Truvia a problem?
I'm coming to the conclusion that Tru... - Restless Legs Syn...
I'm coming to the conclusion that Truvia may effect my mostly controlled RLS. Saw on Livestrong that Stevia could cause neurological issues.
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wcp2008
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Artificial sweeteners are a trigger for a lot of people- best avoided anyway as they are linked to a lot of health issues.
Stay off them for 3 months and observe if it helps further.
Good luck
Good advice. I am backing off on how much I use first...cutting it in half and am not drinking anything but water after noon. I'm scheduled for a neurology appt and plan to bring up augmentation and rebound, which no one has ever mentioned to me before. I've been on meds for RLS for about 10 years and over time have had to increase the dosage. When the meds don't seem to work, I add another 1/2 mg. Don't know if that finally helped or if the problem just went away for the night. These nights I walk the house in the dark, hoping that I will still be able to get back to sleep eventually. On a side not, I did give up drinking alcohol because of the Ropinirole.
Oh gawd- the dreaded Ropinirole. What dose are you on now? Don’t increase- it literally adds gasoline to the fire!
Read up on Augmentation and withdrawal so that you are in control. If you have to increase the dose because it’s no longer as effective, if the RLS is becoming more intense and starting earlier or moving to other body parts, then it’s Augmentation. 80% of people on dopamine agonists will suffer Augmentation and the risk increases the longer you have been on them.
You’re not alone- hundreds of us on here have been through it.
I take 2mg of Ropinirole ER at 6 pm then take 1.5 mg of regular Ropinirole tabs at 8:30pm. Seems to control the RLS most of the time. However, I spend my evenings sitting in a hard upright chair until bedtime, because my legs start up as soon as I sit in a comfy couch or chair. I also notice that any time after noon, if I get sleepy (like after eating lunch) the problem begins. What are you using?
The maximum dose recommended by experts is now 1 mg.
I was on 2.5mg normal Ropinirole but suffered what you are now suffering- early afternoons and sitting brought severe RLS on.
I realised I was in Augmentation after visiting this site, so with the help of the wonderful people on here, got off Ropinirole in 2016.
I’m now on OxyContin and pregabalin and can sit in the afternoon, go to the cinema and travel in cars and on planes without the legs kicking off.
I still get about 30 mins of RLS a day but it’s much milder than when on Ropinirole.
I can also get 8 hours sleep a night in two shifts.
I would never touch another dopamine agonist.
I suspect Ropinirole is the problem for you,but artificial sweeteners may be making your RLS worse.
OxyContin...that sounds scary. Do you deal with the usual side effects with the dosage you are on? Do you get sleepy throughout the day? What is Pregabalin?
OxyContin is an opioid and low dose opioids are very effective at controlling RLS. Morphine was the first drug given to patients by Dr Willis ( RLS is also know as Willis Ekbom disease) in 1600’s England. I don’t get any side effects from it ( although constipation is a usual side effect for many). Pregabalin is an anti seizure med and also effective for RLS. It’s sold under brand name Lyrica but pregabalin is the cheaper generic version. I only take at night and it does make me sleepy at night ( a good thing).
Two meds at low doses can be more effective than one med at a higher dose.
So much great info...speaking of epilepsy, I was diagnosed 30 years ago after a gran meal seizure. Spent the next 28 years on 300mgs of Dilantin per day. After chronic sleeping problems, I came to the decision that lack of sleep was the reason for the dreamlike "seizures" I was experiencing. With the help of my neurologist and the Ropinirole helping me with sleep and RLS I was able to go off of the Dilantin. It's been 2 years and I haven't had any "seizures". Im pretty sure that epilepsy was not the right diagnosis. With the interrupted sleep of late, I'm concerned that these dreamlike feelings will come back. I sure would like to get 6 to 8 REAL hours of sleep. Did you quit Ropinirole cold turkey and move to other meds or did. You have to back off of it slowly?
I did it slowly with the help of tramadol and cannabis ( illegal here in the UK). I presume you are in the USA? If so, try to find a neurologist who is prepared to help you through withdrawal as it is extremely difficult for most of us.
The last 10-14 days after the last dose of Ropinirole is hellish with little or no sleep and constant spasms and twitches.
Other meds that are effective include alpha2delta ligands like pregabalin, Gabapentin or ,in the US,Horizant.
The top US RLS experts like Dr Buchfuhrer, Winkleman, Early and Ondo, prefer low dose opioids. Methadone is the least likely to cause euphoria but it’s only available over there in the USA.
Methadone apparently stops the worst of withdrawal symptoms if started while reducing Ropinirole.
You should also get your Iron blood tests as having a serum ferritin level above 100 also helps withdrawal symptoms.
Pennsylvania has legalized medical marijuana...will bring it up with my doctor. Thank you for all of your information. I now know I must make a change in how I'm controlling my RLS.
