Semi OT - Trying to Fix Fragmentation

[JDS74]

A new experiment in segmented sleep

Well I’m off again in another experiment to see if by deliberately segmenting my sleep hours, I can eliminate a much worse fragmentation of my sleep. Typically, I sleep for about 1½ to about 2½ and then come fully awake. After that, the night looks like waking up every 30 to 75 minutes until I get up in the morning. This is a non-apnea problem for which I have been seeking a solution for the last 14 years without much success. The number of times I wake up each night varies from a low of 5 in eight hours to a max of 17 in that same time period (that night I was taking my blood pressure each time I awoke and counted the number of measurements the next day.)

I do notice that for this first period, the sleep is pretty normal and serene and only after the first time, do all the CA’s and Hypopneas kick in so my average AHI for the whole night for this last year was about 7.6 – pretty much a lousy number.
I remember seeing a TV program that discussed the idea that people used to have normally segmented sleep prior to the invention of the electric light and they would go to be about dusk, wake up in the middle of the night and work, read, etc. and then go back to bed until dawn. This process was called first sleep and second sleep. Here is a reference to some discussion on the topic.

http://www.history.vt.edu/Ekirch/sleepcommentary.html

Last night, I decided to try it for myself to see if my overall quality of sleep could be improved. Pretty much as normal, I woke up two hours after going to sleep, and go up to check my numbers. The first two hours recorded and AHI of 4.3. Read a while and then back to bed for another 6 hours. AHI for the 6 hours was 7.9 but the first 45 minutes of the second session had an AHI of 0.0 very similar to the first part of the initial two hours.

So I got pretty good sleep in the first sleep period and for the beginning of the second sleep period. My speculation is that something happens about the start of REM sleep that triggers something that wakes me up. So maybe if I just get up each time I wake up instead of going back to sleep (my sleep latency is about 3 minutes), then maybe I can stitch together enough “good sleep” to have a restful night.

Anyway that’s the next part of the segmented sleep experiment. I’ll report on the progress.

[M'ohms]

Thanks for sharing your journey. We are anxious to find out what's going on, but probably not as much as you!

[jnk...]

Some of the more common causes of what you describe, just as food for thought--although I am very sure that you, JDS74, are just as aware of all these as I am, if not more so:

Chronic pain
Medical treatments for chronic pain
Consuming caffeine in any form past noon
Having more than one alcoholic drink a day, or consuming that drink too close to bed time
Daytime napping
Having a clock visible in the room during sleep
Mentally keeping track of something at night (like hours slept, AHI, blood pressure, etc)
Light, noise, or temperature being at less than optimal levels in the bedroom (sleep masks and ear plugs can do wonders)
Getting less than the amount of needed physical exertion during the day
Depression/worry
Treatments for depression/worry

http://www.mayoclinic.org/diseases-cond ... q-20057824

[JDS74]

Some of the more common causes of what you describe, just as food for thought--although I am very sure that you, JDS74, are just as aware of all these as I am, if not more so:

Chronic pain
Medical treatments for chronic pain
Consuming caffeine in any form past noon
Having more than one alcoholic drink a day, or consuming that drink too close to bed time
Daytime napping
Having a clock visible in the room during sleep
Mentally keeping track of something at night (like hours slept, AHI, blood pressure, etc)
Light, noise, or temperature being at less than optimal levels in the bedroom (sleep masks and ear plugs can do wonders)
Getting less than the amount of needed physical exertion during the day
Depression/worry
Treatments for depression/worry

http://www.mayoclinic.org/diseases-cond ... q-20057824

Thanks JNK, I indeed am aware of all of those issues with sleep hygiene. The only one that applies to me is the clock at night but I don't have a good angle from lying in bed so I don't think it is part of my problem. I've been sleeping with the same clock for almost 40 years now and this current problem is only 14 years old

As for the others, no caffeine at all, no alcohol at all, no depression nor any depressive meds, no naps during the day (found out the hard way how bad that was), etc.

[JDS74]

Update from last night.

But first a little background about the circumstances with me waking up at night.

When I wake up at night, I experience the following set of symptoms:
A feeling of being hot and flushed.
A mild frontal headache.
Full body sweating that sometimes gets me soaking wet.
A feeling of skin pain similar to that of a sunburn.
Then, after no more than five minutes, all the symptoms go away.
BTW, I get those symptom all during the day as well and average about 25 times a day.
When checking my blood pressure either at home or at the doctor's office, I see a pressure of either about 110/60 or about 135/80. That's why I was checking all night that one night. On average the pressure for those 17 measurements was closer to the lower reading which leads me to believe that whatever is waking me up is endocrine related and by the time I am actually awake, the cause has dissipated and my blood pressure is back to normal.

So, on to last night.

Last night was the reverse of the previous night. Woke up at approximately 2 hours after sleep time, got up, loaded the data into Encore and looked the report.
Instead of a relatively uneventful two hours I saw previously, I got an AHI of 10.7 for the period. Stayed up a total of a little more than an hour first reviewing a video on cooking from the Culinary Institute of America, then after a failed attempt to get back to sleep (my rule is if I am in bed more than 20 minutes without falling asleep, get up) got up and read a not very exciting mystery novel for about another 30 minutes or so. Then back to bed.
Woke up 6 hours later with an AHI for that interval of 3.8.

