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Old 07-21-2012, 06:28 AM   #1
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Question At home care, Bedtime

Hello everyone!
My dad's Alzheimer's Disease was brought on shortly after heart surgery in 2002.
Around 2003 he started mentioning to his doctor his memory was not good.
I think he was started on Aricept in 2004.
Of course he eventually started seeing a neurologist who added on Namenda and Metanx. Metanx is for Neuropathy due to his Diabetes.

We had a huge back slide in April when his neurologist changed his Aricept to Exelon, obviously not a medication for him but now he has been back on the Aricept for over a month and thankfully he has stabilized.

Issues at home my mother has is Hygiene...It is a battle 95% OF THE TIME, given when this is a man who used to shower every night.
You would think he was going to the gas chamber or something!

Sleeping alot through the day, this is 75% of the time, but like we all see with Alzheimer's, what they might do for awhile might switch on or off as I have seen with my dad.

Now for the past week at bedtime when my mother is exhausted and wants to sleep is my dad is awake and keeps her up rubbing her arms, back, hands wanting to move consistently as I have observed in the day time rubbing his fingers together sitting in the chair...

I believe in natural approaches, supplements and besides his Multiple vitamin he is taking a good Fish oil 2,000 with a higher DHA (Good for eyes and brain), Metanx (prescription supplement for PN but has b6, Folic acid and B12 in purest form), extra B12 (methylcobalamin), Vitamin C 500 mg, twice a day, Vitamin D3 2,000 IU, CoQ10 100 mg.
Of these supplements only three are given in evening , vitamin D3, vitamin c
and fish oil.

I was looking for something to help with my dad's sleep at night so my mom can get some much needed rest and looked up Melatonin for Alzheimer's and that is what led me to this forum.
I have taken Melatonin before but in 3mg at night to help me sleep and it works!
However, with the big world wide web out there I have read it is best to start out at 1mg for Alzheimer's patients due to the fact a higher dosage could cause the opposite affect(keep them up) or make them too drowsy(my dad sometimes gets up to use bathroom in the night)

So, anyone have any input on Melatonin that they have used for their loved ones with Alzheimer's as far as dosage, when to give (one hour or two hours before bedtime ?) Also do you give 7 days a week ?

Any input would be most appreciated..

Thank you

 
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Old 07-21-2012, 11:21 AM   #2
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Re: At home care, Bedtime

It is me that is a huge fan of Melatonin. My Mom was a night time wanderer. She actually walked day and night with only short naps along the way. She started on the Melatonin a couple of years ago. We plowed right in with the 5 mg. It either works or it doesn't and you will know soon enough. She gets her dosage every night at 9 pm and is put in bed between 9:15 and 9:30. It works rather quickly The first week we didn't see a huge difference but we keep on the routine and it was not long before she was going to bed by 9:30 and sleeping well throughout the night. I also saw a reduction in her late afternoon and evening Sundowning. Yes, every night. By doing it consistently it will boost her natural circadian rhythm. She has been on it about two years now and we have had no more problems with consistent night time rambling. Yes, she does get up infrequently but I will take those few night over the every night pattern we were on.

Love, deb

 
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Old 07-21-2012, 02:30 PM   #3
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Re: At home care, Bedtime

Hi,

I am trying to work through the correct dosage myself. Found your post while searching for an answer. Perhaps we will find it together. It sounds like you and I have similar approaches to caregiving.Here is what I have done.

Gabriel, thanks for posting the dosage you use. I couldn't find it in any of your previous posts, which I had seen a few days ago.

