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I was born with chronic insomnia and I'm now in my early 30s. I never feel sleepy and just this past Monday I went to work having not slept the night before. I'

I was born with chronic insomnia and I'm now in my early 30s. I never feel sleepy and just this past Monday I went to work having not slept the night before. I'm healthy now and I guess my body is so used to the effects of sleep deprivation that I feel no side effects (such as headaches), but I wouldn't be surprised if I die very young. If you have any questions feel free to ask them, just please don't suggest I try melatonin or marijuana.

karanbhangui 7y ago
Curious if you've done in-lab sleep studies and if so, what the treatment has been like?
- o10449366 7y ago
  I've done two, but I didn't find them very helpful. They take several months to schedule, which is quite inconvenient, and they require dedicating a lot of time staying overnight in clinics with wires strapped to you. The end result is the same, too. Current medical advice is a mix of sleep hygiene and meditation strategies (some insomniacs feel extremely anxious when they can't sleep, which makes things worse) and medication. I'm currently not taking medication, but for many years it was a pretty constant cycle 6-9 months on medication, and then a few months tapering off because my body would quickly build tolerance to them. Medication was pretty critical when I was in college, but in the decade since I've graduated I think I've just come to see the cycle as unsustainable and ultimately kind of pointless which is why I haven't taken them for about a year now.
  - watsocd 7y ago
    This was my exact experience as well with the studies. We are similar in our sleep patterns.
  - hiram112 7y ago
    Just curious if the medication was a benzo or z-drug (e.g. Ambien). If so, did you take it nightly during your 6-9 month cycles? Did the tolerance reset after a few months' break? I've tried pretty much everything. Of course Melatonin and Benadryl don't work much. Klonopin and Ambien both work well, but I try not to use it more than 1x a week to avoid a tolerance.
    - o10449366 7y ago
      I tried a whole slew of them. Zaleplon was actually the one that worked the best for me and the one I took for the longest. The tolerance would reset after a few months break, but it would always get back to the point where it was ineffective. I've also never noticed melatonin to have any effect, even when taken correctly.
    - uberduper 7y ago
      Ask your dr about hydroxyzine. It's an anti-anxiety medication but is useful as a long term sleep aid in higher doses. No pills ever worked for my insomnia but hydroxyzine made me much more comfortable while trying to sleep.
rockinghigh 7y ago
Do you ever do strenuous exercise? If so, how does it affect your insomnia?
- o10449366 7y ago
  Exercise doesn't have an effect for me. In high school I played two varsity sports and in college I played in some club/recreational leagues. Now I swim and weightlift, but I wouldn't say any of these activities improve my quality of sleep or ability to induce it. This is because, for me, "sleepiness" is not the same as "tiredness." I can be extremely exhausted, both mentally and physically, but I'll still never feel sleepy. I would say one of the most frustrating aspects of being an insomniac is that is makes activities like weightlifting much more difficult. I'll never be able to achieve my weightlifting goals because I simply don't sleep enough hours to let my body fully recover. I've found I still have a strong stamina for aerobic sports, but building raw strength and muscle has been really hard.
  - cgh 7y ago
    That's not from a lack of sleep. If you want to build strength and muscle, do less aerobic exercise and eat more - a lot more. You need to be in a caloric surplus for a while.
    - Denzel 7y ago
      Nope, GP post is correct. Your body dramatically increases muscle synthesis and nervous system improvements while you’re asleep. A caloric surplus is one piece of three-part puzzle: progressive overload, caloric surplus, and sleep.
    - jaoa 7y ago
      Given that sleep provides you with HGH, sleep definitely has a massive effect on strength and muscle (of course, a caloric surplus is also necessary).
jeffshek 7y ago
How is your blood pressure variability? I went for 4-5 hours of sleep for a year; while resting blood pressure was normal, I found it would spike high easily.
- o10449366 7y ago
  I've never had any problems with low or high blood pressure and I think that's been helped by staying relatively aerobically fit throughout my life.
neom 7y ago
Same deal here, same age as well - I often wonder if I did it to myself by staying up all night every night in my teens IRCing with folks in the US, never the less I don't get jetlag (currently in Seoul and adjusted that day) and I don't feel uncomfortable (prefer?) 4 hours sleep.
- o10449366 7y ago
  That's interesting. I've heard several people say they developed insomnia as teenagers, but for me it was ever since I was a kid. My parents would always get annoyed with me when I was young because I would talk with my siblings all night instead of sleeping.
