Mind won't relax/can't sleep

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Dkee
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Joined: Tue Nov 05, 2013 9:53 pm

Mind won't relax/can't sleep

Post by Dkee »

Ok here's the scenario: Yes I have RLS, and when it's under control (no uncontrolled leg movement while in bed) and I try to go to sleep I find that my mind won't relax (quit thinking) and I can't sleep. In other words no matter what time I go to bed I won't go to sleep until 3 to 4 A.M.. I have had 3-4 sleep studies by various doctors and all they tell me after the study is, "You didn't sleep!" Wow tell me something I don't know. They suggest: get off caffeine, sugar, don't get on the computer before bed time. I've been given sleeping pills and muscle relaxers to no avail. I don't drink caffeine, sugar or alcohol and I still can't go to sleep until 3-4 A.M. then I sleep until I get my 8 hrs. Yes I have tried making myself get up early morning and I'm a Zombie all day and then go to bed and still can't get to sleep until 3-4 A.M. I want to join the rest of the world and be awake during the day but as it stands now I only join the world at noon and I feel like I only have 1/2 a life. Does anyone else have this problem and do you think it is RLS related?

ViewsAskew
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Re: Mind won't relax/can't sleep

Post by ViewsAskew »

Yup - it is.

It's relatively new in terms of research, but many of the research docs have noted it for awhile (as have we!). If you search for the Johns Hopkins research about glutamate,it will explain what they researched.

They did the research exactly because of people such as you. You're medicated, the symptoms are gone, and you are WIDE awake. I call it being activated. It's as if I did drink caffeine. Or it's how morning people likely feel when they wake up. The researchers also noticed that people taking the alpha delta ligand drugs - gabapentin and sister drugs - didn't have this happen. They found that we have much higher levels of the excitatory brain chemical glutamate at night when we should be sleeping.

The problem is that they haven't identified, yet, how to combat it except to take these drugs. It works for me - I don't need a lot of the drug, either. But, people often have side effects with these drugs - so they are not always a good choice.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Re: Mind won't relax/can't sleep

Post by Polar Bear »

Me too... me too. I go to sleep around 4 or 5am. And I sleep well until around 10 or 11am.
When I make appointments they are generally for some time after 12 noon.
I take a zopiclone 7.5mg and amitryptiline 20mg (also for sleep) at around midnight and still don't sleep until 5-ish.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Dkee
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Joined: Tue Nov 05, 2013 9:53 pm

Re: Mind won't relax/can't sleep

Post by Dkee »

Thanks for your replays, after I posted this I found exactly what you were referring to. Polar Bear your reading my mail as what you described is me. I am going to try some of the suggested unproven homeopathic drugs first and see what results I get. I will let you know if I get positive results. I can't tell you how much comfort there is in having someone who knows what you are talking about listen and respond to you...Thanks again for your responses all.

Polar Bear
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Re: Mind won't relax/can't sleep

Post by Polar Bear »

I really wish you well with the homeopathic drugs and look forward to hearing how you get on.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Mind won't relax/can't sleep

Post by ViewsAskew »

Looking forward to hearing how it works out. It helps all of us.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Dkee
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Joined: Tue Nov 05, 2013 9:53 pm

Re: Mind won't relax/can't sleep

Post by Dkee »

Ok here is the short term sleep results of me using the following drugs: Melatonin 10 mg, Valerian Root 500 mg, L-Theanine 200 mg. Taken at 9 P.M. One each. And I DID NOT discontinue my doctor prescribed drugs.

After taking the drugs at 9 P.M. I am sleepy by 10-10:30 P.M. I go to bed and my ability to shut my mind down is greatly improved, I am getting to sleep around 11:00 P.M. It is not perfect but much improved. I still wake up at random at least once per night not by my mind being alert but by my urge to move. I am however getting much more sleep than before I was taking these drugs listed above. I would usually sleep till 10:30-11:00 A.M. before getting out of bed, now I am up around 8:30 A.M. I have so far not experienced no noticeable side effects from these drugs and when I get up my mind is clear (no drugged feeling). This is only 1 week of experience and certainly more time will tell a better story. In the past my body has been very adaptive to drugs and what worked for a short while soon changed, this so far has not happened but only time will tell. Another thing that I have noticed with this disease is that it seems to manifest itself a little differently in each person and what works for some may not work for others. I'm am sure that I am not the first person to try these drugs on this disease but to reach this point for me was from pure desperation. I will let you know more when I have experienced more time on these drugs.

Oh, I almost forgot, I purchases these drugs from a local health food store so they are easily found.

If anyone else tries this let us know what success you had. Thanks for listening.

Polar Bear
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Re: Mind won't relax/can't sleep

Post by Polar Bear »

Delighted to hear that this is working so well for you. I hope it lasts a long time.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Mind won't relax/can't sleep

Post by ViewsAskew »

I second that!

I can share my experience with two of the three you mentioned. I had an uncomfortable experience with Valerian twice. Vivid, terrifying dreams all night long. I did not like it either time. I seem to recall there was something else about it, but is was so long ago that I am not sure. Melatonin did not help me, but it also did not hurt me in any way.
Ann - Take what you need, leave the rest

Managing Your RLS

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Rustsmith
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Re: Mind won't relax/can't sleep

Post by Rustsmith »

I tried all the three individually but not all three in combination. This was prior to being diagnosed with WED, which is when I got started with DAs.