While simultaneously trying to get my mother's low thryoid corrected this past Spring (generic levothyroxine, then synthroid, then adding cytomel and now Armour - which is giving us the best result), she began sundowning. Confusion around 4-5 continuing until bedtime (10). I searched out treatments and came up with Melatonin and light therapy. I believe (in retrospect) I approached it the wrong way (by starting at too high of a dose, rather than building up slowly). Most studies I found had been using between 3mg and 6 mg Melatonin. I gave her 3 at the onset and she still awoke before me at the crack of dawn and retrieved the paper and after being up for an hour went back to bed. I self dosed at 3 mg also as I wanted to see what it was all about and it knocked me out. So much so that I had a hard time getting up the next morning and felt groggy throughout the day. I tried 6 on her and she complained of headaches so I dropped it back down to 3. Her sundowning symptoms (asking where her son was (me)...and when I said right here she would say, "no my little kid"....) disappeared. Confusion, agitation...disappeared. However, it was not a clean experiment as we (her doc and I) were still trying to get her thryoid med adjusted. I dropped my dose down to .75 mg melatonin and took her down to 1.5 mg as I had read the dose a healthy adult's body produces is between .10 and .25 mg. I then dropped her down to .75 mg. Sundowning symptoms began to return. .75 mg still being too much for me, I am down at .25 and sleeping great. I further reduced her to .25 and sundowning is still present, but getting a bit better actually, as is her sleep. She no longer awakes at the crack of dawn to get the paper but goes to bed at 10 and I wake her at about 9.

My thoughts/questions:
1) Best to start at .25mg IMHO and go up from there perhaps with a few days between changes (is a few days enough?) I use Nature's Bounty 1mg tabs available from Walgreens and I quarter them. Had a hard time finding such a "low" does at the store. Had been using Naturemade 3mg prior to that and will go back to that if the higher dose seems warranted. Her doc uses 3mg on her father and said that seemed to be the best dose. I read that Alz and Age create less Mel production and fewer receptors, but I know of no tests that measure that. I think we have to experiment, while being mindful that we are using pharmacologic doeses in the 3 mg range with no long term studies on safety.

2)Does someone make up for lost sleep as the body heals or is this another phase of the dementia? Mom had crap sleep for about 10 years prior to the Melatonin experiment. Sleeping pills were not used because she supposedly had sleep Apnea, which I "cured" with tennis balls sewed in a sock attached to the back of her nightshirt. This only works for "positional" sleep apnea. Regardless, sleeping pills are not a good long term solution.

3)Do NOT use antihistamines as sleep aids as they slow an already malfunctioning brain.

4) At the higher dose (3mg) I would stumble to the bathroom in the morning. Something to be aware of (equilibrium) if your "patient" is getting themselves to the bathroom in the middle of the night. A broken hip would be tragic at this stage.

5) Now that her thyroid seems to have stabilized, I plan on bumping up the dose in a few days in .25mg increments (every 3rd day or so) until the sundowning disappears again. Using the lowest effective dose is the goal. Does anyone else know of a better way to find the least effective dose.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3001215/

<removed disallowed websites>

Last edited by Administrator; 07-21-2012 at 09:19 PM.

 
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Old 07-22-2012, 07:19 AM   #4
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Re: At home care, Bedtime

Deb,
Thanks for your quick reply.
I am going to start out at 3mg since that is what I purchased and take it from there.
Hope this helps, rather see my dad take a natural supplement than to have a doctor order him a prescription med that will, no doubt, confuse him even more...

 
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Old 07-22-2012, 07:30 AM   #5
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Re: At home care, Bedtime

DJ, that is why I went with the Melatonin to start with. The medications mentioned all had side effects that included some decrease in cognition.. which we don't need any more of! Just hope it works as well for your Dad as it has my Mom. Just give it some time ...

Love, deb

 
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Old 07-22-2012, 11:17 AM   #6
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Re: At home care, Bedtime

Hi,

I am trying to work through the correct dosage myself. Found your post while searching for an answer. Perhaps we will find it together. It sounds like you and I have similar approaches to caregiving.Here is what I have done.

Gabriel, thanks for posting the dosage you use. I couldn't find it in any of your previous posts, which I had seen a few days ago.

