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Re: Melatonin improves primary progressive MS - Case Study

Posted: Tue Apr 19, 2016 10:25 pm
by CureOrBust
I was originally diagnosed with CIDP which is accepted as an auto-immune condition. Since then, I have read many posts on Melatonin, that it was not recommended for people with auto-immune conditions. Never found the actual PubMed article, just cautionary notes on the various web sites, that usually sold it.

Anyway, I managed to get some Melatonin, and tried 300mb every night... for two nights... I actually feel considerably worse / more disabled, and will no longer be taking any more melatonin.

Re: Melatonin improves primary progressive MS - Case Study

Posted: Tue Apr 19, 2016 11:29 pm
by NHE
CureOrBust wrote:Anyway, I managed to get some Melatonin, and tried 300mb every night... for two nights... I actually feel considerably worse / more disabled, and will no longer be taking any more melatonin.
300 mg of melatonin is a very high dosage. The standard dosage for sleep assistance is 0.5 to 1 mg and many people take 3 mg which is probably more than they need. For the patient in the case report, the dosage started at an already high 50 mg and then increased to 100 mg after 6 months followed by further increases to 200 mg and 300 mg at subsequent 6 month intervals. I've tried 1 mg sublingual tabs and found that I sleep more soundly. I'm currently taking a 3 mg tablet that I swallow since we already had it in the house. I still sleep ok, but I think that the sublingual tablets may have worked better.

Re: Melatonin improves primary progressive MS - Case Study

Posted: Wed Apr 20, 2016 7:38 am
by lyndacarol
Just one more thing to ponder in this melatonin-MS discussion:

The influence of vitamin D supplementation on melatonin status in patients with multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/23665342

Abstract
BACKGROUND:
Multiple sclerosis (MS) incidence is higher in geographic regions with less sunlight exposure. Both vitamin D and melatonin are essential mediators of the effect of sunlight in health, and as such are candidates to play a key role in MS. We hypothesized that vitamin D and melatonin may have related influences in patients with MS.

METHODS:
In a randomized, double blind study of 40 IFN-β treated MS patients, 21 patients were assigned to 800 IU of vitamin D3 per day (low dose), while 19 patients received 4,370 IU vitamin D3 per day (high dose) for one year. Serum 25-hydroxy-vitamin-D (25-OH-D) and nighttime urine melatonin metabolite, 6-sulphatoxy-melatonin (6-SMT), were measured at baseline, 3 months and 1 year from enrolment.

RESULTS:
After 3 months supplementation, 25-OH-D levels increased and nighttime melatonin secretion decreased significantly in the high dose group, but not in the low dose group. After 1 year, a decrease in 25-OH-D levels, accompanied by an increase of urine nighttime 6-SMT were observed in the high dose group. Percent change in serum 25-OH-D was significantly and negatively correlated with percent change in urine 6-SMT after 3 months and between 3 months to 1 year. 25-OH-D levels by the end of the study were significantly and negatively correlated to BMI.

CONCLUSIONS:
Melatonin secretion is negatively correlated with alterations in serum 25-OH-D in IFN-β treated patients with MS. The finding suggests that melatonin should be considered as a potential mediator of vitamin D neuro-immunomodulatory effects in patients with MS.

Re: Melatonin improves primary progressive MS - Case Study

Posted: Wed Apr 20, 2016 12:08 pm
by David1949
I took the 10 mg capsules for 12 days. It did help me get to sleep faster. But it seemed to make me groggy during the day. Didn't notice any effect on MS.

Re: Melatonin improves primary progressive MS - Case Study

Posted: Mon Apr 25, 2016 12:34 pm
by lyndacarol
whyRwehere wrote:Not melatonin, but one of my husband's doctors has been having some patients do sleep studies, and has found that improved sleep has had an effect on "walking" ability for some patients during the day. He offered this study to my husband, as we were discussing the movement/spasms of my husband's legs during the night. We are in the queue for the test...almost got a slot last week, but couldn't arrange for it at such short notice. If they find a problem and treat it, and if the treatment affects him, then I will let you know. Don't know if the treatment would be a breathing machine or melatonin, but I am pretty sure he does not sleep well and often has a bad day after a bad night.
I suggest that your husband have a vitamin D test (the 25-hydroxy D test) before any treatment is begun.


Serum Vitamin D Is Significantly Inversely Associated with Disease Severity in Caucasian Adults with Obstructive Sleep Apnea Syndrome
http://www.journalsleep.org/ViewAbstract.aspx?pid=30430


"Is obstructive sleep apnea linked to low levels of vitamin D?", March 16, 2016
http://www.clinicaladvisor.com/is-obstr ... le/483478/

Re: Melatonin improves primary progressive MS - Case Study

Posted: Mon Apr 25, 2016 12:43 pm
by lyndacarol
ElliotB wrote:Melatonin is available in bulk for only $30 for a 100g pouch of pharmaceutical grade (pure with no fillers). This dosage seems to be the same as Biotin 100g would last about 6 months and as with Biotin should be very easy to take with water or can easily be encapsulated.

There are numerous references to seasonal lower levels of Melatonin triggering relapses on the internet, so who knows...
Might these "seasonal lower levels of Melatonin" correspond to seasonal periods of low vitamin D?

Re: Melatonin improves primary progressive MS - Case Study

Posted: Thu Mar 29, 2018 2:31 pm
by Bethr
lyndacarol wrote:Just one more thing to ponder in this melatonin-MS discussion:

The influence of vitamin D supplementation on melatonin status in patients with multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/23665342

Abstract
BACKGROUND:
Multiple sclerosis (MS) incidence is higher in geographic regions with less sunlight exposure. Both vitamin D and melatonin are essential mediators of the effect of sunlight in health, and as such are candidates to play a key role in MS. We hypothesized that vitamin D and melatonin may have related influences in patients with MS.


CONCLUSIONS:
Melatonin secretion is negatively correlated with alterations in serum 25-OH-D in IFN-β treated patients with MS. The finding suggests that melatonin should be considered as a potential mediator of vitamin D neuro-immunomodulatory effects in patients with MS.
Wow, I just went back to my Dr last week, as I've had to go off high dose Vit.D as it was affecting my sleep. I took 50,000iu (prescribed by the neurologist) every 2 weeks for 4 years. Over those years I realised that on the day I took my Vit.D I would lie awake all night, this wore off over the next 10 days or so, and then I'd take another 50,000ie and it would repeat. So I went off the 50,000iu and tried 5,000iu. The same thing happened, but it only lasted about 3-4 days and my sleep patterns came back. I've been suffering with waking up in the middle of the night and some menopause flushing symptoms lately and my Dr. has put me on Melatonin 2mg at night before bed. I'm feeling quite good on it, lots of dreaming, and my sleep is improving. I'm going for a vitamin D test in a couple of weeks. It will be interesting to see what levels I'm at. I spend quite a bit of time in the sun.

Re: Melatonin improves primary progressive MS - Case Study

Posted: Fri Mar 30, 2018 8:01 am
by koneall
I take melatonin every night. I was dx'd with MS nine months ago.