Botox Injections to relieve RLS

[vikkitennis]

Viewers,

I am contemplating Botox injections to relieve the RLS spasms at night.

Has any of the members tried this method? It was mentioned to me at one time at Barrow Institute in Phoenix by a neurologist, but it was not carried through. I asked my current neurologist at Banner Research Institute Movement Disorder, and at this time, he dismissed it. I can only tolerate a small dose of methadone, due to GI problems, and after 25 + years with RLS, occurring nightly, I am intrigued if this method works. I researched it, and there is some promise with studies.

Thoughts?

[Joolsg]

sciencedirect.com/science/a...

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

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

A few studies on botox show interesting results.

If you can't tolerate methadone, it's worth trying if you can find a doctor familiar with the process.

Have you tried iron therapy/infusions?

[vikkitennis in reply to Joolsg]

Thank you for your reply and forwards.

I had an iron infusion in 8/2021, as my reading was borderline. It is acceptable today, and I do not need iron or an infusion. The methadone began at 5 mg 8 months ago, and slowly crept up to 20 mg. The panic/anxiety attacks were too much, and I regressed down slowly to 7.5 mg. I have been at this dose since mid November 2023. I was to have a teleconference with the doctor last week, but it didn't happen. He is very good with the patient portal, however. I cannot recall the exact vocabulary, but I am at the extreme level, have sleep about 4-5 hours a night, and productive days.

[Joolsg in reply to vikkitennis]

Interesting. I am the same with opioids. I always develop severe anxiety/panic attacks about 3 weeks after starting them.I emailed Dr Buchfuhrer about it ( UK doctors I have encountered so far know zero about RLS or the meds) & he suggested asking for a sedating med to counteract the anxiety.

I started low dose pregabalin and it worked almost instantly.

I still use a very low dose. It stopped all the panic attacks and also makes me sleepy.

Perhaps you can ask your doctor for a med to reduce the anxiety. Then, you might be able to use a dose of methadone (or Buprenorphine) that controls all the RLS.

Good luck in your tele appointment.

[vikkitennis in reply to Joolsg]

thank you for your letter and advice. When lowering the methadone dose, the anxiety attacks have diminished, and I am reluctant to add another medication to the small list I take currently. I attempted the Buprenorphine in December, and the spasms were off the charts. when confronting the neurologist less than a week later, he mentioned the patch was not the correct method, and I should have had the tablets. That wasn't prescribed, as I informed him to continue prescribing methadone.

As of now, the tele appointment is on hold. The staff is reduced, as of last year, with his patient load increased. I intend to contact them this week and schedule an appointment in the future. Thank you for your help.

[Joolsg in reply to vikkitennis]

Yes, the Buprenorphine patch is more useful for continuous pain. For RLS, pills are better. Here in the UK Buprenorphine pills start at 0.2mg. In the USA, the smallest dose is 2mg.I know you don't want to add more meds, but taking pregabalin for a short time, 4 to 5 weeks then reducing slowly, might solve the panic attacks.

I use a tiny 12.5mg dose at night and will eventually reduce to zero. If the panic attacks restart, I will reintroduce a small dose.

[SueJohnson]

Joolsg has already referred you to the studies I was going to. To sum it up Botox injections at the applied dose can reduce the severity of symptoms in RLS up to 6 weeks. Moreover, the quality of life of the RLS patient can be improved for up to 6 weeks post-injection, and pain and discomfort diminished for 4 weeks." according to a placebo controlled study. Injections were into the tibialis anterior, gastrocnemius, and hamstring muscle each side.

[vikkitennis]

Thanks Sue, I will look at the references from Joolsg.

[wantokporo]

Are they any help with PLMD?

[vikkitennis]

neurologist mentioned with the leg spasms, they are not PLMD, however, I feel it is, or why would I experience the leg "jerks" at night.

[Rayme]

Thanks for your post. I hope you find out more and I'd be very interested to hear if you go ahead. I started methadone early January and am on 5mg. I can tell the RL is creeping in a bit the last few days. My baseline is very severe so can imagine having to up the dose, as you did. But like you, I don't think I handle side effects well. Do keep us posted as to what is next advised and all the best for restful nights!

[vikkitennis in reply to Rayme]

thank you for the good and kind words. At the 7.5 methadone dose, most nights are a 5/10, yet one or two are beyond, with a 8/10, 10 being severe. I will keep the forum posted on any developments with changes.