Triggers

[wantokporo]

If I do everything right--which I don't know exactly what that is--I will have a great sleep with my current pregabalin/morphine routine. BUT, not for not trying, I can't figure out my triggers well enough, or, I guess, it could be that I just don't have PLMs every night (although I did before I got the right pregabalin/morphine dosages). Some high glutamate foods are definitely no-no's, like Parmesan, but other foods that are relatively high in glutamate (like eggplant) seem mostly okay, although I am not positive. What goes in me at dinner makes a big difference, especially any salt, but also I think possibly my triggers have changed over time. I can't believe I am the only one out there that has had this problem. My first round with pregabalin I just increased the dose when I had this problem, but I know the more I take the more I will be sedated during the day which is counterproductive so I would like to be able to figure this out. Please don't tell me to keep a food diary, although I don't know what else anyone could say. I watch everything I ingest carefully. Part of the issue, I guess, is this is cumulative over a day and likely there are interactions with different foods/drinks. I eat a very low salt diet (which leaves out a lot of foods), no emulsifiers, minimal prepared foods and only w/ "safe" ingredients, no "natural flavors" and MSG of course, very low refined sugar, avoid high glutamate foods, no alcohol. Caffeine seems okay. Any thoughts?

[707twitcher]

it may not be of much use to you, but my triggers changed dramatically from when I was on Pramipexole to now being on buprenorphine. My only real trigger before was salt and/or not drinking enough liquids. Nothing else really mattered. Now, I have no problem with salt. The only trigger I have found is caffeine after noon.

Strange how my triggers seem to depend on the medication I’m on….

[RiversW in reply to 707twitcher]

My triggers changed when I moved from Mirapex to Neupro. No longer was I bothered by alcohol or chocolate. When I was taking Mirapex, if I so much looked at chocolate or beer I started shaking. Fortunately, both are behind me now and with Buprenorphine I have yet to determine if I still have any triggers. Also, coffee has never been a problem for me. In fact, in the past, when in the middle of an attack, coffee could help relax my legs. Strange, yes!

[Wordsworth99 in reply to 707twitcher]

It is strange. Or perhaps the same triggers affect the person but the new medication controls the RLS so much better, so the triggers aren’t noticed.

[SueJohnson in reply to Wordsworth99]

I have found that since my RLS is controlled with medicines that I am able to take things that are known triggers like benadryl that before I couldn't.

[nocturne]

I can relate. I was on an anti-inflammatory diet (no sugar, no refined carbs, no alcohol, no fired food, etc. etc., you know the drill), for 9 months, and and it made ZERO difference to my RLS. I've read often enough on this forum that diet makes a huge difference for some people. Well, I'm not one of them, and perhaps you're not either.

I hate it when self-help books and other resources make it seems as though we can cure everything through diet (and it's our own damn fault if we don't) . If only.

I'm sorry that I have nothing pro-active to offer, except to say that this is not your fault, and your RLS is not caused by anything you're doing. I appreciate your posting, since it validates what many of us here are experiencing. I hope that you'll find relief soon, even though it may not come through dietary changes.

[Hidden]

Hi Wantokporo, I'm wondering whether diet impacts PLMs or just RLS.

I do know that i have a lot of night-to-night variability in the severity of my PLMD.

Diet most definitely affects whether i have RLS or not, but i just don't know with regard to my PLMD, as it's very difficult to measure this (being asleep when the limb movements tend to happen).

With the things you have noticed help your symptoms, I'm wondering whether taking it a step further might help eg. no processed/prepared foods, no sugar or simple carbs etc. I realise it's not easy or fun following such a limited diet but it may pay off.

Also, it's early days but i have given my son supplemental GABA for the past 3 nights and he seems to be sleeping deeper, and have fewer limb movements (he too has PLMD).

Here's my reply to 1kam's recent post (link below).

healthunlocked.com/rlsuk/po...

Thanks for reporting on your experience. I find an ultra clean diet almost completely eradicates any breakthrough RLS. PLMD is a slightly different story...it's still a work in progress.

By ultra clean, i mean no processed food whatsoever, no sugar, no alcohol, very minimal gluten and only wholegrains, a lot of fruit and veg etc.

