I am interested to know if anyone has had the following experience or can offer any explanation.
I have suffered with RLS for approximately 10 years and whilst my RLS is reasonably well controlled by 1200mg GABAPENTIN my insomnia is not. I sleep for an average of 4 to 5 hours of very broken light sleep per night. Sometimes it’s much less. Unusually I do not suffer too badly for my lack of sleep and function most days reasonably well. Often I am still reading at 3am and although I feel tired my brain appears not to recognise the need to sleep.
However I finally got an appointment at the sleep clinic and was given equipment to wear for one night. This included a monitor to attach to my finger, a band of electrodes across my chest and waist and electrodes to attach to each calf, feeding into a box that sat on my chest. Bizarrely I slept more soundly than I had ever slept in 10 years. It was almost like I was drugged, I struggled to wake up the next morning and could happily have slept much later, it was wonderful.
I have not yet seen the consultant for a discussion.
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Sounds like stress could be a factor.When you were being "cosseted" you had no worries.? Everything was out of your hands. Just sleep and let the testing take over??
I wonder if you were to go through all the sleep hygiene routine, especially journaling and writing a to do list for the next day, would that be a help- do you think??
I also suffer from chronic insomnia, peripheral neuropathy and RLS and my time to go to bed is usually at 3:00am because is when the pain and the RLS calm down and the sleep apnea machine is essential for me to use it every night for few hours otherwise I will keep waiting up constantly and getting headaches also. I am taking gabapentin for me still a high dosage and for long time and is not working for long time but the withdrawal is horrible I already lowered the dosage and it was a nightmare. For whatever reason no medication works for me some supplements and creams and also depends if I do some exercises during the day and this problem started like 5 years ago because I was taking a medication and I didn’t know that was a side effect and never knew about RLS before I am out off that medication but the symptoms never went away. My concern is sleep deprivation because is taking a toll on me sleeping 3 or 4 hours per night when I know I need more to really rest not just the body also the cerebrum that needs rest to recharge. I am working on this but is not easy there is a lot of things happening at the same time. I hope that you find something to help you and good luck
when you described your night experience with RLS I felt you were perfectly describing mine to the tee! I too cannot fall asleep despite gabapentin which is supposed to be sedating. It is fairly well known that RLS disrupts sleep. So what you experience is in line with medical knowledge
It’s difficult to say what happened in your case. One thing that I’ve noticed is that RLS flairs up where it is unbearable and there are other times you can almost get away not taking anti RLS medication. So in your case maybe coincidentally you had a “good RLS night” when you had your test.
Please keep in mind this is speculation on my part and despite my research, I do not fully understand this disease aside from suffering it
Hey! I am "60 female" (grin) and can really feel for you. But I totally totally agree with Nikos 64 below "One thing that I’ve noticed is that RLS flairs up where it is unbearable and there are other times you can almost get away not taking anti RLS medication. So in your case maybe coincidentally you had a “good RLS night” when you had your test.".
I had my first meeting with Professor Walker at the Neurology Hospital in Queen Square about four months ago. For the couple of weeks before the appointment, my RLS was great. So I went in say that the Pregabalin 300mg plus 0.125mg Ropinirole a night was working amazingly.
The next day, the very next day, my RLS woke up with a vengeance, and I have been struggling ever since. A really really bad patch. Really annoying.
My husband has cervical dystonia and anxiety ... he has good patches and bad patches, regardless of the fact that his medication never changes. So I guess it is the same for us.
This doesn't really help - but at least you know that you are not the only one.
Unfortunately the sleep study concluded I had mild sleep apnea, and I’m waiting to be fitted with a mask. I’m not convinced this will help with falling asleep.
It actually does the opposite - it makes a noise & hisses so keeps you awake. I set mine to delay the pressure until I am asleep. My sleep specialist said the RLS meds conflict with the CPAP machine so not as effective as it should be. They told me to stop my Oxycodone & Gabapentin but withdrawal symptoms stop me sleeping at all for two days so back on them again.
I don’t know which brand you are using for the sleep apnea my doesn’t have any noise at all and if I don’t use it the few hours I sleep I will be awake every hour and wake up with a terrible headache, is an idea that maybe can help you and good luck
My RLS is about the same as yours. I have noticed it for about 15 years, take 600mg GP at 5pm and 900mg at 9pm. I try to sleep at 11pm but I usually am awake until 1-4am. I am writing this response at 1:40am. I believe I also have Peripheral Neuropathy in my feet, ankles and shins. I have had 2 full lab sleep studies. I have obstructive sleep apnea. At times I wear compression socks to ease the pain. My best sleep seems to come after 8am and can last the usual 2 1/2 hours. Unfortunately, I attack the refrigerator and cupboard at night and am 40 pounds overweight.