While simultaneously trying to get my mother's low thryoid corrected this past Spring (generic levothyroxine, then synthroid, then adding cytomel and now Armour - which is giving us the best result), she began sundowning. Confusion around 4-5 continuing until bedtime (10). I searched out treatments and came up with Melatonin and light therapy. I believe (in retrospect) I approached it the wrong way (by starting at too high of a dose, rather than building up slowly). Most studies I found had been using between 3mg and 6 mg Melatonin. I gave her 3 at the onset and she still awoke before me at the crack of dawn and retrieved the paper and after being up for an hour went back to bed. I self dosed at 3 mg also as I wanted to see what it was all about and it knocked me out. So much so that I had a hard time getting up the next morning and felt groggy throughout the day. I tried 6 on her and she complained of headaches so I dropped it back down to 3. Her sundowning symptoms (asking where her son was (me)...and when I said right here she would say, "no my little kid"....) disappeared. Confusion, agitation...disappeared. However, it was not a clean experiment as we (her doc and I) were still trying to get her thryoid med adjusted. I dropped my dose down to .75 mg melatonin and took her down to 1.5 mg as I had read the dose a healthy adult's body produces is between .10 and .25 mg. I then dropped her down to .75 mg. Sundowning symptoms began to return. .75 mg still being too much for me, I am down at .25 and sleeping great. I further reduced her to .25 and sundowning is still present, but getting a bit better actually, as is her sleep. She no longer awakes at the crack of dawn to get the paper but goes to bed at 10 and I wake her at about 9.

My thoughts/questions:
1) Best to start at .25mg IMHO and go up from there perhaps with a few days between changes (is a few days enough?) I use Nature's Bounty 1mg tabs available from Walgreens and I quarter them. Had a hard time finding such a "low" does at the store. Had been using Naturemade 3mg prior to that and will go back to that if the higher dose seems warranted. Her doc uses 3mg on her father and said that seemed to be the best dose. I read that Alz and Age create less Mel production and fewer receptors, but I know of no tests that measure that. I think we have to experiment, while being mindful that we are using pharmacologic doeses in the 3 mg range with no long term studies on safety.

2)Does someone make up for lost sleep as the body heals or is this another phase of the dementia? Mom had crap sleep for about 10 years prior to the Melatonin experiment. Sleeping pills were not used because she supposedly had sleep Apnea, which I "cured" with tennis balls sewed in a sock attached to the back of her nightshirt. This only works for "positional" sleep apnea. Regardless, sleeping pills are not a good long term solution.

3)Do NOT use antihistamines as sleep aids as they slow an already malfunctioning brain.

4) At the higher dose (3mg) I would stumble to the bathroom in the morning. Something to be aware of (equilibrium) if your "patient" is getting themselves to the bathroom in the middle of the night. A broken hip would be tragic at this stage.

5) Now that her thyroid seems to have stabilized, I plan on bumping up the dose in a few days in .25mg increments (every 3rd day or so) until the sundowning disappears again. Using the lowest effective dose is the goal. Does anyone else know of a better way to find the least effective dose.

Best,
David

 
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Old 07-22-2012, 04:42 PM   #7
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Re: At home care, Bedtime

I use melatonin myself and at a much lower dosage than Mom. Yes you have to consider what is there to start with and the ability to use it... based on age and sleep pattern ect. As far as I now, there is no test for melatonin level. It is a trial and error method to find the right dosage. I would suggest using a single dosage for a while and not changing it every couple of nights. It takes longer than that to know what they dosage is going to do. With the natural fluctuations of dementia you have to look over time and not take an instant read.

Mom had walked for 2 years, day and night, sleeping in short naps before the Melatonin. In my opinion you don't catch up on sleep but you can start getting adequate sleep that will improve your physical and mental health.

