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How bad is your insomnia


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So I can't sleep again. Not a wink last night, as hard as I tried. Going on more than 24 hrs of no sleep and my mental and physical health is sure suffering. I had this last summer, got better, now creeping back the past month. Does anyone else have insomnia this bad? I can't tell if its from pots, depression, anxiety, all three. I know autonomic dysfunction causes sleep problems, but the thought that it's from pots and that something is wrong with my brain that it won't shut off is causing crazy anxiety. Sigh. Hoping this too shall pass soon. :(

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This is oen of my biggest complaints. I rotate through various supplements or Benadryl so I don't get used to any of them (different one every night)-some more effective than others. I definitely sleep better when I've been able to be active that day but of course that's another of my problems. I don't do well with exercise anymore. Metoprolol has helped because it "blunts" the pounding heart that seems to be 99% of the reason I can't sleep. By 3am I am often up for the day because my rate is fast and pounding. 

 

I generally get 2-4 hours of sleep and I go to bed by 8pm. Once a week or so, I'll have a night with not one moment of sleep. It absolutely ruins me... I have a great, positive outlook most of the time, but after a really bad night of sleep I get scarily dark and gloomy. I also guarantee myself a cold once I go 3 days with really low amounts of sleep. 

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I get in bed between 10-11pm. I fall asleep sometime between 1:45 and 4:30 am. Occasionally,  I don't sleep at all. If I'm aloud to wake up on my own, I usually sleep 7-7.5 hrs from whenever I fall asleep.  If I have to be awoken by an alarm,  I am usually a zombie.  And if I do use an alarm,  it has to be a graduated alarm that starts out very quiet and gradually increases in volume.  If it's just a sudden loud noise,  it sets off an adrenaline surge and I'm ruined for the day.

Ironically,  I also have daytime hypersomnia.  I can fall asleep easily and quickly any time from 11 am to 6 pm. I will sleep for about 2 hrs if left alone. Sometimes the hypersomnia is almost like a "sleep attack" where I become incredibly cold and feel like I will fall asleep even against my will. My body will start to collapse but it's different than passing out/syncope....it's sleep. However, I am not diagnosed as narcoleptic because during the daytime sleep studies, while I fall asleep much faster than the average adult for the designated naptimes, I don't reach REM sleep in the alotted amount of time. 

It's like my circadian rhythm has been turned upside down. We've tried all the sleep hygiene techniques and they aren't effective for me. Sleeping pills give me night terrors. 

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I have very bad bouts from time to time that last about a week of night after night of very little to no sleep.  I know it's just awful.  Not much seems to help me at times.  But in general, going to bed the same time each night and not sleeping in, in the AM, even when I would love to and could, seems to help a little.  Also, finding a way to wind down at night.  Darkening the rooms I am in, drinking soothing warm tea, avoiding electronics, taking a shower, are helpful to me at times.

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I once didn't sleep for 2 weeks straight and went to my dr.  It was a big help for me, and my sleep has been much better since then. So I'd recommend talking to your dr if you haven't already. You have a lot of options, like melatonin, benedryl, prescription drugs and even non-prescription things like sleep hygiene.  There is hope and improving my sleep really helped me get better.

 

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Why do we all have such a hard time with it?. Its like I'll feel tired and get into a twilight type sleep but wake up in an hour or so and then I'm panicked and wide eyed all night long. Is it part of dysautonomia? Because its horrendous. I was always an awesome sleeper as long as I was at home in my bed. Sleep was like my getaway. To have that taken away has been very hard to handle.  I'm taking trazadone and just started a new antidepressant and I have ativan that I take after my long bouts of no sleep. Hopefully I can get it regulated. I've kinda developed a sleep phobia too, lol! Good to know I'm not alone though, even though I wouldn't wish this on anyone. 

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On 3/13/2017 at 3:40 PM, Stephanieann said:

 I can't tell if its from pots, depression, anxiety, all three. I know autonomic dysfunction causes sleep problems, but the thought that it's from pots and that something is wrong with my brain that it won't shut off is causing crazy anxiety. Sigh. Hoping this too shall pass soon. :(

Something that helps me when I feel like I can't shut down my thoughts for sleep is to think about something all-consuming but completely irrelevant to daily life.  In my case I think about knitting projects or I work on imagining characters and storyline for a fantasy novel. In my case this is an ADHD thing, but maybe a similar tactic can help you? 

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Lily's suggestion just reminded me of my own tactic..I do the weirdest thing to fall asleep sometimes, but it works surprisingly well. I squeeze my eyelids shut super hard until they get tired, maybe 10-15 seconds? Then I relax the tension, and focus on imagining blackness. I try to imagine darker and darker blackness until I (usually) drift off.  That was super weird to explain but oh well. Hopefully that makes sense. It usually does the trick. If not I resort to a benadryl or some tea.

 

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One thing that I find very helpful for falling asleep and getting more restful sleep is using calf compression sleeves or compression knee socks. Maybe it's the increased blood flow that helps. Whatever it is, it's my new routine! I also wear PC glasses in the evening, which blocks the blue light that can interfere with sleep patterns. 

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