New to Site; hello to all

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
stjohnh
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Location: Palo Alto, California

Re: New to Site; hello to all

Postby stjohnh » Wed Nov 15, 2017 11:08 pm

Restless Dragon wrote:Ok all. Simply exhausted here. Again, 7 sleep meds last night - Valerian and Melatonin. RLS was better with no Diphens, as advised - but I do not sleep. The insomnia is *not* breaking.


The most consistent way to treat RLS related insomnia, assuming leg jumping has been controlled, seems to be gabapentin or marijuana. Gabapentin is probably less expensive to buy, but you need a prescription from a doctor.
Blessings,
Holland

Restless Dragon
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Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Wed Nov 15, 2017 11:12 pm

lol Ok - noted. Right now, working on easing back sleep meds, caffeine, and sugar. We'll see how it all goes. Not much into prescription meds, as that means doctors. Never smoked, so at 49 - not wanting to start now. Thanks for advice

Rustsmith
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Re: New to Site; hello to all

Postby Rustsmith » Thu Nov 16, 2017 1:20 am

Never smoked, so at 49 - not wanting to start now.


One of the most effective ways to get the sedation effects of marijuana is as an edible. I have had mild asthma for many years, so there is no way that I am going be smoking anything (except for foods :) ). I am able to legally purchase marijuana candies and it only takes about a half of the "normal" dose to allow me to fall asleep and stay asleep. The only catch is that the edibles can take a bit of time to kick in, so planning is important.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Restless Dragon
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Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Thu Nov 16, 2017 4:48 pm

Noted rustsmith. Trying to get off meds if possible, is the point. My hope is to slowly ease up off doses of sleep meds too. Trying to stay away from all of it. Making some progress. Slept a bit better last night yay :) I'm mostly trying to be aware of how stressed and strained my 'Mental DIalogue' gets. If the inside of my poor tired brain starts getting hyped and frantic and like that proverbial oncoming train-wreck - well, then I know it's time for me to settle down. RLS is not fun. It is serious, and settles deep into a person's joints and muscles and tendons and ligaments. It isn't going to go anywhere without a lot of mindful patient work. Best to all - Resltless

badnights
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Re: New to Site; hello to all

Postby badnights » Fri Nov 17, 2017 6:09 am

Now that you've gotten rid of the worst things, that were actually making your RBS symptoms worse, it's time to consider what Ann said - are any of your other meds causing alertness or working backwards in some way? Melatonin might not help - onset of symptoms coincides with natural circadian rise in melatonin levels but people aren't sure which is the cause and which the effect, or if they're just coincidental.

Hyper-alertness is a problem that a lot of us struggle with once the more overt symptoms are controlled. Without prescription, marijuana is the only thing I can think of, offhand. Read up on it here (search for marijuana in the search bar at top right) to find out about varieties to try, if you decide to go that route.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Fri Nov 17, 2017 4:24 pm

Thanks bad nights. Slept ok last night, again with lots of melatonin and valerian tho. I've been without coffee for four days - not fun on most levels, but that seems to be helping the legs. I'll look at the info on marijuana, but am skeptical of going that route. Best to all - Restless

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Mon Nov 27, 2017 9:17 pm

Ok all. The experiment where I give up caffeine progresses! It seems to help, tho I do still get twinges and the jumpy-jerks. Not as bad tho! Been keeping away from the Diphens, and that helps too. I've heard cutting back on sugar helps - I can try there too, tho I'm an admitted sugar-holic. Last night the legs and twinge woke me up, and I was awake for an hour or so - got back to sleep eventually. I've been sticking with the 'Herbal' sleep meds, Melatonin and Valerian. Best to you, Kind Readers -Restless

badnights
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Re: New to Site; hello to all

Postby badnights » Tue Nov 28, 2017 7:21 am

congratulations on the coffee culling. It is very hard. I found the only way to do it was to quit completely - I couldn't say "I'll just have one cup, and nothing after 11 AM" or anything like that, because if I had one, I would eventually have more.

