[Phyl]

I was diagnosed with insomnia in 1976 with Dr. Peter Hauri (very well known sleep psychiatrist) after 3 days at Sleep Clinic. I have been on sleeping pills almost constantly from 1976 until today April , 2019. I cannot fall asleep without a Temazepam. I tried everything that you might suggest. I read so many books. I write to doctors throughout the US, looking for help. I have an amazing internist who doesn’t know the first thing about insomnia. They receive about 6 hours of training in “sleep”.

I cannot get up and go to another room and do a mindless activity until I get sleepy. I never GET sleepy. I am always tired/exhausted. I also was seen by Dr. Quentin Regestein in Boston, who is supposed to be the man who knows the most about the mechanics of sleep. He could not help me. Many people have bouts of insomnia — not full blown, years-long insomnia. My problem is genetic since my son suffers the exact same fate.

My insomnia is of unknown etiology — I am not depressed, stressed out, unhappy. I just cannot sleep. In the past few months, I fall asleep almost immediately after taking a pill (something that NEVER happened in my life before). I hardly am on the pillow when I fall asleep, but I wake up many times during the night — I barely sleep an hour or so and am awake.

I am trying to find out what is going on in my brain. I would like to have a sleep study done when I have not taken a Temazepam and one taken when I DO take a Temazepam. I would like them to study my brain because I feel all of these years of taking pills has probably changed the brain. I do not want my son to suffer another 35-40 years, either.

Sleep clinics do not help me. They help only those with apnea, restless legs, etc. I have none of those “measurable” problems.

My sleep “system” is totally broken. I am always exhausted but manage to look fine and to get through each day ok.

Wish me luck finding someone, some place that will admit me to study me for two nights. I want to know what is going on in my brain after all this time.

I am a very healthy 90 year old. I see my internist once/year. I take blood pressure medication. That’s it. I am not a hypochondriac or a complainer.

I cannot sleep. Do you know what fatal insomnia is? I feel, sometimes,that I have a subset of that horrible condition which, I know, is extremely rare.

Good luck to all of you.

[jazzcat22]

Hi there, I don’t have any suggestions per se since I haven’t made much (okay, let’s be honest)—any!) progress in the nine months I’ve had insomnia. Like you, my biggest problem is not getting sleepy. I also have found that doing mindless activities don’t make me sleepy. There’s a podcast called Sleep With Me where a guy rambles on for an hour in a monotone, telling long-winded stories. I get bored—but that’s not sleepy! Yesterday, even after a week of three hour a night sleep, I couldn’t fall asleep at all. Was up the entire night. Didn’t have an urge to even take an afternoon nap, although I did fall into a microsleep for a few seconds.

Unlike you, Temezepam didn’t make me sleepy, nor do the sedating antidepressants. For years Benadryl caused sleepiness; not any more. And I’ve tried every supplement. I’m now trying CBTI.

Yup, it does sound like yours has a genetic componenet—but it’s not the fatal familial thing, at least, since you have survived for so long. I am encouraged reading about you dealing with it for so many years. You talk about changes in your brain, but you certainly seem sharp and articulate to me, more so than any other 90 yo I’ve “known.” I’m just hoping my brain can stay intact like yours (I’m 65).

I went to a sleep doctor and was just told to do a sleep study. First of all, I’ve never been someone who easily falls asleep in strange places. I’m quite sure I’d be awake all night in a sleep lab. I’d need to be drugged quite heavily. The doctor suggested that I could have restless legs (not likely–my cat wouldn’t cuddle all night, my husband would tell me, and I’m self aware enough with all the yoga and meditation I do to know) or sleep apnea. No way! When I do sleep, for even just five hours, it’s very restorative sleep. But I just can’t get those five hours easily or without attempting to drug myself and take supplements, which makes me feel worse the next day with a hangover.

It would be wonderful if you could participate in some sleep studies, but I’m not sure there is that much pure research—just a couple of projects investigating new sleep meds:

https://www.centerwatch.com/clinical-trials/listings/condition/169/sleep-disorders/

And some studies may exclude you just due to your age. I know how that goes. My internist said that sleep just changes/gets bad as we age. Change, yes. Severe soul-crushing, mind-numbing, body-fatiguing insomnia? No. It’s not just a function of age. Too many over 60s sleep just fine, even though it’s known that a 70 yo only has 25% of the melatonin of someone in their 20s. Years from now there may be ways to test for neurotransmitters like GABA and adensoine—and treat any deficits, but we are definitely not there yet.

As I said, I can’t offer you any concrete help, just wanted to reach out and have you feel not quite so alone as the majority of the world enjoys restful nights of sleep. You’ve given me hope that as Martin says, people can be healthy mentally and physically on broken/limited sleep.

[Martin Reed]

Welcome to the forum, Phyl — and I am so sorry to read about your long-term struggles with sleep.

You mentioned that you were diagnosed with insomnia in 1976. Before this diagnosis, what was your sleep like? Were you struggling with sleep before 1976?

You mentioned that you feel very tired and fatigued but rarely feel sleepy. At the present time, what is your cue for going to bed? Do you go to bed at a certain time, or do you try to wait until you have a sensation of sleepiness?

Can you tell us a bit more about your current sleep pattern or habits? When do you normally go to bed at night, when do you normally get out of bed to start the day, and roughly how many hours of sleep would you say you get on a “typical” night?

I know you have sought a lot of advice about insomnia over the years, but I think it would be prudent to ask this anyway — have you tried implementing any cognitive behavioral therapy for insomnia (CBT-I) techniques?

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[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

[Martin Reed]

Hello again, Philomena!

You mentioned that your sleep was fine before you saw Dr. Hauri. What triggered you to see Dr. Hauri?

Sleep disruption during (and after) pregnancy is quite normal so this is likely why nobody was concerned too much by this.

You mentioned that you don’t think you get much REM sleep. Why are you concerned about how much REM sleep you may or not be getting?

When you wake during the night to use the bathroom, does it usually take you a long time to fall back to sleep?

You said that you feel like you probably get around four hours of sleep on a typical night. When do you normally go to bed at night, and get out of bed to start your day in the morning? You mentioned going to bed at 9:00 PM and waking by 3:00 AM (a six-hour sleep window) but you are concerned that 3:00 AM is too early to start your day. So, have you tried delaying your sleep window so it starts and ends a bit later?

There is no CBT-I rule that says you need to fall asleep within 20 minutes, an hour, or any period of time. How long did you try CBT-I before deciding it wasn’t working, and what specific techniques were you implementing?

I agree that more needs to be done to spread awareness about insomnia and the best treatment option available (which is, for the vast majority of people with chronic insomnia, CBT-I).

—

If you are ready to stop struggling with insomnia you can enroll in the online insomnia coaching course right now! If you would prefer ongoing phone or video coaching calls as part of a powerful three month program that will help you reclaim your life from insomnia, consider applying for the Insomnia Mastery program.

The content of this post is provided for informational and educational purposes only. It is not medical advice and is not intended to diagnose, treat, cure, or prevent any disease, disorder, or medical condition. It should never replace any advice given to you by your physician or any other licensed healthcare provider. Insomnia Coach LLC offers coaching services only and does not provide therapy, counseling, medical advice, or medical treatment. All content is provided “as is” and without warranties, either express or implied.

[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

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