Gabapentin Not Working - Traditional Chinese Medicine, Radix Paeoniae?

[2islandboy]

Hi all. RLS was controlled by two infusions in 2023 through the Harvard Sleep Center, followed by Gabapentin 300mg to start, now up to 2400mg taken at 4pm, 6, 8 and 10. 50mg iron bisglycinate at 8pm, with vitamin C. Magnesium Glycinate 240mg mid-day. Ferritin last week 158. RLS has been getting worse for the last two months. Desperate now. Have sent message to Harvard neurologist. Waiting for reply. Cheating with Mirapex poison some nights to get some sleep. Any ideas? Switch to Pregabalin, Iron infusion.

I've been researching Traditional Chinese Medicine, TCM. In particular Radix Paeoniae. There is a lot of serious literature on the internet about the effectiveness of TCM and Radix Paeoniae in treating RLS! Here is a detailed study by the NIH in the US. Any thoughts?:

pmc.ncbi.nlm.nih.gov/articl...

[SueJohnson]

There was discussion of this 2 years ago you might want to look at healthunlocked.com/rlsuk/po...

[2islandboy in reply to SueJohnson]

Thanks Sue. You really are amazing. I will study the links. Prior to my first visit to Dr. Winkleman's office, I had studied your recommendations and followed EVERYTHING that you suggested. Including months of painful withdrawl from Mirapex!. When I was seen at Harvard, they were "shocked" by how well educated and prepared I was. You are an Angel !!

[SueJohnson]

Have you changed anything in the last 2 months? Medicines or OTC? Your lifestyle - eg exercise? What you eat?

It seems strange that it was controlled before and now isn't. You could switch to pregabalin - the equivalent would be 400 mg which can be taken all in one dose 1 to 2 hours before bedtime and increase it by 25 mg every 2 days, but somehow I doubt that will work. You may need to ask for buprenorphine. As I remember Dr Winkleman was your doctor and I am sure he would prescribe it.

[2islandboy in reply to SueJohnson]

Not much has changed, except that I have discontinued several medications, which were ok for RLS. My diet has improved considerably. I do take Diltiazem and Losartan for BP. Any thoughts on these? My bloodwork last week did not include transferrin saturation, which was strange. This may preclude an infusion.

[SueJohnson in reply to 2islandboy]

I answered this 2 months ago - see healthunlocked.com/rlsuk/po...

However since I assume you didn't start them 2 months ago, that is obviously not the reason your RLS is worse.

[2islandboy in reply to SueJohnson]

Of course, I had forgotten that I asked you this question before. I had stopped Losartan several months ago, but started taking a low dose about two months ago. Ah ha! Time to seriously take your list of safe BP meds to my cardiologist.

[2islandboy]

The detailed studies on Radix Paeoniae Alba(White Peony Root) that were sited are impressive. Not some poorly researched articles in fringe publications. I think I will give it a try. Much better than the bar of soap that I slept with before I found this Blog!

[Wordsworth99 in reply to 2islandboy]

Please let us all know if it helps you. All the best!

[Seaux]

I am so sorry that you are having such a terrible time. I know, I've been there. My neurologist finally sent me to a pain clinic and I was put on a low dose of methadone 5 mg at bedtime, and I have not had to increase the dose. It works perfectly. I have stayed on 5mg for over 2 years. Apparently RLS is regarded as a pain condition in many parts of the US so I suggest you ask your neurologist about this. If he is not interested in referring you, could you make an appointment for yourself at a pain clinic? Hope this helps.

[2islandboy in reply to Seaux]

This is helpful. My neurolgist from Harvard Sleep Center just suggested methadone, but I am reluctant to try it. Have you had any problems or side effects?

[Seaux in reply to 2islandboy]

Minor side effects; everyone is different! I have some daytime sleepiness, sometimes legs feel a bit wobbly. You may have no side effects but whatever they are, they won't be as bad as the RLS!!

[SueJohnson in reply to 2islandboy]

Nothing ventured, nothing gained and there are ways to manage most of the possible side effects. I suggest you try it as the gabapentin obviously isn't working. And if you have side effects you can't live with make a post and you will get lots of advice on how to handle them.

[2islandboy in reply to SueJohnson]

Thanks Sue

[2islandboy]

Lots of nasty side effects listed online