Saturday, October 8, 2011

My Journey with Insomnia

I have chronic insomnia. I am an insomniac. There, I said it.

Right. So, I've alluded to my trouble sleeping on the blog before. It's a major part of my life. It's part of the reason I don't schedule my workouts in the morning anymore. It's part of the reason I can't go out for drinks during the week. It's part of the reason that I can't drink coffee or caffeinated soda after noon or exercise right before bed. Every day is a practiced orchestration of what I can and cannot do so that I can get some restful sleep.

 Insomnia is defined as the repeated ability to go to sleep or stay asleep. It is really broken down into two disorders: primary insomnia and secondary insomnia. Primary insomnia is failure to sleep or stay asleep in the absence of any other medical cause. Secondary insomnia is failure to sleep related to another medical or psychological disorder. I have diagnosed chronic primary insomnia. I'm not sick, I'm not depressed. I'm generally an anxious person, but I don't have any anxiety disorders. I just don't go to sleep.

Interestingly, insomnia was not considered a primary disorder until relatively recently. It wasn't until 2005 that insomnia was recognized as a disorder that can occur separately from other psychological and physical disorders. The most common pairing was depression, in which insomnia was often caused by the primary condition but also acted to make the depression worse. For some more interesting medical information on insomnia go here: WebMD Insomnia FactSheet

Statistically, westerners suffer from Insomnia at a higher rate than the rest of the world, with recent polls estimating that 23% of the American workforce suffers from Insomnia (2008-09 Harvard Medical School study containing about 7500 workers...sorry I can't find a direct link!), and around 40% of the Canadian workforce.

Since 30somethingnothing recently did a post on the benefits of sleep, and why getting enough good sleep is important, I won't  go into that. How about I tell you what you can do if you aren't sleeping well? I have, let's say, a little bit of expertise in that.'re not sleeping well:

(I chose this picture because I feel this is exactly what I look like when I'm not sleeping...probably with more tears...nothing is more frustrating that failing to sleep)

Can you isolate something that is making it hard to sleep?
Examples: noise, late-night excitement, excess energy, anticipation of being woken up, caffeine or drug-related jitters, alcohol consumption, stress or anxiety, fear or apprehension, depression, temperature, external stimuli (lights, sounds, breezes, people touching you). 

So, let's say these break up into two groups: emotional/psychological stimuli and physical stimuli. I think the physical stimuli are easier to treat initially, so let's remove them.

 Blackout curtains
Remove electronics from the bedroom/turn them around
Get a soundmachine or run a fan for white noise
Turn on your A/C or get a super-quiet portable unit that can cool just your room to about 65 F, which is a great temperature for sleep
Regulate your sleep/wake cycle: Even if it's painful, try getting up and going to bed within 30 minutes of the same time every day for 3-4 days. 
Sleep somewhere new: try to go to sleep in a new location or position. I know it sounds funny, but sometimes the key to sleep for me is to move 180 degrees on the bed and 'sleep upside down'
Move your exercise routine to the morning, mid-day, or early afternoon. However, keep exercising, as it regulates your hormone levels, which can effect sleep. 

The emotional aspects are harder to isolate and treat. Often, insomnia presents as a symptom of another disorder, whether its a chemical imbalance or a reaction to external stimuli. Sometimes insomnia occurs free of other disorders, but extended insomnia can lead to disorders like depression and anxiety.

Assess your drug (Rx and non-Rx) and alcohol habits: Could one of these be causing your insomnia? Try dropping out one at a time for several days at a time. It may take up to 5 days for some drugs to clear your system, so be patient. 

Is something in your life causing stress and/or anxiety. Is it long-term, or just a transient aspect of your life? If it's long-term and will have long-term effects on your sleep, you may want to look at making some life changes to avoid this stimuli. 

Level with yourself: Do you have an untreated physical or chemical disorder. Could seeking medical attention or therapy help your sleep disorder? 

Finally, it might not be any of these items, or it may be something completely unavoidable. If you believe the sleep disorder is sudden-onset for no reason, then there are a variety of Rx and Non-Rx medical treatments available.

A quick overview of the major ones:

Non-Rx 'herbal': These are often mixtures or preparations of melatonin and/or valerian root. These are not regulated by the FDA, so different preparations can be prepared differently. Melatonin is a natural signalling molecule that your body uses to signal sleepiness. Valerian root is a slightly halucinogenic herb, but it does promote relaxation through an unknown mechanism. These two preparations have been used by folk-medicine for centuries, but it's important to note where you're getting your pills. If you find one that works for you, go for it, but recognize that different suppliers are more/less reliable than others.

