RLS and insomnia

[Muftah36]

so I’ve never found relief from RL despite meds, iron infusion and numerous other interventions including CBD . I take 1800 mg of Gabapentin daily( 800 early evening and 1600 at night) plus Dilaudid 2 mg at night and Trazadone 100 mg at night. I continue to be up at least twice as they over ride whatever drugs I take. I’m very conscientious over what I eat , and am caffeine free and alcohol free. It’s so depressing that nothing seems to work for me . Now I have acquired a new problem which I don’t know how to cope with. Insomnia. When I wake at 3 am or later I cannot get back to sleep no matter what. I do meditation ( 3 rounds last night) breathing , stretching and having to add some Clomazepam left over from a previous prescription. Nothing works to get me back to sleep, even when I get up and walk around the house again, it makes no difference. At my wits end. What a horrible condition this is. I’m so afraid that this will be my new norm and I know I can’t cope . Any suggestions will be greatly appreciated. This is a great forum and a lifeline to RLS sufferers. Thanks for any help offered.

[SueJohnson]

For insomnia I would recommend lunesta or ambien although if clonazepam didn't work, they may not either unless you took clonazepam for a number of years in which case its effectiveness would have worn off. Neither are benzodiazepines. Ambien is usually recommended for short term or intermittent use but lunesta can be taken long term. As for your gabapentin, doses above 600 mg at a time aren't as well absorbed. You should take 600 mg 1 to 2 hours before bed, 600 mg 4 hours before that and the last 600 mg 6 hours before bedtime.

[Goldy700]

I have had great relief from insomnia and RLS with the medical cannabis containing THC. CBD alone is not effective for me. The best relief comes from vaping the flower which i get prescribed. I chose cannabis because all other prescription medicines have had bad side effects and are quite addictive - this has not happened with the flower which I have been taking for years. I sometimes take a week off and never crave it. I live in Australia where it is very easy to get a script via free phone consult.

[Rayme]

I agree with Goldy. I have had terrible night long insomnia due to RL and stress on top. The THC in medical cannabis really helps me sleep and soothes RL and I have no side effects. I take a break every 2-3wks for a week or so as otherwise develop tolerance. I make edibles from cannabis butter (delicious bliss balls). In the beginning I took edibles for 6 mths every night but it lost effectiveness and I had to stop for a while, so now I take breaks and am trialing 30mg codeine to alternate with cannabis occassionally, but the codeine has unpleasant side effects while cannabis doesn't.

[4inthemorning]

My experience and realization is that my RLS is directly related to childhood trauma that I’m just in the last few years starting to address a a 60 year old. This is my common thread, again it’s my experience just sharing. When I’m working through the trauma there’s no amount of remedies That will work for my RLS but after trauma treatment, my RLS is much easier to deal with.

[Marlayna in reply to 4inthemorning]

this is interesting! Haven’t heard this before.

[SueJohnson in reply to Marlayna]

Children who experience a traumatic childhood may continue to produce less dopamine throughout adulthood

[DicCarlson]

Lots of home remedies - upon awakening a 1/2 - 1 teaspoon of honey (it's a low glycemic sweetener, so it becomes glucose slower). I take L-Theanine 100mg at bedtime and an additional 100mg if I wake up with enough time to sleep. I used melatonin for years but not now. You could try a really low dose (0.5 mg, either liquid or sublingual). the low dose is all you need to initiate sleep. Side effects might be next day groggieness. Various teas may help - Camomile, Tulsi Sleep, Valerian, Hops, Passion Flower, etc.

[dklohrey]

I had to stop taking trazodone as it caused me to have a rapid heart beat during the night and numerous palpitations during the day and night. I too take gabapentin. 600 mg 4 hours before bedtime and 600 mg before bedtime. Seems to work fairly well.

[Tanker1]

I have PLM and early rise insomnia so like you, I get squeezed for sleep on both ends in spite of taking a considerable dose of pregabalin (300 mg which is about the same as 1800 mg of gabapentin) which is supposed to induce sleep. For me, I think its largely in my mind as in "my brain has a mind of its own". I wake early with racing thoughts that I have trouble shutting down. Like you I have tried nearly everything: mindfulness, CBTI, sleeping cold, blackout blinds, eye shades, white noise, nidra, breathing app, stories from the Slumber and Calm apps, stretching, yoga. These actions are all somewhat helpful with Nidra, body scans and stories being the most useful. You can find nidra and body scans of various time periods on the internet. I've noticed that i get the best sleep when I am out on the trail (canoeing, hiking ect). Part of this is due to the physical activity but I think the main thing is i get away from the to do list as well as all electronics (news, social media ect). I've found it helps if I don't read any news after 6:00 pm. Like others, I've found the THC really helps (5-10 mg with added CBN). I don't do this every night because it enhances my brain fog which is already bad enough from the pregabalin. Also, the THC becomes ineffective after a few nights. A final thing that sometimes works is to get out of bed and go to a different room to sleep.

[Qalba]

I can relate. I struggled for years and years with the meds and problems you mention. Any doctors. Every drug in the books. Last fall I switched physicians and showed him the new guidelines. He put me on methadone and I am doing great! I also take a CBD sleep gummy with Delta 8 for insomnia. It is so much better than any sleep meds and no side effects. Good luck to you!

[BeachGolfer]

When I can’t get back to sleep I vape Delta 8 THC Indica. It works very quickly after 2-3 puffs . I wish you well.

[eliz45]

Hi. I use a small spray of Melatonin right before bed to get to sleep. Works in 15-30 minutes. It does not keep you asleep but it definitely allows you to cross over into sleep. I think I have read that it may interfere with GABA, but the amount I use is insignificant.

[SleepKicker]

Preparing to go on a long flight, after much online searching, I found a suggestion that visual distraction, that is, watching a movie or videos, would help; not the same as reading a book, it had to be visual images. So when the 3 am thing happens to me, I reach for one of my streaming services and put on a show that I have already seen (because a new show will keep me too interested and awake) and stare at it until I fall asleep. It's not what most recommend as we are supposed to not be staring at screens to help us sleep, but when the legs won't let me, I find this works as I'm not thinking about them.

If you've tried everything else, you recognize that everything is a trade off for a couple of hours of sleep and I find this one to be quite reasonable. It's not exactly natural but at least it's not ingesting more chemicals into an already very confused brain.

[SueJohnson in reply to SleepKicker]

Book your flight for early in the day and book an aisle seat so you can get up and walk around and preferably an emergency exit or bulkhead. Pack activities that serve as distractions or just watch a movie you have seen below but which you bring along. If you belong to the Restless Legs Syndrome Foundation, download the Restless Legs Syndrome Special Accommodations Card to give to the flight attendant. You can join for $40 even if you don't live in the US and it is well worth it. RLS-UK also has a medical alert card available to members for things like flights. Otherwise be sure to talk to the flight attendant and explain that you will be walking a lot.