It might help to think of sugar this way: we aren't designed to eat so much sugar as is added to our foods. The bacteria in our gut should be of certain types, but when we eat sugar and simple starches, which are very easily digested, certain types of bacteria that feed on sugars grow to form an excessively big population in our guts. All the bacteria there take substances in, metabolize them, and excrete byproducts. These byproducts commonly pass into our blood stream, the same way nutrients from foods broken down in our guts passes (through the small intestine cell walls), and once in the blood, they have access to the whole body, especially the brain and other parts fo the nervous system. These substances can have neurological effects. The byproducts of sugar-eating bacteria cause us to crave sugar. Some of this is accepted as fact, and some is I think hypothetical.

When I quit sugar, I stopped craving in about 2 weeks, but for some people it's longer. I quit absolutely; I wouldn't even buy anything if sugar in any form was listed as an ingredients.
Beth - Wishing you all restful sleep tonight
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Tue Nov 28, 2017 4:45 pm

BadNights, the above on sugar makes sense. I also wonder if the by=products, then, aggravate RLS once they get into the bloodstream. I've also heard RLS people say that fresh fruit and veg help the symptoms. I'm beginning to think it's just personal to the individual RLS sufferer. I had some RLS last night, but again I did have a very yummy mug of hot cocoa. Caffeine and sugar, right? I think I'll always miss both ..... peace out everyone - Restless

badnights
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Re: New to Site; hello to all

Postby badnights » Wed Nov 29, 2017 4:39 am

I'm beginning to think it's just personal to the individual RLS sufferer.
There's a lot to be said for that idea. Ann has been saying for years how the disease presents differently in different people, and there must be variants of it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Thu Nov 30, 2017 8:25 pm

It's stress, plain and simple - on a deep and chronic level. For me, cutting back on the things that excite stress help. I tend to avoid certain people when I can. Shutting out coffee and sugar from my diet helps. Different things might trigger RLS in different people. Last night, I didn't have RLS too long, but it was present whole-body. Even my torso was jerking before the sleep meds kicked in and I zonked out. If I exercise too much, I think the Lactic Acid build up in my musculature excite RLS. It's a cross to bear, that's for sure ....

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Mon Dec 04, 2017 5:36 pm

God. Completely fried here, people. Took 8 Valerian and Melatonin last night at 7pm. Went to bed a bit after Nine, and fell into a doze. Drifted in and out of rest for a few hours, with some RLS jumping and jerking. At midnight I finally just got up. Made coffee, which I had been doing good to avoid. I am having trouble right now spelling and putting together a coherent sentence. I'm having trouble keeping my balance. Admittedly, this is more the Insomnia than RLS, but RLS was present last night too. I called the people who Denied my Disability Claim several times, and let them hear the exhaustion in my voice. Left them several voice mails asking them if they really thought I ought to be driving or working. They don't answer those questions ..... so ,here I am, so worn out I can seriously barely hold a though in my head. It blows my mind that people are somehow supposed to soldier on in spite of days like this, and support a system that is doing everything ti can NOT to to help ...

Restless Dragon
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Joined: Mon Oct 30, 2017 10:06 pm

Re: New to Site; hello to all

Postby Restless Dragon » Tue Dec 05, 2017 4:39 pm

A much better night with both the RLS and Insomnia everyone. I do believe cutting out caffeine, diphenhydramines, and sugar is helping. Got good rest last night. Hope everyone else's RLS is calm and soothed - Restless

Restless Dragon
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Re: New to Site; hello to all

Postby Restless Dragon » Wed Dec 20, 2017 9:37 pm

Been sleeping a bit better these last few days - good to hear what meds work for whom and what doesn;t ....

badnights
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Re: New to Site; hello to all

Postby badnights » Mon Dec 25, 2017 6:43 pm

Moderator note:
We moved two posts before the last one into a new Topic, "Hot water, Tegretol and gabapentin".
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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