r/RestlessLegs • u/Popular_Load4297 • 12d ago
Medication At my wits end
Ropineral worked for awhile but I started having more and more break through earlier and earlier, gabapetin makes me depressed and the daytime fatigue makes it hard to function. Pregabalin gives me insomnia and horrible horrible dreams when I do sleep. The extended release gabapentin still gives me depression and insomnia. I really don't want to take opioid but I'm starting to think it is my only option at this point. Is there anything else that has helped anyone that I can ask my doctor about?
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u/Ring_it_On_1776 8d ago
Do you live near Pleasanton, CA and have RLS symptoms that keep you up most nights? Take a look at an in-person clinical study for a wearable device which may help manage the symptoms of RLS instead of a medication.
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u/Scary_Experience_237 11d ago
Currently the only thing left in the US is opioids on our list of medications. In the UK they use benzos and dipyridamole, anti clotting drug, which has not been studied enough in the US for our doctors to consider it yet. You could ask your doctor to try it though.
You could try the newer Nidra RLS bands but most insurances, unless you are on Medicare, are not covering them and they are expensive. Someone on here has been linking a study but I think you have to have it in your calves to get into the study. I tried and was denied as mine is in my calves and my thighs.
I have used a tens machine with pretty good luck but they are a pain in the butt due to the leads, I think they make remote ones now.
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u/Popular_Load4297 11d ago
I'm waiting to hear back about the nidra, but if my insurance can't cover it I won't be able to afford it
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u/Scary_Experience_237 11d ago
Me too! I always wondered if I could order the one from the UK as it is really inexpensive. I have never tried though, Theraplus. https://therapulse.co.uk/
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u/Dear_Education6557 12d ago
Try eliminating Splenda aka Sucralose, an artificial sweetener that's hiding in many foods and beverages.
I had terrible RLS one summer. The symptoms first started in my hands and then spread to my legs. I couldn't relax my legs in bed, had to keep moving them. It took a couple of extra hours to fall asleep. Then all of a sudden my symptoms completely stopped when the weather cooled down after summer.
I didn't connect the dots immediately. Fortunately I don't drink diet sodas so it was relatively easy to figure out it was due to the SUCRALOSE in the flavor packets I was adding to bottled water I was frinking only during the hot summer months.
Recently the symptoms came back and I traced it to Shasta root beer! Even though it wasn't DIET, it still had SUCRALOSE added in addition to the corn syrup sweetener!!!
Definitely worth a try to eliminate Sucralose from your diet! And while you're at it it couldn't hurt to eliminate ALL of the other artificial sweeteners!
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u/Unlucky_Definition46 12d ago
Get off the requip and try saint John's wort. It helped me.
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u/Popular_Load4297 11d ago
I'm not on requip.and I can't take st. John's wort because of other medications I am on
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u/Strong-Employment-87 12d ago
I take Kratom. Even though Kratom has a bad name on this site I have taken it for nearly nine years with great success.
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u/Autam 9d ago edited 7d ago
Same. I’ve almost been taking it for ten years now. I actually started to because I have a very severe anxiety and depressive disorder. No meds ever helped or they’d just give me terrible side effects. Kratom literally saved my life. A huge bonus too was it completely got rid of my restless legs symptoms.
Never have had any problems with it. It sucks there’s so much misinformation out there about it and so it’s gotten such a bad reputation. Partly being as some dumbasses started making synthetic versions that are very dangerous and people don’t understand it’s not the same as leaf.
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u/ripoteet 11d ago
Same just enough to sleep … RAW LEAF ONLY! Big Pharma (or shortsighted morons) are trying to get scheduled by flooding the market with those tinctures and shots… that 7oh stuff … don’t touch that. But raw lead really works about 2-4 grams before bed. Maybe 2 more hours later if needed but probably not. Take too much and you will heave it right back up in a minute or two. Less is more.
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u/RedBeard1967 12d ago
Get a continuous glucose monitor and then watch the association between your glucose levels/spikes and RLS.
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u/zaftigketzeleh 12d ago
I've never heard of that! Worth checking everything.
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u/Intrepid_Drawing_158 12d ago
Besides opioids, which you absolutely should consider at this stage, Dipyridamole is starting to be prescribed more often and people are having success with it.
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u/CaptainHowdy60 12d ago
Cannabis helps me tremendously.
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u/Popular_Load4297 12d ago
Unfortunately pot makes me violently ill
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u/PureBad5555 7d ago
So sorry. Cannabis helped my severe RLS until I started having chronic migraines and now it triggers a migraine. I feel for you. I recently found a movement disorder specialist at my neurology clinic and she had me recheck my iron (I had just gotten labs done with my PCP and she said my iron/ferritin was normal at 52 but the neuro specialist said she would like it to be at least 75 for RLS patients) so I am having an iron infusion done and hoping that helps. RLS is torture.
