More triggers!: I take 0.25mg Sifrol... - Restless Legs Syn...

Restless Legs Syndrome

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More triggers!

14 Replies

I take 0.25mg Sifrol - maximum safe dose recommended by my doctor here in Australia. This deals with what I think of as the genetic part.

However, triggers can set things off. The latest I tracked down because I was experimenting with recipes for visitors with issues.

They are all the deadly nightshade family (tomatoes, potatoes, capsicum etc) and all the corn/maize family.

This is a nightmare for eating out as processed foods contain many of these especially the maize.

I think sweet potatoes are out as well. And maybe sulphites. Though, I can eat the locally made ham and bacon from our butcher. Cannot have my favourite Bundaberg Ginger Beer.

Anyway, I feel better off them and have lost weight without cutting back on eating enough to feel satisfied.

(Other triggers: Stematol, Phenergen, opiods, antidepressants, Dehydration, overtired. Random food additives.)

Hope this might help others.

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14 Replies
Madlegs1 profile image
Madlegs1

Thanks.Makes for tough going.

SueJohnson profile image
SueJohnson

Are you aware that up to 70% of people will eventually suffer augmentation on a DA like Sifrol according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

You would be wise to get off it now and on to a safer medicine to control your RLS before this happens as it will be a lot easier. If you decide to, let us know and we can tell you how to do this.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

check out RLS-UK rls-uk.org/

jcsm.aasm.org/doi/pdf/10.56...

relacshealth.com/blog

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

art37 profile image
art37 in reply toSueJohnson

gaberpentin - fell over when I got out of bed the first morning- took no more. I know you are advising people but are you actually a doctor ? Every case is different and needs a doctor overseeing it. If you are on dialysis they keep a constant track of your iron and test you and we get iron in our lines every week.

SueJohnson profile image
SueJohnson in reply toart37

No I am not a doctor and obviously a doctor must oversee any treatment.

I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

SueJohnson profile image
SueJohnson

Looking back at your old post and replies, it is obvious that you were augmenting 6 years ago. You also mentioned you were reluctant to take any other medicines as they were not effective long term and had serious side effects. Gabapentin and pregabalin and low dose opioids are very effective long term. Yes it is possible to have serious side effects but they are rare and unlike dopamine agonists like sifrol, they are easy to wean off it when one realizes they have them and the side effects go away.

On the oxynorm you had when you had brain surgery, it does not cause RLS. But brain surgery and the inflammation from it can as will as having the wrong anti-nausea medicine so don't cross off low dose opioids off.

Do read the 3 links I gave you. Things have changed in 6 years.

CookiePooki profile image
CookiePooki in reply toSueJohnson

Thanks Sue. Doctors continue practicing but I think those with this curse are better than doctors who do not have RLS. Thanks again for sharing all.of your experience and knowledge

ucdailoi-no-1 profile image
ucdailoi-no-1

Wow, that is a long list.

My allergy (not associated with RL as far as I know) is to Salicylates, a natural chemical made by plants. I must now seriously consider the possibility that it might be involved in the RL.

ucdailoi-no-1 profile image
ucdailoi-no-1

Sifrol like so much of what we get here in Australia for the treatment of RSL is years behind the USA where it is no longer used.. I now use BUP, which I have been on for nearly 5 weeks and I am told that it never stops being effective. Sifrol on the other hand will lead you up the garden path and then ambush you.

Be prepared to change away from Sifrol..

Are you on the East Coast, maybe around Brisbane way.. I can give you the name of a doctor who will help with BUP.

SueJohnson profile image
SueJohnson in reply toucdailoi-no-1

My laugh for the day, although it is so true - will lead you up the garden path and then ambush you. 🤣🤣🤣

in reply toucdailoi-no-1

Opiods do not work for me as painkillers and I am almost sure it is the oxynorm I was given after brain surgery that gave me 20 hours of rls.So, I think I will stick with the low dose of Sifrol and avoid triggers for now.

On Victoria so nowhere bear Brisbane.

SueJohnson profile image
SueJohnson in reply to

It was probably the withdrawal from it.

restlessstoz profile image
restlessstoz in reply to

Hi, it could also have been something that was given you during the surgery such as antiemetics. Unless the anaesthetist knows you have RLS they may give you something that will trigger it without knowing.

Also as Sue suggested, the dip in opioids before the next dose can trigger a bout of RLS. I wouldn't discount trying opioids again to discount the experience you had, in case it is something that may save your life as it did for me and others on this forum. I too found there were a lot of things that I felt triggered my RLS and ended up on a VERY limited diet and couldn't even face deciding what I could now eat.

Having been on buprenorphine for nearly four years, I can eat most things though sugar remains the one things that can initiate mild RLS symptoms if I overindulge. The rest of foods that I didn't eat because I thought they caused the symptoms, I can now eat without any problems. In my experience, the better the coverage from whatever medication you find helps, the more you will be able to eat without symptoms. In fact, I now seriously wonder whether the conclusions I came to about my diet were even accurate as I was not able to conclusively show anything that really affected me.A lot of the time I think I was grabbing at straws as I was so desperate to find something that helped. It could all have been mixed up with other factors I wasn't considering. (I'm not saying this is your experience... just explaining mine. )

Good luck working it all out.

in reply torestlessstoz

The food links seem very definite.

I will discuss with doctor about the opioids but they do not work for me as a painkiller so I was suspicious. (I was in a neurological ICU and the nurses seemed to know nothing about RLS)

Niewiem profile image
Niewiem

I have ginger beer every day. Nightshade too this is how diff.we r. But opioids a trigger? Not for millions of rls sufferers rather a blessing than trigger. Cheers

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