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Re: zen meditation

Posted: Tue Jan 24, 2012 10:34 pm
by peanut1
Since I last wrote, I started working with a naturalpath with this and it helped, until I couldn't afford to see him anymore. Now the RLS has come back in a weird way. It's like the symptoms are not as bad as last summer, but it keeps me awake more so it's like it's there on a low level at all times. When it FINALLY dies down, I'm totally wired. It's like I can get only 2 hours of sleep and that is it. Bottom line is that I had to resort to the medications. The problem I have with meds is that they only work for short term so I'm trying to only use meds 2 or 3 times a week so I can get through the week somehow.

I noticed that someone wrote it's normal to have flare ups and then it dies down again etc. For me, it seems like the symptoms have gotten considerably worse within the last year. I noticed a worsening 4 years ago, but never was I getting a regular 2 hours a night for several weeks on end. Neurologist thinks this time, I might be suffering from withdrawls of the supplements since I was on so many of them.

I enjoy doing meditation if the RLS isn't too severe, but even when the RLS dies down I feel like I just drank a pot of coffee and am completely wired. AHHHHH!!!

Re: zen meditation

Posted: Sat Jan 28, 2012 8:06 pm
by badnights
There's a hyperalertness associated with RLS/WED that isn't talked about much - I've only seen it mentioned in a research context twice, I think; once was this article (below) on histamines in RLS, suggesting that the observed abundance of histamine receptor proteins in RLS brains might result in what I call hyper-alertness (what they call the ability to stay awake all day despite chronic sleep loss), and the other was a proposal that someone here posted from a group in France who wanted to study something to do with the hyper-alertness. Other than that, it's not widely acknowledged, but personally it's a huge part of my disease and would often wake me up at night, without overt RLS symptoms. Or the symptoms would come a minute or so later.

You will often hear/read that insomnia is common with RLS/WED - even when the RLS sensations and urge to move have been treated, the insomnia is still there. Most auhtors pass it off as bad habit, a learned thing, though they acknoweldge that some of us need permanent treatment for it, but I think they're pulling the reason out of thin air; I thknk the insomnia is part of a general hyper-alertness that reflects disruption of multiple neurotransmitter systems (histamine, and whatever regulates the circadian cycle, particularly).

from http://www.medicalnewstoday.com/releases/129785.php
"Five out of six patients in our study showed this elevated number of histamine receptor proteins," says Richard Allen, Ph.D., a research associate in neurology at Hopkins. "The histamine system appears to alter the balance of the nervous system so that one is not sleepy in the daytime, even with sleep loss, which might explain why RLS patients can get by on so little sleep."

Re: zen meditation

Posted: Tue Jan 31, 2012 4:59 pm
by peanut1
Interesting. Would this have anything to do with the allergens in the air?

Re: zen meditation

Posted: Tue Jan 31, 2012 5:49 pm
by ViewsAskew
peanut1 wrote:Interesting. Would this have anything to do with the allergens in the air?


Hmmm. My gut feeling would be no, that it's just part of how WED works in our bodies - just like we have other dysfunctions (iron in the brain, dopamine regulation, etc.).

Re: zen meditation

Posted: Tue Jan 31, 2012 8:10 pm
by peanut1
I know the naturalpath I was working with and will be going back to was working with supplements that helped regulate the signals in the brain, I think it was hypothalmax. From what I heard, this guy does wonders, when I was working with him I got between 6-8 hours of sleep EVERY NIGHT!!!! I had to quit for a little while, but will be seeing him every other month. He thinks he can actually help me manage this. I will keep you posted.

Re: zen meditation

Posted: Wed Feb 01, 2012 8:49 pm
by peanut1
Do you think there is something to this histamine issue? I've done a little reading on it and it states something about a diet to get the excess histamine out of your system.

Re: zen meditation

Posted: Wed Feb 01, 2012 9:43 pm
by ViewsAskew
Not sure at all, peanut1. Two schools of thought - remove the histamines (or tame it or remove the inflammation) and you are better. The other is that it's part of the disease and that taking away these things don't change anything.

