Best CBD to purchase?: There are so... - Restless Legs Syn...

Restless Legs Syndrome
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Best CBD to purchase?

There are so many products now on line! I’m in the US, trying come of Requip due to augmentation. Have swapped to gabapentin which is helping but need a little more help. Thank you all for this site and the wonderful knowledge here.

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I should clarify and say I have been gradually decreasing the Requip dose. Have gone from 4mg a day down to 1mg. Many sleepless nights and some aweful RLS attacks. I’ve suffered with this stuff for about 50 years, I’m 65 now.

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I can’t help with cbd as I didn’t find it useful against my Rls - though there are many on here who should have recommendations. I just wanted to congratulate you on reducing your requip so dramatically. That must have been very hard. I hope you manage to get off that last 1 mg if that is your plan though it is likely to be very troublesome. Make sure your serum ferritin is high. Best of luck.

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I had a difficult time too getting off the last 1mg of Requip. It was so easy to slip back into taking "one more pill" just to get a good night sleep, but paying the price by fighting the increased RLS symptoms for the next 4-5 days. Fortunately my sleep doc gave me low dose hydrocodone which let me kick it. Still have RLS symptoms, but they are much less severe. I wish you the best of luck.

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Many many sleepless nights for me too from rls. I finally went to a neurologist and my final dosage Is: two hours before bedtime 8 p.m. I take Gapapentin, 100 mg, 2 capsules and 6 mg of Melatonin. One hour later, 9 p.m., I take Gabapentin 300 mg, 1 capsule, four .25 mg Mirapex, and one .15 mg capsule of Restoril. I usually go to bed at 11:30 p.m. and fall to sleep right away. I hope this helps. I also bought from Amazon a spray to put on my knees, it helped too. Brand name is NOW, magnesium topical spray, 8 ounces is $6.58 including tax. I am a young 75 years.

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You’ll get past it soon. A few days to a week maybe. Then it will be done. I went cold turkey too this summer. Pure hell for a month. But so glad now. I’m on Lyrica and very happy with it. No more RLS unless i’ really Tired or upset. Even then it’s minimal.

I have found when I do get a little vib starting in one leg or the other to use a product called Restless Leg Cream by Magnilife. Got it at the drug store. It works immediately. I apply it liberally to my leg; it dries in seconds and smells great. Then poof no more weird sensations. Love it! I’ve been meaning to post about it. Been using it for a couple months now.

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Thanks. I’m down to .5 mg so I need to take that last plunge. And I’ll try the magnilife. What a nightmare journey this is.

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Stories of hope help me to avoid crumbling during this hell hole I am in. Thank you all. Jason, Australia.

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Hi Ramona’s 1234,

I am interested in your being in Australia.

I am here now for 2years and find almost no help from the medical profession.

No G P can order narcotics, so no help to get off Pramipexole.

I struggled for 5 weeks , dreadful nights, got down to 0.25 , saw a long awaited neurologist who put me back on twice the original dose.Now a new GP but although she says I need pot , she cannot order it.

So I am ordering it online for big bucks.

Hoping it will be the answer.

Gillian

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Gillian, I do hope you didn’t take the twice the original dose of pramipexole prescribed by the neurologist. After your very hard work on getting it reduced to almost the lowest dose. You don’t tell how much the prescribed dose is, but I suspect it is well above the maximum recommended dose, which is currently very low.

Arm yourself (again?) with loads of info on how to proceed during and after augementation when you go and see your new GP. Good luck and never hesitate to ask for help here. Or simply to rant.

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Thank you LotteM!

Such friendly helpful support.

Much appreciated.

Yes, I always plan to be very vocal, with data etc, concrete info but all my resolve evaporates in the medical office!

But next time.......

Gillian

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Hi Gillian,

Your neurologist sounds worse than useless and did not earn his/her fee. Your GP may not be correct either. Pot (I assume this is cannabis) does help some people with RLS but (anecdotally) it seems to be around or less than 50% and I think it is very unlikely it would help with the greatly increased symptoms experienced during withdrawal from pramipexole.

As you can't access opioids to get off pramipexole, would you consider ordering kratom? You can get it by post in Europe - though I'm not sure about getting it in Australia. I didn't use it when I was withdrawing from pramipexole (I didn't know about it then but I use it regularly now) but some have reported finding it very helpful during the withdrawal process. It might be worth looking into.

