First, I would like to say a big thank you to Jools and Sue Johnson in particular, and others on this site. I wrote on here some time ago that, because I know that a lot of MS sufferers suffer with restless legs, I was going to try oxygen therapy at our local MS Centre and want to share the results. I had 20xl hour treatments in quick succession and during that time I felt that the intensity in my legs was improved and I am now having weekly boosts. However, this doesn’t seem to be working as well as I had hoped. I will say, the quality of the few hours sleep I now have is better but the evenings are no better and I still can’t contemplate trying to get some sleep until around 2 am when I usually fall asleep in the armchair, waking about 4am when I go to bed until about 7am, this is a vast improvement as I feel better in myself and I am so grateful.
I am currently taking 1800 Gabapentine (split into three 600) and two Tramadol at around 10pm. I am seeing my GP next week and will, again, be asking to trial Buprenorphine although I think it’s unlikely that I will be getting a prescription. I saw a Neurologist a few months ago who wrote to my GP saying that she suggests I first try Clemazipam and if that doesn’t work Oxycontin. I have tried Clemazipam and had the most horrid side effects, to the point that my husband destroyed them as I became almost psychotic and he found it all quite disturbing! I haven’t tried OxyContin because my son has (he also has RLS) and found them very hard to come off. I cannot remember ever having any side effects from any drug before, hence I’m continuing with the Gabapentine and Tramadol.
I am wondering if I should just think myself lucky for the small improvements and forget about the Buprenorphine or at least until the Gabapentin stops working again, I really do not want to increase the dose having been down that route with Neupro patches and experienced a hideous time coming off them.
I apologise for the length of this, just trying to unravel the confusion I currently feel.
Written by
Mulberry100
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I would continue to ask for Buprenorphine. Print out the section on opioids in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... to show to your doctor. As far as the gabapentin if you ever need to come off it if you do so very slowly you will have NO withdrawal effects. I would switch to 300 pregabalin which you can do without having to wean off gabapentin and then increase it by 25 mg every couple of days until you find the dose you need. The normal maximum is 450 mg but you can increase it to 600 mg. You don't need to divide the doses but can take it all at one time 1 to 2 hours before bedtime.
Thanks for reporting back on the Oxygen therapy. I'm so sorry it hasn't been more effective.Gabapentin doesn't work for many people, especially if they've been on Dopamine Agonists before. Dr. Buchfuhrer mentions it.
Gabapentin and tramadol, then pregabalin and Oxycontin didn't work for me, which is how I ended up pushing for Buprenorphine.
Many people do well on Oxycontin but it is supposed to last for 12 hours and is taken twice a day so that it covers 24 hours. However, in practice it only lasts 4 hours for most people and can then cause mini opioid withdrawals. The main symptom of opioid withdrawal is RLS. So, until you try it , you won't know if it will be a good option.
Madlegs uses it every 12 hours and it works well for him. Others use oxycodone, a shorter acting version and take it at night only.
If the gabapentin isn't helping and you do switch to another med, make sure you stay on gabapentin and reduce it very slowly to avoid withdrawal symptoms. Your GP will recommend a very fast withdrawal. It's always better to go much slower.
Many GPs refuse Buprenorphine and insist they need a neurologist to approve the prescription. Mine agreed to a 3 week trial and called every week to check progress. She was so impressed by the instant results that she put it on repeat prescription.
Show your GP the Mayo algorithm and the Massachussetts Opioid study and hopefully he/she will agree to a trial. Start with 0.2mg the first night and if it doesn't give immediate relief, try 0.4mg the next night. Effective dose is 0.5.g to 6mg. Most people do well on 0.5mg.
hi, unfortunately Gabapentin and I didn’t get along and even tapering off slowly was difficult. Then I was put on Duluxotine which though had no bad side effects didn’t seem to help so I came off that. My current prescription works really well but it is for spinal issues as well as RLS and peripheral neuropathy. I have a Buprenorphine 35 mc patch and Amitripline with 1 100mg dose of Tramadol and 2 x 10 ml of Oramorph for breakthrough pain. It’s taken years of juggling about with other opiates but this is what works for me. I’m in the U.K. and my understanding is that a hospital consultant needs to initially prescribe Buprenorphine then the GP takes over regular prescriptions. It doesn’t have the normal side effects of morphine such as confusion/sleepiness and constipation and my life has changed dramatically switching to it.
You absolutely should not settle. You deserve better!
In your favour Tramadol and OxyContin are both opioids, which is a start as many doctors will not prescribe opioids.
Buprenorphine is an opioid that doesn't target the the receptors that get you high and is typically used to address opiod addiction. What arguement can there be that you should have medication that is addictive and can impair your functioning over Buprenorphine?
On 10mg patch of Buprenorphine I reduced my Gabapentin from 3600mg nightly to 800mg, mutliple 'choofs' per day to none, my RLS suffering from costant to a few 10 minute bursts a few days a week. I have increased my sleep from a few broken hours (if that) a night to 8+ hours of almost solid sleep, most nights of the week.
Years of suffering and no's weakens your resolve, a lack of sleep reduces your will, drains your energy, clouds your mind. Demand Buprenorphine! Say you want to get off the other opiods and you understand this is a path out. Challenge them, be clear about your suffering! Ask if your mind would be clearer on tramadol and oxy vs Buprenorphine? Ask if they can guarentee your life is better without it than with it? Ask what would they do in your shoes.
Take back your life, demand it fight, fight, fight, you won't regret it! Good luck and power to you!
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