I'm new to this chat, joined after that very poor RLS documentary on channel 5. Been a slave to Pramipexole for 11 years.
Has anyone ever noticed that when first entering a shower in the morning, it feels like RLS is starting early for the day? It's a mild feeling but it may be significant. Once out of the shower it goes away until it's normal time in the afternoon.
Don't know about that- but certainly would avoid letting Raffs see you with that glass of wine.
He'll go spare altogether.
We have enough on our plates just keeping him calm! 😅
As regards being a "slave" to Prami for 11 years- that's a fantastic achievement- especially if you are still getting control without having to increase the dose. Long may it continue for you.
Thanks for the post.
Thanks for your reply and positivity. As regards the alcohol, I guess some of us are affected by different things, my symptoms don't seem to differ wether I have a tipple or not. If I can't have a drink now and again, what else is there?
I'm trying to reduce the Pramipexole but, as you know....
I can't do those little box things with someone else's quote in it so bear with me ...
'If I can't have a drink now and again, what else is there?'
Eh ... one aspect of post-augmentation rls that I try to feel positive about is the nature of the meds which it responds positively to:
Oxycontin, cannabis, kratom, tramadol ...
Substances that I would almost certainly never have entertained in my life are mellowing my nights - purely in the quest to medicate my legs you understand.
What are you talking about madlegs? You wind him up more than anyone else ...
Hi,
I did! And still do! 
even though I am off paramipexole! I would of love to say carry on slaving to parami cause I found the last 2 days so hard without it!
I believe you are about to hit the augmentation wall maybe? Have a read about it as this site is very helpful and there are very nice people.
Take care,
B.
Thank you for your reply, the greatest help to me is knowing that I'm not suffering alone.
Yes augmentation is definatley a problem, before I started Pramipexole I would typically suffer 3-4 times a week ( I could never go to the theatre or cinema as I wold inevitably need to walk out halfway through) but, now it's every day.
Yes. I've taken the two primary drugs that also treat Parkinsons. I hate them. Here is an article that I wrote. I hope it helps.
Something pretty incredible has happened to me. I may be jumping the gun but I'm hopeful that it's not just a circumstantial or biological coincidence. I’m 65 years old and since adolescence I've had severe RLS every night of my life. Incredibly, for about a month now my symptoms have been steadily subsiding. I have gone over three weeks without medication - a quite expensive medication that I've taken for many, many years - a medication that I absolutely hate because it has so many nasty side effects. But without it RLS prevents a peaceful sleep - bluntly, sleeping is torture and even with medication it’s never restful.
I've also had recurring vertigo - this as a result of a brain tumor that was removed in 2000. Severe vertigo occurs several times a year, but I’ve always been able to evoke dizziness with extreme or sudden movements. Suddenly I can't do that anymore. And then there's the ever-present threat of MS-like symptoms that make my legs weaker with each flare. You probably already guessed it. My legs are stronger - no doubt about it. I can pull my boots on without having to put my hands on my legs in order to position them.
So ... What's happening to my body? I think something profound!!! About two months ago my daughter and I decided to try and live organically as much as possible and without meat, with the exception of eggs and seafood. Our diet has been largely organic for several years now, but I often ate non-organic foods when I was away from home. And because I’ve always gained weight with too many carbohydrates, even complex carbs, I had never given any serious thought to cutting meat from my diet. But several months ago, after watching the four-part series, "Cooked," my daughter and I decided to get serious and do it right - consume foods that our bodies were designed to eat; access, buy or harvest our foods from environmentally and biologically safe sources. Only recently have we come to realize the magnitude of that commitment.
A little more about my health. I've been wearing a back brace because an old injury had flared. When I noticed my RLS symptoms were disappearing, I thought that perhaps it was because I was wearing the brace while sleeping. I found no evidence that this was an effective solution - indeed there was no information on the internet, at least that I could find, that anyone had ever even tried it. But I kept on wearing it to bed, just in case. My symptoms returned, but not as bad as before. And the brace was uncomfortable so I stopped wearing it to bed. To my surprise, the RLS symptoms continued to get better.
So I did some more research, this time concentrating on the other thing that was new and different - the way I was eating. I looked up the nutritional values of the foods I had eliminated as well as the foods I was eating. That research led me to the subject of inflammation.
The foods that I had eliminated from my diet were known to cause inflammation; and the foods that I was eating were known to prevent inflammation. That motivated me to see if there was anything on the internet that studied the possible impact of inflammation on RLS - a subject, I discovered, about which there has been a lot of study and much discussion.
In layman's terms (because this research was so technical that I had to read it over and over - even drawing flow charts to help me understand), I learned that there is a neurotransmitter, glutamine, that produces an amino acid, glutamate, which acts on nerve cells to excite them - keeping us active and alert. The neurotransmitter, glutamine also works on glutamate to convert to another amino acid, GABA (no, I'm not even going to try and convey what that acronym stands for). But GABA inhibits excitement - reduces anxiety, helps us get a good night's rest.
You've probably already put two and two together. The foods that I've been eating since adolescence inhibit the conversion of glutamate to GABA. Prior to adolescence I didn't eat a lot of meat because of religious reasons - I ate seafood and veggies, and most of that was caught, farmed and harvested naturally because that was our lifestyle. I slept well and deeply, got up without an alarm clock before sunrise and fell asleep naturally at sunset.