I totally agree with you related to the antihistamines. Thirty years ago it was common practice to use antihistamines to induce sleep in the elderly and in children but we now know better. I also agree that pharmaceutical sleep aids are not appropriate. That is why I went the Melatonin route and I have been very pleased! I agree that starting with a smaller dosage and over time bringing up the dosage is the correct way to do it. With little information when I started, except common sense, I jumped in Just glad it worked well.

Love, deb

 
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Old 07-23-2012, 05:34 AM   #8
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Re: At home care, Bedtime

I buy Melatonin by "Now"...It is a powder in a capsule form, 3 mg, so I can easily take like a 1/3 out which would give my dad around 1.5 mg, give or take.(you can also buy empty capsules to make more out of what you had to empty out.)
I think I might start out with this amount for a couple of weeks and see if this helps, if not, move on to 2mg, etc....for the simple fact I don't want to sedate him too much or create a fall risk since each individual's system is different .

How do you make bath time less stressful on the caretaker (my mother)?
Dad will sit in his chair, not answer her when she brings this up, or, he will say "I'M not Dirty"...Then he gets agitated and says "I'M going to get out of this place", "I don't know why I came to this place ", etc...
I have brought a plastic wash tub (like in hospitals) into the living room and pulled the curtains and have cleaned him up that way, leaving his under garments on for my mother to assist him with sometimes later in the day.
This is a big problem and I was wondering if by giving him something like L-Theanine (supplement for anxiety) 30 minutes prior to getting ready for his "wash" if this might take the edge off somewhat...If anyone has used this supplement please comment on dosage.
Any suggestions for making bath time less stressful for my mom ???

We had even tried , even though it was a "lie" that dad had mentioned the night before that he wanted to get in and get cleaned up and that worked for a week or so then no longer..

Any tips or suggestions here ?

 
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Old 07-23-2012, 05:36 AM   #9
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Re: At home care, Bedtime

I buy Melatonin by "Now"...It is a powder in a capsule form, 3 mg, so I can easily take like a 1/3 out which would give my dad around 1.5 mg, give or take.(you can also buy empty capsules to make more out of what you had to empty out.)
I think I might start out with this amount for a couple of weeks and see if this helps, if not, move on to 2mg, etc....for the simple fact I don't want to sedate him too much or create a fall risk since each individual's system is different .

How do you make bath time less stressful on the caretaker (my mother)?
Dad will sit in his chair, not answer her when she brings this up, or, he will say "I'M not Dirty"...Then he gets agitated and says "I'M going to get out of this place", "I don't know why I came to this place ", etc...
I have brought a plastic wash tub (like in hospitals) into the living room and pulled the curtains and have cleaned him up that way, leaving his under garments on for my mother to assist him with sometimes later in the day.
This is a big problem and I was wondering if by giving him something like L-Theanine (supplement for anxiety) 30 minutes prior to getting ready for his "wash" if this might take the edge off somewhat...If anyone has used this supplement please comment on dosage.
Any suggestions for making bath time less stressful for my mom ???

We had even tried , even though it was a "lie" that dad had mentioned the night before that he wanted to get in and get cleaned up and that worked for a week or so then no longer..

Any tips or suggestions here ? sorry double post !!!!!

Last edited by DJ2041; 07-23-2012 at 05:41 AM. Reason: double posting

 
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Old 07-23-2012, 06:17 AM   #10
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Re: At home care, Bedtime

Bath time can be challenging.... not only for you but for them. Their time line is confused so they may truly think they have just had a shower, rather than a shower days ago. If you ask if they want a shower... they may not understand exactly what you want them to do which is frustrating and you get a no. The experience of showering may confuse or scare them because they can no longer follow all the steps. Discussing the upcoming shower only makes it worse. If somebody can in and started taking your clothes off, and you didn't know why, how would you react? Not to mention the physical discomfort of being cold and wet.

