Restless Legs Syndrome
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Insomnia

I am on one 0.18mg Pramipexole at night, if legs really bad take two. I was wondering if anyone has trouble sleeping, not with RSL but in general. Once I take my tablet/s I have no trouble with my legs at night, but only get a few hours sleep and that is broken. Has anyone had the same or any suggestions how I can get a good uninterrupted nights sleep, thanks

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Hi!

I’m sorry about the insomnia! I’m also experiencing some insomnia these days (didn’t before, but do now).

For ways to help, I’m going to turn to the book I just finished reading called «The Sleep Solution» by W. Chris Winter, M.D. He talks in great depth about insomnia, suggesting that insomnia is mainly fear - fear of going to sleep or staying asleep because you are anxious or worried about something. (If anyone has issue with this, please take it up with the author🙂). A lot of what this guy said initially made me angry and he didn’t impress me, but I kept reading and found that he talks a lot of sense. He does not write off things and his recommendations are very helpful and insightful. I recommend his book!

He suggests making the bedroom a place you want to be at night. Make it completely dark (use a mask to cover your eyes if you have to), don’t have any electronics in the room (digital alarm clocks are okay, but keep them turned away from you), keep the temperature down, make sure you keep your bedsheets clean, make sure you have a good mattress, and tidy the room if needed.

One thing I have recently discovered that helps with my insomnia is exhausting myself (both physically and mentally) to the point where I can’t keep my eyes open and welcome falling into bed. I also dab some Dr. Hauschka’s Moor Lavender Soothing Body Oil behind my ears and on my neck to calm my nerves. Not only does it help calm me, but it also does a good job at putting me to sleep!

I hope I was helpful here.

Sending the sleep Gods your way,

Jessica

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I'm finding that I'm sleeping better since I cut out regular cows milk and reduced my gluten and sugar intake (that may because grains contain a high level of fructans). I find Tha sugars trigger my rls.

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I'm in my 60s and have had insomnia since I was about 14 (RLS a few years later). In my 20s I lost a good job because of it and life has been difficult with both maladies. I have seen various doctors over the years and have never, ever, met any who had any sympathy or understanding. You go in the surgery and they look at you and say "you look very tired", so you reply "I have chronic insomnia" and they lose interest. The reaction seems always to be oh, she's just after sleeping pills.

Now I'm older, thankfully I have a monthly prescription for 10 Zopiclone, so I know that I'll get 10 nights sleep over the month, which kind of staves off total exhaustion, and also helps when I have early appointments or important tasks the next day. I read somewhere that insomniacs do not properly produce the 'sleep chemical', I think it may have been in a back copy of the Daily Mail. I'm sure there is an answer somewhere but I haven't found it. Best wishes to you and to all of us, these maladies are such a great burden to carry.

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I too have insomnia, so even on nights where my rls is not a factor I still have difficulty sleeping without some kind of intervention. I have read that with some rls patients it is a matter of too much glutamate in the brain. Also, since rls is a HPA disorder we need to take care of our circadian rhythms. Get sun in your eyes first thing after sunrise for at least 10 mins. Melatonin is made in your pineal gland with morning sun hitting your optic nerve. It is stored until darkness releases it. Too much blue light at night can block its release! I try to rotate my interventions for sleep, lorazepam one night, thc one night, Kratom the next, Zyrtec the next, repeat. Also, binaural beats help if I wake up in the night. I slip on my sleep headphones and it will usually clam my brain down enough to slumber till morning. We are all different, you need to learn to listen to your body. It really does try to tell you things. It is hard to decipher when it’s screaming at you though 🤔

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Like Jess I try exhausting myself physically, try to stay away from triggers, live a healthy lifestyle (not by choice :), and take a cocktail of meds (Rope, Gaba, Narco per sleep Doc) and usually fall asleep quickly. But wake up anywhere from 1 to 3 hours later and usually awake for 1 to 2 more hours before falling back to sleep. During the awake period I get out of bed (usually) and do anything from read to home projects, or even eat. After that if I don't fall asleep, I take a small dose of meds. Then, I sleep. During the time between sleep, I don't have leg problems, but my body feels tense and it's hard to relax. Then mysteriously the tension will spontaneously leave, almost like a switch has been thrown, then I revel in the relaxed feeling and usually fall asleep. There is also a mild ache between my shoulder blades while in the tension state. Sometimes I think I'm crazy.

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Hi Jake, your exertions before bed and while being tense might well raise your blood pressure; could that be the reason for the ache between the shoulders? Could be indigestion too? Have you got a comfortable pillow as that also can put strain on the shoulder area. Do you breathe freely? Do you snore or gasp yourself awake? That might irritate your lungs.

You sound like you are on top of most of your problems so you may have thought about these things already.

I am currently trying and failing miserably to create a good sleep rhythm but like you, sleeping and waking intermittently. I cannot shift my PLMD symptoms at night even though my RLS is under control now. Pregabalin is supposed to help with anxiety problems but I haven't found that so far. I hope you get a full night's sleep soon.

Neil

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I have chronic insomnia, to the point where on some days I literally walk into walls. Pramipexole makes it worse for many of us. It has profoundly affected my life.

The package insert lists insomnia as a 'FREQUENT nervous system' side-effect. So there you are! You're damned if you do, and damned if you don't. Most people seem to get the daytime somnolence, which I do not, quite the reverse.

I am always exhausted, but never sleepy. This would be because we have too much glutamate and too little GABA. Too much glutamate makes us sleepless at night and wired during the day.

I am trying natural substances to increase GABA. Herbs and supplements which do this include chamomile, kava, theanine, sceletium, lemon balm, magnolia bark, green tea and taurine. Take the whole lot! (GABA as a supplement does not cross the blood-brain barrier).

What an awful disease.

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