In my opinion, the 2 sleep studies did little to help treat my problem. My snoring and messed up covers tell me as much as the studies. However, I did and should use a full-face CPAP unit which seems to be the only reliable treatment for sleep apnea. At times stretching the calf muscles reduces the RLS. Therefore, I am not too surprised that the electrodes could help. I would also suggest staying away from dopamine agonist medications (pramipexole, Neupro patches, ropinirole) and opioids. My RLS and PN are worse when I am tired from activities and/or no sleep.
I am 77 years old and live in south Texas, USA. Best wishes!
I doubt they could conclude much from a Sleep Study without electrodes to your head and face. Sounds like they are only looking for movement here, not brain function / proper sleep phase analysis. I have had three or four polysomnograms, and only the first (at an NHS hospital) was as you describe, but that one was only screening for Apnoea, which I don’t have fortunately. My subsequent observations showed alpha wave intrusion, and very little if any deep / restorative sleep.
That's interesting. I've just seen a neurologist and got some useful feedback and that night I slept unusually well, to the the point that it almost made me wonder why I'd bothered seeing him. The following night was mostly back to usual but I suspect there is some relationship to stress and the sympathetic nervous system.
I had a similar experience. To briefly put all this in context – I have severe RLS for the last 5 years. My then-GP started off with LEVODOPA, then NEUPRO (the patch). Since a couple years ago, I have gone cold turkey (retired, so easier to handle).Naturally, my sleep pattern has gone to hell. I travel a bit, and plane trips (2 to 14 hrs.) are a real problem. So I only take the aforementioned meds a couple of days before the trip, extra dose on day of trip and stop immediately afterwards. It works only sporadically, and often times I spend long periods standing in the air plane galley. About 3 years ago, my GP wants to rule out Sleep Apnea, I was given a monitoring set with electrodes and all. I was sleeping on average no more than 1 - 2 hours each night, in 5 – 10 minute intervals. That night after I was hooked up, I slept like a baby, straight for 5 hours and not even woke up once. Looking back, I consciously tried to limit my toss and turns (so not to rip out the wires and all) when I went to bed. This might have carried on into my subconscious when sleeping. Or did it have something to do with all the micro electric currents criss-crossing my body? Don’t really know. But this ‘incident’ has often caused me to wonder about our subconscious where RLS is concerned. I see medications discussed here in this forum all the time, but have yet to read much about how our psychology/subconscious affect our RLS. For me the following remain mysteries to me:
- On plane trips, where I often go nuts, I can forget about my RLS during those times when I had very involved conversations with fellow passengers, even while cooped to my seat. These conversations have to involve something I have a genuine interest in. I would really like to find out whatever ‘that’ is that shut down my RLS.
- Why is it that when my RLS is happening while sitting down or lying down, it’s stopped as soon as I stand up? What has that simple change in my posture triggered that nullifies RLS?
What happened five years ago that might have worsened your RLS? Melatonin? SSRI? PPI? Statin? Back injury?
The reason RLS disappears when you stand and walk is because dopamine is released in a nanosecond to balance you as you stand and coordinate movement as you walk. If you’re somewhere that you can’t walk, try standing on one foot. The more imbalance your brain senses the more dopamine will be released. Some people with RLS will sit on a stability ball in the evening so they can watch TV in peace.
Distraction works great for a lot of conditions, including RLS it seems. Plus, I bet a good amount of dopamine is released when having a stimulating conversation.
We tend to get RLS on a plane because of somewhat hypoxic conditions in the cabin. Up to 25% less oxygen. I read a study that reported higher levels of RLS in villages at higher levels in the Himalayas than lower ones. The incidence of RLS is much more rare in this region either way - high or low.
I take 25 to 50mg of ferrous bisglycinate about an hour before bed on an empty stomach. My RLS is gone in one hour for one night. So I must repeat every night. Been doing this for 10 years and it has never failed me. There’s a long explanation for why it works that I’ve described on here at least a million times. Good luck!
Thanks for the feedback. As to why my RLS turned severe 5 years ago - I always had difficulties sleeping since my teen years, and some rudimentary symptoms now and then until 60 or so. Then it got worse. I did try a lot of stuff, including Melatonin, and a generic Halcyon. During this period, I was prescribed LEVODOPA. I retired 6 years ago ( and it worsened as I age. I have been diagnosed by the hospital (with electrodes all over my body) as severe RLS about 4 years ago and that’s when they switched me to NEUPRO. Then I went cold turkey as I said in my earlier post.
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