Short sleep, awake, snack then much better sleep

[SimonMorriss]

Morning All

I hope you can give me some advice or confirm my action.

I have been having RLS for many years now but for the past 10 days I have had a lot of problems keeping asleep. I'm on 0.25 Ropinerole and every night I go to bed and within the hour I'm awake and my legs is playing games. Normally the only way to break this is to go down stairs (leg movement needed) and have a snack (this seems to settle me). I have tried the hot bath, reading, keeping the room cool but nothing seems to work. I have come back from a VERY stressful holiday and back into work which I don't think is helping much.

On a positive note once I'm asleep for the second time, then I'm away till the morning.

I have just purchased some Magnesium Citrate tablets and will give that a going along with the Ropinerole.

If anyone has any suggestions / advice that would be amazing.

Thanks

Simon

[Pam34]

Hi Simon

Very few of us can sleep through. I also find that I sleep for an hour and then wake up. Sometimes the only thing that will settle me is a dish of cereals. I then go back to bed and on my current drug routine sleep through. I’m assuming the pleasure of eating releases a rush of dopamine and then you can settle.

If you are only waking up once a night, I’d take it. That’s good for RLS sufferers.

You are on a very low dose of ropinirole - don’t be tempted to increase it to help sleep. Read up on augmentation just so you are aware what to look out for.

And you may find it all settled anyway!

Pam

[Eryl]

You say snack, but what exactly? The food and drink may be the cause of your rls and although immediately after you've eaten you feel more restful, but after the food has had time to digest, you've re started you rls.

[auntiesioux]

Hi Simon, I have had RLS since my early 20s and I am now 77. Early even with symptoms and little sleep, I functioned. I am a retired RN of 43 years. I had to function. Fast forward.. I am now in the "new category" called, "malignant RLS" I am far from alone.

Just talking about the eating. When I was younger, the go to eating was ice cream. somehow I maintained my weight. When older and symptoms increased it was a bowl of cereal with large amounts of milk and sugar. I did this for years and was always at least 10 lbs over weight. I had a very good friend who was diagnosed with bone cancer shortly after we met. She also had RLS . I always assumed it was from her cancer. It was not as she had the same onset time I did and followed the same pattern. She did not live long enough to augment but we were on the same medication regime. I am now on the Paleo diet and have stuck to it for several weeks. I stopped taking Gabapentin awhile back at my pancreatic enzymes went too high. I also gained 25 lbs ( I am a small women) taking Gabapentin. Earlier this year I augmented on EVERYTHING Nothing helps now. i became so toxic I lost about 28 lbs. I am stable now at one of my lowest adult weights with is good but not how I lost it. At this point I have an old ladies feeble appetite, which is OK but for the very wrong reason. My sleep now is seldom. I feel as though I am aging by the moment. Thank goodness I am retired but the RLS controls our life. I am going to try going to a osteopathic physician. When someone says to me, " Have you tried..." The answer is , "Yes'" before they finish the sentence. All I do is keep trying as long as I am alive. The support of my friends and family has been my absolute best support. Yesterday a friend said I could call her anytime during the night and she would come over and stay with me. I cried when she said that but would never impose that on anyone unless I am feeling suicidal. Last night was one of the awful escalating symptoms even after hot showers, 500 jumping jacks, eating , eating, eating (don't keep high calorie or unhealthy foods in the house) peeing, etc, etc. etc....and now at 7:10 AM, off to help a friend with a garage sale. My husband now drives me everywhere as I am far too unstable to drive. WOW, sorry for long yabber. You must remember that what ever you are doing or have experienced, someone out there has done the same. Maybe soon I will post , "Why I love my RLS." Sounds funny huh? I also will post my AWFUL EXPERIENCE with a recent visit to Johns Hopkins Hospital. Everyone had such HIGH expectations. NOT, GAG

Good name, Labor Day, Auntie Sioux

[Birdman70]

Hello. I do this exact thing, for yrs. Its started with cookies. I would bring them to bed, take a bit and suck on it (didnt want the crunching to wake the wife). It would calm my legs and I would fall asleep. Sometimes with cookie in my mouth still. It has changed many times. I looked it up and came up with insomnia snacking. Then, I had a sleep study done. Turns out I have severe sleep apnea. My events happen within minutes of falling asleep. After an hour or so of dealing with rls, I get up and snack. Except I fell asleep within minutes of closing my eyes. Stopped breathing, woke up. Tossed and turn fall asleep, stop breathing and wake up. Etc, for an hour. I have only used meds once, Sinimet, 24 yrs ago. My old in not painful and started when I was around 8 so 40 yrs ago. It has gone into any part of my body and at times I feel like I'm having a seizure because it is so intense that it controls me...but not painful, so mine could be a different form but it does seems that the sleep apnea has a lot to do with mine and the snacking when trying to go to bed.

Maybe this pattern you have going on is sleep apnea!?!?

[Joolsg]

Hi Simon,

Stress is a huge factor in RLS- I can guarantee I’ll have a bad night after a stressful event.

How long have you been on Ropinirole? I ask this because it may have worked for you for many years but perhaps now it’s ineffective and you should switch to another med like Gabapentin or pregabalin. Look up Augmentation on here as it can happen on very low doses of Ropinirole.

Also, get your serum ferritin checked and make sure it’s not lower than 100. Try yoga breathing and muscle training exercises like slow squats and holding the position for 4/5 mins. This helps me get back to sleep quickly if woken by RLS.