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I'm here to help my mom with her RLS. Please help

Posted: Wed Jun 07, 2023 7:20 pm
by Katkirsch
I am here to learn and get help for my mom. She has augmentation RLS. She has it day and night. She hasn't slept well in weeks. She is depressed, feels helpless, cries and complains daily. Wants to be taken to ER to get help. She lives in an assisted living facility.
She was on a few RLS meds over the last 10 yrs. Most recently Ropinirole 1 MG 2 Tablets at night. She was taken off that 2 wks ago. Then went on gabapentin 200mg but went off that because it made her too out of it. She is also slowly weaning off problem drugs that exacerbate RLS such as Celexa(antidepressant), antihistamines, Melatonin.
She is on Trazodone for anxiety/depression and she has Congestive Heart Failure and A-fib and Hypertension, so she takes meds for that. She takes 2 diuretics due to CHF. She is 88 yo. Her regular doctor is referring her to a neurologist but the wait to get in may be too long. Thanks for your help and suggestions!

Re: I'm here to help my mom with her RLS. Please help

Posted: Sat Jun 10, 2023 12:46 am
by debbluebird
I'm sorry to hear what both of you are going through.

She probably needs an opioid. In some states they are getting harder to get. Oxycodone can help, but it's not always the best choice. Then there are others not as strong, like codeine and tramadol. Some people here take those.

I used to take methadone, but in my state, I could no longer get it. I now take buprenorphine. I get it in the film form. It's easier to take smaller amounts without feeling drugged.

I was told that in the older population, buprenorphine was better than methadone.

Sometimes people have to take a med awhile for their bodies to adjust. That can be true with gabapentin and opioids. There is also Lyrica, that works for some people.

There are of course other meds besides opioids, if she hasn't tried too many other things first.

Neurologists don't always know that much about RLS. In fact, a lot of Doctors don't know that much. They think they do. Through my journey, I've educated some of them.

I feel for your Monther and you. It's hard. And then since she's not getting sleep, it just makes it all bad. I've been there more than once. I'm 72 and have had this since 1990.

Re: I'm here to help my mom with her RLS. Please help

Posted: Sat Jun 10, 2023 11:58 am
by Polar Bear
You mention that your mother was taking ropinerole 1mg x 2 tablets at night. 2 mg was a very high dose. You say that she was taken off this 2 weeks ago. Did she come off it cold turkey or was she weaned off it. If it was cold turkey it is a reflection of how little her doctor knows about treating augmentation.
Gabapentin 200mg would not have been sufficient to deal with the exacerbated rls symptoms coming off the ropinerole and a prescription for an opioid would have helped.
How is your mother's doctor treating her symptoms while she waits to see the neurologist. I hope this neurologist is well versed in the treatment of rls/augmentation. Not all are.