Is it all in the mind?

[mistral27]

I'm just back from a spiritual retreat.
Whilst there I kept a journal and part of that related to RLS/WED. The following is a copy of those notes and I think a worthwhile topic for discussion and perhaps experiment.

WED/RLS. The augmentation of ropinirole is of great concern but I have noticed some interesting detail. It is at its worst when the initial relaxation with Andy occurs. As the disease is predominantly a night time or during evening relaxation then there may be a common theme. I notice that there has been no augmentation when doing art but a lot with meditation. The relationship between the active mind and the quietened mind is therefore worthy of consideration. Indeed I can recall being unable to sit to watch TV yet having no such problem when sitting at the computer. I considered the use of caffeine. I had not drank coffee or tea for 20 years. Even decaffeinated coffee could result in a panic attack. Yet six weeks ago Raechel persuaded me to drink a decaf coffee and I had no panic attack. I took another and then a full tea. No panic attack! I have not yet tried full coffee. I was able to do a small test. The clinic does not provide caffeinated drink but they forgot green tea. Whilst low in caffeine drinking this green tea was followed by almost an hour of no augmentation. This is a one off experiment so has to be repeated to provide potential evidence, but if repeatable may suggest that a moderate level of induced anxiety may help the condition.
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Dopamine and lovheim cube? Yes, the singular psychological effect of dopamine alone is increased anxiety. All others need a combination of dopamine with serotonin or noradreniline. If this cube is correct then it may be that it is not the drug that helps the symptoms but that the drug induces a level of anxiety that helps the symptom.
http://en.wikipedia.org/wiki/L%C3%B6vhe ... of_emotion
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I tried full coffee tonight as an experiment. I perceived no change in WED/RLS onset, although neither did I experience the possible panic attack or any increased anxiety. This is interesting. I will try and discuss with Stephen in the morning.

[ViewsAskew]

I used to have a regular meditation practice - about ten years. I haven't done it more than a few times in the last 10 years. Now that the meds work most of the time, I'm still so tired when I try that I fall asleep. Give me a few moments of quiet, and I'm out.

Scientists have noted for years that pain is distractable. We have control at times, no control at others, but when we get distracted, we have the best control. WED/RLS is the only other known condition (that I've heard of) over which we have the same control. Distraction works incredibly well. When we meditate, nothing distracts us. When we sit quietly and wonder if it's going to start, we allow for the opportunity, simply because we're not preventing it.

Math, Sudoku, sometimes on our computers, solving something that is really important to us....it's all significant enough to resolve it much of the time. I got into plant hybridizing when my symptoms were crazy. Sitting up at night looking a genetic variants or pruning roots or taking tiny progeny off of propagation leaf - that kept my legs and arms quiet. Amazing, when you think of it. If we could only channel this to other things.

Interesting comparison to the Lovheim cube. I don't see anxiety on it, though. Fear and terror - ye - and they are similar. Gaba is missing in the cube, though, and I seems likely we have to take that into account. http://www.ncbi.nlm.nih.gov/pubmed/6124225 - to me, this says that maybe it's the unique imbalance together that causes the perfect storm for us. Change any of these transmitters a bit, and we change things tremendously.

The movements - maybe one system causes this. The sensations, another. The anxiety, either another or maybe the result of how the other brain chemicals are imbalanced at that time? It will be fascinating once they figure it out, that's for sure!

I honestly can say that caffeine doesn't bother my WED a bit. Headaches, different story! But no increase in sensations. Alcohol absolutely does - for me - but I think that's just because it's a depressant and as I get tired, the symptoms start. Sugar never used to be, but it will set me off now - at least 30-40% of the time. Weird disease.

[EeFall]

I honestly can say that caffeine doesn't bother my WED a bit. Headaches, different story! But no increase in sensations. Alcohol absolutely does - for me - but I think that's just because it's a depressant and as I get tired, the symptoms start. Sugar never used to be, but it will set me off now - at least 30-40% of the time. Weird disease.

I suspect, as many do, that WED is a number of different conditions (diseases) that appear to be the same disease because of the symptoms appear to be the same. Then I see posts like this and know that what I have must be similar to what you have in that caffeine does not bother me in the least but alcohol makes my RLS terrible. Sugar used to never bother me but as I have gotten older it does. For instance, I can't eat sugary pie like a berry pie anymore because it will give me symptoms.

Then there will be others on here who say caffeine will give them terrible symptoms, alcohol won't do anything, and they can eat all the sugar they want. Then of course there is the severity thing. It usually gets worse with age but some people never get a severe case of WED while others go off the scale in severity. Then there is aspartame, it makes it much worse for me but others it does nothing. I suppose aspartame though could be an allergic reaction. Maybe allergies have something to do with it, I grew up with being allergic to grasses, molds, animals, and many other things including penicillin.

Maybe there is something else to account for it but it just seems like there is more than one type of WED out there. I also have PLM and sleep apnea which is common with some who have RLS but then for others never have either one of those problems. I suppose it could all be flavors of the same disease though, it drives me batty thinking about it

[ViewsAskew]

For many years, several of us have said we believe there will be variants of it. It has to be - they've identified 5 different genes related to it! And, if you have different combinations of those genes, you'd likely have slightly different symptoms.

I've often wondered what would happen if we created a HUGE database of every possible physical thing we could list that we had or experienced - allergies, asthma, easily startled, odd reactions to medications, get drunk easily, jaw problems, dental problems, never catch a cold, get sick really easily, get car sick - absolutely anything and everything. Would something stand out? Would we find patterns? (I didn't list things that pertained to me - just things I thought of, for what it's worth.)

[mistral27]

Thank you for responses.
The GABA abstract appears to address the reduction of anxiety (a subset of Fear) and not it's potential for inducing anxiety/fear as Dopamine can.
I'm not sure, though, if anxiety is the right word because it seems more to be a level of arousal. Making love seems to control RLS and is not usually an anxious act!
You see we know that Dopamine agonists help controlling RLS for a time, but we don't know why. We know that Dopamine causes an increase in fear/anxiety too. So there seems to be a link. Perhaps dopamine also causes mental arousal in the same was using a pc does, and maybe caffeine doesn't. One thing for sure, if you are tolerant to caffeine it is unlikely to make a difference unless dosage is increased.
I question whether we are really all different. My gut feel is that we simply haven't found the common denominator.

I sign off for now with this humorous psychological clip.......
http://www.youtube.com/watch?v=-4EDhdAHrOg

[karalea]

Wow, Mistral27, you have triggered a very interesting conversation! Despite the fact that RLS has complicated my life in a very miserable way, I find the science behind every disease very fascinating!