Greetings - Geeze I just went to my local Neurologist for an evaluation. My RLS is very periodic at the present time, but OMG the Insomnia is ridiculous. I can only sleep 3 hours or so then I'm wide awake for the rest of the night. Last night I tried Benadryl to help with sleep when I woke up at 1:30 AM - big mistake (I know, I was warned here!) It triggered my RLS and of course didn't help with sleep. The Neurologist wanted to prescribe a DA, just to help with the insomnia, and I'm considering doing it. What do you think, would low dose Requip help with sleep and not be too encumbered with side effects?
My other question is can RLS be seasonal? It seems to rear it's head in the Spring, more than any other time of the year. And, which DA would you recommend? Thanks.
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DicCarlson
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Hello, I have RLS full time but I have noticed it gets worse during the Spring and Summer months when the daylight is longer. I have been on all the DA's and have augmented on all of them. I now take 5mg oxycondone around 8PM and again around 1am along with .5mg of clonazepam at bedtime
I mentioned low dose opioids to the neurologist - and he said no way no how with the current opioid crisis. I'm sure it would help with the insomnia, but I'll never get to try it unless I get a script for opioids for pain somewhere.
Oh dear, another ignorant neurologist. Have a look at my posts and you’ll see I posted an article and a video from the RLS experts over where you are in the US.
They make it clear that low dose opioids work for RLS and are not generally addictive ( unless there’s a history of addiction or opioid abuse).
However, opioids would not help your insomnia so they are probably not your best option .
Pregabalin and Gabapentin are good for RLS and are sedating so would help with sleep.
I’d rather take anything than DAs as I augmented badly on Ropinirole, but they can be effective. If you do decide on DAs take the lowest possible dose.
Agree with joolsg re low dose opioids. I’ve been taking Tylenol #3 which has low amount of codeine. It seems to “fall under the radar” of the opioid abuse paranoia of some MDs according to my very smart and sensitive PA. You need to fire that neurologist and find someone who understands RLS a little better. See website of RLS Foundation. (I began augmenting hugely on pramapexole, a DA.)
I would advise you to buy some headphones and begin meditating every day for 5 week. Start with Michael Sealey and Jason Stevenson. When you are in the zone try Dr Joe Dispenza. Watch his seminars on You Yube. He is a renown neuroscientist who travels the world with his team of neural scientists. They measure brain and heart activity before and after the 4 day seminars. He will teach you to reprogram your brain and change your life. Another neuroscientist in the US has just been awarded $9M to research this phenomenon. US insurance companies are also showing interest.
Thanks, I've been following Dr. Joe since seeing him on "What the Bleep". His book "You are the Placebo" is fascinating. I do have all manner of digital guided meditations - but never quite make it into "the zone". I guess I should give it another try.
After 5 weeks of daily meditation sometimes for 2 hours and sometimes for only 10 minutes I find myself spontaneously meditating just by sitting down even in a crowded room. I don’t have to ‘call’ it on - it just starts in my feet and builds. If it gets to my waist I can ‘call’ it upwards. I can even do it standing in a queue. I look and feel more relaxed. People are chatting to me more, I am chatting to others more. Everything flows better - it’s reciprocal. I’ve learnt that tense, anxious people have a low energy field and relaxed people have a greater energy field which can be scientifically measured. People who have similar fields are drawn to one another. I have also learnt that neural pathways are drawn together and increased by thought. So ‘pain’ Thoughts get stronger and more intense every time you feed them by more ‘pain’ Thoughts.
I’ve discovered that you can delete your ‘pain’ thought patterns by changing your routines. If you get up and do the same things you did yesterday you will continue the same thought patterns reinforcing those neurological pathways which contain that ‘pain’ information,
What KIND of pain are you talking about exactly? I meditate also, and do lots of things besides meds, but are you talking about RLS and pain, or just pain. You have never described what your RLS feels like. I assume you have RLS, this is an RLS forum.
There is a free 21 day ap available from a UK doctor. I only found out about it this morning and it’s won awards. The Dr who provided says just try 10 minutes twice a day and build up. I’ll message you the details later but I have to go out for a bit. I also have a link to one of his talks as well where he explains the need to keep going - for the rest of your life.
