on this site. I'm an older athletic female and I too suffer from NLC and RLS...Can you recommend a doctor in the Sarasota/Venice/Bradenton area? (Sarasota first). Thank you.

[SueJohnson in reply to fabPhilly]

Unfortunately the only one I have is aways from you but she does telehealth and might not even require you to go there or if she does would only require it only for the first time. You can call and ask. She is very good and will prescribe opioids if needed.

Dr Nura Festic at Jacksonville Sleep Centre 6930 Bonneval Rd #2 Jacksonville, FL [phone] jaxsleepcenter.com/

[SueJohnson in reply to fabPhilly]

Are you taking anything for your RLS?

[fabPhilly in reply to SueJohnson]

No...just trying anything and everything that isn't a drug first. The cramping seems to come on seasonally as the humidity rises. The RLS does seem to have some dietary triggers for me but the neuropathy and numbness is constant and 24/7, not just at night, though the cramping is significantly worse at night.

[BoldMove in reply to fabPhilly]

L-Theanine worked for me for a few months. I kept upping the dose. because everything I try becomes less and less effective.

[ChrisColumbus]

Besides the issues you're having with dopamine agonist augmentation which you need to address following Sue's guidelines, cramping can also be separate from RLS and linked to dehydration (many of us don't drink enough trying to avoid getting up too much in the night), magnesium deficiency, other nutrient deficiencies, electrolyte imbalances, statins...

[Whippetmama]

I can only add that I used to be plagued by leg cramps, too, until I began taking 400 iu of vitamin E at bedtime. Give it a try. It's inexpensive and won't hurt. Good luck.

[violetta254]

I know this seems very simple but after suffering with severe leg cramps, I tried electrolyte pills, Salt Stick, and although it helped, it didn't fix it completely and I hate taking pills. I have switched to two pickles a day and some pickle juice and my cramps have gone away. However, I did not have burning which sounds neuropathic and not just simple dehydration. But it is pretty easy to try. Both of those, pickles and Salt Stick, seem to help RLS, particularly if I have been exercising in the heat.

[Leeserann]

Hello,

I'm so sorry, you've suffered with this for so long. I too suffered for years and would still be suffering if I hadn't listened to Sue Johnson and the other wonderful people here. They helped me wean off the pramipexole (which is one of the DA's or dopamine agonists) that they now know cause far worse problems and actually makes your RLS symptoms much worse. That's what augmentation is; when the problem gets worse BECAUSE of the treatment that was prescribed.

I was skeptical but desperate enough to try something different. I am now on 900 mg of gabapentin and completely off the pramipexole. I am happy to say that if I take it when I'm supposed to and go to bed when I'm supposed to, I have NO RLS symptoms. After living with it for over 25 years and being on the pramipexole for almost all of it, it seems nothing short of miraculous. Follow the instructions here - you won't be sorry.