Hallo, I've been observing possible triggers of RL symptoms and would like to share this with you all.
last year I did a tapering program to come off of Clonazepam, I had been on this drug for over 20 years. The RL was at its worst - after coming off of Clonazepam, it went into remission for around two months, then returned. What changed, I started taking a very low does of Pregabalin (which I'm coming off of now)
I decided about 8 weeks ago to look at my diet and observe if there were any triggers I could indentify. I stopped eating sugar, processed carbs and any food with an ingredients list on it - so just natural real foods. There have been some really bad nights, but also some very good nights.
I went to a friends house for lunch a few weeks ago, no sugar, but that night I had terrible RL - I then recalled she had used a sweetener in the desert, it really didn't occur to me that would / could affect the RL.
Over the past couple of weeks I have had fairly good nights, with very little, if any RL disturbances, then last night, really bad all night. So this morning I was really perplexed as I hadn't eaten anything with sugar or sweetener, I went over everything in my head looking for reasons why it was so bad - one thing I did take was a vitamin C tablet along with the iron tablet that I just can't seem to remember to take from one week to the next. I looked up the ingredients lists and saw sweetener on it... in fact, it seems there are sweeteners added to lots of drugs/foods and will be keeping an eye on this from now on.
I will continue this observation - changing any vit tabs to ones with ingredients as natural as possible. On the plus side of this, I'm enjoying food more than ever and have lost the little bit of belly fat that needed to go ( metabolic health improvements)
My question here though is how can a substance / ingredient affect a neurological condition? I am perplexed. Does it affect the dopamine levels, I've looked this up but not finding much on sweeteners, the hormones and brain. I've always known I'm particularly sensitive, but couldn't of imagined sensitivity on this level.
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Lunatha
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I didn’t do my research before accepting this drug, when I realised it was a CNS I was very unhappy. I’m still recovering from the benzodiazepine. I want my brain and nervous system to heal, I’ve done enough damage with pharmaceuticals. Pharma only addresses the symptoms, not the cause.
😊 It seems that’s the case for me.. the more I learn the more it makes sense 🤞🏼
Damn sweeteners! After radiotherapy last year I had some bowel issues and was prescribed Psyllium (Ispaghula Husk)/Fybogel: I started taking this and my RLS went through the roof! This stuff comes in orange, lemon and 'plain' flavours - but all, including the supposed 'plain', come sweetened with Aspartame....
Im so shocked that sweeteners are in just about anything and everything. I’ve constantly got my glasses on reading labels in the shops, I just stand there shaking my head in dismay like I still can’t quite believe what I’m seeing. When you realised the sweeteners were causing your RL was there an option to take a different fybogel? I hope you’ve recovered now…
I went back to the RT dept and reported my problem with the orange Fybogel: they were concerned and took it seriously, and recommended the 'plain' stuff which wasn't stocked by the hospital pharmacy. I eventually tracked some down in an indy pharmacy in Oxford, but luckily I checked the label before buying it: aspartame again!I understand that you may need to flavour, colour and sweeten the stuff to get kids to take it but why adults need their meds sweetened... (The manufacturers warn that the "product contains aspartame, a source of phenylalanine" - but still don't produce an unsweetened version).
Anyway, I decided I'd manage my bowel issues without Fybogel (or any equivalent product) and luckily I recovered fairly quickly without further intervention!
I’ve never looked so closely at what I’m consuming - some of the ingredients in “medicines” seem very unnecessary, or even poisonous. Glad you found a solution …
You might be able to eat food items with sugar by day. Just try not to eat them in the evening. Generally speaking, things that trigger the symptoms of RLS will do so fairly quickly after ingestion and you may find you can eat them during the day, but not at night. Even things like antacids (ie Tagamet) and antihistamines (ie Benedryl), which are well known and powerful triggers, I find I can sometimes take by day without provoking symptoms. But then sometimes not. At night if I have to take these drugs they always provoke symptoms. Fortunately, these drugs (except proton pump inhibitors) have a short half-life so even if I take a Benedryl at 6pm, by midnight I'm ok. Drugs that have a long half-life, like statins, HRT and antidepressants, probably shouldn’t be taken at all, at any time of day, because they seem to always worsen night-time RLS - probably because they're still in your system when you go to bed. Melatonin should be avoided at all costs.
