Life without Klonopin is much harder. Neupro is okay so far. What about methadone?

[DansLeVent]

I’m 61 and have pretty good health insurance in the United States. I see an internist, a sleep neurologist, and a psychiatrist (the latter necessary because of medication side effects.)

Long story short: Klonopin was helpful for many years; they want me off Neupro; Suboxone just kept me spacey and in bed; now they’re suggesting methadone. I wonder if I could go back to Klonopin after being off it for so long.

History with RLS

I’ve had RLS with periodic limb movements since I was six, although there were some wonderful breaks from it in my 20s and 40s.

In 1991 I started 0.5 mgs of Klonopin, and by taking occasional “holidays” from the drug (strange term for a week of hellish nights), I was able to stay at the low dose for many years. It lowered my mood enough that I needed an anti-depressant, but it worked great for RLS.

After about 10 years I increased to 0.75 mgs, then a long remission with only an occasional need, then back to 0.75 mgs from about 2010 to 2015. At that point I needed to increase to 1 mg, but the increased dose made me confused. The neurologist was thrilled to take me off the Klonopin, saying “We have much better options these days!”

Nine years later, I’m still waiting for that “better option.”

I’ve tried Sinemet, ropinirole, pramipexole (those dopamine agonists are torture), gabapentin, and pregabalin. An iron infusion a couple of years ago also helped some, but my iron numbers are too high to allow for another infusion.

Current RLS success: Neupro

A friend (!!) with Parkinson’s suggested Neupro, and that has worked fairly well for me at 1.5 mgs (I split a 3mg patch) for over two years, but I have RLS breakthroughs about once a week. This leads my doctors to say I need something different in place of Neupro.

History with non-24

Also, since my 20s I’ve had non-24 sleep disorder, which has gone from having a “26-hour day” (falling asleep about two hours later every night) to something more chaotic. Trazodone worked fairly well, giving me reliable sleep and allowing me to lead a productive life for decades.

I was able to take Trazodone from 2002-2010 when my RLS was mostly in remission. Now, though, I can’t. Unfortunately, once I stopped the Klonopin in 2016, Trazodone made the RLS unbearable, with a gnawing ache in addition to the “itchy, creepy, crawly” legs and spasms: I just can’t take it. Without Trazodone I’ve spent the past nine years breaking plans, and I had to retire.

Current attempts to end Neupro

My doctors said last year the goal was to get me off Neupro and use an opioid instead.

So in August I started 0.5 mgs of Suboxone (with buprenorphine). It did help the RLS, but the side effects were too debilitating: feeling “spaced out” with no initiative to do anything, simultaneously hot and cold, sweating, and worst of all, ANXIETY. I got hit with anxiety and had to start Buspar four weeks after starting the suboxone. I was able to reduce Neupro from 1.5 mgs to 1, but no less than that.

Two weeks ago the doctors told me to stop Suboxone, and I could try a different opioid.

Good news: The anxiety went away when I started tapering off the Suboxone. (Tried quitting cold turkey, but the withdrawals were too strong.)

Bad news: I had to go back up to 1.5 mgs Neupro, and I still have the breakthroughs, but no Klonopin to help. Hydrocodone cough syrup works in a pinch, if I feel like I’m at my breaking point, but it’s not workable long term.

The doctors suggested I try codeine next, but I already know it makes me feel awful, so now they want me to try methadone.

Methadone?? Has anyone had success with that? What might I expect, especially given how sensitive I was to suboxone?

I’d really like to find something that would handle the RLS without making me feel wiped out or confused, and let me get back to taking Trazodone to keep my sleep schedule closer to normal. I had to retire because of all this, but I’d really prefer to be working.

Sometimes I wonder if, after nine years of very little Klonopin, I might be able to get some benefit from it again.

Thank you

[SueJohnson]

Neupro is a dopamine agonist like pramipexole and ropinirole and you are suffering from augmentation.

To come off neupro you can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount which would be 2.25 mg. Since you can get ropinirole in .25 tablets this is the easier way to reduce.

Since you have been unsuccessful in the past reducing below 1 mg I suggest you switch to ropinirole and then you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Let me ask about your experience with gabapentin and pregabalin. Were you taking them when you were on a dopamine agonist? If so they wouldn't work. If not how much were you taking? You may not have taken enough or in the right way.

I'm surprised klonapin helped your RLS . But I would think you could try it again, but it too won't help much if at all until you are off Neupro.

Methadone should work and help you get off Neupro.

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. This is the first thing a doctor should do. 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

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.

[Joolsg]

Buprenorphine is regarded as better than methadone. If you had anxiety on Buprenorphine- you will likely get anxiety on methadone.I developed panic attacks/anxiety on Buprenorphine but it stopped ALL RLS symptoms so I was determined to make it work.

On the advice of Dr Buchfuhrer by email (I'm here in UK) I added 50mg pregabalin. It stopped all anxiety/panic. After about 6 weeks I slowly reduced pregabalin and the anxiety had gone. My body clearly adjusted to Buprenorphine. The sweating/hot/cold I was also helped by pregabalin. Pregabalin is used to stop menopausal hot flushes.

