[Blindtlk] chalking everything up to blindness

[Jewel S.]

Not every person is going to have melatonin imbalance, and not only
blind people have this problem. I have had delayed sleep phase
syndrome since I was very little. My parents told me that they would
often find me wide awake in the middle of the night even when I was
still in a crib, and sleeping a lot in the daytime. I was not born
totally blind, and even now, I have plenty of light perception that
it's obviously not that (light perception in one eye, no peripheral
vison, but enough that I can tell  when it's day or night).

Delayed Sleep Phase Syndrome is caused by the delayed production of
melatonin. Most bodies produce melatonin around noon so that they
start to get tired around 9pm. With DSPS, the body doesn't produce
melatonin until afternoon or even evening. This can be helped by
taking melatonin pills. But it doesn't help everyone. Blue lights have
been shown to help some people, also. Neither helps me, however. I can
go on a "normal" schedule (asleep at midnight, up at 8am) for 6 months
or so, then I have to "restart" my body. I do this by not going to bed
for 36 hours straight. By this time, my body has the melatonin flowing
and I am utterly exhausted, so I sleep, and my body produces the
melatonin at the right time for a bit, slowly slipping over the six
months...then I have to start all over again. It can be very
frustrating, since my normal sleep cycle is 4am to noon, but
restarting my body every six months has proven do-able and effective.
Only problem is finding the time to do the restart, because as the day
wears on, my mind starts to fuzz, and I can't work or do studies. I
try to work it on a weekend (Saturday night, Sunday), but it doesn't
always work that way, and sometimes I think I'm cured.

Something that helps me keep to the "normal" schedule for 6 months at
a time is to have a set schedule in mind. I *always* eat between 7 and
8pm. I *always* lay down at 10pm, at which time I cuddle with my cat,
read a Braille or audio book, or listen to music or a movie. And I
*always* take more drastic measures if I'm not asleep  by 11:30pm,
such as ice pack to the eyes, Benadryl (especially when the reason I'm
not sleeping is allergies), or a pain killer or ice pack for my back
or neck if it's pain keeping me from sleep. I am almost always asleep
by midnight, though at the end of the six months, I start to slip.

As you can see, I've been dealing with this condition and the
consequences all my life. In junior high and high school I was given
permission to sleep during class if I had done my work already *(I
often did the work for the next day the night before) or as long as I
could answer questions. I had a method of sleeping only just, still
listening to th e lecture...almost dreaming the lecture. If the
teacher called my name, I'd pop my head up, answer the question
(usually correctly), and go back to sleep. Of course, this was morning
classes only. By lunch, I was expected to be fully awake.

For anyone having sleep delay such as this, please feel free to write
to me. A sleep study is very hard to do for this condition, as 1) the
sleep is not at the same time as sleep studies are usually done, and
2) it's not a matter of sleep disturbance...the body sleeps just fine,
just at the wrong time. As a kid, I was diagnosed by a sleep
specialist reviewing my sleep log and interviewing me and my parents
about my sleep cycle. Schedules, routines, and diet were reviewed as
well, to rule out any possiblities like too much caffiene in the
evening (which could've been for me, since I drank a lot of Mountain
Dew to keep awake in the daytime, but never drank it at home) or high
sugar content in dinner meals or such.

My two cents,
Jewel

On 5/26/10, Aziza Cano <daydreamingncolor at gmail.com> wrote:
> Hi Bob,
> Why is it that some totals who have been blind since birth do not have
> problems sleeping. Myself for example can keep a pretty decent sleep
> schedule.
>
> Aziza
> ----- Original Message -----
> From: "Robert J Smith" <rsmith247 at csc.com>
> To: <blindtlk at nfbnet.org>
> Sent: Tuesday, May 25, 2010 8:31 AM
> Subject: [Blindtlk] chalking everything up to blindness
>
>
>> Hi all.  I definitely agree that there is a tendency for health
>> professionals to chalk problems up to blindness, but I believe in the case
>> of sleep irregularities, there is solid evidence that shows that the brain
>> actually needs to see light to keep its day and night cycles regulated. As
>> I understand it, when the brain sees light, the production of melatonin
>> which causes a person to sleep is held in check.  When a person is in the
>> dark, then melatonin is produced, causing sleep.  If a person does not see
>> light at all, to the brain, the person is then in a perpetual night
>> surrounding so melatonin could be produced at inappropriate times causing
>> drowsiness during those times.  Possibly the taking of Melatonin
>> externally, regulates this a little more.
>>
>> Bob Smith
>>
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