Over-the-counter sleep aids: The non-herbal sleep aids tend to be antihistamines that act much like benadryl. These drugs usually use some kind of form of doxylamine, and they will work the first time, but your body rapidly adjusts to the medicine and you will have to up the dose to retain the effect (not safe!).

Rx Sleep Aids: These insomnia-specific drugs are relatively new drugs (within the last 10 years), and they are all in the same family. Brand names are Lunesta, Ambien, and Sonata. These are FDA approved for use on sleep, but they can be habit forming. Also, common side effects include somatic activities (sleepwalking and other activities), which the companies that make these drugs denied for many years before they were forced to include them on the warning label. These side-effects are especially prominent in women for unknown reasons.

Rx 'off-label' sleep aids: Before the advent of the Z-drugs, prescribing drugs for the 'off-label' (i.e. unapproved) treatment of insomnia was common. These drugs were commonly antidepressants, which were believed to treat the 'underlying' cause of insomnia. Unfortunately, many of these pharmaceuticals have extreme, sudden-onset side effects, such as suicidal thoughts and actions. If you're on these drugs and they help you sleep, it's important to monitor yourself for such thoughts.

Before you go to the doctor: 

If you decide to seek medical intervention for your insomnia, your doctor will have you do a sleep survey before he/she will prescribe any pharmaceutical aid or refer you to another sleep professional. In a world where 'lack of sleep' isn't considered a serious ailment, this means most of us will wait at least a week for the doctor's appt, then be sent home for a week to do the survey, before finally getting the treatment we need. My friend's dad is a doctor (Hi Bob!) and he was nice enough to tell me what I needed to demonstrate in order to get further care.

1) Track bedtimes and waketimes, and approximate sleeptimes for 3+ days. 
2) Track diet, including beverages, for the same time period.
3) Move exercise/physical fitness activities out of your evenings for the same time period. 
4) Make a list of possible/impossible effectors that are making your sleep difficult to achieve.
5) When you go to bed, go to bed without any external stimuli, including books, TV, computers, etc. Do this at least for the 3+ day period. 

Your doctor might recommend a sleep study. This is the only thing on this post that I haven't tried. The fiance did a sleep study for his sleep apnea, and $400.00 later (that was the COPAY), he felt he had been ripped off because he went to the clinic and didn't sleep, didn't snore, and was told there was nothing wrong with him. I don't want to go to a sleep study to pay someone to watch me not sleep. In her book Wide Awake, Patricia Morrisroe had a similar experience with sleep doctors and sleep studies.

My insomnia and how I control it: 

I have had trouble sleeping since I was a child. I would undergo periods where I had trouble going to sleep, alternating with periods where I would sleep all the time. I also sleepwalk and sleeptalk regularly. I have fallen down the stairs in my parent's house and hurt myself. Interestingly, one of my brothers also manifests the same symptoms as a teenager. The other one sleeps like a rock. Lucky snot.

My insomnia was always transient and controllable until just before my undergraduate graduation. My boyfriend and I, who lived together, broke up. I was traumatized. I failed to sleep for a week. I then failed to sleep for more than a few hours for an entire summer. I then failed to sleep, even after we had moved to separate apartments, into the fall at the start of grad school. I took the antihistamine drugs, but I kept having to increase the dose. The doctor later explained to me that was very normal. I felt awful and groggy in the morning. I couldn't sleep, even to nap, and I was losing control. I cleaned up my diet, my habits, and my lifestyle, and I still couldn't sleep. I went to the doctor and was prescribed a month of Ambien. I took the Ambien every day for 3-4 days in order to sleep soundly for the first time in months. As a scientist, I had looked up the side effects of Ambien and understood that it was habit forming. I then worked my way from 1 per night to 1/2 per night and finally one every other night. I then stopped taking the Ambien and was sleeping well, except for the occasional bout of insomnia. I was back to my 'normal'.

Ambien was great for me, but it did have side effects. As someone who already sleep walked/talked, those activites were enhanced. I don't want to get into details, but you can look up other women's stories about what they did while they were asleep. I didn't eat, I didn't drive, but I did do just about everything else. And my fiance attests that you can't tell the difference between me being awake and being asleep on Ambien. That makes it very dangerous in my eyes.

My insomnia was controllable via behavioral methods for over 2 years, but it came back full-strength just after graduation. I was then living with the fiance and we had already given up so much because of my sleep disorder. We couldn't have a TV in the bedroom. I had to go to bed hours before him to be fully asleep when he came to bed. Even the cats know to wait until I'm asleep to come to bed, otherwise they find themselves launched from the bed. I wore earplugs to bed and ran a fan. I found some solace with melatonin, first as a 1 mg/mL capsule and then all the way up to 5 mg/mL. That worked for over a year, but one day, I must have just acquired tolerance over time. It didn't work anymore. And I couldn't sleep at all.