The smell of the Valerian made it very difficult for me to swallow the capsules without gagging. Since I have virtually no sense of smell, that made it all the more difficult.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Polar Bear
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Re: Mind won't relax/can't sleep

Post by Polar Bear »

I also found it difficult to get the Valerian 'down' because of the smell, and they were big fellows, like a horse tablet :)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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badnights
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Re: Mind won't relax/can't sleep

Post by badnights »

Just so you know, in case you didn't know, none of the three remedies you're taking is homeopathic. Melatonin is a hormone in humans and a chemical in some plants and microbes. Valerian is a plant. L-theanine is an amino acid whose structure is similar to that of glutamine and glutamate, and although it acts in a different (not understood) way it may (possibly) have the same excitatory effect (which you would think makes WED worse) - but the interesting thing is it also seems to make dopamine levels increase (which would make WED better).

Homeopathic "remedies" are substances that are diluted so much there is nothing of the original substance left. Homeopathic practitioners freely admit this, so I am not insulting them or saying anything they disagree with there. They claim, however, that the water molecules "remember" the substance that used to be dissolved in them before it was diluted out of existence. This is physically impossible. Homeopathy, and this idea of "remembering", was invented before anything was known about molecules. Practitioners today don't explain why the water molecules can't remember all the (for example) toxic substances they have come in contact with during their long, long journey around and around the water cycle on planet Earth. Homeopathy has been de-bunked in a number of scientific investigations over the years. Believing in the efficacy of homeopathy is either ignorance or faith. Faith I don't mind, but let's call it what it is and not mix it up with solid data. And ignorance - let's clear that up so there is no misunderstanding.

And anyway, probably you already know, you are using herbal and chemical remedies, not homeopathic ones.

I am intrigued by the L-theanine, I try to make a point of drinking green tea every day, because it's rich in theanine. I would like to understand the apparently contradictory effects it has - acting like an excitatory chemical (glutamate) but also raising levels of dopamine, which is (primarily?) an inhibitor.
Beth - Wishing you a restful sleep tonight
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badnights
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Re: Mind won't relax/can't sleep

Post by badnights »

Oh, and I get that wide-awake thing too. I can't sleep until 4 or 6 AM without a sleeping pill, even after my WED symptoms are controlled. Even with the pill, I can;t sleep before 2 aM.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Mind won't relax/can't sleep

Post by ViewsAskew »

I've been experimenting with when I take my pharma medications. I have no idea why, but earlier is much better in terms of the wide awake thing. The later I take my meds, the more likely I have A) symptoms that don't resolve so I couldn't sleep anyway, but more importantly, B) I am much more likely to be tired around bed time. I still have a long clock and prefer to stay up a bit longer, but not several hours longer.

This doesn't apply to people who aren't taking medications, of course.

QyX mentioned it in another thread and and I know Beth and I have talked about it before, too. But, I've been working on taking them even earlier than I was before. Here's how I came to this conclusion. When I take the medication later, I inevietably am up for many hours after I want to be asleep. I've noticed that it takes at least 3 and upwards of 5 hours after my last dose before I'm not longer wired and I'm sort of tired. Not exhausted, but also not wired. I tested it for a week or two - taking them quite a bit earlier than I normally would - and long before the symptoms required it. Oddly, I was more ready for sleep AND I have fewer issues with coverage. I was very surprised at how long the meds would still work, even when I took them so early. I did have some symptoms at the end of my time sleeping, but it was already time to get up, so in a way, it was a good thing. It made me get out of bed.

I need to do some more experimenting.....I'll let you know my results. I'm going to try to track it by how many hours after I wake up I am taking each dose. Today, I took 5 mg 3 hours after waking, then 10 mg 7 hours after waking, and the last 10 mg 12 hours after waking. It's now 15 hours after waking and I am tired enough to sleep. Not exhausted, but tired. I think I normally want to take it more like:

2-3 hours after waking - 5 mg
6-7 hours after waking - 10 mg
10 hours after - 5 mg
13 hours after - 5 hrs
16 hours after - sleep

Then I might actually be able to keep a more normal schedule....until my symptoms keep me up all night and it all gets wonky again :-).
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Frunobulax
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Re: Mind won't relax/can't sleep

Post by Frunobulax »

Dkee wrote:Ok here is the short term sleep results of me using the following drugs: Melatonin 10 mg, Valerian Root 500 mg, L-Theanine 200 mg. Taken at 9 P.M. One each.


I started taking Melatonin a few days ago. Even though it has no effect on my WED (no surprise), it does help me get sleepy.
However, vitamin B12 had a bigger impact for me - I've had a horrible time with severe insomnia after tapering Clonazepam. Taking vitamin B12 (1000mcg pill dissolved under my tongue) fixed the insomnia immediately.

Since things are different for each of us, Vitamin B12 may not work for you. But I encourage you to try all the remedies offered here in the forum, since one of them may do the trick for you. (Unlike the stuff you mentioned, vitamin B12 is considered to have virtually no side effects.)

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