Restless Legs Syndrome (RLS) Discussion Board

I'm new to the board so I don't know my way around yet or what I am supposed to do so I will begin with a very brief introduction.

My name is Frank and I live in Anchorage, Alaska. I've lived in Alaska for 51 years. Coincidentally I have had RLS for 51 years, getting my first RLS symptoms shortly after moving here, although I doubt there is any connection between RLS and moving to Alaska.

Like many of you I find it is a very difficult condition to deal with. For many years I averaged about 2 hours of sleep per night. I have been to several sleep clinics and the doctor of one of the clinics told me I have the most severe case of RLS that he had seen.

All of my previous doctors treated my RLS with dopamine agonists. I had severe augmentation issues but the doctors just increased the dosage of dopamine agonists. Then they told me there was nothing more they could do to help me. In October last year I found a doctor that recognized I was having severe augmentation. He prescribed Buprenorphine, a synthetic narcotic, an slowly weaned me off the dopamine agonists. For a brief time, about one month, I took no dopamine medications. That has slowly changed. My RLS symptoms are mostly under control but now I have severe insomnia so I am still limited in the amount of sleep I get. I now get about 3.5 to 4 hours of sleep per night but the sleep is sporadic broken sleep rather than a straight 4 hours of sleep. The doctor is trying to treat my insomnia but so far hasn't been able to control it.

Insomnia is actually a part of RLS for most of us and most of us also do not do well on the sleep meds that most doctors try to use to treat our insomnia. Drugs like Ambien, Lunesta, Remeron, Sonota, etc probably don't work well because they are treating a different system that what is causing our insomnia. The drugs that seem to be the most effective for many of us are gabapentin, pregabalin (Lyrica) and Horizant (a modified form of gabapentin). These don't help everyone, but they seem to do better than the sleep aids.

The other thing that might be causing your insomnia is something that doctors don't seem to recognize but that is common enough that many of us refer to it as "alerting". Alerting seems to be an opioid side effect that hits some of us. When it hits, you simply cannot fall asleep. You feel wide awake until the side effect wears off. I take methadone and have to take it at mid-day so that the alerting side effect has worn off by the time that I need to go to bed. It isn't a matter of needing to move my legs, I simply am not sleepy for 8 hrs after taking my daily dose. Doctors all seem to think that opioids are sedating, but for some of us they have the opposite effect.

So glad you found your way to us! You will get help here for sure. You've been through the worst part already, the augmentaiton and withdrawal. You have a doctor who is relatively well-read on WED/RLS. So you're doing much better than you were, and with a bit of information, I think you'll be doing quite well.

I don't have anything to add to what Steve said, but I will say the same things differently :>

Regular sleeping meds are not effective, as he explained (plus they're dangerous if the WED/RLS breaks thru, because the urge to move trumps the grogginess so we stumble around bumping into walls). There is evidence that we have too much glutamate in our brains; glutamate is a neurotransmitter that gets things revved up, and this keeps us awake even when the sensory symptoms have been dealt with (e.g. by your buprenorphine). Glutamate can be counteracted by a neurotransmitter called GABA. Gabapentin was intended to be a drug that imitated GABA, but it doesn't actually affect GABA levels. Gabapentinoids block certain channels in our brain cells that release glutamate, so they result in less glutamate, which is almost the same thing as more GABA. Gabapentinoids include gabapentin, gabapentin encarbil / Horizant, and pregabalin/Lyrica.

The gabapentinoids are also known to improve WED/RLS symptoms, although the symptom improvement tends to be minimal for those of us who have augmented.

So they might improve the sensory symptoms a bit, and they make us sleepy. Yay!

Also, what Steve said about the opioid alerting is definitely a thing. I can't deal with it by taking my opioid earlier because I take hydromorph contin, which has a shorter duration of action Steve's methadone; if I took it any earlier, it would wear off long before the night was over.

Anyway, I think adding Horizant or pregabalin to your buprenorphine should help you. Read up on the possible side effects - (dry mouth, dizziness, forgetting words, and even suicidal ideation - this does not mean you will get any of those side effects, but it's possible). You might need to tweak the dose to get something that makes you sleepy without side effects.