refractory RLS DAWS

[Aujamw]

After preciously augmenting from 3 mg of pramipexole after around 6 months of reducing - I am now off. The last dose decrease was the worst and I have been 3 days into being completely off. I am having increased symptoms which I can control during the day but severe insomnia and inability to stay asleep if I can sleep at all. I am taking 1500-1800 mg Gabepentin. Because my neurologist doesn't seem to understand my refractory RLS he has referred me to a Mayo Clinic. I am hopeful o can get an appointment very soon. I am suffering weakness and severe fatigue as well. I feel I have so many issues that need addressed I am hoping they have a multidisciplinary approach. If and when I get an appointment-- my current neurologist doesn't seem to want to be bothered.

[ChrisColumbus]

I guess that you've been previously steered to the Mayo algorithm (linked below) and take Gabapentin in multiple doses not exceeding 600mg at a time, at least 2 hours apart?

mayoclinicproceedings.org/a...

I'm sure that others on here who have been through what you have will be able to give more practical support

[Aujamw in reply to ChrisColumbus]

yes that is correct multiple doses at least 2 hours apart

[ChrisColumbus in reply to Aujamw]

Well done on getting off the pramipexole and here's hoping that you get more help soon!

[SueJohnson]

It will take a few weeks for the symptoms to settle. This is normal. Can you get a low dose opioid to help out temporarily?

[Aujamw]

no unfortunately-- I have a neurologist that doesn't believe in DAWS. I got thr look of shame at my last neurology appointment then I hadn't come off of the meds before now. So doing the best I can.

[SueJohnson in reply to Aujamw]

What about Kratom?

[Aujamw in reply to SueJohnson]

I mentioned that to my husband who is hesitant to order that type of product online. Thanks for the suggestion though.

[Merny5]

Have you tried THC gummies? It’s legal in many states. I started taking them and it definitely helps with sleep. My dose has not increased in 2 years.

BTW, it sounds like you may need a new neurologist. This person doesn’t seem to have a clue

[Aujamw in reply to Merny5]

oh yeah spot on about my neurologist. That is why I am going to Mayo Clinic but I also have a referral to another neurologist in another health system in the works. . I wish I could fire him! You don't know how many things this office has screwed up in addition to not getting my referral to Mayo until around a month after my last visit! The added stress this has caused is not good for me! I am really suffering!