Re: zen meditation

Posted: Wed Feb 01, 2012 10:55 pm
by Polar Bear
I most certainly relate to the hyper alertness - my husband would be amazed. He might not have fully awakened but would be aware that I was up and down, in and out of bed and he could not believe how I would still be have been working full time and not totally wrecked. My response was that I was indeed wrecked.... just not sleepy !

Re: zen meditation

Posted: Thu Feb 02, 2012 8:52 pm
by rthom
I\m with you on the hyper-alertness, I always was having it pointed out by my GP and wife etc, that I'm all backwords. Give me a seditive and it makes me run so with the histamines i just wound right up. Frustrated and tired--but very aware no sleep forthcoming for at least the next few hrs. Freaky gunipig seemed to be my identity for most of my life, actually it helped lighten up the frustration for me. An inside joke, for family and dr,s (like surprise, surprise--it's randy--of course it's going to be messed up):-)

Re: zen meditation

Posted: Thu Feb 02, 2012 10:34 pm
by Polar Bear
On some of the sleeping aids it says that you should ensure that after you take the medication you will have at least 8 hours to allow for sleep.
I wish !!
It gives me sleep for about 90 minutes and then it's wide awake time again.
Therefore the sleeping aid is not used every night.
Maybe just twice a week to get maximum benefit from it and not become tolerant of it, however to be honest, sometimes I don't see much difference from when I take it, or don't take it.

Re: zen meditation

Posted: Sun Feb 05, 2012 10:22 pm
by badnights
I KNEW there was a better article on the hyper-alertness! I just came across it again today. It's from 2006, and primarily the research was investigating cognitive function in untreated RLS and found - not surprisingly - a marked decline in various measures of cognitive function. They don't know if the deficits are due to chronic sleep loss or are somehow an integral part of the RLS disease. They also found - and were puzzled by it -that the RLS patients didn't have the degree of daytime sleepiness that would be expected from their degree of sleep loss. They speculate that RLS pathology may include some "alerting mechanism that selectively maintains wakefulness in the face of sleep loss but does not correct for other mental and physiological effects of sleep loss", so you get the loss of cognitive ability but still feel alert. Sleep Medicine 7 (2006) 25–30

Peanut, I hope the naturopath visits keep working and maybe whatever he's doing, you can do it on your own and so not have to pay all the time?

Re: zen meditation

Posted: Sun Feb 05, 2012 10:27 pm
by Polar Bear
Thanks Beth.... It kind of describes me to a T.

Re: zen meditation

Posted: Sun Feb 05, 2012 11:10 pm
by badnights
I could sure relate to it!

Re: zen meditation

Posted: Wed Feb 08, 2012 7:32 pm
by peanut1
Yes, natural path is expensive and he has given me things to do on my own. I was seeing him for other issues such as my back problems and he gave me a lot to do on my own that has worked REALLY well. This, however, is a little more complicated so I'm playing it by ear.

Re: zen meditation

Posted: Wed Feb 08, 2012 9:50 pm
by badnights
I get a bit leery when people recommend things to reduce stress and anxiety. They hear about RLS, and think we need to relax more. (This came to mind because I was reading a few posts back where peanut's friend recommended the flower remedy.)

Well, stress does make the RLS/WED worse, so techniques for dealing with stress can be helpful, but the sad fact is that the disease is triggered by physical relaxation. Something in the body is seriously out of whack. Learning how to relax - mentally, anyway - will help the stress, which indirectly helps the disease, but it will never make the disease go away; and physical relaxation will definitely cause it to flare up if your'e unmedicated or do it at the wrong time.

I'm totally for meditation and yoga, which I do all the time, but I felt the need to clarify to the world (or, to the few people who read this, tho they probably know it already) that relaxation is not the cure, and the primary problem is not one of stress or relaxation, and in fact physical relaxation triggers the disease. I wish people understood this.