For best results chose the time of day that Dad normally took a shower. My Dad (who acted just like yours) showered as soon as he woke up. While he was still in the bathroom, before dressing in the morning, I started by warming up the bathroom and then turning on the water. The chore was well underway if I didn't have to take off his clothes. Just insert the shower between taking off the pajamas and dressing. I would encourage him to help me as much as possible. I never talked about "taking a shower" but went through each step with him. First we take off one piece and when that is done going on to the next. I always put a towel over his shoulders. With the poor peripheral vision he thought it was a robe and that eliminated much of the modesty. I didn't have a problem with that towel going in the shower with him. We could wash under it and it also kept him warmer. I have even left his boxers on. You can wash him with those on as well. Make sure the room is very warm and the water the right temp before he gets in. By having the shower water running before he gets in, you warm up the cold tiles. They hate discomfort. I also put a towel on the floor (also prevents slipping) when he was standing and one on the shower chair when he was sitting. I let Dad hold the rag. Sometimes I would have to "help" by guiding his hand but he always responded better if his hand was telling his brain what was happening. I always used a hand held shower head. It makes it SO much easier. I let him hold it a lot. We both got a shower sometimes but that is ok Once done, turn off the water and hand him a dry towel. Let him help again. Getting clothes on is rarely as much trouble as getting them off. I have also slipped a shower in while getting him ready for bed but that is the sundowning time and it never worked as well as early in the morning

Remember to eliminate all discomfort and respect the emotions they are feeling. Fit the shower into his routine where it was previously or chose a time when he is changing clothes anyway. Make it as familiar as possible encouraging him or guiding his hand to "help". Understand the cognitive losses that makes this task so confusing and frustrating for them. Try to put yourself in their mind set because they are reacting just as you would (though amplified by this disease) if you were in a situation that you didn't not understand. Above all keep a smile on your face and stay calm. They will pick up on your emotions quickly and if you are frustrated, they will follow you into that frustration.

If the shower is successful today... great. If not please do not argue and make a big deal out of it. Try again tomorrow. It took a while for me to get the shower thing worked out with Dad. You try something and if it doesn't work you try something else. But eventually it was a rather simple process... as long as I caught him first thing in the morning before the pants went on!

Love, deb

 
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Old 07-23-2012, 11:53 AM   #11
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Re: At home care, Bedtime

Deb,
Thank you....This is the biggest issue and will try what you suggested.

 
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Old 07-24-2012, 05:57 AM   #12
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Re: At home care, Bedtime

I tried to use melatonin to sleep but it is not strong as the cold/sinus night medicine.
Do I have to get used to it for a while before it works on me?

Nina

 
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Old 07-24-2012, 06:24 AM   #13
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Re: At home care, Bedtime

Nina, the two are very different. Melatonin increases your natural Melatonin levels which leads to a natural sleep. You may need to adjust the dosage and use it with some regularity for a while before your Melatonin levels stabilize where you can get a good night's sleep. It is a naturally occurring substance that we all produce... so taking it will enhancing the sleep cycle in a natural way.

Cold/Sinus night time medications contain antihistamine. One of the side effects of this mediation is sedation. It's not a natural sleep but a sedative. Sure it is stronger and more effective but it is not good to take this on a regular basis. It is also not recommended for the elderly to use Antihistamine for sleep.

Love, deb

 
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Old 07-26-2012, 06:03 AM   #14
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Re: At home care, Bedtime

Quote:
Originally Posted by ninamarc View Post
I tried to use melatonin to sleep but it is not strong as the cold/sinus night medicine.
Do I have to get used to it for a while before it works on me?

Nina
As Deb said Cold/sinus night time medications are not the way to go for achieving "natural" sleep .

Look on the back of the box at "warnings", "do not take if" .

Like Deb said it can cause marked sedation and confusion in the elderly.

I believe we need to look for the reason we are having problems such as insomnia, difficulty staying asleep, etc...
Perhaps it is a side effect from a medication , maybe stress, anxiety, etc..
Prescription and OTC sleep aids are only like putting a band aid on a cut, it only covers the problem .

