Sleeplessness

[VAF61]

Hi, I posted a while ago and since have been medicated with 200mg Pregabalin and iron ferritin at 134…. it isn’t helping. I thought it would but I am up most nights….. I feel that if Pregabalin isn’t helping me that I should decrease and come off it altogether but I really don’t know what to do? Can you advise me please?

[ChickenTwisty]

Effective pregabalin doses are usually in the range of 150 to 450 mg daily. Increase your dose gradually before ruling it out.

[VAF61 in reply to ChickenTwisty]

Thank you, I will speak with my GP today

[Joolsg]

You still have room to increase. Do so slowly by 25mg every few days.The max dose for RLS is 450mg.

If that doesn't help, your next line of meds will be low dose opioids.

[SueJohnson]

As I mentioned before According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."

[Highlighters]

Medical marijuana

[Mongolia2020 in reply to Highlighters]

Hi Highlighters, I tried medical marijuana but sadly it didn’t do anything for me.

[Highlighters in reply to Mongolia2020]

Hi, so was wondering how U felt after trying it?

[Mongolia2020 in reply to Highlighters]

I felt no different and it made no difference to my RLS. I tried the THC also. Still no difference.

You?

[SurvivorD in reply to Highlighters]

Agree!! I came off my Pexola after a horrendous withdrawal of many months and had a few days of very mild RL and then it came back with vengeance!! Unfortunately, my brain has to reset which can take a while. I have been taking Tri-Mag, Folate and Iron supplements for 2 months plus the trigger foods etc., I have cut out and it has eased the severity of my RL. For the bad nights I use Medicinal Marijuana. It certainly helps! I only use when necessary. Give it a try it may help 😃

[Highlighters in reply to SurvivorD]

Keep up the medical marijuana it won't do you any harm

[miles13 in reply to Highlighters]

Marijuana alone didn't help my RLS, but along with pregabalin, it helps me get to sleep on particularly restless nights.

[careerSquirrel in reply to miles13]

Do you think cbd oil would help?

[careerSquirrel]

I am taking Pregabalin and I am currently trying to reduce. It did work for me at a higher dose. Are you continuing to increase your iron levels?

[VAF61 in reply to careerSquirrel]

Hi, I was put on 600mg Ferrous sulphate but it made me very nauseous so it was reduced to 200mg which feels better. Just had several blood tests and awaiting results after discussion with my GP although she did not want to increase Pregabalin until she had the results.

[Keith1231]

I tried Pregabalin started at 150mg then went to 275mg but the side effects were not good, weight gain and balance issues so I came off and after a few torturous months of reduction I have not take pregabalin for 3 weeks but I still have withdrawals, albeit not as bad. Think seriously about continuing as the longer you are on it the more difficult it is to come off. This is from my own experience and could be different for you. Have you looked at other meds you are taking and if they are affecting your RLS.

[careerSquirrel in reply to Keith1231]

Thank you for reply. I don’t take any other meds, only iron tablets. I am taking 75mg but it is like the old days. Awake every two hours, jumpy legs, needing to get up and move. I had almost forgot how torturous it is

[take2aday]

Hi. I was fortunate to find a sympathetic private neurologist who prescribed Gabapentin and low dose Tramadol, as my sleep was terrible. So far I've had better nights, though not without some interruption. Not sure yet who will take over the prescribing (my GP or psychiatrist.) If it came to the worst I'd pay to get a private prescription monthly. Eventually I'll be able to see the neurologist on the NHS - 6 months down the line.

Good luck and best wishes meanwhile.

[violetta254]

I had no luck with gabapentin or pregabalin even at a supposedly effective dose and the side effects were too much. Possibly my 10 years of pramipexole may it impossible to be effective. I am somewhat happy with methadone as my RLS is mostly controlled even though I fall asleep too much and can't drive long distances. I may try the beutanorphine (sp?) if my neurologist will go for it. So far, he has been reluctant. I tried the dipyridamole and it was counter productive. My fall back for break through RLS is Chinese type suction cups applied to my calves and thighs and rubbed around to move the fascia for a few minutes. Along with the methadone, it puts me to sleep every time.