RLS and CBD

[Littlegran]

As I have mentioned previously, I have been on gabapentin for many years. I am now taking 1800 mg a day as well as 4 mg of requip. I am almost through weaning off requip because of augmentation. But, on the advice of a neurologist that I no longer see, I started CBD gummies and CBD oil. So, I am wondering if that is an ok combination. Gabapentin and CBD? Presently, my RLS is intermittent, but I still have nights that I am up and down with little relief and no sleep. Like many, I am at a loss for what will work. My RLS comes on around 6-7 p.m. and keeps me awake most of the night. I continue to read all of your posts, which are very helpful, but I have not seen any thoughts on taking CBD for RLS.

Thanks

[ChrisColumbus]

There have been a lot of posts here about CBD which you can find using the forum search box, but this one is specifically about CBD and gabapentin:

healthunlocked.com/rlsuk/po...

How much ropinirole (Requip) have you got down to now? I see that SueJohnson pointed out when you first posted about coming down from 4 mg that the gabapentin wouldn't be fully effective until you'd been totally off the rop for a few weeks...

[Littlegran in reply to ChrisColumbus]

Chris Columbus, thank you for the article. I am down to 1 mg Requip. I was sleeping well and had no restless legs symptoms, but RLS is back and keeping me up at night.

My big question is this. I have been on Gabapentin and Requip together for years. Does that mean that the Gabapentin was not effective since I was on Requip as well. This is very confusing to me. My neurologist at the time always had me on Gabapentin but as my RLS worsened, he added Mirapex then later added the patch then finally added Requip. At that point, I was on Gabapentin and Requip together until now when I requested to stop Requip.

Later, the neurologist suggested CBD with the state allowed THC. Then he told me to take THC which I did and had a really bad reaction, so no THC for me.

[ChrisColumbus in reply to Littlegran]

I have never taken any dopamine agonist - pramipexole (Mirapex), ropinirole (Requip), rotigotine (Neupro) - a gabapentinoid or an opioid for RLS myself so can't speak from personal experience. But I believe that Joolsg SueJohnson LotteM etc have all said that gabapentin will not be fully effective while also on a dopamine agonist and indeed until you've been off the DA for several weeks.

You've done very well to get down - hopefully following the guidance on doing so slowly - to 1 mg. Withdrawal is slow and painful, and can be more troublesome as you get near the end: an opioid pain medication such as tramadol or a low dose opioid can help with the transition.

.

[Littlegran in reply to ChrisColumbus]

Thank you ChrisColumbus for your help and support. Each of our situations on RLS are different, but we share the effects of this terrible disease.

[Joolsg]

I see that you were on gabapentin BEFORE any dopamine agonists and it stopped working for you. That alters the usual advice. Gabapentin often works once you are off dopamine agonists, but as it never worked for you, it's not likely to help when you're off requip.

The last 1mg of requip is the hardest to get off. The gabapentin won't help the withdrawal symptoms and, as it failed to cover your RLS before requip, it won't cover your RLS once you are off requip.

CBD gummies won't help withdrawals or RLS, but they may possibly help with sleep.

It appears that you have refractory RLS and once off requip, you will need to ask for a low dose opioid, as per the Mayo Clinic Algorithm. The most effective for refractory RLS are the long half life opioids, methadone and buprenorphine.

Buprenorphine can reduce or eliminate the DA withdrawal symptoms, so ask to start it now.

[Littlegran in reply to Joolsg]

Thank you Joolsg. I have wondered why my doctor would keep me on Gabapentin and Requip together. I have been on both for 15 years. Is it possible that all the Gabapentin that I have taken has been for nothing?

[Joolsg in reply to Littlegran]

In a way, YES.Requip causes augmentation very quickly, within the first 5 years. As you've been on requip for 15 years, you will DEFINITELY be experiencing augmentation.The gabapentin may have masked some of the earlier daytime breakthrough RLS.

Gabapentin can act as a sedative so will help sleep/insomnia. But, in your case, being on it with requip for 15 years has indeed been a complete waste of time.

If SueJohnson is correct, and you were only on 600mg Gabapentin before adding dopamine agonists, then that was too low to cover RLS.

I think you need a new doctor.

[SueJohnson]

My understanding is you were only on 600 mg before your were on dopamine agonists, so it is not surprising they didn't help as that is a low dose, so it may very well help once you are off requip for several weeks and your symptoms have settled

[Littlegran in reply to SueJohnson]

Sue, originally I was on 600 mg of Gabapentin, but the doctor started to increase my dosage along with adding dopamine agonists. I was finally given Requip along with the Gabapentin which is where I am today. 1800 mg Gabapentin and 4 mg Requip. I am weaning off Requip now.

[SueJohnson in reply to Littlegran]

OK, then gabapentin it should help once off requip for several weeks and your symptoms have settled.

[Littlegran in reply to SueJohnson]

Sue, thanks for staying with me with recommendations. I really appreciate all of you on this forum.

[Whippetmama]

I'm sad to tell you that plain CBD probably won't do anything for your RLS. It is the THC that works. When you say you had a bad reaction, can you tell me what type of reaction and what was the strength of the THC? I used to sell high THC medicinal tinctures and perhaps I can guide you.

[Littlegran in reply to Whippetmama]

Whippetmama, here’s the story. Years ago, I was on 600 mg Gabapentin. That was all for some time. Then my RLS got worse, so the neurologist increased in inclements to 1800 mg. At some point he added Mirapex which did not work. Then he added the Neupro patch which didn’t help, then Requip which I have been on with Gabapentin for years. That Neurologist left, so I went to another one who kept me on the same medications. My RLS would come and go, but I was without symptoms for months, then it would come back.

Currently. my RLS has been relentless, especially in the evenings and at night. So, I went back to my Neurologist and said I wanted off of Requip after reading these posts. My doctor never mentioned the problem that dopamine agonists could cause. He even suggested that I didn’t have RLS, but Akathisia and wanted me to take an antidepressant. He also suggested that I take 4 mg of THC.

So, as I am weaning off Requip, still on 1800mg of Gabapentin, I buy 4 mg THC/15mg CBD/ and 125 mg cbn. After taking that before bed, I was up all night and felt confused and anxious. I did not take another one.

I quit that doctor and am trying another one on June. I inquired if this one followed Mayo, and the response was partially. I have had another sleepless night and am so tired and weary.

[Joolsg in reply to Littlegran]

I'm so sorry to hear this. Withdraw VERY slowly. 0.25mg of normal release requip every 2 weeks.You will probably need a low dose opioid. If you get methadone or Buprenorphine, you can avoid the horrendous withdrawals from requip.

[Littlegran in reply to Joolsg]

Thank you. I am hoping that getting off Requip will help.

[RLSAndy]

hey - for me it dosent do much, i use thc oils that still dont work much on me wpart from either getting me high which i dont want or chilling me out, but if it did work it certainly wont hurt trying.

[Rayme]

CBD didn't work for me, only made me feel a bit sick. I then had home made cannabis edibles and a small amount of THC and that was great for a year and slowly I developed tolerance. I've never been on DAs but have severe RL and now take methadone 5mg which takes the edge off RL and I get 5 or 6 hrs sleep.

[pmmargo]

the gabapentin amplifies the cbd and your dose is large so it is very dangerous

[amrob123 in reply to pmmargo]

Is that the case? I wondered whether that was what was happening when I took CBD with pregabalin... I know that pregabalin can amplify the effects of other drugs.