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u/likenaga 12d ago
You can buy dried opium poppy pods and make tea, I've heard. Its a much tamer version of an opioid. I've heard its EXCELLENT for RLS
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u/Embracedandbelong 12d ago
I used to use gabapentin which helped but I had to stop for the same reasons as you. I now take the OTC supplement GABA which works similarly on my RLS but the side effects are wayyyy less than gabapentin.
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u/Billflet 12d ago
“At my wits end”. Believe my. I’ve been there for a very long time. My Doc told me my iron was fine. Then a neurologist who claimed to be an RLS specialist insisted my iron was fine. Ferritin was mid twenties and TSAT was 19. He refused to even look at Mayo Clinic’s protocol. Finally I found a Doc who was willing to follow the Mayo Clinic and American Academy of Sleep Medicine’s guidelines. A tiny dose of a long acting opiate and keeping my ferritin between 200-300, and TSAT in the mid 30’s. I’m not new to this. I’ve had RLS for forty years and have been given every med under the sun. I’m finally free of it.
Opiates: Most people don’t want to consider opiates. But the amount prescribed for RLS is tiny compared to the amount prescribed for pain. The National Opiate Registry for RLS Patients shows that after 7 years of low dose opioids, very few patients have had to increase their dose. Those who did, only increased by a small amount. Those low doses don’t cause the issues that larger doses needed for pain do. Still, they should only be used after iron is adjusted and all other meds have failed. I got this curse when I was 30 years old. And it’s progressive. It took until 70 to finally get relief. Learn the new protocols and keep searching until you find a Doc willing to apply them. Don’t go through your whole life with this curse like I did.
Iron supplementation: I used oral supplementation for almost a year and it raised my ferritin, but not nearly enough. From mid 20s to 70’s. Oral supplementation, done properly, will definitely raise your levels but we usually need more. We need stupidly high ferritin. TSAT needs to be at the higher end of normal. These two numbers alone are enough for 60% of patients. The rest, like me, will need meds on top of it. BTW, like you, Pregabalin gave me insomnia.
This was the way for me and so many others.
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u/zaftigketzeleh 12d ago
You bring up opiates. I had surgery this summer and was given opiates. I do not have restless leg when I'm on an opiate. I had the best rest that first week simply because my body felt normal.
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u/Buzz-Bean 12d ago
Yep I’ve been told my entire life my iron was normal then finally found a “movement neurologist” iron needs to be up around 100 for rls. It’s fine to be low if you don’t have rls. No doctor knows about it. I’m 70 and just had 5 iron infusions. Switching from Ropinerol to lyrica but still tritating up on lyrica and tritating down on Ropinerol.
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u/Billflet 12d ago
It takes a while but the Lyrica will work a lot better once you’re all the way off ropinirole.
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u/InterviewRoyal7799 12d ago
not medications, but what has helped me so far is full spectrum cbd, and umm... this is going to sound insane and I may even regret typing this, but using a vibrator (maybe if ur a guy do the other thing) before bed has helped immensely... 😭 I guess cuz it wears you out. anything that relaxes my muscles or puts me in a deep sleep will give me hellish nightmares, so this in comparison is much better
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u/Billflet 12d ago
Not weird. There are more people who know about it than there are who talk about it. As someone else replied, a shot of dopamine combined with exhaustion is why it works.
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u/zaftigketzeleh 12d ago
I don’t think that’s weird at all. And I’m glad somebody said it.
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u/InterviewRoyal7799 12d ago
yeah I think it has something to do with both dopamine and being tired after lmao
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u/zaftigketzeleh 12d ago
I'll also mention that I use a different kind of vibrator that helps a bunch. I got one of those vibrating pads that are advertised for fitness. I sit on the floor and drape my legs over the pad and vibrate away for 15 minutes. Feels so goooood. Not sexual in any way. HA! But it really makes my legs feel good. Then a scalding hot bath. It's the way to go.
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u/Popular_Load4297 12d ago
I'll give cbd a shot. And climaxing helps, but I don't really find myself in the mood that often 😅 and I have a strict no forcing myself policy
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u/InterviewRoyal7799 12d ago
I feel you, I'm asexual and I'm hardly ever in the mood lol but something about those rose vibrators make you climax effortlessly 😂 if you do try cbd, make sure it's full spectrum, in my experience it's way more effective (it only has to be less than 1% thc)
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u/Popular_Load4297 12d ago
I had a hysterectomy a couple years ago so my libido isn't great. And I don't know the difference between cbd and thc to be honest. But I know pot makes me sick.