Just curious have you tried magnesium supplements and camomile tea? Those really seam to help with my sleep. I have what I call mild rls and just occasionally flair. When it's bad my neurologist has prescribed clonazapam. Not the medication of choice to my understanding but works for me. I just take it during the times it causes me problems. I'm also on the lowest dosage.
Magnesium in all its forms is excitable to me - even taken in the morning. It's a paradoxical reaction, the opposite of what is supposed to happen. I have searched and searched and found others with the same reaction, but nowhere any reasoning as to why. Chamomile tea is a marginal help.
if plain insomnia is the main problem I wouldn't take a DA. that just gives you the potential to develop more severe RLS. pregabalin or gabapentin might be better but i didn't find pregabalin sedating and eventually developed augmentation from it as well - less well recognised but I think it did happen. I would advise to keep off anything that might cause augmentation for as long as possible. However this is all just my experience and not official advice. I would definitely wait till your RLS is classed as severe or very severe. It feels great to have it treated at first but now that mine is so much worse I wish I'd waited longer before treatment.
Have looked for food triggers using an elimination diet? Also Proferrin iron before bed— one of the few that crosss the blood brain barriers to help our anemic brains. It works for me.
I like Flexeril better than Requip - I don't believe the Flexeril leads to augmentation - at least not for me...
I have found that making sure I get enough (healthy) carbs to be possibly the most helpful, and consistently helpful, thing that has worked for me - way beyond all the other things I have tried. It may sound too simple, or not strong enough for severe insomnia, but it is certainly worth a try.
I have fooled around with limiting my carbs or sometimes not having any at all, and I realize that that was when I had the worst time sleeping. Here is an article that explains the science behind it. psychologytoday.com/Chasing Away Insomnia With a Bowl of Oatmeal. There are lots of other articles and posts about this same subject. Even in the Paleo world, Chris Kresser mentions this and suggests 35% carbs in the diet, for sleep. Of course being Paleo, he does not recommend grains or beans, but having potatoes, root veggies, or perhaps rice and Ezekial bread, which is sprouted grains.
I have found that as soon as I made sure to get a bit more carbs, mostly in the evening and in a bedtime snack, my sleep improved right away. It made me realize that when I had been able to sleep well, maybe even only for one night, it was usually that I had had carbs, that day or that evening or at someone else's house, etc. I didn't have to add a lot, just position them toward the end of the day. Dr. Alan Christiansen, of the book The Adrenal Reset Diet ( I think) suggests this strategy to help with sleep.
I also found, as per the psychology today article, that for about a week I had to use the middle-of-the-night snack, but now I do not anymore. Even if one still needs a bit of medicinal help, it might be advantageous to help one's body produce some of its own sleep hormones. Worth a try!
Thanks - I'm going on a camping trip for a week. When I return I'm going to enlist a functional medicine counselor and begin a Keto-Paleo diet. Diet has eliminated seizures for many kids with epilepsy. They never knew the mechanism of the elimination - now there is some fascinating and clever research showing the mechanism. Keto diets promote GABA over Glutamate - which is exactly what I need. sciencedaily.com/releases/2...
hi, have you tried trazadone, for your sleep problem, its not addictive you take just one at night time, I know what its like the insomnia its horrible you just don't know what to do with yourself next. Its horrible I've had it since the RLS started about 12yrs ago. The trazadone its like an antidepressant +also it helps with your sleep. If you want any more info please send me a p/m X SUE
Dic, Have you tried niacin (the flushless kind, in particular,) for sleep? I know I keep making suggestions, but one never knows what might or might not work. I have found it to be quite helpful. I have read that it turns tryptophan into serotonin, into melatonin, and/or that it activates one' s benzodiazepine receptors and a few other things. Inositol hexanicotinate is a good form. One takes perhaps 1000 mgs. before bed (I take tryptophan as well with it,) and I have found (as have others I have read) that if waking up in the night, which I invariably do to use the bathroom, take it again. It seems to last me several hours - maybe 4 hours - tho not all night, which is why I take it again and soon fall asleep again. My experience is that it really helps with initiating sleep and with deep, dreaming sleep. (Delicious!) A few times I have had to take 2000 to get to sleep, depending upon the circumstances (my imagination gets stressed when my husband is out of town and I am sleeping alone in the house, which can put me on high alert. It's a woman thing.) Here are some things to read about it:
Oh, and some people have found the regular niacin to be better than the flushless kind. In which case, the dosage is lower, especially in the beginning, to build up tolerance to the flush. I have tried both and found them to work the same, I think, but that is just me. One has to experiment, as usual.
