I’ve read many posts here which has given me hope. IF YOU FOUND COMPLETE RELIEF from buprenorphine or any other drug, please write a short comment to give me some hope!
I was previously on pramipexole, pregabalin and rotigotine patches. Currently on gabapentin and medical cannabis. Sadly, while they do relief symtomps to a certain extent, I can still hardly get any sleep and it’s just becoming rather unmanageable. RLS is affecting each and every area of my life - constant exhaustion, RLS in arms, day time RLS every single day. Just trying to get through and “exhausted” is how I describe myself every single day for months if bot years now.
I’ve read about some of your great experiences with buprenorphine - is this the only option, or is there anything else to try? I believe the majority of you have had amazing results, and it’s just so refreshing to read! I’m slightly concerned about the long-term effects after rotigonine - magical drug to begin with, absolute hell at the end. Hope buprenorphine does not work in the same way.
Iron check underway - no referral for over 6 months (surprise surprise). Did get blood tests years ago, was fine, so assuming it’s not related to iron, but always good to check (I’m the third generation person with RLS, so I guess it’s genetic, started in childhood as well).
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I get COMPLETE relief from RLS with 0.4mg sublingual Buprenorphine.I NEVER get any RLS and sleep 8 hours every night.
It literally saved my life as I had logically reached the conclusion I wasn't prepared to carry on living with severe RLS on my previous meds ( 150mg pregabalin and 25mg Oxycontin).
I had an iron infusion and my serum ferritin raised to 805. Still no relief. I tried EVERY possible vitamin and mineral supplement, grounding sheets, restiffic leg straps etc.
Buprenorphine worked instantly the first night I took it. RLS score went from 38/40 to 0/40 overnight.
I did have to fight for it. There were several heated exchanges with Professor Ray Chaudhuri at Kings College. Eventually he sent an email to say he would have no objections if my GP agreed to prescribe.
Luckily I live in an area where Buprenorphine is not red listed. My young, female GP was happy to read any research I sent.
Side effects were severe at first. Extreme nausea for 7 to 10 days. However, I resolved it with medical cannabis taken for a week.
Then opioid panic attacks at week 4. But I had suffered with them on Oxycontin so was prepared. I had a stock of pregabalin and Dr Buchfuhrer had emailed me to say pregabalin would stop the panic attacks.
I took 50mg for around 4 weeks and slowly reduced down to 12.5mg. It stopped panic attacks and helps counter 'opioid wakefulness'.
I also get opioid sweats and I take half a cetirizine anti histamine. Pregabalin also helps sweats. But I'll take a few hot flushes and sweats over severe RLS any day.
Also, ask for numbers after blood tests. Doctors do not know that RLS patients need much higher serum ferritin and serum iron than the general population.That's why iron therapy (pills or infusions) is first line now.
What other meds are you currently taking and where do you live, as Buprenorphine is difficult to get in many countries and in parts of the UK.
Gabapentin can help many BUT there are research papers showing gabapentinoids do not help after years on dopamine agonists.Also, make sure you're taking Gabapentin correctly. At night only and in split doses of 600mg 2 hours apart.
By the way in looking back at your replies, You replied 9 months ago to one of your own posts 11 months ago. Nobody will see that since people usually only look at replies to posts for 1 to 3 days ago. And I might add that was a hell of a way for you to do the reduction but I am glad you are off it. I assume you were completely off it months ago and your symptoms have settled.
Buprenorphine does not work in the same way as the DAs and though withdrawal if needed is not pleasant but if done very slowly if no where like withdrawing from a DA.
My RLS is completely controlled by gabapentin. Are you taking it the correct way? Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you later decide to come off gabapentin, do not just stop it. Reduce it by 100 to 200 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
What is the delay in getting a full iron panel? You were trying to get it a year ago. You say the tests were fine before but what is fine for others is not fine for those of us with RLS. Be sure you ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
It is very strange to have symptoms in your arms and during the day. That is more typical of withdrawal symptoms from rotigotine which is why I asked if you have been off it for awhile and your symptoms have settled. Sometimes this can take several months or more especially reducing the way you did. Are these symptoms what you had before you took DAs?
It's also possible that your dopamine receptors were damaged by taking the DAs in which case the gabapentin won't work.
However the most likely possibility is you are taking a medicine or OTC supplement that is make your RLS worse. If you are taking any I may be able to provide a safe alternative.
Yes, off ritigotine completely. It took me probably a month or two to go down to 0 back in March. This is not to say I’d recommend anyone do the same in such a short period of time - unless you fancy an A&E visit. This was back in March (ish). So now for more than 6 months on gabapentin alone 1800mg (+ circa 1g of medical cannabis). Would not want to increase gabapentin any more. Taking 600 at 10 am, 600 mg at 3 pm and 600 mg at 8 pm.
When I started, wad taking 600 mg at 4pm, 600mg at 6 pm and 600 mg at 8 pm - please don’t do that - waking up was literally impossible. Literally.
How would you reduce gabapentin in 100mg/200mg doses? Neurologist did say that he’d recommend reducing by 100 mg but tables do come in 300mg, so he said need to go by 300mg.
Got an appt with the neurologist but nothing new. They messed up the blood tests and just said: well, if you don’t get a letter for bloods again, just call the hospital. So will be calling hospital again.
Thanks for suggesting dipyridamole. Neurologist doesn’t have any other suggestions, so will need to do own research.
I can’t recall having symptoms in my arms before DA really. Started mostly while I was on DAs. Currently on and off but still there. Same with day time RLS - mostly since augmentation, just constant. Not taking any supplements or medicines.
The only difference gabapentin makes is that it somewhow masks the symptoms. They’re still there but not as horrific as they would be if I was off all meds. It’s bad but bearable. It’s just that I still cannot sleep, cause RLS is there, every single night.
Gabapentin comes in 100 mg capsules. Since you are only taking 600 mg at night it is not surprising you have symptoms at night. You might want to try increasing the nightly dose to 1200 to 1800 mg the usual effective dose for RLS according to the Mayo Updated Algorithm.
I strongly suspect your symptoms are the result of your too fast withdrawal from rotigotine especially since you are having daytime symptoms and didn't have them before. That could also be why the gabapentin hasn't worked better.
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