More research. I also discovered that you can't buy a reliable supplement or pharmaceutical that acts to increase or decrease either glutamate or GABA. You can buy addictive pharmaceuticals that interrupt the process and either wake you up or put you to sleep or help you to feel less anxious. You can buy supplements that likely can't cross the blood/brain barrier - at least not if you have a healthy brain. What I did, when I changed my diet, was to support the neurotransmitter glutamine to do its job, maintain a balance of glutamate and GABA. Wow!!!!! Really, this realization just blows me away!!!
Now we’re getting to the bottom line. The brain fog, the weakness and so many other symptoms that have challenged me to the point that I took an early retirement have been replaced with clarity and strength. This is no joke folks! I think that my suffering has ended – all because of my diet. In summary, quite by accident I discovered that Glutamine, a neurotransmitter, is necessary to make glutamate (an amino acid that stimulates nerve cell action) which then converts to GABA (an amino acid that inhibits nerve cell action). One wakes you up and the other relaxes you. Inflammation interrupts that cycle, which leads to restless sleep and in some people, like me, causes restless legs syndrome. Diets high in vitamin b-6, magnesium, calcium, vitamin k, taurine and l-theanine support the glutamate to GABA conversion.
So now I’m consuming all-organic foods, specifically so that my body can balance Glutamate/GABA levels. The following list is not exhaustive. But if these staples reduce or eliminate your RLS to give you a baseline, then trial and error will help you personalize your list – I’m thinking that what causes inflammation in one person, may not cause it in others.
Consider also that even if it doesn’t kick off RLS symptoms, you may want to think twice before consuming some foods. For instance, although sugar isn't on my list, I do eat limited quantities. For me, processed sugar and even artificial sweeteners are addictive, not necessarily inflammatory, but definitely addictive. That may not be the case for you. I can eat organic honey without evoking carb cravings. So I've just about eliminated processed sugar. When I do eat processed sugar, it's organic and mixed with something like 70% cocoa. I haven't gained weight so that's a plus!!! With the renewal of energy that I'm experiencing as a result of restful sleep, I imagine that I'll lose weight simply because my metabolism will kick calorie butt, lol ... I'm hopeful anyway!!!
Food and Beverage Suggestions Based on My Experience:
Begin your morning with 1/2 cup of carrot juice mixed with 1 Tbsp protein powder, 1 Tbsp almond meal and 1 Tbsp ground flax seed.
Replace the rice, bread, and white potatoes with sweet potatoes, butternut squash and all things orange.
Salmon, shrimp, mackerel, sardines and anchovies should be major staples – the lower on the food chain, the better.
Non-herbal decaf teas that contain theanin, which easily crosses the blood/brain barrier: This includes Oolong, Green, and Black teas. Note that the theanin is water soluble. Just use a tea infuser or drop your tea bag in a cup of hot water. From there you can either drink it hot/warm or make iced tea with it. I drink it without sugar, but every once in a while I’ll add a bit of honey.
Spinach,
Green Onions,
Cherry tomatoes,
Bananas,
Olive Oils,
Kefir,
Tofu,
Eggs,
Chickpeas (I’m currently experimenting with beans – but chickpeas haven’t caused RLS symptoms),
Hazelnuts (make a yummy spread by blending hazelnuts with honey and cocoa powder to taste). Coffee, early in the morning - anymore than that and my symptoms return.
I drink it hot or iced, sometimes with a little honey but no cream. For me, with the exception of kefir, dairy products kick off RLS symptoms. I have it on my "to-do" list to experiment with soy-based and almond-based milk-like products.
I wish you all the best.
Wow! Thank you so much for you Sizeable input, I eat pretty well anyway but, there are a few things for me to try here.
Here's hoping your good health continues.
Thanks Share 952
A very comprehensive article and well worth trying out- I reckon I'm halfway there - just a few adjustments here and there.
I love kefir but find it makes me deaf- I have to have only lactose free milk.
The rest sounds doable!.
Thank you.
I am happy for you. I've been vegan and then vegetarian eating as much organically as I can....
I've done raw. I've done 0 sugar. I've done keto. I take vitamins that supposedly help with MTHFR mutations. Believe me I've researched and tried it to no relief. Yoga and meditation help calm my sleep deprived days. But my spasms are now going into the daytime. My Dr's want me on all the gabas andaddictibe drug's out there. It's like I have no choice I'm so sleep deprived and in pain.
You are one of the lucky ones that certain chemicals and diet have helped. Best to you.
Thank you, maybe not as lucky as you think though.
I wonder, have you tried acupuncture or Chinese herbal medicine? Just asking because it maybe my next step.
I spent a fortune on acupuncture and it made absolutely no difference to rls. Didn't try chinese medicine. Heard of someone who got great relief from an Indian medicine practitioner - can't recall any of the details about what type of practitioner but rls is prevalent in India too so not sure about that ...
Hmmm, you're in pain-where?
Don't waste your money. I went to the Acupuncture Centre in Camden Town, London where the top Chinese professors visit and carry out treatments. They said accupuncture wouldn't help as the cause of RLS was in the brain and not helped by unblocking meridian channels. They did, however, send me home with some very expensive, very disgusting, herbal tea concoctions which smelt and tasted foul. Didn't help at all.
Like Madlegs says, don't let Raffs see the wine!
Jools
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