Triggers: Everyone talks about triggers... - Restless Legs Syn...

Restless Legs Syndrome

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Triggers

Woody4 profile image
12 Replies

Everyone talks about triggers. I had 2 episodes of rls before age 12 and not again til after age 60. Food, drink and activity have pretty much stayed the same but the rls started to be more frequent as time goes on. Is it something I have always eaten/drank now my nemesis??

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Woody4 profile image
Woody4
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12 Replies
Madlegs1 profile image
Madlegs1

Nice one, Woody!

Without more information, it's only possible to theorise.

What did you experience pre 12yr old?

Other wise I'd speculate iron might be a factor- as we age , ferritin may decline, but you may have had sufficient iron all your other life. A serum ferritin test would find that out.

Many people find rls increases as we get older.

Interesting case!🤠

Woody4 profile image
Woody4 in reply toMadlegs1

Pre 12 was legs. Woke me up in the middle of the night. Laid on bathroom tile floor and read a couple chapters in a book. Once it quit, went to bed with no further problem. Both times were within 6 months of each other. When it started later in my 60’s it was mostly in my arms and lasted only short periods of time. It has progressed until I had to start meds.

Madlegs1 profile image
Madlegs1 in reply toWoody4

I suspect the early attacks were triggered.

For the present, I would get serum ferritin checked-- should be at least 100.

If you've been on medications, especially dopamine agonists, then augmentation is always a factor.

Good luck.

Things change as you get older. If you had the potential for RLS when you were young it will have gotten worse. Additionally, triggers can develop at any time and what might not have triggered RLS when you were young, might now be a trigger.

The liver and kidneys get less able to deal with things as you get older so yes, something which you've always been able to eat or drink might now have become a trigger.

Leorocks profile image
Leorocks in reply to

Manerva, I am now 77 and totally relate to things, RLS, getting worse! Diagnosis came for almost 20 years ago but I remember have infrequent episodes of RLS as a child. Now, even with meds, episodes are almost daily!

in reply toLeorocks

Your medication may be a factor. As Madlegs mentions, you may be suffering augmentation. What medication are you taking, what dose and how long have you been taking the medication for?

You answers may help identify if you're augmenting.

Leorocks profile image
Leorocks in reply to

Thank you for responding! I take loads of meds for hypertension plus Norco for arthritis pain and Mirapex for RLS. Neurontin is rather newly added...1 at 3:00pm and for past few days, 1 at bedtime. No problem with afternoon dose, taking with all the other meds is awful! Nausea, diarrhea, extreme, frightening dizziness!

in reply toLeorocks

What dose of Mirapex are you taking and how long have you been taking it. One of the consequences of long term use of Dopamine agonists (DAs) such as Mirapex is Augmentation. Augmentation is where paradoxically, instead of relieving RLS symptoms, the DA starts to make it worse.

The signs of augmentation are

Symptoms spread from the legs to other parts of the body

Symptoms start to occur eralier in the day.

Symptoms are more severe.

The latent period, i.e. the time between stopping moving and onset of symptoms gets shorter.

Leorocks profile image
Leorocks in reply to

Manerva, Mirapex is .125mg, once a day. Take another in afternoon if need be. But Now Neurontin is added instead of extra Mirapex in early afternoon. Doctor had me start with just 1 for 2 weeks on Neurontin then add another at bedtime. Made me so sick...diarrhea in night, nausea, stomach cramps. Today she suggested I hold off on bedtime dose of Neurontin until after tomorrow ‘s heart Cath is over.

in reply toLeorocks

Hello again and thank you for that information. Your dose of Mirapex isn't particularly high, which is good as such a low dose is less likely to cause augmentation.

I'm sorry to hear you're unfortunately having to take such a cocktail which inevitably leads to gastrointestinal problems.

I'm not clear about 'when' you take your 'once-a-day' Mirapex. This is significant in relation to when you get most RLS symptoms.

RLS you may or may not know is related to our "circadian" rhythm. This is the 24 cycle of changes through which our bodies go. The cycle is generated by built in "biological clocks" and is externally regulated by exposure to light. The obvious cycle is (naturally) that we sleep at night and are awake in the day. Additionally they are daily changes in the levels of various hormones and neurotransmitters. Examples include cortisone, norepinephrine, growth hormone, serotonin, melatonin and dopamine.

I say 'naturally' because in modern times the use of artificial lighting, electric lights and significantly backlit screens is causing problems. That is, we put the lights on when it's dark or watch TV.

RLS symptoms most commonly occur at a certain point in the circadian cycle, i.e. at onset of sleep which should be in the evening. This is due to lower levels of some hormones and neurotransmitters at night.

Hence it's usual to take medication in the evening. Mirapex has a half life of 8 hours which (put simplistlicly) means if you take 0.5 at 8 pm there will only be 0.25mg left at 4am then 0.125mg left at 12 noon.

Sorry for such a long winded explanation, (I used to teach this stuff!).

Since the effectiveness of the medication depends on a sufficient level, (therapeutic level) if you take Mirapex too early, then by the time you need it most, the level left will not be therapeutic, i.e. it won't work.

Another thing is, I have only read this, is that Horizant might be more effective for RLS than Neurontin. (They're different forms of Gabapentin).

I've been taking Pramipexole for 12 years and have found from time to time that juggling a bit with the time I take it can make it more effective for a while, then I have to change it again. However it's always at the exact same time and always in the evening.

I hope this helps

Sara_2611 profile image
Sara_2611

Hmm I dont know have you consulted your doctor- For me personally it only seems to arrive when its warm at night

Very good luck

sara

robert1957 profile image
robert1957

hello

please research magnesium deficiency and symptoms of magnesium deficiency also research benefits of vitamin d3 and k2 Mk 7 also look at the benefits of drinking celery juice on a empty stomach first thing in the morning

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