I have been on 100mg Tramadol and 1200mg Gabapentin for about 8 years now (after all the DA’s and augmentation). This last year getting up once or twice a night has turned into 3+ times and some very bad evenings and I believe I have reached tolerance in Tramadol. I won’t increase above 100mg as I fear augmentation (rare perhaps but not again for me!).
Dr Buchfuhrer suggested Temgesic or Oxycodone (less likely for me in England?) but my GP has asked me to take a holiday from Tramadol and upped my Gabapentin to 1800mg.
4 nights ago I dropped from 100 to 50mg Tramadol and upped the Gabapentin. It is Hell! Hardly slept and trying to walk around but fell asleep twice and bashed my head on a table.
Questions: Do I need to give Gabapentin a longer period to build up before reducing Tramadol? How long will this hell go on before this “holiday”? Are many people on Temgesic or Oxycodone in England as my GP says it is against NICE guidelines and he can’t prescribe them?
Thanks for any advice.
John
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John_naylor
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I think so John. I'm trying to move from ropinirole to gabapentin and my understanding is that it takes about 3 months to free myself of ropinirole and to reach at least 900 mg of gabapentin. I'm doing this because I think I'm augmenting through the roof. I was about to post a message asking if there is a good news story out there about success moving from ropinirole to gabapentin.
I have good news about this transition. I augmented something terrible on Ropineral. I took it while transitioning to Gabapentin. Since I did not wean myself off of Ropineral until I was at the proper dose of Gabapentin, I had no problem getting off Ropinerole. The important thing is NOT to go off Ropinerole first. Always be on your full dose of Gabapentin. There are horror stories about weaning oneself off Ropinerole, but I think that is because people tried to get off of it too fast because it does cause augmentation.
John, so sorry to read this. As you have already taken gabapentin for a while, I don't think you meed to get it built up. But I don't know of course.
I am not in the UK, but Targinact (a combination of oxycontin with naloxone) should be available and licensed. And recently, quite a few people in the UK have convinced their gp or neurologist to prescribe them Temgesic. Maybe other UK people can help, maybe even through their gp writing a letter to yours. My neurologist contacted dr B directly and was convinced enough. Hope you find relief soon.
I guess iron and diet are good? As you are experienced...
Hi John, The NICE guidelines now state that first line treatment is either a DA or gabapentin/pregabalin.
GPs are responsible if they prescribe drugs not mentioned by NICE. That means if anything goes wrong, the GP faces legal action.
If he's prescribed tramadol, he's already gone outside NICE guidelines.
Tramadol is the one opioid that causes augmentation and that would appear to be what's happened. Tramadol should be reduced very slowly and it WILL cause severe RLS because that's the main symptom of opioid withdrawal for us.
Many neurologists are now prescribing very low dose Buprenorphine as they see the immediate benefits. However, GPs can refuse. The old postcode lottery!
Prof. Chaudhuri at King's initially refused to consider Buprenorphine but when I pushed he emailed to say he would have no objections if my GP agreed. Luckily she did.
If your GP still refuses, you may have to pay to see Prof.Walker at Queen Sq in London. He does phone consultations.
He will prescribe Buprenorphine. Your GP can then prescribe on the NHS on his recommendation.
You would only need a small dose. I suggest you slowly reduce the gabapentin over about 6 months if you get Buprenorphine as there can be severe sude effects if you reduce more quickly.
Read my posts and you'll see the one about Buprenorphine. I'm on 0.2mg at 10pm and 0.2mg at 12.30am. No RLS.
People think tramadol is a weak opioid, but they forget it's also a weak anti-depressant (which is why it can sometimes lead to augmentation). Coming off of tramadol is like coming off of two medications at once. It might not seem like it, but dropping down 50 mgs at once is a big deal (especially after 8 years) and your body is not going to like it. I strongly suggest cutting pills in half and going down to 75 mgs of tramadol instead of 50 mgs. Do that for 3 or 4 days, then go down to 50 mgs for 3 or 4 days, then go down to 25 mgs for 3 or 4 days, and then go down to 12.5 mgs for 3 or 4 days... and then you should be able to be done with it without too much discomfort.
Also, to be honest, 100 mgs for 8 years is pretty good. I personally wouldn't give up on the tramadol if it was working until I'd reached 200 mgs. If you could slightly increase the tramadol dose (125 or 150) and get another 8 years out of it, I think that would be better than getting rid of it and increasing the gabapentin. Just my opinion. Maybe when your symptoms first wake you up, take an extra 25 mgs of tramadol and give it 15 minutes to kick in. That should stop any more disturbances the rest of the night... in my experience.
John, your post caught my attention because like you I’ve been on Tramadol and gabapentin for 8y. My sleep doctor recently retired and on top of that I moved to FL. My new doctor wanted me to stop tramadol and rely exclusively on Horizant which is gabapentin that is better absorbed. Over the course of 5 months I went from 150mg of Tramadol to zero. It was pure hell!!!I’m back on Tramadol at 100mg and I feel somewhat better.
But to answer your question on whether you need to give gabapentin more time I unequivocally say NO. I gave gabapentin 5 mo and it absolutely did nothing for me.
Gabapentin may work for mild cases of RLS but for more serious ones definitely NOT
Wow! 8 years on 100mg Tramadol and your doctor cuts it in half right off the bat?!! You should sue your doctor for neglect, pain and suffering. Coming off opioids, any opioids, especially when you have RLS should be a very slow process e.g.) 10mg every 10 days say. Here’s a study to show your doctor.
I’m sorry you’re having to go through this but not your fault.
What I would suggest is beginning Pregabalin (may with Gabapentin as well) which has 2 benefits 1) Pregabalin has anti-anxiety properties to assist with withdrawal symptoms and 2) it, at least in my and many other’s experiences, can be a decent treatment for RLS & PLMD.
You deserve better care. Best wishes.
50% of people withdrawing from opioids develop RLS.
Many thanks for your responses. After the hell of reducing from 100 to 50mg Tramadol and with our holidays coming up (3 weeks in a Motorhome with no room for Nightwalking!) my GP agreed we should leave the “Tramadol holiday” until I return. I will give it another go but more slowly and will need smaller Tramadol pills as opposed to 50mg capsules which I cannot cut in half. Any further problems and I will ask to see a specialist which will probably involve a trip to London. For now I am coping in the Motorhome. Just!
My iron results came through with Ferritin now up to 113 so I will stick with the alternate nights of orange juice and Ferrous Bisglycinate and await some reduction in RLS symptoms……
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