Temgesic hot flushes and difficult choices

[puzzler1]

Sorry I haven't been on the forum lately but my RLS has continued to be bad every day and I haven't had anything positive to say.

I stopped taking pramipexole about 15 months ago and started taking Temgesic 18 months ago and started taking gabapentin 11 months ago. Currently I'm taking 1x200 Temgesic and 600 or 700mg of gabapentin each evening. The trouble is, my RLS is really bad and getting worse. My daytime symptoms are not bad if I keep active (can't put my feet up or snooze) but my evening and night symptoms are the same as my augmentation/withdrawal from Prami. I have it badly in my arms and sometimes my arms are worse than my legs. Occasionally when I'm at my wits end at night I will take 2x100mg Madopar to get some relief (but only once or twice a month because I'm worried about augmenting on it). All my nights are badly disturbed and I am having to get up 4, 5 and 6 times a night to relieve the hellish torture. It's as if I'm augmenting and withdrawing all over again. And the sleep deprivation is killing me.

I don't really understand why everything is so bad for me, as I'm taking good medication although I suffer with side effects from both. If I take more than 700mg of Gabapentin I'm very zonked out and wobbly on my feet in the night and I just feel totally wiped out the next day. With the temgesic I suffer with terrible hot flushes which almost make me collapse.

My consultant is sympathetic but has suggested dispersible madopar for short term relief or rotating temgesic with small doses of pramipexole. She's asked me if I have any suggestions for a way forward but to be honest I seem to be trapped. I did consider coming off the temgesic and relying on the gabapentin but when I recently reduced from 1x 200 to half a tablet, I had even worse symptoms and had to give up after a week and return to a whole tablet again.

I was interested in Nettles68 advice from DrB about alternating prami and buprenorphine but I don't see how I could just stop taking the temgesic and start the prami, without chronic withdrawal.

So, I'm thinking that less gabapentin and more temgesic might be my best approach - except for the typical opioid side effects. I have seen a recent post suggesting 5mg of Olanzapine can help with insomnia.

I would really appreciate help with advice regarding the best medication to reduce the hot flushes. And also any other suggestions I can pass on to my consultant. She seems open to ideas. I have suggested Methodone but she's not keen!

Thanks again to all you wonderful contributors.

[Joolsg]

That is very upsetting.For the hot flushes, try loratedine or cetirizine anti histamines. I take one a day and it really helps the opioid flushes and sweats.

I did not get on with gabapentin or pregabalin AT ALL and posted years back that I thought I was suffering augmentation on pregabalin.

All experts dispute this BUT there is a study from 2015 comparing pregabalin and Pramipexole and there were some who augmented on pregabalin.

So as you're on a very low dose of Buprenorphine ( temgesic) I would suggest slowly reducing the gabapentin over at least 3 months and increase the temgesic to 0.4.mg

Try 0.2mg around 9pm and 0.2mg just before bed.

If you get opioid insomnia you could try medical cannabis, an Indica oil with THC.

Dr Buchfuhrer says that gabapentin and pregabalin often do not help people who have augmented on Ropinirole and Pramipexole.

I really hope reducing gabapentin and upping temgesic helps BUT avoid any dopaminergic drugs like Madopar as they will just over excite your D2 receptors and prolong the agony.

[puzzler1]

That's great Jules, and very interesting. You're a star!

[bedith6]

Hello Puzzler1. I am having similar problems and didn’t know what to do so emailed Dr B. He kindly replied very quickly and said that the dose of Temgesic I was taking (2 x200mcg) was very low and to titrate up by half tablets until my symptoms were relieved. He said on average his patients were on 450mcg daily and very severe symptoms could go up even more. It would appear therefore that you are not taking nearly enough yet to reduce your symptoms so I would stop the Gabapentin and concentrate on titrating up the Temgesic slowly until you find relief I am also hoping for permission to do this from my consultant otherwise I think I really will go crazy. The other med I have used but have now weaned off was Tramadol. Maybe we should compare results. Good luck to you

[puzzler1 in reply to bedith6]

Hello bedith. Thanks for your reply. I have taken larger doses of temgesic in the past but found the hot flushes became unbearable so I moved towards gabapentin instead, but with poor results. I'm going to try upping the temgesic again and take the antihistamines recommended by Julesg to reduce the hot flushes.Luckily, I have a sympathetic doctor who will increase the dosage without a problem. I say this so you can pressure your doctor.

I'll let you know how I get on.

Good luck.

[bedith6 in reply to puzzler1]

Thanks for your reply. I have decided to write the neurologist a letter as I can’t reach him by phone until June 20th. I hope to be able to convince him that my RLS is so severe I still have it day and night really badly with no let up despite two Temgesic tablets that I need a much higher dose. Please let me know how you get on, because it was because of your original posts that I decided to try for Temgesic. Best Wishes for peaceful legs.