when will symptoms go away?

[Rlshater3458]

I was on mirapex .50mgs for about 20 years. Worked great until it didn’t. Severe augmentation. I’m working with an RLS specialist who weaned me off mirapex and onto gabapentin. I’m currently take 400mg at 7pm and 600mg at 10pm. I stopped mirapex totally about a week ago. My evening RLS is pretty much gone. But during the night I’m up every 1 to 2 hours. It’s brutal. My question is: when will the nighttime disruptions end? How long do I put up with not sleeping? This is really getting to me. I’m at my wits end. When will it stop???

[SueJohnson]

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

It can take several weeks and sometimes longer for your symptoms to settle. If you came oiff mirapex too fast ( more than half of a .088[.125] tablet every 2 weeks) it will take even longer. Also it take 3 weeks for gabapentin to fully work and it won't fully work until your symptoms have settled. After that 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. Since you are already taking more than 600 mg take the extra 4 hours before bedtime ( 2 hours before your last dose so if your bedtime is 11:00 take it at 8:00, not 7:00) 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

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 or antacids don't take it within 2 hours for the same reason .

Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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 uptodate 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, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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, 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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Rlshater3458 in reply to SueJohnson]

I’ve diligently read all your posts Sue and I thank you for them. But I’ve always been confused about your statement that gabapentin won’t fully work “until symptoms have settled.” Can you explain that more fully? I truly do not understand what you mean by that. Settle how?

Another question : my bedtime is midnight. I’m confused about how and when to split my gabapentin dosage. I currently take a total of 1000mgs with my doc’s permission to go to 1200mg. Can you tell me specifically when I should take how much? Currently I split 400 then 600. What timing do you suggest?

My iron and ferritin levels are good.

Thanks so much!

[SueJohnson in reply to Rlshater3458]

If you followed my usual advice in coming off mirapex when you made each reduction of mirapex especially towards the end, your withdrawal symptoms increased and then settled back down before you made your next reduction. This is what I meant .

You can take 600 mg at 10 and 400 at 8. You can also experiment and take 600 at 11 and 400 at 9.

Do you know what your ferritin is? Doctors will tell you it is good or normal but what is normal for others is not normal for those of us with RLS. So if you don't know, call the office and ask.

[Rlshater3458 in reply to SueJohnson]

Ferritin is 114. Even though I go to an RLS specialist (I live in NYC and there’s a Sleep Disorder Center at a nearby hospital), I can’t convince my doc it should be higher. I pushed; she pushed back harder and gave me a definitive NO. So that’s a no-starter. But I did rush off the mirapex faster than you advised, going from a little less than .125 to nothing. So perhaps it’ll take me that much longer. Thank you for your schedule of medicine taking. That’s most helpful and I will follow that. I misunderstood, thinking the dosages needed to be 6 hours apart.

[SueJohnson in reply to Rlshater3458]

You can take OTC iron supplements to raise your ferritin higher, You don't need to convince your doctor.

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months although your doctor may not be willing to give you one. In that case post back here.

[Joolsg]

You only stopped Pramipexole 7 days ago. You were on it for 20 years.Withdrawal is absolutely brutal and lasts a minimum of 3 weeks.

But every day off that poison will be better.

See the withdrawal schedule on RLS-UK website under Useful Resources. It tells you what to expect.

You'll start to get an extra 30 mins to an hour without severe RLS with each passing day.

The gabapentin will start to work in about 2 weeks. You can ask for a low dose opioud /codeine, tramadol or oxycodone) or try to stick it out. In about 2 to 3 weeks- things should really settle as your brain starts to settle and repair.

Take gabapentin as directed by SueJohnson and ensure your serum ferritin is above 200ųg ideally via iron pills every other day or iv iron infusion.

[Rlshater3458]

Thanks so much for this. So I have more weeks of torture ahead! I do take iron pills but was directed to do so every other day. Perhaps I’ll just take it upon myself to take everyday and see if that helps.

I doubt I’d be able to get an opioid. On bad nights I’ve taken Xanax which has helped me get some sleep. Are there any contraindications to Xanax?

[SueJohnson in reply to Rlshater3458]

Take it every other day as you will absorb just as much that way with less side effects.

[Joolsg in reply to Rlshater3458]

No take iron every other day. Otherwise hepcidin blocks iron absorption.Xanax is fine to take on bad nights. You are doing really well. Keep going- you will soon be through the awful nights and your RLS will settle.

[Rlshater3458 in reply to Joolsg]

Thank you so much. I appreciate the vote of confidence. And I must tell you that the UK site was invaluable.

This newsletter is wonderful!

[Beckonwood]

I used Mirapex for a number of years then went to oxycodone which I used for a number of years and was taking a lot now I’m on lyrica and one oxycodone 5 mg at night both works great

[Birdland]

In my experience, the first four weeks after my last dose of Ropinirole were the worst. I’ve been off of it for four years now and can say that it took about 3 years to really feel somewhat normal. At first I thought I was severely damaged for life, but each year there was an improvement. Don’t forget how much this drug can take over your body and mind.

[Rlshater3458 in reply to Birdland]

Wow. Just wow. I am 76. I sure hope it does not take 3 years!

[Birdland]

I would guess it won’t take you that long to fully recover. My body is extremely sensitive. The worst was definitely over in a few months, but I really didn’t realize that I would continue to improve. It was a welcome surprise.