  - neom 7y ago
    I should ask my mum about this, maybe the IRC was a byproduct of insomnia, I'm not sure. FWIW I'm also dyslexic and when I do sleep, I almost never dream.
ping_pong 7y ago
Do you sleep at all, or do you just sleep very little?
- o10449366 7y ago
  Very little, but it isn't uncommon for me once a week or every other week to go a full night with no sleep at all.
uberduper 7y ago
Ever get your testosterone levels tested?
- o10449366 7y ago
  Almost certainly as part of the sleep studies and checkups I've done, but I don't recall any doctors calling any particular attention to it. They always seem more concerned with the state of my heart and my mental state (any anxiety/depression/etc.) when I go to checkups.
rcpt 7y ago
Ever try CBT? I've never been great at sleeping but that changed my life. Better than any drug or medication I tried. Only drawback is that you need to stay vigilant once you get it sorted out.
cj 7y ago
You alluded to taking benzos + z-drugs for 10+ years (you weren't very specific, so I could be off base) on 6-9 month cycles with 3 month tolerance break, and that you've been clean off benzo/x-drugs for a year now. I've seen cases of benzo/z-drug withdrawal (after a short 1-2 years of daily use) requiring 3 months to even notice relief from the side effects of the withdrawal (most notably, horrible insomnia). And then another 6-12 months of abstinence to reach a place where the withdrawal effects are no longer top of mind, or subtly present but not overwhelming. If you were on benzo/z-drug for very many consecutive years (even with short tolerance breaks), especially if those years were before age 25, it's very possible that your brain has never had a chance to function in the way a "normal" (non-altered) brain functions that hasn't been exposed to long term benzo/z-drug therapy. The scary part about benzo/z-drugs is that they can, over time, change the structure and chemistry of your brain through upregulation and downregulation of receptors in response to the presence of drugs. With benzos in particular, the amount of time it takes to reverse the drug-induced changes seems to be incredibly long (not weeks, barely months, maybe years -- obviously depending on the length of time of initial exposure). This is all to say that, if indeed you were on ultra long-term benzo/z-drugs for an extended amount of time (2-5+ years), 1 year of abstinence may not be enough to fully recover back to a normal state. --- And I assume you do all the basic sleep hygiene stuff for insomnia: no caffeine (at all, not even in the morning), no stimulants even if prescribed, intense exercise in the morning but not at night, not eating within 3 hours of sleep, no electronics within 2 hours of sleep. --- If you think the first part of my comment is BS, and if you've already done everything in the 2nd part of the comment, I'd highly recommend trying a dramatic diet change: something like going strict vegan and cutting out all processed sugars (and processed foods in general), - And if that too fails, think deeply about what triggers anxiety / emotional discord in your life, and try to eliminate the source of that completely. This is the hardest advice to follow through with, since for many people it means quitting jobs, ending marriages, disowning family, moving to another country... you get the point.
- o10449366 7y ago
  I haven't had issues with anxiety/depression since I was a teenager, thankfully. I'm very peaceful even when I can't sleep. When I was younger that was a big source of frustration and stress (especially during school), but I've accepted it many years ago. This is who I am and nothing can really change about that. :) I've also never gotten into the habit of drinking caffeine. The only time I'll drink coffee is if my friends who are into that kind of stuff bring back some rare coffee from a trip and invite me to try some. I also don't drink soda or energy drinks. It's possible that being on the sleep medications for extended periods of time changed my brain chemistry, but I think my condition is different from most people. This was something I was legitimately born with and can remember struggling with even as a very young child (3-4 years old). My parents have similar recollections. No one else in my family has this issue - I just see it as an unlucky mutation. I'm glad you mentioned diet. I think that is probably something that helps me. I've been on keto for most of my adult life and since graduating college and starting working I've been on one meal a day (lunch) aside from the few month stretches where I tried to gain weight for weightlifting. Thankfully my parents were amazing cooks growing up and were also too poor to avoid keeping snacks in the house so I never got into the habit of eating candy or junk food. I definitely notice that I struggle to sleep even more on occasions where I go out and eat with friends late at night and eat carb heavy meals that I wouldn't eat otherwise.

