[Phyl]

I went to Dr. Hauri because I was not sleeping a all and I was working. I was
getting more and more affected by lack of sleep. I was a private secretary and
became very aware that I was not as alert and as competent as I had always been.
So I requested thatI go to a sleep lab. In both sleep studies, i woke up about
26 times. Dr. Hauri explained that I never got to REM sleep and told me that
was the restorative time of sleep. I am not concerned about REM sleep, just
aware.

The incessant waking up to use the bathroom is somewhat new — maybe a year. I
didn’t wake up for that purpose before then; I always had a major problem of
falling asleep, remaining asleep. I had horrible sleep. I would crawl under
tables, under the piano, I would use a sleeping bag — any new “place” where I
might fall asleep. I counted by threes up to thousands to tire my brain. And
this went on for years.

As I said, my sleep has taken a different path. Now I fall sleep very fast but
wake up every hour or two. And now I can fall asleep again. This is new!

I cannot change my sleep window. I am so exhausted/tired at 9:00, I cannot stay
up. I’m too tired to read, to do anything. If I go out and come in late (not
too often),I am ok and can fall asleep.
I can actually remember ONE TIME when I slept 7 hours. I was SO excited, I
think I woke up the family with my announcement. I cannot recall sleeping 8
straight hours. It’s fractured sleep.

When I tried the CBT, I was not falling asleep quickly (as I mentioned, that is
new for me). So when I attempted CBT, I couldn’t follow it because it took me
hours to fall asleep. And you are supposed to get up after 20 minutes or so, so
how could I do it. And at that time, I probably was not going to bed at 9:00;
I’m not sure. I tried it one night and it was disastrous. I never tried it
again.
I knew it would not work for me.

Read INSOMNIAC; it did not work for Gayle Greene who wrote that wonderful book.

This was the procedure called CBT that was “new” when I was asked to try it. And it was the same procedure a sleep clinic asked my son o try. How could this have worked for me?

Do not use your bed for anything except sleep; that is, do not read, watch TV, eat, or worry in bed. Sexual activity is the only exception to this rule. On such occasions, the instructions are to be followed afterward when you intend to go to sleep.2.If you find yourself unable to fall asleep within about 15-20 minutes, get up and go into another room. Since I do not want you to watch the clock, just estimate how long you have been lying awake. Remember, the goal is to associate your bed with falling asleep quickly! Return to bed intending to go to sleep only when you are verysleepy, or after a predetermined amount of time (__________).3.While out of bed during the night, you can engage in quiet, sedentary activities (e.g., reading, TV viewing, etc. –but make sure content of such is not too engaging or activating). Do not exercise, eat, smoke, or take warm showers or baths. Try not to fall asleep when not in bed.4.If you return to bed but still cannot fall asleep within 15-20 minutes, repeat step 2. Do this as often as necessary throughout the night.Instructions slightly modified from Bootzin& Perlis. Stimulus Control Therapy in Perlis et al. BeStimulus Control Instructions1.Do not use your bed for anything except sleep; that is, do not read, watch TV, eat, or worry in bed. Sexual activity is the only exception to this rule. On such occasions, the instructions are to be followed afterward when you intend to go to sleep.2.If you find yourself unable to fall asleep within about 15-20 minutes, get up and go into another room. Since I do not want you to watch the clock, just estimate how long you have been lying awake. Remember, the goal is to associate your bed with falling asleep quickly! Return to bed intending to go to sleep only when you are verysleepy, or after a predetermined amount of time (__________).3.While out of bed during the night, you can engage in quiet, sedentary activities (e.g., reading, TV viewing, etc. –but make sure content of such is not too engaging or activating). Do not exercise, eat, smoke, or take warm showers or baths. Try not to fall asleep when not in bed.4.If you return to bed but still cannot fall asleep within 15-20 minutes, repeat step 2. Do this as often as necessary throughout the night.Instructions slightly modified from Bootzin& Perlis. Stimulus Control Therapy in Perlis et al.

I also know about sleep restriction.

I think that I have gotten this far and I will just continue to live with the problem.