Felt pretty good all day.

[Jay Aitchsee]

Have you had a PSG since starting and while on PLMD meds?
If not, have you ruled out PLMD in any other way - like with video recording?

• (I understand that PLMD usually doesn't present with the symptoms you describe)

Have you done video and sound recordings while sleeping?

Do you have a past history of alcohol abuse?

• (Don't answer if you don't feel like it. I have seen one study which found abstinent alcoholics to suffer fragmented sleep years after quitting.)

Have you stopped taking each drug that you take for a period of time to see if the symptoms subside?

[JDS74]

Have you had a PSG since starting and while on PLMD meds?
If not, have you ruled out PLMD in any other way - like with video recording?

• (I understand that PLMD usually doesn't present with the symptoms you describe)

Yes, I did have a PSG to determine just that. PLMD has been reduced to a very low number,

Have you done video and sound recordings while sleeping?

No, I currently don't have equipment to do that. Some time in the future that may be necessary.

Do you have a past history of alcohol abuse?

• (Don't answer if you don't feel like it. I have seen one study which found abstinent alcoholics to suffer fragmented sleep years after quitting.)

Never used alcohol at all.

Have you stopped taking each drug that you take for a period of time to see if the symptoms subside?

No, the meds I am using are required and there are no substitutes that I know of.
I'm on Synthroid after my thyroid was removed,
Somatuline to treat acromegaly,
Meds to deal with ongoing kidney stones,
Pramipexole for PLMD,
B-12 injectable for low B-12 levels, and
A tiny dose of Trazodone to help with sleep.

[Jay Aitchsee]

JDS, doesn't it seem likely that your medical conditions and/or your medications and possible side effects/interactions are responsible for the symptoms you experience throughout the day and upon waking at night?

[SewTired]

I have no solution for you, but just wanted to let you know that my mom is having awakenings and night sweats issues and she had her thyroid out. She is also on Synthroid. So it seems likely that the issue is hormones related to the thyroid.

[jnk...]

I would never suggest that anyone simply settle and stop trying to improve sleep. It is a worthy pursuit for anyone anywhere in any circumstance.

However, that said, if I were on that many medications, my personal goal might be just to do my best to get a total of seven or eight hours any way I could, not worrying at all about the timing or interruptions. If the meds are needed and are properly dosed and timed, accepting some side-effects on sleep may be the prudent thing to accept.

I have no medical experience or training whatsoever. Just another guy on the Internet.

[JDS74]

JDS, doesn't it seem likely that your medical conditions and/or your medications and possible side effects/interactions are responsible for the symptoms you experience throughout the day and upon waking at night?

Sorry, the meds are not responsible. This all started 14 years ago and I was not on any meds at the time.

[JDS74]

I have no solution for you, but just wanted to let you know that my mom is having awakenings and night sweats issues and she had her thyroid out. She is also on Synthroid. So it seems likely that the issue is hormones related to the thyroid.

I do believe it to be hormone related. In most cases, these symptoms are related to menopause and the drop in hormones that goes along with that. I've been up to the Mayo Clinic on this issue two times and went through lots of tests and tons of dollars to get a diagnosis but no joy. Their conclusion was real symptoms (not psychosomatic for example) and we haven't a clue as to the cause. So I just keep on trying to improve my quality of life until someone sasy "Aha!!" and I get a solution.

However, that said, if I were on that many medications, my personal goal might be just to do my best to get a total of seven or eight hours any way I could, not worrying at all about the timing or interruptions. If the meds are needed and are properly dosed and timed, accepting some side-effects on sleep may be the prudent thing to accept.

I can't find anything in the literature regarding any side effects of the meds I am taking that can remotely be a cause. I agree on the goal of getting 7 to 8 hours of sleep each and every night. Most nights I do get that much even after deleting the awake periods. To get 7 hours, I need to be in bed and hosed up for at least 8 hours.

This current experiment is a "quality of life" experiment to see if by getting up after one of these episodes, I can break the cycle and get good rest for the remainder of the night. So far, one night did that, one night gave me an extra period without apneic events, and one night was no change at all.

I really appreciate any and all suggestions on causes and possible changes. One suggestion is a video record of sleep to see what I may be doing just before waking up. That's definitely on my list of things to do. I do know that one of these episodes is triggered if I turn over onto my right side at night. Back and left don't trigger so a video might reveal I'm doing that. However, I do get them on my back and left but they seem to be related to something I did a few minutes before.

[jnk...]

