[Blindtlk] ernestly seeking advice about sleep irregularities

Tue May 25 17:07:40 UTC 2010

Robert,

Like others here, I have been somewhat skeptical of the connections some have made between sleep difficulties and blindness.  Rather than going on and on 
about that, though, please let me make two points.  First, I have seen obvious sleep disorders such as apnia overlooked because a doctor got all excited about 
studying a real live blind person's sleep patterns.  Whether there is anything to blindness and sleep disorders, don't let a sleep center or doctor lock into your 
blindness without making sure they cover all of the bases first.  

Regarding melatonin, I took that for a while because I wasn not sleeping very well.  While melatonin helped me sleep, I began noticing other side-effects.  When I 
went to the internet, I found some information regarding melatonin side-effects on the Mayo Clinic web site and what they described was exactly what I was 
experiencing.  I found that I was drousy during the day, but more important, I experienced nightmares such as I had not had since I was a child, and occasionally 
tasks that I normally performed easily seemed very complex.  My point here is that melatonin might be the answer, but don't believe the advertisements that tell you it 
is just replacing what your body used to produce and is therefore harmless.  For many it can be the perfect solution, and the amount you take can have an effect, 
too, but it isn't perfect for everybody.  I stopped taking it.  Three hours just isn't enough sleep for most people, though, so I would seek out a sleep center or 
something to see if they can help.

There are other things to keep in mind as well.  Coffee may not make you more alert during the day, but if you drink a lot of coffee or other similar beverage, including 
many soft drinks, they could prevent you from sleeping well.  Exercise too close to bedtime can interfere.  For some people, sugar can also interfere.  That bowl of 
icecream before bed may be a bad idea.  Some alcoholic beverages for some can help you get to sleep but cause you to be awake later.  It is very complicated.

Best regards,

Steve Jacobson

On Tue, 25 May 2010 09:13:24 -0400, Marion Gwizdala wrote:

>Dear All,
> FYI, I received a message from someone claiming to be a representative of 
>Vanda Pharmaceuticals asking that I circulate a message seeking totally 
>blind participants in a sleep study research project. This person claimed 
>that they were "donating $25, up to $50,000 to organizations service the 
>blind. When I asked which organizations, they asserted that the NFB was one 
>of the organizations. I spoke with Monica Blount at the national office 
>yesterday and she said she was unaware of any such arrangements but would 
>check it out and get back to me. I haven't heard anything yet.

>Fraternally yours,
>Marion Gwizdala, President
>National Association of Guide Dog Users
>National Federation of the Blind
>813-598-7161
>President at NFB-NAGDU.ORG
>HTTP://NFB-NAGDU.ORG

>----- Original Message ----- 
>From: "Graves, Diane" <dgraves at icrc.IN.gov>
>To: "'Blind Talk Mailing List'" <blindtlk at nfbnet.org>
>Sent: Tuesday, May 25, 2010 8:32 AM
>Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities

>> Hi Pete,
>>
>> I would tend to agree. I think that, when a person is blind, there is a 
>> tendency to want to relate almost any problem they have to blindness. This 
>> is true of medical concerns as well as others. It' just like the blindness 
>> is the only thing they see.
>>
>>
>>
>> Diane Graves
>> Civil Rights Specialist
>> Indiana Civil Rights Commission
>> Alternative Dispute Resolutions Unit
>> 317-232-2647
>>
>> "It is service that measures success."
>> George Washington Carver
>>
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>> -----Original Message-----
>> From: blindtlk-bounces at nfbnet.org [mailto:blindtlk-bounces at nfbnet.org] On 
>> Behalf Of Peter Donahue
>> Sent: Monday, May 24, 2010 8:20 PM
>> To: Blind Talk Mailing List
>> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>>
>> Good evening everyone,
>>
>>    The whole idea of blindness effecting one's sleep cycles is something I
>> find distasteful! I had trouble sleeping when I was growing up and no one
>> offered to investigate further It was only after an unfortunate incident 
>> at
>> the 2001 national convention that lead to the proper diagnosis of my Sleep
>> Apnea. It was too little too late! People probably figured that blindness
>> caused one to have irregular sleep patterns ignoring the fact that there
>> could be bonafied  underlying sleep disorders. Now that my Sleep Apnea is
>> being properly treated I feel great and things are much better. I just 
>> wish
>> it could have been discovered when I was much younger.
>>
>>    It is for this reason that I'm very concerned about these sleep 
>> research
>> projects being done on blind persons to determine if blindness does indeed
>> effect one's sleep-wake cycles and the rest. I'd like to know if routine
>> sleep studies are done on these folks to rule out sleep disorders before
>> these researchers persue their whims. If they're failing to do this their
>> research is definitely flawed and blind people with undiagnosed sleep
>> disorders will pay the price. For that reason this house won't go near 
>> them
>> with a ten-foot pole!
>>
>> Peter Donahue
>>
>> ----- Original Message ----- From: "Alan" <awheeler at neb.rr.com>
>> To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
>> Sent: Monday, May 24, 2010 4:39 PM
>> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>>
>>
>> Very good idea. I can speak from experience on the sleep apnea.
>>
>> ----- Original Message ----- 
>> From: "Cindy Handel" <cindy425 at verizon.net>
>> To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
>> Sent: Monday, May 24, 2010 4:21 PM
>> Subject: Re: [Blindtlk] ernestly seeking advice about sleep irregularities
>>
>>
>>> Have you talked with your doctor about this?  You could have sleep apnea
>>> and
>>> need some treatment for the condition.  I'm not sure that you can
>>> automatically connect your difficulty in sleeping to your blindness.  I'd
>>> suggest that you speak with a doctor about it.
>>>
>>> Cindy
>>> ----- Original Message ----- 
>>> From: "Robert J Smith" <rsmith247 at csc.com>
>>> To: <blindtlk at nfbnet.org>
>>> Sent: Monday, May 24, 2010 4:11 PM
>>> Subject: [Blindtlk] ernestly seeking advice about sleep irregularities
>>>
>>>
>>> Hi all.  I am a person who is totally blind with prosthetic eyes.  You
>>> will see why I mention this right at the beginning later in this message.
>>> I am ernestly seeking advice from other totally blind persons who suffer,
>>> or have suffered from sleep irregularities.  I take Melatonin which helps
>>> the problem somewhat but it could be better.  Without Melatonin, I would
>>> sleep for two maybe three hours per night, wake up, and stay awake the
>>> rest of the night.  With Melatonin, I sleep about five hours a night but
>>> still get sleepy sometimes during the day.  Any ideas as to how I can
>>> improve my alertness during the entire day?  Cafinated coffee doesn't do
>>> it.  I can sit and yawn and get drowsy while drinking it.  I take one
>>> Melatonin tablet at night.  Should I possibly take two?  Should I take
>>> something to keep me alert during the day instead of focusing on the
>>> night?  I am open to all suggestions!  Of course I know that nobody can
>>> prescribe anything on this list.  I have heard that blind persons who 
>>> have
>>> no light perception have been known to have sleep irregularity problems.
>>> This seems to follow with me because when I was a kid I had light
>>> perception.  I would sit in front of a lamp in my bedroom when doing my
>>> homework first to be just like my sighted younger brother when he did his
>>> homework, second because I liked actually seeing something since I had
>>> both real eyes at that point.  When I was a kid, I did not have sleep and
>>> alertness troubles.
>>>
>>> Thanks much in advance,
>>>
>>> Robert Smith
>>>
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>>
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