We decided not to share a bed, because the fiance snores. Even after a sound machine, earplugs, and a fan, I would be woken up by his snoring. Finally, I wasn't sleeping at all again. I would lay in bed for 8 hours, not asleep, and then trudge off to work at 7:30am. I was effectively a zombie. I went back to the doctor, who prescribed 2 weeks of Ambien and a month of Trazodone. The trazodone is an antidepressant. It is considered safer for long-term use than the Ambien. Unfortunately, it did nothing for me except give me a nasty bout of dry mouth. I instead used the Ambien and went back to sleeping intermittantly, then back to my 'normal'.

I don't take the Ambien long term, though I know some people do. For me, it leads to nocturnal activities that I'm uncomfortable with (though the fiance finds me amusing), and memory loss. Since much of my success in life hinges on my ability to remember a large variety of scientific facts and figures, the memory loss was a real problem. Also, to some extent I wish to not have to medicate myself in order to do something my body is supposed to do naturally. 

A year later, I can now use melatonin again for occasional trouble sleeping. I prefer that because it has the least side effects for me. I still have to monitor my behavior in order to sleep reliably. Right now this includes:

1) A strict 10pm bedtime
2) No fighting or stressful discussion before bed
3) No computer work after 9pm
4) A strict noon cutoff for coffee consumption
5) No caffeinated soda after noon. No energy drinks (period).
6) No morning exercise (the early wakeup makes me anxious), but exercise must be completed by 8:30pm. Preferrably earlier.
7) I must be done eating dinner by 8pm. Most days this is not a problem (c'mon, I live in the midwest. Dinnertime is 5pm, especially in the winter), but sometimes when it goes late, my stomach is too full to sleep well.
8) The fiance and I still only share beds when we're traveling. This makes me very sad, but it seems unavoidable at this state of our lives.

I hope this helps you if you are also one of the insomniatic people in the world and don't know what to do or what your options are. If you know someone else who suffers from insomnia, my main advice would be not to judge them or tell them how to fix it. Insomnia is incredibly complicated and emotional. I feel as though my loved ones are annoyed by me and my hyper-tense attitude towards sleep. I hope they know that I do everything I can to control it, and I wish it would go away too. Unfortunately, I have been symptomatic my whole life and suffering for 8 years. The prognosis isn't good at this point, so I have to learn to deal with it. And so do your loved ones who suffer, so be sympathetic and supportive, not judgemental.

Any other non-sleepers out there?


  1. Thank you so much for this open and informative post. I had no idea how debilitating insomnia can be until the last couple years. Figuring it out can be indescribably, frustratingly elusive... so I am very grateful that you're putting this out there for others who also suffer. Don't give up!

  2. I thought this post was great - it's a very real topic, and some people may not realise how serious an issue it is. I have been lucky that I've had almost no problems sleeping. I get the odd 2-3 nights not being able to fall asleep well, mostly when I'm home-sick or emotionally upset. I loved the list you made - I watch out for some of those things as well! However, the exercise thing has always affected me differently, especially swimming. If it's a long, semi-hard workout, I feel super relaxed and exhausted, so it makes me sleepy.

    Hope you return to your 'normal' soon!

  3. Hi Sis Its been a while since I have posted on your blog.

    Yes I still sleep walk, however I don't wake up doing it anymore. I only here about it when I make enough noise when I am, that our brother wakes up.About 6-7 weeks ago when school was starting he started complaining about it a lot. However he didn't know I was sleep walking only that I got up and made a lot of noise downstairs in the early hours of the night.

    I think your active life has been both a blessing an a curse. By the way when in the year does melatonin work best for you? It should be more effective in the fall when you body begins to produce more of it. I don't know if antidepressants would work as typically they decrease melatonin levels, and if you have a deficiency you may need it.

  4. Thank you so much for this post! I finally know I'm not alone. We have so much in common, PhDs, scientists, insomnia, sleeping in different rooms from our hubbys. The frustation and insanity caused by insomina is something few people really "get". I have resorted to chronic ambien (combined with other meds) for about 10 years now. It's far from ideal and doesn't always work, but it usually makes the situation a little more bearable. I've recently started exploring the possibility of a food intolerance as a contributing factor as well. Please post updates on your journey with insomnia and feel free to vent or brainstorm with me (neuroepidemiologist at gmail dot com). Just knowing I'm not the only one like this is a huge relief (although I wouldn't wish it on anyone!).

  5. Oh you poor thing! I so relate, which is why I understand the importance of sleep. I don't think I slept more than 3x/week for 10 years and after my youngest daughter was born it got even worse.

    If you want to know how I got over it, email me and I'll give you the deets.