The more you educate yourself about RLS and the drugs used to control it, the easier it will be to get the help you need from your neurologist.
Consider buying an RLS medical book ( actually quite easy to understand for lay people).
‘Clinical Management of RLS ‘ by Dr Buchfuhrer, Hening, Lee and Allen ( second edition) can be bought on Amazon for a reasonable price.
I don't know if you're in the us with that OxyContin but you can sell that stuff on the streets. They pay good money for it. That's real dope! I hope you can get off it.
Are you serious? I take OxyContin because it is prescribed for my severe RLS at LOW dose. Why would I want to get off the only drug that helps me? I’m not an addict, I don’t get any ‘high’ from it and people with RLS stay on the same low dose for decades. I suggest you educate yourself on low dose opioid effectiveness for RLS.
Spot on Jools people need to think before putting such distasteful comments
I find this comment distasteful Joner
Hi Joolsg I wonder if you (or anyone else on opioids) could help me. I am now taking oxycodone (Longtec) extended release as per suggestion from the good Dr. B. I take 5 mg. in the morning and 10 mg. in the evening. Up to a point this is working well as amount of RLS has decreased very much and I am definitely getting more sleep (used to be 3 hours tops). Now I would get about 5 hours on and off but I am able to lie still for the rest of the time which is great.
I have read on this forum on different occasions that although this tablet is supposed to last 12 hours in fact it lasts much less time. I take the 10 mg. tablet at about 9.45 p.m. and then the 5 mg. in the morning about 9.45 a.m. My problem is that when I get up in the morning I feel depressed and have shakiness in hands. I find this quite upsetting at the start of each day and I think it is like withdrawal symptoms as the tablet is not covering me for the 12 hours. I remember someone else on here saying much the same.
Can I ask are you affected like this and what dosage you are taking? I am very sensitive to medication of all types so perhaps I just feel the effects more than some others. I cannot take gabapentin (which triggered start of migraine) and Pregabalin caused swelling so my only course at present is opioids. I am seeing GP on Friday and am lucky because he goes along with what I suggest. Hope you do not mind me asking. I have been on this dosage for about a month and I had hoped the side effect would perhaps disappear. Sorry for the dissertation and thank you for reading it!
I had bad side effects from OxyContin ( which is oxycodone ER) at first. I initially took 10mg at 9 pm and 10mg at 9 am. I started to have severe panic attacks after 2 weeks & was still not getting coverage at night.
Dr B suggested adding a small dose of pregabalin late at night just before sleep. I started on 75mg and worked up to 150mg. The panic attacks stopped almost immediately as pregabalin is an anti anxiety drug.
But then I developed swollen lower legs BUT I stayed with pregabalin and really watched my food intake and started wearing compression socks.
All the pregabalin side effects stopped after 3 months and I now take 100mg at night.
I also added 5mg of OxyContin at around 1/2am in the morning.
It is really difficult to find a combination of meds that stops RLS but doesn’t cause unbearable side effects.
I suggest you even the dose of OxyContin so you have no ‘dip’ in dose over the 24 hours which may be causing mini withdrawal.Take 10mg twice a day.
If you still get the side effects ask your GP for low dose diazepam to take up to 3/4 times a week to settle the shaky hands and depression. After a few weeks try reducing the dose of diazepam and see how you are feeling.
I really hope you can stop the depression and get some sleep.
Take care
Jools
Thanks for the warning I had to look up Truvia and Stevia. What is Livestrong?
• in reply to
Livestrong is a health related website. Here's the link to their "about Livestrong" page- livestrong.com/aboutus/ They have some good information, but like any other, check out what you read in other places. Nutrition/health info is rapidly changing all the time.
• in reply to
Thanks
i replied to another post by wcp2008 about this and they are taking Ropinerole ER AND Ropinerole regular, i have a feeling that its the Ropinerole that could be the problem.
I've been under the impression that stevia isn't nearly as bad as actual chemical artificial sweeteners like aspartame. But then there are bound to be people that react to it one way or another, and Truvia is a highly processed version of natural stevia. I know from experience that sucralose (Splenda), which is showing up in lots of products now, can be a problem. Too much gave me diarrhea! Not pretty. Guess it would be better to just try to wean away from needing so much sweet in the first place.
• in reply to
A simpler solution. I haven't used sugar for years and have never used sweeteners.
wcp2008• in reply to
Thank you for your reply. I am going to back off using Truvia. Now that I've learned of augmentation and rebound, I will be bringing that up with my neurologist in June. I was blaming my decaf tea, thinking that there must be some caffeine in it anyways, but seeing the information on Livestrong really got me wondering about the stevia. I will avoid tea all together in the evenings. I'm just glad I found this group, because my RLS is quite severe when it is being disagreeable with the meds.
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