My food trigger isn't exactly a specific food, but rather a large evening meal of any kind (eating out always means a large meal), will induce symptoms of RLS. I can feel the RLS as I’m driving home from the restaurant. However, it passes in about two hours. My guess is that the similarly large amount of serotonin that is released when I eat a large meal competes with my dwindling night-time release of dopamine and I end up with RLS. I can have a huge breakfast or a huge lunch without a problem. It will not give me RLS right then and there nor will it affect my RLS that night. If you have RLS 24/7 then you probably need to avoid what you perceive as a trigger 24/7 as well.
Interesting.. I’ll keep some things you’ve mentioned in mind. There may well be some interesting time factors at play. I can’t take antihistamines at all, at anytime of the day. Hrt doesn’t / isn’t affecting the RL, but I’m on good ones - bio identical.
Even bio-identical ones can tigger. Just in last week about 3 or 4 people came on here in amazement at how much their RLS improved once they stopped the HRT.
Phew, I found it. Scroll down to Birdland. This was a real eye opener for me. But for the HRT she would likely never have gone on the DAs and into DA hell. healthunlocked.com/rlsuk/po...
Thank you for the link to the conversation. Hormones clearly play a huge part in RL. I’ve had RL since childhood, so do suspect the sugar and carbs being the culprits. I’m still exploring this but so far it’s quite remarkable the difference I’ve experienced.
I wish I could answer the "why", but I completely agree that sweeteners do trigger RLS in the evening. If we go to dinner, then I will avoid desserts, even so called fresh fruit (because I do not know what they put over the fruit to make it taste better).
We did a dinner party for some Indian friends a few days ago and we bought some amazing looking Indian desserts from a specialist Indian shop. After many glasses of wine, I did not think twice about trying them all, as our Indian friends were keen to tell us what they all were. That night my RLS symptoms were almost like going cold turkey.
I definitely also keep well away from processed foods with e-numbers. The worst things are ready made meals in supermarkets (chicken madras with rice etc).
I am not sure that sugar itself is a problem - just sweeteners - but I would be interested to hear your thoughts.
The worst times are on holidays, in hotels. I love holidays (!) but I know that my RLS is going to be a nightmare every night, because no matter how healthily I try to eat, probably most of the food is going to have some sort of preservatives or sweeteners in.
My heart feels for all RLS sufferers no matter how severe their symptoms are. It's a crappy thing to have to live with.
Ah, yes… the food isles of supermarkets - isles of sugar, carbs, E.nos arghhhh! RL hell. I’m on holiday at the mo, Cornwall. I’m in self catering, so bought all fresh foods, - and overcoming the “Im on holiday I must have treats” thoughts. I eat natural sugars from fruits, berries, strawberries raspberry blueberries blackberry’s. They don’t trigger RL. So I’m settling with the “real” food theory until or if that changes.
Thank you for sharing this. I just finished The Obesity Code by Fung and he really hammered this home for me. Preservatives and artificial sweeteners are not good for the human body.
Ah ha! Im just nearing the end of the obesity code… it does open your eyes doesn’t it. I feel the need to de-brainwash myself from eating what has been advised for over 50yrs. I’m enjoying food more than ever and my taste buds are alive. Have you heard of the bliss point? Very interesting-
I believe one thing about food triggers is high glutamate content. That is why we generally have to be careful about MSG--and all the ways it gets into prepared foods, even in things like "natural flavors". High glutamate foods--google it--can be surprising. Like parmesan cheese (and other aged cheeses) and walnuts and some much beloved vegetables. Gabapentin, pregabalin, horizant are all about reducing glutamate in the brain, or some such.
Interesting - I know KP peanuts have MSG. I’m checking ingredients on cheeses, so far all fine, but I’ll keep my eyes open for the sneaky unexpected additive going unnoticed.