karanbhangui 7y ago

Curious if you've done in-lab sleep studies and if so, what the treatment has been like?

o10449366 7y ago
I've done two, but I didn't find them very helpful. They take several months to schedule, which is quite inconvenient, and they require dedicating a lot of time staying overnight in clinics with wires strapped to you. The end result is the same, too. Current medical advice is a mix of sleep hygiene and meditation strategies (some insomniacs feel extremely anxious when they can't sleep, which makes things worse) and medication. I'm currently not taking medication, but for many years it was a pretty constant cycle 6-9 months on medication, and then a few months tapering off because my body would quickly build tolerance to them. Medication was pretty critical when I was in college, but in the decade since I've graduated I think I've just come to see the cycle as unsustainable and ultimately kind of pointless which is why I haven't taken them for about a year now.
- watsocd 7y ago
  This was my exact experience as well with the studies. We are similar in our sleep patterns.
- hiram112 7y ago
  Just curious if the medication was a benzo or z-drug (e.g. Ambien). If so, did you take it nightly during your 6-9 month cycles? Did the tolerance reset after a few months' break? I've tried pretty much everything. Of course Melatonin and Benadryl don't work much. Klonopin and Ambien both work well, but I try not to use it more than 1x a week to avoid a tolerance.
  - o10449366 7y ago
    I tried a whole slew of them. Zaleplon was actually the one that worked the best for me and the one I took for the longest. The tolerance would reset after a few months break, but it would always get back to the point where it was ineffective. I've also never noticed melatonin to have any effect, even when taken correctly.
  - uberduper 7y ago
    Ask your dr about hydroxyzine. It's an anti-anxiety medication but is useful as a long term sleep aid in higher doses. No pills ever worked for my insomnia but hydroxyzine made me much more comfortable while trying to sleep.

rockinghigh 7y ago

Do you ever do strenuous exercise? If so, how does it affect your insomnia?

o10449366 7y ago
Exercise doesn't have an effect for me. In high school I played two varsity sports and in college I played in some club/recreational leagues. Now I swim and weightlift, but I wouldn't say any of these activities improve my quality of sleep or ability to induce it. This is because, for me, "sleepiness" is not the same as "tiredness." I can be extremely exhausted, both mentally and physically, but I'll still never feel sleepy. I would say one of the most frustrating aspects of being an insomniac is that is makes activities like weightlifting much more difficult. I'll never be able to achieve my weightlifting goals because I simply don't sleep enough hours to let my body fully recover. I've found I still have a strong stamina for aerobic sports, but building raw strength and muscle has been really hard.
- cgh 7y ago
  That's not from a lack of sleep. If you want to build strength and muscle, do less aerobic exercise and eat more - a lot more. You need to be in a caloric surplus for a while.
  - Denzel 7y ago
    Nope, GP post is correct. Your body dramatically increases muscle synthesis and nervous system improvements while you’re asleep. A caloric surplus is one piece of three-part puzzle: progressive overload, caloric surplus, and sleep.
  - jaoa 7y ago
    Given that sleep provides you with HGH, sleep definitely has a massive effect on strength and muscle (of course, a caloric surplus is also necessary).

jeffshek 7y ago

How is your blood pressure variability? I went for 4-5 hours of sleep for a year; while resting blood pressure was normal, I found it would spike high easily.

o10449366 7y ago
I've never had any problems with low or high blood pressure and I think that's been helped by staying relatively aerobically fit throughout my life.

neom 7y ago

Same deal here, same age as well - I often wonder if I did it to myself by staying up all night every night in my teens IRCing with folks in the US, never the less I don't get jetlag (currently in Seoul and adjusted that day) and I don't feel uncomfortable (prefer?) 4 hours sleep.

