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Restless Legs Syndrome

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Advice on Gummies

Whymelord profile image
9 Replies

Hello everyone, I'm getting some Cannabis Gummies today,have never tried these so I would appreciate comments possitive and negative please.

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Whymelord profile image
Whymelord
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RLScure profile image
RLScure

I posted an article with my recommendations. Other people have submitted interesting and informative comments on the post:

healthunlocked.com/rlsuk/po...

Cookiebum24 profile image
Cookiebum24

Hi, can I ask where you got them from. I’m in the UK. Thanks

Qalba profile image
Qalba

CBD sleep gummies help my insomnia, but not RLS. I take metadone and sleep gummy each night.

AnotherRLScase profile image
AnotherRLScase

I use 5 mg cannabis gummies as part of my daily routine (1 per day at bedtime). I'm in California, so unless you are as well you won't likely find the same brands. The ones I find most helpful contain a blend of THC, CBD and CBN. THC by itself doesn't do all that much for me, but the combination of ingredients is very helpful. I also take .5 mg of ropinirole and iron bisglycinate, and have been for about 3 1/2 years. I think the gummies are helping to stave off any effects of augmentation so far. RLS isn't gone completely, but when I do have a flareup it only takes some light stretching to get back to sleep, usually for the rest of the night.

SueJohnson profile image
SueJohnson in reply toAnotherRLScase

Since you are only on .5 mg ropinirole why not come off it to avoid any possibility of augmentation as the longer you are on it the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.

Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed or just cut your .5 ones in half. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end or you may just need to take more of your gummies. . But in the long run, you will be glad you came off it.

Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

You say you are taking iron bisglycinate but have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking your iron supplements including iron in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers.

Assuming you do need the iron bisglycinate If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 50 mg to 75 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption.Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

If you need a doctor there are several experts in California so let me know where you are and I can give you a name.

AnotherRLScase profile image
AnotherRLScase in reply toSueJohnson

Thanks, Sue. I do plan to come off the ropinirole eventually, but am currently in a good place overall health-wise and have been for quite a while. No side-effects beyond occasional drowsiness, good sleep generally, and just as important my moods and weight are well-regulated. All that in mind, I don't want to rock the boat until it becomes necessary.

Re. iron levels, I have a regular checkup coming up soon, & will remember to ask for ferritin and not just iron levels.

SueJohnson profile image
SueJohnson in reply toAnotherRLScase

Your choice and I understand but do think about what I said may happen if you wait.

AnotherRLScase profile image
AnotherRLScase in reply toSueJohnson

Will do, and I appreciate the advice. Thank you.

jebsat profile image
jebsat

I rely on them for long stretches of sleep...I agree with another comment that a combo of TCH, CBD and CBN work best. I eat my gummy when I am super sleepy. I can give you brand names of some I use if you would like.

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