If you read about high glutamate foods online you will learn that aged cheese, even aged tomatoes, are higher in glutamate (it won't be on the label--it's just in the cheese) than non-aged (the boring ones) cheeses or less ripe tomatoes. Walnuts are also one of the highest in glutamate. I personally find that some of the fish and vegetables that are listed as high in glutamate do not cause me problems. I do find that I have to be very careful about what I eat for dinner. I can tolerate tomatoes earlier in the day. Even a lot of fructose at night is a problem (sugar in fresh fruit).
I agree with the caution about MSG. That could be why eating in restaurants and eating foods made in grocery stores is triggering RLS. They are often made with MSG (or natural flavor or any of the other names that it is hidden under). I have printed a list of names for MSG that I googled and I keep it posted inside my cupboard door. I am becoming obsessive about reading labels, but it is helping. It's difficult, because we run a food ministry and sometimes I stumble on something that I would love to try, but I often regret it.
I relate, I am also reading labels obsessively, it’s educational and necessary. To make it easy though, if food has an ingredients list, then it’s prob to processed.
Lunatha, I too have changed my diet and noticed a difference. I avoid foods high in glutamate, sugar, carbs etc… The fact that this helps perplexes me as well since RLS is a considered a neurological disorder. I use iron patches with vitamin C so it eliminates that added sugar issue. You might want to try those for your supplements. patchmd.com We try everything to rid ourselves of this horrible affliction, don’t we?
Lovey, thanks for the link, that’s really helpful and appreciated. It’s great we are able to share our experiences and insights - we need solutions and we are finding them…
Aspartame is an excitotoxin just like glutamate. I found this out by reading a book called Excitotoxins: The Taste That Kills. It is a brilliant book for rls sufferers. Aspartame should be banned.
I’m testing this theory out at the mo. I’ve not drunk red wine in ages, I had two glasses last night - organic, no RL. I had tequila last week, no mixer - that was also fine … yippee! Omitting the mixers -no sugars or sweeteners.
I've had two bad nights and a few nights with very mild symptoms.
I've been able to identify foods I've eaten that have triggered RL (besides sugar / sweeteners / processed carbs) foods high in glutamate - I ate walnuts and cheese as a snack one eve and had RL really bad. If I have relief from RL by restriction foods that trigger it, I would happily do what needs to be done to be free of RL and not have to take drugs, which for me make it worse.
When you say “sweeteners” which ones do you specifically mean? Aspartame? Saccharine? Sucralose? Also, when you refer to “sugars”, does that include honey, maple syrup and other “natural” sources of sugar? I have a really big sweet tooth but recently found out that I have plaque deposits in my right coronary artery and in my right internal carotid artery. I am trying to wrap my head around giving up sugars to reduce inflammation (among other dietary changes). If I can’t switch to artificial sweeteners that will be even harder. I’d love to hear other people’s experience with this.
My diet is "real foods" so I avoid anything processed and food with an ingredients list, where you can be sure to find sugar, or sweeteners added. I'm choosing this diet as a lifestyle choice rather than "diet" for a few reasons, one of them being RL and the other because I have high cholesterol.
What / who has helped me along the way was listening to:
Bitten Jonsson, a Swedish addiction specialist and focuses on sugar / carb addiction as an addiction. bittensaddiction.com/en/
Dr Aseem Malhotra, he's a cardiac doctor in the uk, I have read his book "The Pioppi Diet" its focused on a Mediterranean diet.
Dr Jason Fung, "The obesity Code" very helpful to de-brainwash and re-educate myself.
Dr David Unwin -phcuk.org/sugar/ a uk G.P who recently won awards for his sugar graphics charts.
This has all been eye opening for me, I'm not over weight, but I did carry a few extra pounds around my waist, which has gone since changing my way of eating. The RL is very mild as I pretty much know what the triggers are. My cholesterol is unknown as I haven't had another blood test since changing my diet, however from what I've learnt, its inflammation that causes heart disease not cholesterol - cholesterol goes to the site of inflammation and becomes lodged in the arteries.. hence cholesterol being seen as "bad".
All the specialists above say don't substitute sugar for sweeteners, (this includes all "natural" sugars, such as honey) as the brain recognises sweeteners as sugar and expects sugar, it leads to cravings.
There are Facebook groups for support on all of this as well.
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