So- perhaps start Buprenorphine again BUT add a small dose of pregabalin to counter the anxiety and sweats.

The side effects do settle after a few months and it is highly effective at controlling RLS.

[Beepbeeped]

Ask to go back on Klonopin. It suits you. This is becoming a guinea pig scenario.

[violetta254]

I think methadone would be worth a try. It is mostly working for me. It does make me sleepy but that could be because I still have some primary insomnia to deal with. It does cause some sweats, but no anxiety. I also take a small dose of baclofen which helps me but many people cannot tolerate baclofen and say it makes their RLS worse. It is far better than any other opioids that I have tried. If you can tolerate a low dose of pregabalin (which I can't) that would probably help the sweats. I occasionally get some breakthrough RLS on 10mg. but that is top dose I want to use. I have not been tempted to up the dose in 3 years so really not causing any addiction despite it's rep as an addiction drug.

[JustVisiting23]

Methadone had worked well for me. Initial side effect was nausea which resolved. Currently, sleepiness in the afternoon but at least RLS is controlled.

[JakeRLS]

Sorry for your ordeal. I started with Klonopin myself about 15 years ago but began augmenting after less than two. Tried a number of different meds but the only one that really worked effectively was hydrocodone. I've been taking it for probably 5 years and during that time went from 5 mg to 15 but it's been relatively stable for the last two plus years.

[Katzers]

Hi I am Kathy, I currently have been on all the types of meds since 2009. I had bad reaction to the ropinirole. I cant take it as well as pramipexole anymore they have told me. I went to a sleep study at Johns Hopkins in 2013 to confirm my Dx. This helped in every situation that I had to speak to a Dr about my Tx.I have found a perfect combo of docs. I have a sleep doc, and Neurologist and my PCP is regarded as having knowledge in this area also so I am lucky. I had started on Methadone for about a year now. It has helped me tremendously. But the side effect for me are diaphoresis or sweating. I become hot all over and begin to sweat from my head, down. Mostly upper body. This in itself is managable except when its cold out. I cannot tell you how cold I got this past winter because it was dangerously cold and once wet the cold will sink to your bones. My coat was off and on and off and on until I had to get into a shower and warm up. BUT be aware that you will become dehydrated very quickly and then the medication doesnt work right if I am not hydrataed enough. Here are things I have found that agitate my RLS. Any alcohol robs dopamine, dehydration, being too sediatary or too much excercise. By exercise I mean be sure to rest when your body wants rest. Its the only time in 24 hours rest can be had is if your body wants it, dont rest and you will be restless later. Long drives where legs are not able to be moved around enough. too much salt on snacks chosen, too much sugar, eating right before bed, not breathing deeply enough, hense exercise is important, stress, anxiety situations, too hot or too cold, headaches, pain (I have psoriatic arthritis and this can be a game breaker, use ES Tylenol. I do have a temporary order for ativan. I have recently been separated by my husband because he couldnt "take it anymore." Im 65 had to move by myself quickly and that started in OCT of 24 i moved myself and I have a cat. Pets are awesome for RLS. IF I have a breakthru during the night which is often I will say okay if you want to do this then your going to exercise. walking around isnt enough for me to battle this thing called RLS. mentally I am strong and always have been. RLS is about to kick my Butt because I hate it. It agitates my brain and whole body. I have to leave church services, meetings online if I cant sit still. Just everything, becasue you have to move or have spasm I call them where I flail my legs so hard that i actually broke my knee cap and tore a maniscus. That is still painful so I try to exersice my body normally. I talk to my brain because theres a spot thats broken. I will tell it to relax and to perfrom correctly or else. I am hoping that since I am now settled some of my s/s will subside a little bit. The Ativan is wonderful for getting a good nights sleep and i could advocate that myself but they will never give me a regualr order for that becasue of what it is. SO i make sure I use it correctly first and then only ask if its needed and theres been a few months in between I have had 3 orders now and I am sure there wont be anymore, however it is so very helpful I just feel like a zombie and since I am alone I wont drive anywhere if its feels like its still in my system since I have methadone on board. But what a bunch of Docs dont understand is that this concoction makes me feel normal, not doped up, not incapable of driving properly, not wanting to get more drugs to get a deeper sense of a better self because we all know that it will stop working and we will have to get off these drugs first before starting another. I wish you luck, i have been okay on Methadone, its just the faces of others when they see this order such as your pharmacists. They need to understand that as well. My new pharmacists are great. One will come to serve me himself to see if I am okay i believe. He always says step aside I will take her. SO he has conversations with me I feel he is just making sure I am okay on these meds. On board I also have pregablin, never had a problem with this drugs either. Hope all will be well this by far is the worst thing Ive had to deal with even the pain from the arthritis doesnt compare with the management of RLS. If I get a bit agitated while trying to get medications to flow, or talk to a new doctor then I am viewed as agitated and they start looking at my drug list. This will stop IF you can talk slowly and deliberatly to make them understand this is a life changing thing we have. if you cant sit still thats a problem with others, It is in the same family as parkinsons so I explain it that way, Good luck!

Kathy