Complete Lack of Sleep

Posted by cliffordjames @cliffordjames, Apr 27, 2018

I am having a severe sleep issue. First and foremost, this is not a sleep or Circadian Rhythm disorder. I do not know where to turn.

In September 2015, I experienced an episode of disorientation and sensitivity to light that lasted 2 days. Since that time, I have not had Circadian Rhythm. I am constantly wide awake, 24 hours per day, 7 days per week. I never sleep.

I am wide awake without any sleep all day and all night. I don't know what doctor to see or what is exactly wrong.

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@cliffordjames Oh my goodness, I cannot imagine how you function with no sleep at all. I hope there is some specialist out there who can help you with this. I presume you have tried some type of sleeping pills to no avail.
Have you researched to try to find someone who specializes in this problem? If would be traveling to see someone who is a real specialist.
JK

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Hello, @cliffordjames — wow. That is indeed challenging. Never sleeping would be incredibly hard, I imagine.

I'm thinking that perhaps @jimhd @sandytoes14 @AgentDarien @lknightb @lacey @travelgirl @jenapower @bstephens may have some thoughts about your always-wide-awake, 24/7 condition.

Have you been to see a Sleep Medicine doctor, then, @cliffordjames ?

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@lisalucier

Hello, @cliffordjames — wow. That is indeed challenging. Never sleeping would be incredibly hard, I imagine.

I'm thinking that perhaps @jimhd @sandytoes14 @AgentDarien @lknightb @lacey @travelgirl @jenapower @bstephens may have some thoughts about your always-wide-awake, 24/7 condition.

Have you been to see a Sleep Medicine doctor, then, @cliffordjames ?

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I have tried everything. I don't know what to do. I have tried 7 different sleeping medications to no avail. I also have not had an appetite since December 2016 and have tried psychiatric medication as well. Doesn't help with restoring my appetite and doesn't help with getting any sleep. I believe my body's biology is flawed and I will never sleep again. I have emailed countless doctors, phd researchers in Circadian Rhythm, brain gut connection, and serotonin connection between the gut and the brain. I have come up empty.

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@lisalucier

Hello, @cliffordjames — wow. That is indeed challenging. Never sleeping would be incredibly hard, I imagine.

I'm thinking that perhaps @jimhd @sandytoes14 @AgentDarien @lknightb @lacey @travelgirl @jenapower @bstephens may have some thoughts about your always-wide-awake, 24/7 condition.

Have you been to see a Sleep Medicine doctor, then, @cliffordjames ?

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@lisalucier I am in the process of seeing a sleep medicine doctor but, I don't think this is a sleep disorder. When I had my consult with a sleep medicine doctor, he couldn't explain why I have no appetite with a sleep disorder. He also could not explain why I have no circadian rhythm. He was able to explain what part of the brain controls Circadian Rhythm but not why I am lacking.

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@cliffordjames So sorry your going through this. I am sharing with you Mayo Clinic's Patient Care and Information regarding Insomnia. Maybe you can find some sleeping suggestions helpful? If not I suggest you consult with a sleep specialist Dr.
https://www.mayoclinic.org/diseases-conditions/insomnia/symptoms-causes/syc-20355167
Wishing you the Best.
Jackie

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@lisalucier

Hello, @cliffordjames — wow. That is indeed challenging. Never sleeping would be incredibly hard, I imagine.

I'm thinking that perhaps @jimhd @sandytoes14 @AgentDarien @lknightb @lacey @travelgirl @jenapower @bstephens may have some thoughts about your always-wide-awake, 24/7 condition.

Have you been to see a Sleep Medicine doctor, then, @cliffordjames ?

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Sounds like this has been a very hard road, @cliffordjames, with few answers so far. Have you by any chance thought about coming to be seen at Mayo Clinic?

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Hi, @cliffordjames — just thinking of you with your being wide awake without any sleep all day and all night. Wondering how it's going?

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@lisalucier

Hi, @cliffordjames — just thinking of you with your being wide awake without any sleep all day and all night. Wondering how it's going?

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@lisalucier I'm surviving is the best I can say. I didn't add that I have not had an appetite since December 2016. I don't have much hope for ever being the same again.

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@lisalucier

Hello, @cliffordjames — wow. That is indeed challenging. Never sleeping would be incredibly hard, I imagine.

I'm thinking that perhaps @jimhd @sandytoes14 @AgentDarien @lknightb @lacey @travelgirl @jenapower @bstephens may have some thoughts about your always-wide-awake, 24/7 condition.

Have you been to see a Sleep Medicine doctor, then, @cliffordjames ?

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@lisalucier I have been seen at The Mayo Clinic. I had an initial consultation there. Nothing came of it because this is treated as a sleep disorder when it is much more than insomnia.

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@lisalucier

Hi, @cliffordjames — just thinking of you with your being wide awake without any sleep all day and all night. Wondering how it's going?

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So very sorry to hear that, @cliffordjames. That's an extremely hard combination with not sleeping and not feeling like eating, as well. "Just surviving" is a very challenging place to be.

I also wanted you to meet @gemmax @johnbishop @parus and @hopeful33250 — wondering if they may have a thought on your situation with the complete lack of sleep and lack of appetite.

You mentioned that this is much more than insomnia. Are you referring to the appetite, or are you experiencing other symptoms, as well?

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