still nothing working

[Dark71]

So it’s been about 5 or 6 weeks I’ve been off of ropinarole. I’m only taking 3/300mg tablets of horizont, that’s it!

I started using a new neurologist who prescribed me hydrocodone. This drug does not help restless leg in fact all it does is make one sleepy, especially during the day. So I’m not taking that…..

Anyway, don’t know where to turn next! ? Heavy duty medications, pot, gummies can work on occasion but once I be taken any of it for more than a day or two they don’t have any effect. Currently I’m going to bed around 10, lie awake for hours and then the restless leg is kicking in around 2 or 3. It’s hard to keep going…. So sleepy!

Any helpful info would be great, thanks….

[SueJohnson]

You might want to ask for buprenorphine instead of the hydrocodone.

[Dark71 in reply to SueJohnson]

Hi Sue,

Just one tablet a night, (10mg mixed with 325mg acetaminophen) They won’t prescribe anything more. Also, I’m in the USA and I don’t think the doctors will prescribe buprenorphine.

[Hidden in reply to Dark71]

Hi Dark, I think you should read the below post and think whether Baz33’s protocol would work for you. healthunlocked.com/rlsuk/po....

[SueJohnson in reply to Dark71]

It's no wonder it's not helping. The usual effective dose is 20 to 45 mg according to the Mayo Clinic Updated Algorithm for RLS at Https://mayoclinicproceedings.org/a... You might want to print out the section on opioids and show it to your doctor. If this still doesn't work you may need to switch doctors. I gave you the name of the Quality Care Center in Houston and the names of the doctors there, all of who are well qualified and I'm sure will prescribe the buprenorphine you need. I specifically recommend Dr William G. Ondo. And he does telehealth appointments.

[Joolsg]

Usually, 600mg of Horizant, taken at night is effective at controlling RLS.However, you only stopped Ropinirole 6 weeks ago and withdrawal symptoms can play up for months.

If RLS is starting at 2/3 and you have classic insomnia and can't sleep between 10 pm. and 2 am, you will need to reconsider your meds.

Have you raised serum ferritin above 100, preferably 200? Have you checked for trigger meds like anti depressants and anti histamines?

If your serum ferritin levels are above 200 & you're not on trigger meds, you may have to move onto low dose opioids. If pregabalin, gabapentin and horizant don't work, your RLS is refractory and low dose opioids are the next step as per the Mayo Clinic Algorithm.

Hydrocodone is a low dose opioid but you say it's not helping the RLS and making you sleepy in the day.

What dose are you taking and when?

I suspect you're sleepy in the day because you're not sleeping at night. Medical cannabis taken around 9pm might help you sleep from 10pm for a few hours.

As SueJohnson suggests, you could try switching to Buprenorphine or methadone, both with a long half life, and there are several doctors and Centres of Excellence in the USA who will prescribe these drugs.

Dr Andy Berkowski operates out of Ohio and Florida, Dr Buchfuhrer in California, Dr William Ondo in Texas, Dr Winkelman in Massachussetts.

The US foundation has local help groups. Join at rls.org

[sylvanwanderer]

You can get buprenorphine prescribed in the US, though it's not easy. I am in KY under Dr. Andy Berkowski's care. Prescribing has to be done through my NP. The first order of business, to my mind, is finding a practitioner who is well-versed in the current treatment of RLS.

Wishing you all the best!

[Zedz]

Gabapentin