o10449366 7y ago
That's interesting. I've heard several people say they developed insomnia as teenagers, but for me it was ever since I was a kid. My parents would always get annoyed with me when I was young because I would talk with my siblings all night instead of sleeping.
- neom 7y ago
  I should ask my mum about this, maybe the IRC was a byproduct of insomnia, I'm not sure. FWIW I'm also dyslexic and when I do sleep, I almost never dream.

ping_pong 7y ago

Do you sleep at all, or do you just sleep very little?

o10449366 7y ago
Very little, but it isn't uncommon for me once a week or every other week to go a full night with no sleep at all.

uberduper 7y ago

Ever get your testosterone levels tested?

o10449366 7y ago
Almost certainly as part of the sleep studies and checkups I've done, but I don't recall any doctors calling any particular attention to it. They always seem more concerned with the state of my heart and my mental state (any anxiety/depression/etc.) when I go to checkups.

rcpt 7y ago

Ever try CBT? I've never been great at sleeping but that changed my life. Better than any drug or medication I tried. Only drawback is that you need to stay vigilant once you get it sorted out.

cj 7y ago

You alluded to taking benzos + z-drugs for 10+ years (you weren't very specific, so I could be off base) on 6-9 month cycles with 3 month tolerance break, and that you've been clean off benzo/x-drugs for a year now. I've seen cases of benzo/z-drug withdrawal (after a short 1-2 years of daily use) requiring 3 months to even notice relief from the side effects of the withdrawal (most notably, horrible insomnia). And then another 6-12 months of abstinence to reach a place where the withdrawal effects are no longer top of mind, or subtly present but not overwhelming. If you were on benzo/z-drug for very many consecutive years (even with short tolerance breaks), especially if those years were before age 25, it's very possible that your brain has never had a chance to function in the way a "normal" (non-altered) brain functions that hasn't been exposed to long term benzo/z-drug therapy. The scary part about benzo/z-drugs is that they can, over time, change the structure and chemistry of your brain through upregulation and downregulation of receptors in response to the presence of drugs. With benzos in particular, the amount of time it takes to reverse the drug-induced changes seems to be incredibly long (not weeks, barely months, maybe years -- obviously depending on the length of time of initial exposure). This is all to say that, if indeed you were on ultra long-term benzo/z-drugs for an extended amount of time (2-5+ years), 1 year of abstinence may not be enough to fully recover back to a normal state. --- And I assume you do all the basic sleep hygiene stuff for insomnia: no caffeine (at all, not even in the morning), no stimulants even if prescribed, intense exercise in the morning but not at night, not eating within 3 hours of sleep, no electronics within 2 hours of sleep. --- If you think the first part of my comment is BS, and if you've already done everything in the 2nd part of the comment, I'd highly recommend trying a dramatic diet change: something like going strict vegan and cutting out all processed sugars (and processed foods in general), - And if that too fails, think deeply about what triggers anxiety / emotional discord in your life, and try to eliminate the source of that completely. This is the hardest advice to follow through with, since for many people it means quitting jobs, ending marriages, disowning family, moving to another country... you get the point.

o10449366 7y ago
I haven't had issues with anxiety/depression since I was a teenager, thankfully. I'm very peaceful even when I can't sleep. When I was younger that was a big source of frustration and stress (especially during school), but I've accepted it many years ago. This is who I am and nothing can really change about that. :) I've also never gotten into the habit of drinking caffeine. The only time I'll drink coffee is if my friends who are into that kind of stuff bring back some rare coffee from a trip and invite me to try some. I also don't drink soda or energy drinks. It's possible that being on the sleep medications for extended periods of time changed my brain chemistry, but I think my condition is different from most people. This was something I was legitimately born with and can remember struggling with even as a very young child (3-4 years old). My parents have similar recollections. No one else in my family has this issue - I just see it as an unlucky mutation. I'm glad you mentioned diet. I think that is probably something that helps me. I've been on keto for most of my adult life and since graduating college and starting working I've been on one meal a day (lunch) aside from the few month stretches where I tried to gain weight for weightlifting. Thankfully my parents were amazing cooks growing up and were also too poor to avoid keeping snacks in the house so I never got into the habit of eating candy or junk food. I definitely notice that I struggle to sleep even more on occasions where I go out and eat with friends late at night and eat carb heavy meals that I wouldn't eat otherwise.