Klonopin and RLS

[GrodeMaster]

I'm 64. In 2003, at age 43, my RLS had become a nightly occurrence. I sought help and my PCP prescribed klonopin, eventually increasing the dosage to 2mg before bed. I weaned off it in 2018, but the damage was done. I have COPD and an undiagnosed nerve disease in my legs. My identical twin brother has neither ailment. because he never took klonopin. RLS is killing me, literally.

[SueJohnson]

Klonopin does not cause RLS. It could just be a coincidence that your RLS started then. Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask 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. 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 your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen , 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

[GrodeMaster in reply to SueJohnson]

Hi Sue. Klonopin was prescribed as a treatment for preexisting RLS. I've suffered from RLS since childhood. It worsened considerably as I got older. My medication list is lengthy: lamotragine, sertraline, Xanax, bethanecol, pramipexole, ropinerole, gabapentin, propranolol, (l-buteroyl sp?) with nebulizer, and flomax. I'm on a lifetime ban for NSAIDS and aspirin, and am extremely allergic to sulfa drugs.

[SueJohnson in reply to GrodeMaster]

Are you taking both ropinirole and pramipexole? How much are you taking of each? If you are taking both you are probably over the maximum limit which by definition is augmentation. Even if not you would be wise to come off them because they are not controlling your RLS which also is an indication of augmentation. I will give you the instructions for both but only come off one at a time.

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.

Then check if you are on the slow release pramipexole. 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.

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.

You list gabapentin as one of your medicines but it won't help much until you are off pramipexole/ropinirole for several weeks and your symptoms have settled. The beginning dose is usually 300 mg gabapentin. Normally you would start it 3 weeks before you are off pramipexole After you are off pramipexole/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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

Sertraline makes RLS worse for most. Safe Antidepressants include Wellbutrin and trazodone. Trazodone also treats anxiety and insomnia. Wellbutrin is slightly better for depression. It doesn't kick in immediately. There are even anecdotal cases for it relieving RLS symptoms.

Flomax can also make RLS worse. A safe one is Tadalafil (Cialis, Adcirca).

The others are OK.

[Lucyliu101 in reply to SueJohnson]

Thank you so much for sharing this information with us! I had to stop taking Requip because I started having rebound RLS. I was prescribed Gabapentin and it did help. The problem that I had was that I was also taking Trazodone for insomnia. After taking them both at bedtime for a while, my brain didn't work right. It got to the point that I was unable to comprehend what people were saying to me That really scared me! I stopped taking the Gabapentin and my symptoms gradually went away. I take magnesium a little while before bedtime, a small dose of Clonopin, and I use an excellent CBD Tincture, too. They really help with my RLS. Thank you again for sharing this important information with us!! Mitzi from Kentucky! 🙋🏼‍♀️🇺🇲😊

[GrodeMaster in reply to SueJohnson]

I KNEW I forgot one. I'm taking trazodone.

[Joolsg]

Have your doctors confirmed that the klonopin has caused COPD? I'm sorry to hear that.Follow SueJohnson advice for up to date treatment of RLS.

[GrodeMaster in reply to Joolsg]

No, nothing beyond predictive/contributory as a causal factor; but exacerbation of existing COPD symptoms is 100%. My health history is rather atrocious, I'm afraid.

[Birdland]

GrodeMaster, are you currently taking pramiprexole? Pramiprexole and ropinirole are dopamine agonists. They work great for RLS at first but before long usually cause RLS to become much worse. This phenomenon is called augmentation and can turn a person’s life upside down. Is your RLS under control?

[Bieler]

I’m sorry you’re going through this. I, too, have suffered from RLS since childhood. After being on many drugs including (including class 1 and II opiates) I found that Tramadol is a Godsend.

It’s a class IV drug. For me, I’m prescribed 50 mg 4 X per day. Fortunately I have no side effects. Instead of upping my dose over the years; I’ve lowered my dose (because I wanted to) from 8 per day to 6 and now to 4.

It’s the only drug that works for me. It does nothing for normal pain for me but for some reason, completely takes away the neurological pain of RLS. Once I was given 1000 mg of it by injection for a back injury and it did nothing for my back pain but it took my RLS away.

Many people have had the same experience. They stumbled upon it by being given Tramadol for an injury and found that it took away RLS.

I have also found that Aspertame in foods or drinks and Antihistamines trigger my RLS terribly.

Just last month I had a terrible reaction to a new laundry soap and I had to take Benadryl. As I felt my itching and swelling go away; I felt my RLS kick in. It was so bad that it affected my arms, as well as, my legs. Needless to say it was a miserable night. At that point tramadol was of no help.

Hopefully your dr will allow you to try it, maybe just at night. My first dose was 100 mg at night and I slept like a baby. Now I take only 50 mg at night but also morning noon dinner time.

I do hope this helps you. There are many people on this forum and others who swear by it.

All my best to you.

[HelloNewYork in reply to Bieler]

I have severe RLS. In my whole body all day and night. Tramadol also works great for me . It was prescribed for breakthrough pain. 50mg at night, but sometimes even 25 mg is enough. I use it to supplement my pregabablin which i take am 200 mg noon 100 mg 7 100 mg 11pm 200 mg although after reading rhis string it sounds like moving my nightime dose up 1-2 hours will be more effective. I was taking lyrica 165 mg ER twice a day but it was so hard to get and led to weight gain so I cut to once a day and increased the pregabalin (generic for lyrica) and cut the final lyrica. Pregabalin is much easier to get, thankfully.