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Restless Legs Syndrome

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vimpat / lacosamide stopped fully working

SleeplessinNC profile image
3 Replies

the Vimpat stopped working to completely resolve my RLS. Recent MRIs showed multiple Tarlov cysts on my spine, which is possibly causing the left leg pain and movement. It is positional and separate from the RLS in both legs in my arms and body. I see a new neurosurgeon next week. I’ve had multiple spine surgeries and have a lot of hardware in me.

I’m six weeks post iron infusion, but it hasn’t improved my RLS at all yet. I was really suffering so I called the neurologist and I am taking gabapentin 300 mg at 8 PM and 600 mg at 10 PM. For the last few days, I’ve taken the additional hydrocodone 5 mg at 7 PM before my RLS and left leg pain starts, again at 11 PM, and in the middle of the night between two and three. All 5 mg.

Does anyone have any input on Vimpat/lacosamide for RLS? It seems to work for about three weeks before I need to increase the dose. I’m now up to 150 mg at 8 PM and 10 PM. I’d appreciate any input. I don’t think there are a lot of people who have tried this yet.

Second question is about the dosage and timing of the hydrocodone. It seems to be working as is, but there’s always room for improvement. I’m writing this post at 2:40 AM. Any input on improving the timing or dosage of the hydrocodone.? My neurologist is terrific, mostly up-to-date, and will prescribe pretty much anything at this point. I’m ready to go off all of this crazy dosing and timing and ask him for buprenorphine or dipyridamole to save my sanity. INSOMNIA is my major issue.

Thoughts? As always, thank you all for your input and support.

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SleeplessinNC
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Joolsg profile image
Joolsg

I'm sorry to hear that Vimpat has stopped working.It seems that your RLS is caused by spinal cord /nerve damage and from what I can see on here, most spinal cord damage cases don't respond to iron therapy.

Mine is caused by MS spinal cord scarring and iron infusions didn't help me either.

I wasted 5 years on pregabalin and Oxycontin. My RLS was still very severe.

I suspect you will respond better to a long half life opioid - Buprenorphine or methadone.

If your neurologist is willing to prescribe it, you should consider it.

After initial side effects were resolved, I have had zero problems with very low dose buprenorphine pills. I take 0.4mg and have zero RLS. I sleep at least 8 hours every night.

SleeplessinNC profile image
SleeplessinNC in reply to Joolsg

Thank you. That’s encouraging.

Merny5 profile image
Merny5

When I first started taking methadone, 10 mg, (2) 5 mg tablets I was splitting the dose. It was very similar to your schedule.This wasn’t working so I spoke to my neurologist and she suggested taking both doses together, Bam, that did it, I suggest taking both pills at once. Good luck

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