Today - I have my consult with the online nutritionist, functional medicine practitioner, Cynthia Perkins. I'll keep you posted. Lately, I've been doing OK with a 3mg time release Melatonin. By OK I mean 10PM- 3AM, then mostly awake 'till 6AM. I'm an old friend of Niacin - but I don't think I've tried it at night. I'll give it a try. Thanks
Hey, Dic, I would like to know how you are fairing with your sleep issues. I have been having great success with pregnenolone - the grandmother hormone of the adrenals. (Men have pregnenolone also - it is not just a woman thing, no matter how it may sound.) Anyway, I looked into hormones for the aging population (I am 67) and found (in a nutshell, after much research) how valuable pregnenolone is for helping people with insomnia and middle of the night wakefulness, which is more and more common as one gets older. (I do not know how old you are, but you might pursue this line of investigation.) This includes andropause as well as menopause. Some doctors recommend taking pregnenolone during the day, some say it is imperative to take it at night. On Amazon, one can get the input of people taking things, which is rather valuable in itself. Some say they take it (for different reasons, not necessarily only for sleep) early in the day and some say they take it at night, because it helps them SLEEP. I have been taking it at night - 30 mg which I pour from the capsule under my tongue (it has little or no taste) which gets absorbed quicker and better than swallowing it. Then if or when I do wake up, usually once for the bathroom, I judge whether I think I need a bit more. Often I go back to bed, and if I don't fall back asleep soon, I get up and use the 5 mg sublingual tablets I have - usually 2 or 3 (thus 10 or 15 mgs.) and off to sleep I go. I am dreaming well and deeply and it is heavenly. I am also fazing out some of the other things I have been trying (with varying degrees of success,) , tho I still use a 3mg melatonin, and taurine or ibuprofen seems to stop RLS (which is not bothering me very much, just occasionally.) I also use B complex and magnesium (which I know you can't take.) But look into pregnenolone. I have found it, for me, to be the best. I think that it was more of a hormonal thing than a supplement (or drug) thing. I have been reading more on the hormonal changes one experiences as going thru life, and how a person can be affected. Problems sleeping is one of the most prevalent. Good luck and let me know how you are doing.
Hey - thanks for that info - I'll look into it. I think we went to separate schools together - I'm also 67! Lately, I'm trying to adjust my diet to Keto/Paleo - ramping down the carbs. Basically just squeezing out the carbs adding fat and protein. I just ended a 2 week or so "therapy" with Oil of Oregano - for supposed SIBO/Reflux, and that seems to be working. (Reflux might be waking me up repeatedly). I am also eliminating probiotic supplements (which I have taken for years, daily) but still adding Kimchi and full-fat Yogurt. I still do the "adrenal cocktail" 1/4 tsp sea salt and 1/4 tsp cream of tartar (Potassium) mixed in diluted juice. At night, just using 0.25mg sublingual melatonin. EVERY night is a new adventure!
My goal is to eliminate most every supplement and rely on diet and just basic food-like supplements like fish oil, fiber, and basic vitamins.
Interesting. I wonder how that worked. I use Iron bisglycinate for RLS (which is not bothering me a lot, as it does some people.) But I wonder how the iron affected your insomnia. Some things can have surprise benefits, I guess.
I guess we did go to separate schools together. What a coincidence! I've used oil of oregano to ward off catching something from other people around me who are sick. Also if I have a cold, tho I don't get sick very often. I combine it with olive leaf extract. They work well, I think. I have read of SIBO and the troubles it can cause.
I am looking to eliminate quite a few of the things I have stashed in my drawer. They may be helpful for some, perhaps at an earlier time of life or different life circumstances. I have spent a lot of $ over the last few years on things that were minimally helpful or not at all. But then, often one has to try a lot of things before finding what works. So, having avoided conventional HRT so far, I am looking, more closely than I did before, at bio-identical hormones. (Of which pregnenolone is, of course, one.) When a person's hormones are more balanced, these problems don't arise (like when I was younger.) Anyway, that's my approach now, and so far so good (much better than anything else I have tried.)
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