"Both an underactive and an overactive thyroid can affect your sleep habits. Hypothyroidism, or underactive thyroid, can cause fatigue, lack of energy, and excessive daytime sleepiness. Hyperthyroidism, or overactive thyroid, can cause anxiety, rapid heart rate, and insomnia. You may have difficulty falling asleep, or wake up often in the middle of the night. Sleep disturbances, left untreated, can lead to fatigue, decreased productivity, and mood changes. If you have a thyroid problem and are experiencing sleep disturbances, make sure to discuss your symptoms with your doctor. . . . Night sweats are hot flashes that occur at night, associated with excess sweating that may soak nightclothes and bedsheets. Night sweats can be associated with both underactive or overactive thyroid function. However, there are numerous potential causes of night sweats, such as menopause, low blood sugar, certain drugs, or other medical conditions. Tell your doctors if you are experiencing night sweats and they can evaluate for possible causes." -- http://endocrinediseases.org/thyroid/faq.shtml

So, as I read that and other related info, for some, thyroid issues and/or thyroid-function-related treatments (amount and timing of dosage) can both be factors. I hear that dialing in the sweat spot (oops, I mean sweet spot) with timing and dosage of hormones can be tricky bidness, indeed. The line between undertreatment and overtreatment can move around over time.

Causes for sleep-maintenance insomnia can change over time, too.

In my experience and research, EVERY drug affects sleep in some way or another, and combinations of drugs, especially, have highly variable and unpredictable effects on sleep patterns and sleep effectiveness.

All in all, though, waking up a few times at night, although not optimal, is common for many, many reasons as we age. And if you are generally able to fall asleep after waking up, and if you are getting your seven or eight hours of sleep in every 24-hour period, many of us would consider that an enviable blessing.

But I DO hope you are able to get to the bottom of anything you find at all disturbing or troubling about your own sleep patterns. That's part of what the forum is for, after all. And from what you are saying, I'm sure you will.

I look forward to hearing more about your quality-of-life experiments related to sleep.

-jeff

[Jay Aitchsee]

JDS, doesn't it seem likely that your medical conditions and/or your medications and possible side effects/interactions are responsible for the symptoms you experience throughout the day and upon waking at night?

Sorry, the meds are not responsible. This all started 14 years ago and I was not on any meds at the time.

I'm not trying to be argumentative, JDS, really, but I did say medical conditions as well as medications. Although a quick review of the reported side effects of your meds finds at least some of your symptoms reported for each, with the worst offenders being synthroid and pramipexole.
http://www.rxlist.com/synthroid-side-ef ... center.htm
http://www.rxlist.com/somatuline-depot- ... center.htm
http://www.rxlist.com/mirapex-side-effe ... center.htm

Common side effects of Synthroid include fever, hot flashes, sensitivity to heat, sweating, headache, nervousness, irritability, nausea, sleep problems (insomnia), changes in appetite or changes in weight, and transient hair loss. Some women experience menstrual changes. Notify your doctor immediately if you experience serious side effects of Synthroid including rapid heartbeat or chest pain (or both).

I'm not suggesting you discontinue your experiment. I was only trying to suggest some possibilities to look into. If you can alter your sleep schedule to obtain restorative sleep, great! As jnk implied I think that's all any of us are looking for .

[JDS74]

Jay Aitchsee:

I appreciate the information about the possible side effects of my current meds.
But this all started 7 years before the Synthroid, 9 years before the Somatuline, and 12 years before the Mirapex (pramipexole). The physician I saw at Mayo's was the head of endocrinology, He's the one who prescribed the Somatuline as a possible way of controlling the symptoms. It didn't help but was useful in controlling the acromegaly. The one I'm seeing here is in a similar position.

The only med I haven't titrated down to the minimal effective dose is the pramipexole and that requires at least one more PSG to check that the PLMD efficacy is not impaired by the reduced dosage. I started out at a 0.125 mg dose which seemed to have no effect. That got increased up to 0.375 mg with no apparent effect and then to 0.5 mg and a PSG which showed that dosage was effective.

I did two experiments with the Somatuline dosage. Started at 90 mg and did that for a year or so. Then, as an experiment, I discontinued completely for a year at the end of which, the acromegaly tests came roaring back much higher than before I started. Restarted the drug but at the reduced dosage of 60 mg and that seemed to effective in controlling the acromegaly. BTW dropping from 90 mg to 60 mg dropped the cost from $3500 a month to an affordable $3200 per month. Fortunately my insurance covers most of that cost but it is still a significant amount. For those interested in such things, if one converts the lab reported number from an absolute value to a Z-score value, then normal looks like a range of -2 to +2. Mine was in the normal range when treated but reached a Z-score of more than 5 untreated. The normal range encompasses about 95% of the population. Getting to +3 moves that to above 99% of the population and then number of individuals above +5 is a number that can easily be counted and if listed, we could all be on a first name basis. The episode symptoms during all of this period gradually increased from 15 time/day to the current 25/day.

Pramipexole came later and was not accompanied with any increase in rate or severity of symptoms. I have tried other meds to see if they could help but no joy. I frequently mention to my doctors that if they think of any lab rat experiments that might help, I'm up for it.

Bringing up these issues is helpful as a way of pointing out to others that they need to manage their own medication list and to watch carefully for adverse reactions for their own meds. I don't consider it argumentative at all but a real attempt to be helpful and to point out issues that may not have been completely considered.

Thank you for the time and energy you have expended in trying to be helpful to me and others.