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Topic Melatonin Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.01.11 13:21
WOW !!!!!!! MY GUY SLEPT FOR 5 HOURS STRAIGHT!!!!!!

Sorry about the caps there all....i'm excited.... last night was the first night he slept more than 2 hours at a time.
When we saw the new doc at the Movement Clinic he recommneded we try melatonin 3mg to start before bed. Wednesday night i gave him just one 3 mg, no difference in sleep so the next night i did 6mg, a little better etc etc. Last night, i gave him the 6mg and WOW ... he slept form 11:30 unilt almost 6 am straight through.

Of course i would check with your doc first but some of you may try this if you haven't. Also, when reading up on this i found several articles in regards to this chemical and sleep. One thing, in several of the articles, it mentioned about keeping it as dark as possible. Seems the melatonin "kicks" in the darkness better. Of course with all of us, there is some kinda light on to make sure our PDr doesn't fall in the middle of the night. What i did was shut the picture of the TV off, but keep the volume on, and put a night light in the bathroom on so he could see. It worked so far .... I might be getting excited too early but i sure hope this lasts for awhile. He seems to be a little more together in the head today too. Oops, that sounded mean, but ya'll know what i was implying i hope.......

By lurkingforacure On 2010.01.11 19:04
We tried this and didn't work for us, but I know lots of folks take it and it works for them. Instead, we take low dose naltrexone, which may be slightly neuroprotective. You can google it and Dr. Hong at the NIH, he has done lots of research about it. It definitely has not stopped my husband's progression, but who can say whether he would have progressed faster. All I know is it helps him sleep better, so we take it. It's cheap, about fifty cents a day, is NOT covered by insurance, has to be compounded (we used Skip's in Boca Raton, they are a reliable compounder for this drug), and we get it scripted by a doctor out of state because our neuro laughed his rump off when I asked him about it....he's not laughing now, the clinical trial in Pennsylvania for Crohn's showed it pretty much healed things up, so it definitely helps the body heal itself. Google it if interested.

The other thing we are trying is dextromorthan, in cough syrup, 1/4 teaspoon before bedtime. So far, even better sleep, but it's been only two days. My husband had to get off azilect to take it, but since that's a really pricey drug with not much benefit that we can see, good riddance. He doesn't seem to have missed it so far, but like many things, time will tell. You can go to Neurotalk, the PD forum, to read up on the threads about dextromorthan and PD. It's critical to take only cough syrups that have dextromorthan ONLY as the active ingredient, and tiny amounts, you have to sort of figure it out for yourself. This drug was tested for reducing dyskenesias and reduced them significantly, so it definitely helps PD if one is at that point. Again, you can google it to read more if interested.

When your PDer sleeps, so do you! Congratulations on things, I hope the longer sleep continues for both of you. And everyone feels much better when they've slept better.

By hubb On 2010.01.11 22:00
Our neuro also suggested melatonin at night - I bought a bottle and before I ever gave my PD spouse a tablet, he started sleeping better. I am a very light sleeper and not a good sleeper at all so decided I'd take the melatonin - and it took about 3 nights but it really did make me sleep - then I discovered in reading literature, that you shouldn't take it if you're on coumadin, which I am, and stopped immediately. I was afraid I had messed up but when I went for pro time count, everything was normal, and tech had never heard of melatonin interfering with coumadin, looked it up on her computer and sure enough, there it was, so she learned something new as well. I have kept the bottle on hand and if he starts in with the restlessness again at night, I will start him on the melatonin. Sure wished it helped with the restless legs or dystonia/dyskensia whatever it is that just about wracks his whole body at times - but it seems that occurs if he is off even a little bit with the synamet - but of course, he's been on synamet for so long that his body must demand it by now.

By dkleinert On 2010.01.12 00:10
Karolinakitty: Have not tried melatonin for my PD spouse - good thought though - will ask his neuro next visit. But I have been taking 1mg sublingual melatonin for several years - it is the only way I fall asleep. It works wonders. And yes - turning lights down low after sundown - no really bright lights on anywhere in the house - signals the brain to begin to produce melatonin. Watching TV until late (11pm news!!) and keeping bright lights on has made for a lot us have sleep problems.

After my husband came home from Rehab recently, because we don't sleep in the same room, I wanted to sleep with my door open and his door open so I could hear him if he needed me during the night. Boy did that affect my sleep with the light from outside coming into my usually very dark bedroom. We, too, keep a night light on in his bathroom, and we have a really bright light outside at night that floods our property around the house. Lots of that light now comes in my room with the door open ....so I can attest to the fact that all the things you say are true. My PD spouse sleeps longer and better with less light and when we go to bed earlier than midnight.

I have also read in more than one place (in sleep articles) that the hours between 10pm and 2am are when the body does is physical healing and when we sleep differently - but it is the most beneficial for the immune system. Then from 2am to 6am it is psychological healing and when the REM sleep is the most intense. Just my 2 cents from a lot I have read about sleep. For 3 years I worked until 1:30am, and could not get to sleep until 3am or 4am, and had to relearn how to sleep at the "normal" times when I no longer had to work that awful shift. These different aides really helped me achieve that.

By Newcaregiver On 2010.01.12 08:27
My pd'er also uses melatonin. It seems to work for one night and then he needs to not use for 2 or 3 nights for the effectiveness to kick back in. I will also check on whether he has on bright lights before bed and dim those down. that also could help, I see!


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