Alternatively, just so that you know, it is possible to withdraw from pramipexole without an opioid - I did it but it was hellish. I would say that it is worth getting your iron levels as high as you can (get serum ferritin checked first) in advance. And be prepared for misery. It is worth it though. I felt like myself for the first time in years when I finally got off pramipexole.

Very good luck and keep us posted.

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Thank you so much for all that info, Involuntarydancer.

It is all so helpful. Everything but everything seems to be illegal here in Oz!, Just kidding, but I come from broad-minded Canada!

So no kratom, definitely illegal, and who knows if my CBD oil will arrive?

If it does, I will try it.

Failing that I will have to get it on the street.

I will continue with the pramipexole till it augments again , and then do what it takes here to get on with life.

At 82, after a lifetime/more than 50 years endeavouring to alleviate pain and suffering in others as an R N , one might expect to be cared for in the same spirit, as I live out my last years .But apparently not so.

Well still this forum is a daily source of comfort to me and to many and I thank you all for your concern to me and to others.

You are indeed a special lot.

Gillian

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Yes, Oz sounds similar to Ireland. Whereas Canada seems to be a mecca of tolerance. My rls has made me rather lawless and I order my kratom from Holland notwithstanding that it is illegal here. I have also grown my own supply of cannabis which is a wonderful sleep aid - although for me it was not helpful with my rls symptoms which was a disappointment.

I hope the CBD works for you.

To repeat LotteM, I would counsel against increasing your dose of pramipexole further. I only realised when I got off the pramipexole how different from my true self it had made me feel. A sort of nebulous but appreciable alteration in 'me' that I hadn't noticed creeping up in the decade or so I was on it.

Don't despair just because your neurologist is useless. There are lots of things you can consider which may be you could access with the help of your GP or even without.

You might consider ordering the medical text book 'Clinical Treatment of Restless Legs Syndrome' by Lee Buchfuhrer Hening and Allen - it's available on Amazon. As a health professional it will be particular comprehensible to you.

Have you tried one of the anti-convulsants such as gabapentin or pregabalin? They can work well, particularly in conjunction with other drugs. So you could add them in to cover breakthrough symptoms when your existing dose of pramipexole isn't enough. They can take a few weeks to build up so it's worth starting them sooner rather than later.

Also, I am taking dipyridamole (aka persantin) which is a blood thinner. There was a study recently which found it helpful for rls and I am finding it makes life a lot more tolerable with it. I do still need other medication but I feel more 'normal' since starting dipyridamole. On the off-chance that you are already on a blood thinner you could consider changing to dipyridamole.

Another possibility that LotteM and I are both trying is LDN (low dose naltrexone) which some sufferers have had great success with. So far I am not finding it making much difference but apparently it can take time. Many people take LDN for their general health so it might not be a bad option to try. I get it on prescription but I think LDN can be ordered online without a prescription (ironically I think it can be ordered from Canada).

The other thing to consider is a restrictive diet - lots of people report great success with this also including some on here who have suffered with severe rls for years and are now experiencing considerable relief after going vegan and gluten free. It seems that sugar, dairy, meat and gluten can be culprits with rls.

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Gillian, just one little warning.. I was on Pramipexole for 3 years or so.. Would fall asleep without warning and didn't know why. After a bad motorhome accident after falling asleep, I checked on the side effects of the drug. One item was "may be alert and fall asleep without warning". That finished my association with that product.. Havent found anything to replace it yet but about to try cannibis oil.

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Hi all, I borrowed time from Sifrol; now I am paying big. Currently down to 0.5mg. In February going under med supervision to cease it. Sifrol is tail chasing when it comes to RLS.

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Hi Ramona’s, ‘borrowed time’ - that is exactly what I did also. Off it now though. It is a hard journey but worth it. I felt like myself for the first time in years. Good luck.

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Sorry, I was auto-corrected! Obviously meant Ramones

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Thanks. Love the statement you make about finally starting to feel like myself again. I’m getting there.

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Good luck Su. I think feeling yourself again is something that a lot of people comment on when they come off a dopamine agonist.

We are all with you. A good few people posted on here almost nightly when they were going through the worst of the withdrawal process. I think they found it helpful.

All the very best.

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No worries. I am grateful for your reply; indeed all replies. I am going to NZ for a couple of weeks for hols The work begins January 26th and I am frankly terrified . I tried last year and failed. Too eager and my mind and body couldn't cope.

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CBD won't help RLS I am afraid, it's the THC that cures it. I have some very expensive very strong CBD oil but it doesn't affect the RLS I am afraid.

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