I have tried most of the drugs available for RLS over the years- including different opioids.
I have been taking .200mc Temgesic with 0.25 Zanax every night for over a year. This has been fairly successful- usually having one or two RLS episodes a night and some insomnia. I lie in bed with my heart pounding and my body buzzing . Hence the Zanax.
Lately I have had to increase my dose of Temgesic by a quarter. This is a very small dose but gosh what a difference! Permanently feeling sick and cannot get to sleep. I have tried sleep Aps, meditation and increasing my Zanax dose by a quarter but nothing helps. I am feeling rather desperate.
I tried a drug combination for about 3 weeks. I had half a Temgesic tablet and re introduced 0.25 Ropinirole with the Zanax and it worked pretty well. Sleep improved and legs were under control. The trouble is after a couple of weeks I felt some RLS in the afternoon which is unusual (augmentation??) so I stopped the combination and now I am unable to sleep.
I have a great Dr who will prescribe whatever is necessary.
I am thinking of going back to the combination again and trying my luck.
Any suggestions are most welcome.
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Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS. Otherwise, I am sorry but I don't have any suggestions for your problem.
Thanks Sue. had an infusion a couple of years ago and levels remained high - 285. Unfortunately not one of those people whose situation is improved by additional iron.
Starting Ropinirole again will fire up the D1 receptors and start the augmentation process again so throw away the Ropinirole so you are NOT tempted to restart.O.2mg temgesic is extremely low. It didn't stop my RLS but 0.4mg stops it completely.
The racing heart and nausea are common side effects.
You can ask your doctor for Zofran but in the UK it can only be issued by hospitals. Try Qwells sea sickness tablets OR medical cannabis oil with THC.
I had extreme nausea for 7 days when I started Buprenorphine ( temgesic) and I remembered chemo patients use cannabis for Nausea. I took cannabis every night for a week then stopped and the nausea had gone.
The racing heart will settle but you can take a RLS safe anti histamine like Clarityn or loratedine and I found that reduced the racing heart.
I also added 25mg pregabalin, a sedating drug, and that also helped the racing heart and stopped the anxiety caused by Buprenorphine.
I would suggest binning the Ropinirole, asking doctor for 400mcg temgesic at night and taper up slowly over a few days. Add an anti histamine and get qwells/zofran/medical cannabis for nausea. Try safe, non sedating antihistamines for the heart rate and 25-50mg pregabalin also for the HR and any opioid induced anxiety.
Thanks Jools for your reply. I do not think you can get the medical cannabis oil with THC in Australia. The racing heart has not settled after a year, so I will try your other suggestions particularly the low dose pregabalin idea.
Hi, I too find that buprenorphine- I use the patches (Norspan 15mcg) makes me alert and I cannot sleep soundly. My sleep was very shallow and I was awake all night at times. It was a huge improvement thought to previously as I could still stay in bed and rest. My solution has been to add gabapentin 400 mg (titrated up till I found a minimum dose for maximum sleep) to the mix and that has helped deepen the sleep and now I even dream! It's worth a try perhaps. Gabapentin is in the same family as pregabalin that Jools mentions, but I don't get side effects from it as I do with Lyrica (pregabalin).
I would second the NO DAs message and I wonder if you're buzzing is being triggered by a food. I find the same can happen with me if I eat BBQ chicken and cheese, both high in glutamate or in fact any foods high in glutamate. We already tend to have high levels of glutamate in our brain/body as a sufferer of RLS so perhaps this is something to look at. Good luck.
Thanks so much for your reply. It seems we we who suffer hyper- alertness because of opioids are in the minority. I am seeing my dr on Monday and will discuss the gabapentin. I tried both this and pregabalin (Lyrica) and had terrible side effects - just like I do with everything I take. I have been on the Temgesic for well over a year and the insomnia just gets worse. I am pretty desperate which is why I am trying a combination of drugs which includes the Ropinirole - 0.25. I took Ropinirole for 10 years and did not suffer too much in the way of Augmentation, as I kept the dose at 1mg. I am sick of listening to meditation apps at 1am, 2.30 am and being fully awake at 4.30 am. The only thing that calms me and allows sleep is the Alprazalam (Zanax) and now I am up to 0.5 mg. which worries me greatly as it is addictive and I have read that it can cause memory loss/dementia. I am vegetarian and eat really well but will review my intake for glutamate levels.
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