I might go for another sleep study but how many years am I going to be around, to be honest? I’m pretty healthy, really. I know what is going on. I look around me and I see people 20 years younger who are not as healthy, so I have a lot to be thankful for.

I was seen by the best people. Dr. Hauri passed away just a few years ago. He was asked what advancement he had seen in his 55 years of treating sleep/insomnia problems. He admitted that nothing really had changed (for insomniacs) except for the use of sedatives. He also said insomniacs needed to unite (as I mentioned before) and demand research, as happened with AIDS and breast cancer.

I know about sleep restriction. People who are 90 sleep a lot anyway; they aren’t told to restrict their sleep. I’m in that category, Martin.

Take care.
Philomena

[Phyl]

Hello, Martin

Thanks for reaching out.

I was fine before having to go to Dr. Hauri. I was ok for the first 45 years of
my life. I was never aware of any sleep problems.

My husband always stayed up until 2:00 a.m., and I adopted that same routine.
He did that his entire life. If our phone rang at midnight, we would not have
been phased by it. I was fine and got up at 7:00 a.m.every morning. I have
never needed to have an alarm clock. I think my brain just registers the time
for me. As time went on and I had children, I didn’t stay up until 2:00 am with
him on a regular basis. I was usually in bed at 11:00 or 11:30.

I have a theory that my sleep problem might be due to a depressive gene. The is
depression in my family background. I did go through a pretty stressful period
at about that time — in the l970’s. I also had one short period of insomnia
when I was pregnant with my second child. It lasted about 2 or 3 months and I
think it ended shortly after my daughter was born. That was in 1959. It was
noted, but no one was concerned about it.

I would guess that most nights I get a total of 4 hours of sleep. If I get a
continuous four hours, I can manage but I’m tired. (I’m always tired.) I might
even make it to 5 hours, but it’s in small increments. Even 6 hours, but in
“pieces”. (I can be awake for a solid three hours “in between”.) I don’t think I
get much REM sleep. In the last year or so,I get up many times to use the
bathroom,but this is common. My internist wants me to see a urologist, thinking
my sleep will improve. But I didn’t sleep when I didn’t have to get up 6 or 7 or
more times as I do now. And, yes, I don’t drink water 3 hours before I go to
bed.

So, if I go to bed at 9:00 and can get 4 or even 5 hours of interrupted sleep, I
am awake at 3:00. Too early to begin the day. I usually just lay down until
about 5:00 and then come downstairs.

I have tried CBT, but it didn’t work for me. I NEVER fell asleep within the
first hour, let alone 20 minutes. I was sometimes awake for several hours and
at other times, I had no sleep. So for me, I was walking up and down the stairs
all night. I’m not SLEEPY; I’m tired. So I could not “read” until I felt
sleepy, or do anything.

Martin, a lot has been done for people with sleep problems. But there is really
nothing yet for insomniacs. That is the honest truth. Who is counting us? Who
knows where or who we are. if I didn’t tell my internist I don’t sleep, he
wouldn’t know. Do internists even ASK their patients how they sleep? I doubt
it. If you look at any sleep clinic (and many list “insomnia”), none of them
TREAT insomnia. They pretty much all talk about apnea, restless legs –
measurable problems they can see on the scan. My son was so sure that CBT might
work for him. He really stayed with it, but it didn’t work. He suffers like I
do.

They can only give true insomniacs sleeping pills. If there was am “INSOMNIA
center”, I would be there immediately. Even a SLEEP/INSOMNIA Center would pull
me in.

I have been reassured, though, that sedatives slow down but do not degrade the
brain. That was good news to me. I’ve made it to 90 years old, so I’ve done all
right.

“WE” just need to be counted. Maybe they can add a box to the ballot and ask:
Roughly, how many hours of sleep do you get every night? Then that count can
be sent to one of the Big Pharms who might then spend the money to research our
problem and come up with a cure. OR, we could suggest that ALL Sleep Clinics
send the data on insomniacs to a data base. I guess you’d have to clarify the
term: Start with: Poor sleep for two years, maybe.

What do you think?

I’m ok, Martin.

Take care, and thanks for asking about me. You have a very active forum, and
are doing a good job!

Philomena

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