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cliffordjames
@cliffordjames

Posts: 8
Joined: Apr 27, 2018

Complete Lack of Sleep

Posted by @cliffordjames, Fri, Apr 27 2:04am

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.

REPLY

@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

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 ?

@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.

@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.

@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

@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?

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

@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.

@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 ?

Jump to this post

@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.

@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?

@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 am referring to the basis for what is wrong. I believe I know what has happened to my body based on experiences since September 2015. Simply put, I believe my serotonin connection between my gut and my brain is disconnected. The majority, over 90% of our bodies serotonin comes from our GI tract. I believe I severed it in September 2015 and was provided confirmation of such in July 2017 when I began taking serotonin supplements. If you look up what serotonin controls in the body, that is the majority of what my problems are. No Circadian Rhythm, serotonin controls the sleep/wake cycle. Lack of appetite, serotonin is involved in the rhythm for eating as well. Sadly, I believe this is beyond the scope of medicine and medical science and will be wide awake until my death.

@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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@cliffordjames I can't begin to imagine how difficult your situation is. I'm glad you are asking a lot of questions and being a strong advocate for yourself. You mentioned that you are taking serotonin supplements. Do the supplements help you?

Maybe you have already seen these articles but thought they may be related to your situation.

This is Your Brain on Serotonin
https://upliftconnect.com/brain-on-serotonin/

Depression, Serotonin, and the Mind-Gut Connection – Big Think (YouTube)
http://bigthink.com/videos/emeran-mayer-on-depression-and-the-mind-gut-connection

NIH – The Gut-Brain Axis: The Missing Link in Depression
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662178/

John

Hello @cliffordjames

I just now read your post. I feel badly that you are not getting regular sleep. Any person who has had a sleepless night or two (and that includes all of us) understands how difficult it is to function without sleep. As you know, we at Mayo Connect, are not medical professionals, nor can we diagnose problems. We are just patients like yourself who have encountered medical difficulties.

With that said, you mention that you have seen a sleep specialist for a consultation but you do not mention if you have had an overnight sleep study. Have you had a sleep study? While I understand that you do not think that this is a sleep problem, the sleep study would give a sleep specialist very good information about your brain activity at night.

I would encourage you to follow through with a sleep study if you have not done so already.

Regarding "an episode of disorientation and sensitivity to light that lasted 2 days" that you mentioned. Have you seen a neurologist regarding this? I am also thinking about a Neuro-Opthamologist. These might be very helpful people to consult with.

I look forward to hearing from you again.

Teresa

@cliffordjames I would begin with a neurologist( perhaps one who is board certified in sleep disorders) or knows someone who is . A neurologist will know where to begin for sure. Many hospital even in small cities have sleep clinics now who have doctors and nurses who specialize in sleep disorders. However, I think that you need to find out what event caued this problem in the first place RiGHT NOW..don’t wait. You need to see someone immediately. This is a very dangerous thing. If I were you I would call for an immediate dr. appointment with a neurologist and if you cannot get one , have someone take you to the ER of a large regional hospital. I am really concerned about you and you should be as well. I amso glad that you wrote. Please get cared for today.

@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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@johnbishop No, the serotonin supplements did not help. I am simply a man without an official diagnosis or doctor.

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