How much melatonin can I be taking for REM Sleep Disorder, (RBD), associated with Parkinsons.

[Spiker0507]

Hi all. Was taking 10 mg Melatonin along with .5 mg clonazepam. Was working fine but sort of out of the blue my activity during sleep have greatly increased to the extent I recently jumped out of bed where upon I encountered a highly immoveable wall. I really don't want to increase the Clonazepam but from what I have read, 10 mg of melatonin is about as much as you want to take for the long term. I can't pinpoint any changes in Meds that might have caused this. For the Parkinsons I take Rytary 61.25/245 Donepezil 10 mg and Doxazosin for BP. Been on all that for about 5 years and pretty stable.

Any suggestions? I'm currently sleeping on the floor until I figure this out

[chartist]

You may find the following human study regarding RBD and melatonin of interest :

onlinelibrary.wiley.com/doi...

Here is a very relevant quote from the study :

' With melatonin, RBD symptom severity gradually improved over the first 4 weeks of treatment (Ikelos-RS: 6.1 vs. 2.5; CGI Severity: 5.7 vs. 3.2) and remained stably improved (mean follow-up 4.2 ± 3.1years; range: 0.6-21.7years). Initial response was slowed to up to 3 months with melatonin-suppressing (betablockers) or REM sleep spoiling co-medication (antidepressants) and failed with inadequately timed melatonin intake. When melatonin was discontinued after 6 months, symptoms remained stably improved (mean follow-up after discontinuation of 4.9 ± 2.5years; range: 0.6-9.2). When administered only 1-3 months, RBD symptoms gradually returned. Without any melatonin, RBD symptoms persisted and did not wear off over time. Clock-timed, low-dose, long-term melatonin treatment in patients with iRBD appears to be associated with the improvement of symptoms. The outlasting improvement over years questions a pure symptomatic effect. Clock-time dependency challenges existing prescription guidelines for melatonin. '

Art

[Rufous2]

Had any major dietary changes? Some RBDers here find a low lectin diet to be helpful. Hopefully they'll weigh in and talk more about that.

I think stress factors in heavily. Have you tried any stress reduction techniques....meditation, Tai Chi, yoga....?

If you're using immediate release melatonin, you could try substituting some of it with extended release, I notice some recent studies have used ER instead of IR.

[00Mark]

Hi, I believe this kind of physical activity (acting out your dreams) is something that can arise with Parkinson's. Rather than alter your melatonin dose, I suggest talking to your neurologist or Parkinson's specialist to see if they can prescribe something to deal with the sleep disturbance directly.Good luck!

[JohnPepper]

When you understand that THRE IS NO MEDICAYOON ON THE MARKET THAT REVERSES PD then you stand a chance of getting better.

FAST WALKING since 1994 has reversed my PD and it has for many more other people.

It is not in the financial interests of the medical world for us to get better!

Get used to that g=fact and take charge of your own future and start doing FAST WALKING, every second day, for one hour. You will then feel a lot better within months!

START NOW!

[rhyspeace12]

My husband who died at the age of 80 with sudden death in Parkinson's had REM sleep disorder since the age of 20 when I met him. It was ALWAYS awful and we ended up in separate bedrooms.

When he was in his 70's he started sundowning(wandering off in the middle of the night)I decided to give him 10g of melatonin at 4 pm and 10 mg again at 9 pm. He never sun downed again except once when my son forgot to give him the first dose at 6 pm.

[Caa11]

Hello,

I am so sorry you are experiencing this piece of PD. My husband struggles with this as well. His neurologist thinks there is no harm in 10 mg immediate-release melatonin - about 2 hours before along with 12 mg XR - right before sleep. He wanted to add clonazepam but my husband wanted to hold off. More recently he started taking RSO ( Rick Simpson Oil) sublingual ( under the tongue) about 2 hours before bed & it has been a GAME CHANGER. I am not sure if this is legal (marijuana) where you are but it is here in NJ. Since starting this, he has slept soundly without acting out his dreams. He wakes refreshed & more himself than he has in a year. It stopped the tremor too. It has only been about a week since starting but we are hopeful this continues. Wishing you well

[Ghmac in reply to Caa11]

Is this oil THC or hemp?

[Caa11 in reply to Ghmac]

It’s THC OIL

[WhyRBD]

I have perfected a lectin free diet that has made a huge difference on my night time events. Severity and frequency are dose (lectin) dependent and have gone to almost zero with my eating plan. I take no drugs and in prodromal phase. Diet showed a positive effect (I improved) during two year longitudinal study at the University of Florida . Ironically, they were not interested in what I was doing LOL. Always willing to share and yes exercise (running and resistance) is a daily part of my day

[Rufous2 in reply to WhyRBD]

"Diet showed a positive effect (I improved) during two year longitudinal study at the University of Florida."

That's great to hear. I'm very interested in how improvement (or lack of) was measured in the study you participated in. Did they do polysomnograms, bloodwork, olfaction testing, cognitive or motor function testing .....? What changes took place that indicated improvement?

I'm wondering what an individual with RBD who is not part of a study can do to gauge progression, other than relying on number of episodes.

Do you take melatonin?

[Rufous2 in reply to WhyRBD]

Bumping this up, hoping you'll see it and tell us more about your experience at the University of Florida