Melatonin is a hormone that is secreted from the pineal gland, it tells us when to sleep , how long to sleep, and when to wake up. These levels decline as we get older, thus could be the reason we start having problems with falling to sleep, staying asleep and too early morning awakenings .
Melatonin can also decrease if we are under alot of stress.
I have a good book that suggests you take a good b-complex each morning as Melatonin will be more effective. The b-complex should energize you during the day, the Melatonin relaxes you, so take the Melatonin about an hour before bedtime.
This book recommends starting with 1mg Melatonin nightly, if this does not help after three weeks , work your way up, add 1 mg every three weeks until you reach 3mg..(she does not recommend a higher dosage)

The book "24 hour Pharmacist" Mentions that Melatonin has been tied to Asthmatic attacks , so if you suffer with Asthma, especially night time Asthma , stay away from it altogether.

Another good but can be a little costly supplement, 5-HTP, a precursor to Serotonin, a hormone that lifts Depression, elevates mood, and promotes good sleep-it occurs in your body naturally, but you can also take it as a supplement. You get a double benefit because it goes on to make both Serotonin and Melatonin.
Recommendations: Start with 50 mg around supper time , and after a week increase to 100 mg or 150 mg if necessary. Do not take with any antidepressants..

 
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Old 08-05-2012, 01:31 PM   #15
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Cool Re: At home care, Bedtime

Quote:
Originally Posted by Gabriel View Post
It is me that is a huge fan of Melatonin. My Mom was a night time wanderer. She actually walked day and night with only short naps along the way. She started on the Melatonin a couple of years ago. We plowed right in with the 5 mg. It either works or it doesn't and you will know soon enough. She gets her dosage every night at 9 pm and is put in bed between 9:15 and 9:30. It works rather quickly The first week we didn't see a huge difference but we keep on the routine and it was not long before she was going to bed by 9:30 and sleeping well throughout the night. I also saw a reduction in her late afternoon and evening Sundowning. Yes, every night. By doing it consistently it will boost her natural circadian rhythm. She has been on it about two years now and we have had no more problems with consistent night time rambling. Yes, she does get up infrequently but I will take those few night over the every night pattern we were on.

Love, deb
Hey Deb,

Thanks for sharing all of your experience. It sounds like your primary reason for trying the melatonin was to see if it would help with the wandering, particularly at night? Luckily I don't have that problem with my Mom (yet?). However, I am wondering the following in your experience.
1) Did/does your Mom have issues with asking about her parents as if she just saw them yesterday even though they may have passed?
2) Wondering where her little kid(s) are and if they are all right (e.g. thinking that you are small and not grown)?
3) Any other memory/identity issues like 1 and 2 above?
4) If so, did you see any improvement in these types of issues with the melatonin supplementation in addition to the improvement in sleep cycle and wandering? What other dementia related symptoms other than the wandering have you seen that you feel you can attribute to the melatonin.

Melatonin is supposed to help some people with sundowning symptoms, but those symptoms can be broad indeed and include wandering as well as mistaking identity, living in the past etc.

And for the poster who cautioned Melatonin's use with asthma, I will tell you my experience of the past 4 months of my personal melatonin use. I was diagnosed with intrinsic, adult onset asthma in 1996 at the age of 36. Worse in the middle of the night. The only real relief I finally achieved was either with oral prednisone during the time I took it(short term use of 2 weeks every few years) or finally Advair in 2005. However, for me, who has always been kind of a fitfull sleeper since childhood, my current .25 mg dose of melatonin has stopped my daytime dry cough that persisted even with the Advair. I have put on about 10 lbs and people comment about how much better I look. I am going to attempt to wean off the Advair in the coming months. I will let you know how that goes. My point is that asthma can have multiple causes. This preliminary accidental benefit of melatonin for me (the only variable that changed) , better sleep, seems to be targeting a main reason for MY asthma. That and the fact that it apparently has smooth muscle relaxing properties.

TIA and Best,
David

 
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