Augmentation from domaine agnostics - Restless Legs Syn...

Restless Legs Syndrome

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Augmentation from domaine agnostics

lenpharleyd profile image
13 Replies

I have been on dopamine agonists for 7 years and NEUPRO for the last 5, starting at 2mg and progressing to 4mg and experienced serious augmentation starting late 2017. I am being treated by a sleep specialist at USF and she has me on a plan to wean off them.

I have decreased NEUPRO gradually to 1 mg, currently to .5mg, then to 0mg tomorrow all the while increasing GABAPENTIN with every decrease of NEUPRO. 2000mg when at 1mg and now 2400mg at .5mg, then 2800mg at 0mg.

The augmentation is so severe I will never take another dopamine agonists again!

Weaning off is pure HELL!

The first 6 nights were pure torture! The next 2 not so bad. Tonight is my last night on .5mg NEUPRO then zero and off to see the USF doctor tomorrow.

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lenpharleyd
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13 Replies

It would have been better if you had been prescribed a pain med like Tramadol while you were weaning, Tramadol would have helped with the withdrawals. Its what most take when weaning from augmentation. But glad you have almost got there now. :)

lenpharleyd profile image
lenpharleyd in reply to

Thank you very much Elisse!

I failed to mention that I did have help with Hydrocodone 5-325 when needed that I had from a previous surgery that my sleep doctor had no issue with me taking.

Madlegs1 profile image
Madlegs1

All the very best for your next few weeks. It might be worth looking at this site ( especially the last few pages of Qs and Answers)

rlshelp.org

Good luck.

You can use the search function to specifically check out gabapentin issues, especially at those high doses.

lenpharleyd profile image
lenpharleyd in reply toMadlegs1

Thank you Madlegs1!

I will research the gabapentin issues but I don't think I have had any yet.

Love the screen name! Very appropriate with this condition!

Jrskyhook32 profile image
Jrskyhook32

Wow Good luck. I’m down to three plus 5mg methadone and currently walking the house at 2:12 am. So worried I won’t be able to do this.

lenpharleyd profile image
lenpharleyd in reply toJrskyhook32

You can do it! There were many times when I was tempted to just keep using the patch but so glad I resisted and kept going thru with weaning off. It's very tough but you can do it!

Joolsg profile image
Joolsg

Well done for getting this far.

Withdrawal nearly killed me- I went through it in 2016 but I took tramadol, Kratom and cannabis to help with the worst of withdrawal.

The Gabapentin won’t make any difference until about 2/3 weeks after the last dose of DA.

Those are very high doses of Gabapentin- so do look out for side effects like dizziness and diarrhoea- especially when you are so sleep deprived during withdrawal.

I wish you strength in getting through this last stage.

You willing feel like you cannot make it, but you can.

Stay strong

lenpharleyd profile image
lenpharleyd in reply toJoolsg

Thank you joolsg!

lenpharleyd profile image
lenpharleyd

Thank you all for your replies and support! I wouldn't have even known about augmentation if it wasn't for this site and the information from you wonderful people!!!

I did fail to mention that, when really needed, I have had help with Hydrocodone 5-325 from a previous surgery that my current sleep doctor had no problem with me using.

My last night on Neupro .5mg started out very bad, even with the Gabapentin 2400mg but after a couple of bad hours I took 2 Hydrocodone and after they kicked in I slept for 8 hours! Today, off to my doctor at USF to report and see what she has in store for me now. I have no idea how bad it will be without any Neupro at all. I will keep you posted.

And a big THANK YOU to this site and to those that have given me valuable information and support!!!!

Jrskyhook32 profile image
Jrskyhook32 in reply tolenpharleyd

Go get em

Madlegs1 profile image
Madlegs1 in reply tolenpharleyd

Opiates are the tried and tested ultimate relief for rls. If you have a compliant prescriber, then that is the way to go.

lenpharleyd profile image
lenpharleyd in reply toMadlegs1

My sleep specialist, who is wonderful and understands RLS, has prescribed 5mg methadone in addition to the gabapentin that started yesterday. She wants to see how this affects me and how to make adjustments in 2 weeks. My first night on methadone and I woke up with my uvula swollen.

Dcb55 profile image
Dcb55

Ultimately hydrocodone is the only thing that works for me. I’ve been through the rest and the augmentation and the pacing and frustration and nothing stuck. Hydrocodone works like a charm with the fewest sideffects. I take a lower dose than your 10mgs and it works 85% of the time. Once in a while I need another 1/2 tablet. Unfortunately, instead of knocking me out like a decent opiate should do, it turns me into Chatty Cathy and I am not buzzed but completely relaxed, no leg twitches, and wide awake and ready to have a nice long conversation. I have been prescribed up to 4 mgs clonazepam to sleep (I don’t take that much) and it works but makes me groggy the next day. The opiate-induced insomnia is a pain but it’s a real thing. I wish I could just take the hydrocodone and fall asleep. Thank God I found a neurologist who specializes in movement disorders as well as sleep and is willing to prescribe. I have to travel 4 hours to get to him but it’s worth it.

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