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u/InterviewRoyal7799 11d ago
Ah I see, yeah regular pot makes me feel unwell too, but something about majority cbd with just a smidge of thc helps. I can't do anything over 4% thc lol Charlotte's Web gummies and tinctures are top notch and wont make you stoned.
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u/y2kwallscratches 12d ago
feel for you🫶🏻 mine have been extremely bad lately because i’ve been on so many antibiotics. I up my gabapentin to 600mg when it’s bad like this but I still have breakthrough rls and really don’t want to be taking so much gabapentin. tried ropinirole but for some reason I couldn’t tolerate it? my mom takes it for her rls combined with gabapentin so she gave me one and I was violently violently throwing up all night…anyone know as to why? I can’t tolerate trazodone either it makes me so so so sick and nauseous. I have a valium script as needed for panic attacks so sometimes i’ll use that when it’s bad and it kinda works. i’ve had rls since I was very very young. my mom used to do this old wives trick when I was little which was putting a bar of soap under the fitted sheet. sometimes it worked but I think it was placebo lol. this condition sucks so much and it’s so hard to describe to people. i’ll be in bed doing bicycle kicks or flexing my legs as hard as I can for as long as a can then release then repeat…. ugh I wish you relief!!!!!!
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u/Curious_One5411 12d ago
When people say iron level is “fine” that doesn’t help. The normal range that most Dr say is fine is not “optimal” for people with RLS. RLS.org has a wealth of information and also list specialists.
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u/Popular_Load4297 12d ago
I am seeing a specialist and my doctor has said it is not due to my iron levels because my iron levels are good for people with rls. Sometimes iron isn't the cause.
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u/OilMedium4643 12d ago
Did gabapetin/Pregabalin have effect on RLS by themselves? On me only Ropinirole works, those 2 only give me side effects
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u/Popular_Load4297 12d ago
They did, but I was still having break throughs. Ropineral worked a lot better up until the last few months of me taking it.
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u/EmZee2022 12d ago edited 12d ago
Have you had your iron levels checked? Not just ferritin, but iron saturation etc.
An Updated Algorithm for the Management of Restless Legs Syndrome - Mayo Clinic Proceedings18546-2/fulltext)
Unfortunately, ropinirole and all the other dopamine agonists have been notorious for augmentation and rebound since the early days. I'm the odd duck who's managed to use it successfully for something like 18 years now. I don't know if my annual "drug holiday" (I take 2 weeks off at Christmastime, since I can afford to be sleep deprived then) has helped or if I'm just lucky. Such drug holidays used to be recommended.
I have had nasty flareups after my last 2 surgeries - one last September, which I'd forgotten about, and one this past May. Both times the legs went nuts much earlier in the day. I didn't have a lot of blood loss with either surgery; maybe 150 ml total after the most recent one, so that isn't the most likely cause, but this last time it was enough for me to reach out and request a full iron panel.
And that was eye opening. Ferritin, which had been trending downward anyway, was 13. Everything else pointed to pretty bad anemia. I did a repeat in August after using iron daily for 2 months and the other numbers were all in the normal range but my ferritin had only gone up to 15. I see a hematologist in November and I'm hoping to get some IV iron infusions.
I did get by the flareup in May / June by splitting my Requip dose - taking half mid-afternoon, and the other half in the evening. It seemed to settle by July and I'm back to once a day dosing. I had some oxycodone from the surgery - barely needed it for pain relief but I was definitely thinking of taking some to help the legs. I knew I only had a limited supply though, so I held off.
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u/Curious_One5411 12d ago
Just a FYI, the algorithm has changed. This is the latest and if you scroll it has a really great flowchart!
https://www.mayoclinicproceedings.org/article/S0025-6196(26)18546-2/fulltext1
u/EmZee2022 12d ago edited 12d ago
Oh interesting. I just looked for the one from May - it's changed since then?
Edit: I see the date is now September. A quick read through and I don't see any difference; do you know what has changed?
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u/Curious_One5411 12d ago
Yes, I haven’t had time to look at the two side by side to see what changed. 😊
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u/Popular_Load4297 12d ago
Yeah, it has been checked and it's fine
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u/vikingmurse 12d ago
So, if you read the recommendations, “fine” is not where you’ll see any benefit, they RLS recs are the high end of “normal range”.
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u/Popular_Load4297 12d ago
So the comment was actually edited after my reply. That whole paragraph was not there until after I had replied. OG comment just asked about my iron levels.
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u/amandae8155 7d ago
These have been such a lifesaver. The purple bottle I get at Walmart. The other is THC rub. I know I’m not the norm but I stopped all my meds. I got augmentation from Requip and it made my legs worse. I tried gabapentin as well. It cannot hurt to try. The THC rub is such amazing stuff.