I had tried gluten free and low FODMAP diets previously but they didn't make any difference. Probably because I was still having a lot of what I no longer eat (processed food, sugars etc).

On the two occasions I have done an ultra clean diet, I have also increased the amount of walking I do in the week, so that may also contribute to reduced RLS.

I also continue to take pregabalin but have dropped from 300mg to 200mg nightly and plan to keep reducing.

[wantokporo in reply to Hidden]

I only eat processed food after checking the labels so I am not eating anything that isn't real food, i.e., no preservatives and all the other chemicals. Where I live they do make such "prepared foods". And I know the little sugar I have in the morning doesn't cause a problem. Gluten is not an issue; I can hardly eat bread because of the high salt content anyway. GABA did nothing for me. Though, as I said, I wonder over years how things change with aging. THANKS to you above for weighing in on changes due to medicine changes. That may be part of this picture and I will experiment some with that in mind.

[Graham3196]

For years I have kept my RLS under reasonable control only by a controlled diet. As I age its coming back but in a smaller way. Just a couple of weeks ago I started on a low dose of gabapentin which has been successful. ( 200mg 2 hours before bed)

My diet is pretty simple. I eat rice with canned tuna and sweet chilli sauce and gluten free roast chicken although all meat and fish is OK. I can eat mature cheese and soft cheese like Brie. Apparently the manufacturing process changes the lactose into something harmless. I avoid lactose, caffeine in tea or coffee, (drink warm water because I have been told that there is residual caffeine in decaf) onion, garlic. I eat 10 rice cakes per day with cheese or peanut butter. I used to be able to eat Ginger Marmalade but then it started to upset my legs. For guidance I use the Monash University Fodmap diet App (available from Monash website for about AUD$10) although I avoid anything there that is a bit doubtful. This is an exclusion diet so you follow it for say 12 weeks ans see if your troubles are reduced. Its intended to make the choice of food and identification of triggers easier by starting with almost nothing and then adding to nothing at the rate of one item per challenge. If you are appreciably better then you can try to reintroduce real food one item at the time. Start with each introduce with a small dose then increase it over a few days . For example I took a quarter of a glass of milk then next day a half and then three quarters and then a whole glass which tripped me over my threshhold and I had RLS for a couple of days. I now have milk on my banned list just in case it interacts with something else at the lower doses.

You will be surprised at how many eating places now serve gluten free and even onion and garlic free if you ask. If not then, at most decent restaurants, you can ask for bacon and eggs with a salad (no dressing)

Good Luck

[wantokporo in reply to Graham3196]

Thanks for the input. I have always found that my PLMD responds daily to what I eat that day. The next day (almost always) doesn't matter. This is not a straight-forward "food allergy" situation where you have to test over weeks, at least in my experience. The great news is I do not have any problems with almost any Indian cuisine which I adore.

[Wordsworth99]

I too have been stumped trying to work out food triggers in the past. Then, one night when it became all too much I went out with a good friend for dinner, ate whatever I wanted including foods I felt sure were triggers (though not MSG), had a glass or two of wine/beer and had a totally enjoyable evening! That night I had almost zero RLS! This has happened on a few occasions and has led me to believe that the quality of our emotions plays a big part. So perhaps keep a happiness diary instead. Being happy, TRULY happy, is just as important , if not more so, I believe!

[Wordsworth99 in reply to Wordsworth99]

I think that we with RLS become so fixated on the disorder/syndrome (for good reason because it is so debilitating) but need to try to relax and enjoy every day, because if we don’t we end up with all the stress hormones coursing through our veins, which, for me at least, makes the RLS so much worse. Easier said than done, I know! Some people find that vacations help, spending time with family/friends who make them laugh helps, or trying something new. The other thing to remember is that if we focus on being happy, and succeed, all of our health issues will improve. Anyone want to join me for a margarita tonight?! 😁

[wantokporo in reply to Wordsworth99]

From researching PLMD, it seems all parts of the nervous system are involved and that would include the parasympathetic one, so you have a valid point for PLMD anyway. Can't speak about RLS. Not being stressed, being happy would play a role.