Pramipexole withdrawal and Temgesic update

[puzzler1]

Hi to everyone. It's now been 4 months since I took any pramipexole and I'm currently taking 4 x 200mcg Temgesic each evening. I now know that I had augmented badly on the prami and the great news is that my daytime symptoms have virtually stopped and the awful RLS in my arms has virtually gone. It's an incredible relief and if I hadn't found this forum, I'd still be struggling on.

The trouble is I'm still not sleeping well and I'm having to get up 4 or 5 times through the night to pace and stretch. I've had to increase the temgesic to 4 tablets at about 9.30pm each night. The increase from 3 to 4 tablets made no noticeable difference. When I first started taking the Temgesic I was still taking the Prami and suffering badly with the withdrawal. The improvement was fantastic. But as the prami dose got lower and lower, the temgesic worked less and less and it's never regained it's full power. My consultant accepted my request to increase my temgesic from 2 to 3 tablets through the withdrawal. When I realised it wasn't going to control my nights, I contacted Dr B and he suggested an increase to 4 temgesic and if that didn't work, then to increase to 5. The increase to 4 tablets didn't seem to make much difference and now I'm reluctant to increase to 5. My sleep is still interrupted but I am able to fall asleep in between the breakthrough, but I'm pretty exhausted through the day.

It's been like this for 2 - 3 months now. I keep hoping things will improve but it's very discouraging to be stuck like this and thinking my bad nights will just go on and on. I don't know if I should have a holiday from the Temgesic (difficult to tell how that might go) or try CBD oil or kratom.

I've applied for the Project twenty21 study but what with my other health issues of atrial frib and blood thinners, I'm not sure what to try.

One thing I do know, if you've taken DAs for a long time and have bad daytime RLS symptoms, you've probably suffered augmentation and you'll find considerable daytime relief if you can slowly wean yourself off.

My thanks to the forum for telling me that!

[rls-insomniac]

Hi Puzzler,

I'm sorry to hear your difficulties sleeping. It must be frustrating for you, especially as you have been through hell getting off pramipexole. Although my Temgesic dose is smaller than yours, I split my doses into two. I take one dose early evening so it's already in my system when I take the second dose, around an hour to an hour and half before I go to bed. But, I am still taking Pregabalin alongside the Temgesic. I wonder if by splitting your doses whether this might help with the daytime tiredness you are experiencing. Maybe this is something you could try perhaps. Also, I think that Shumbah takes between 1-2mgs of Temgesic. I believe she only takes 2mgs if she's been exercising. I recall that she splits her doses as well. Maybe you could look up her postings for more detail.

I do hope that you find a solution as it's thanks to your help that I managed to persuade my consultant to prescribe me Temgesic.

All the best and I wish you well. x

[Hidden]

On the positive side, I'm so glad to hear that, ( apart from the insomnia), you've got your life back.

Like you I was also amazed how bad my augmentation had been when it disappeared.

I think Involuntarydancer has some good ideas.

Shumbah is an expert on buprenorphine (temgesic). You can go to her profile page and send her a private message. I don't think she'll mind.

follow this link

healthunlocked.com/user/Shu...

[Josana13 in reply to Hidden]

I worry about the damage to my body from not sleeping. I am nauseated most of the time. Dizzy and feel really strange. Sometimes when I'm up at night I hear voices and feel people in my house. I talk to them also. At the time that I hear the voices, I know that I am hallucinating, so it doesn't scare me. This doesn't happen often. When I go to bed and if I fall asleep for a few minutes, I wake up shaking and frozen and can't seem to warm up. I can handle all of this as long as I know that I am not doing permanent damage to my body. Thank you

[Hidden in reply to Josana13]

Hi - see my response to your recent post.

[Henshaw241241]

Hi I was on pramipexole for a long time had a job to get off them then I went to see a neurologist where she checked me all over then she put me on pregabalin 75 my 1 at 6 pm and 1 at 9 pm the best thing what ever happened I had RLS for years couldn't sleep climbing the walls very bad you take care I hope this helps HENSHAW 241241

[RLSofManyYears]

I've been taking Temgesic for about 4 months now. At first, on one 200mcg tablet, the difference in sleep was dramatic. However I now need 1.5 to 2 tablets to get some sleep. I'm up about 1-3 times per night and I get a headache in the morning with 2 tablets. I take 1 tablet about 1.5 hours before going to bed and the balance when I go to bed. As I do not want to take more than 2 tablets then my expectation is that I will need to revert to Ropinirole until the Temgesic is flushed out of my system (I'm not sure how long that is - any ideas, anyone?). Then I would switch back to the Temgesic. That's the plan anyway!

I do hope things work out for you.

[Jules1953]

Hi Puzzler1, we have been on a similar journey with suffering from augmentation as a result of being on Pramipexole for many years and then using Temgesic. I am a few months ahead of you as far as weaning off the Pramipexole and starting the Temgesic goes.From my experience, it does take a very long time for the effects of the Pramipexole to get out of your system.

I took Pramipexole for approx 10years and was up to 3mgs per night. It took me 2years to slowly wean off Sifrol (Pramipexole).

Even when I finally stopped the Pramipexole, I felt like it took many many months to get over the effects. It took a long time for my brain to adjust.

I have never taken more than 2 or 3 Temgesic tablets under my tongue each evening.

If you need to increase the number of Temgesic up to 5 tablets per night for a period of time, I would not be concerned. You will find that as time goes on and the longer the Pramipexole is out of your body, I feel that you will be able to reduce the amount of Temgesic. Kind regards Julie McGowan from Western Australia