DAs addicting?: I am currently not on... - Restless Legs Syn...

Restless Legs Syndrome

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DAs addicting?

Yakester
Yakester

I am currently not on anything for RLS. Still struggling with withdrawal from pramipexole. It’s been going on for months. I went to a sleep specialist who’s only plan would include a DA. I told him I cannot take DAs since I get terrible side effects, both while on the drug and after withdrawal. He does not believe DAs are addictive. If they are not then why is withdrawal so difficult? So right now I am trying oxycodone (prescribed by my GP) to take at bedtime. It only lasts until about 2:00 a.m. I am doing research on marijuana. My life is pretty miserable right now with the depression and anxiety and not enough sleep. Went through this 7 years ago but didn’t know what was causing it. I just want to feel normal again. The sleep specialist did talk me into trying ropinerol. I took it for 3 nights. It caused hot sweats and insomnia. I quit taking it.

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Isn’t that Requip? Another DA! Yikes!

Indeed! Ropinerole is the generic name, Requip the brand name.

A suggestion: I am on oxycodon as well. Initially my gp gave me te ‘normal’ one, and for me too it didn’t last long enough. And gabe me a terrible hangover feeling the next day. Then - upon advice from Madlegs - I asked for the extended release version of oxycodon (oxycontin, or, in my case Targinact). You have to take it a bit earlier, and for me it lastst longer and without the brusque aftereffects the next morning.

I too had a ghastly time coming off the DAs. It took 4 months but I felt so much better when it was done. People on this forum told me it can take a year. I used Tramadol to help me. There is an extended release version which might work better for you.

Good luck.

It is the opinion of Doctor Patricia Nirenberg of NYU that DAs cause true addiction, and that coming off them is both extremely difficult and fraught with danger for some.

Her experience is with Parkinson's, but no doubt one can extrapolate from that, as many of us know so well.

Dr NIrenberg is the world expert on this issue, and she first published this information almost a decade ago. Show this to your neurologist, he/she is woefully out of date.

sciencedaily.com/releases/2...

researchgate.net/publicatio...

Gabapentin or Pregablin are alternatives to DA’s and Tramadol, an opiate, very effective. I am currently without RLS and sleeping like a baby on 100mg Tramadol 1200mg Gabapentin. Don’t know where to go next but happy for the moment.

Lilmo1
Lilmo1 in reply to John_naylor

Ive been on both Gabapentin and Pregablin not for rls it was for a nerve pain which shows its nasty pain in a tooth similar to toothach its called Fantom tooth pain as tgeres nothing wrong with the teeth it shows up in i know that now after 2 extractions to perfectly good teeth but i was 100% sure it was toothache i had. I also had a hard time weaning off them at seperate times i was on one the the other neither worked as i still have it i had to do my own research to find out what the heck it was AO Atypical Ondontalgia. Anyway i cant say what them 2 meds do for RLS trial and error at times it seems. I really don't like to say that 50mg Ampitripyline has put my RLS to bed all gone because I'm told its the med to avoid but if I'd not have tried it I'd still be climbing the walls.

I have had almost ever symptom listed for DAWS. It messed me up pretty good. Still struggling. And still having terrible RLS.

Interesting that doctors don’t find the DA drugs addicting. They obviously have not gone through the torment of getting off them. Several months ago I asked my pharmacist what would be the best way to get off the Recuip. He said “just stop taking it”. That’s when I figured out that these professionals have no clue. Unless you have walked in the shoes of someone with RLS and or tried to get off those awful DA meds then you really don’t know the torment. Once again I felt total indifference first from my sleep specialist then from my pharmacist about my pain and suffering

Yakester
Yakester in reply to mmb8083

I totally agree. My sleep doctor has no clue about DA withdrawal. I don’t think my pharmacist does either.

Hi, Yakester, a couple of things:

1. Have you had your iron (ferritin) levels checked, and if low (below 100), have you tried oral or infusion iron therapy?

2. Have you tried any of the alpha-2-delta drugs like gabapentin or pregabalin? Many here (myself included) have fond them quite helpful.

3. I see you're already trying an opioid and found it helpful, but it doesn't last long enough. Lotte mentions OxyContin/Targinact as one longer-lasting option. Another is methadone, which in addition to being longer-lasting has a couple of features unique amoung the opioids: it has a lower potential for addiction and people don't develop as much tolerance as other opioids. Tolerance buildup requires increasing doses to achieve the same effect. In one long-term study, RLS patients had good success with methadone, with an average dosage increase of only 10% over ten years.

This important recent paper discusses much of this in detail, and might be something you could bring in to your doctor:

mayoclinicproceedings.org/a...

Good luck! Don't give up. One or more of these alternatives to DAs may work for you. You will find relief yet if you persist. By the way, I'm glad to hear you had the sense to reject ropinerole, given your negative experience with pramipexole. The doctor who prescribed ropinerole clearly doesn't know much about RLS.

This doctor is a sleep specialist. He truly does not believe me about DAWS. I have sent him information including studies. My RLS was so bad last week that I agreed to a treatment of low dose pramipexole along with hydrocodone. Luckily I came to my senses and decided not to do this. So right now I’m using cream with cbd and thc that I rub on the Bottom feet a few times in the evening. And I take OxyCodone. I’ve had a good week. Hope it lasts.

Please tell me what DA stands for

Yakester
Yakester in reply to FLAME43

Dopamine agonist

Thank you, would that be Prempexola, thank you for reply i know i sound ill informed, i suffer so much i just want to know whatever i can

yes- pramipexole ( brand name mirapex) and Ropinirole ( brand name requip & Adartrel) are dopamine Agonists.

Hello - Can you explain with regard to DA`s please.

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