1. < Sleep Health

Anyone wake feeling exhausted after seemingly dreaming all night

Posted by mazeppabob @mazeppabob, Jul 26, 2022

I never wake refreshed/rested. It has been like this for as long as I can remember and I am 77 now,
My sleep medicine DR called it EPIC dreaming. A rare disorder with no known cause or treatment. His only suggestion was to prescribe Modafinil (a stimulant) taken in the morning to perk me up.
I have tried CPAP and other meds to no avail.
I wonder if this is really that rare.

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mazeppabob | @mazeppabob | Mar 1, 2023
In reply to @angelgeraghty1988 "My name is Angel Geraghty, in one week I turn 35. I have been vivid dreaming..." + (show)
@angelgeraghty1988

My name is Angel Geraghty, in one week I turn 35. I have been vivid dreaming since I was very young. I have also had a very traumatic childhood, teenage life and adulthood. I have reoccurring dreams to the point I can indicate in my dream that I have been there in that dream, know the outcome and have even managed to changed some of the outcome. Still today I can tell you some of the vivid dreams I had that are months even years old because they are that vivid that the dream itself has stuck with me and became a memory. I have tried teas, I have tried no electronics near the bed, a salt lamp beside my bed, no eating hours before bed, medications you name it it doesn’t work. I have had my spouse wake me up many times not from lack of breathing but from hyperventilating and crying in my sleep. There are so many vivid dreams I can remember still today it’s almost like when I go to bed I’m living a second life. Either running from someone or something even things I’m not scared of in my awake world. Fear of water, fear of snakes, I can’t cross bridges in my dreams with out crawling, faces coming out of walls, possessed inflatable dolls and possessed killer dolls, killer mansions with anger spirits haunting them, beautiful old abandoned houses beside the water that are just waiting for that one strong enough wave to bring it all crashing down, the fire balls falling from the sky and hiding first in a bus then a building (that was maybe 8-9 years ago that dream), to faces coming out of walls, to molestors, to a woman strapped to a Gurnee in a room surrounded by glass, I have even dreampt Houdini
Had a museum near somewhere I could only think was near New Orleans because it was a bayou, there was killers looking for someone, I found a walk-in talkie, and had to swim down a creek until I came across a native tribe who somehow spoke English and was thrilled I was Canadian and got us help. In that dream I came across a half eaten deer and I could smell the rotten flesh. This wasn’t the first time, I have even dreampt of being at my own wedding and stepping away and went down by the water where there was a dead moose and again all I could smell was rotten flesh. I wake up half the time more tired then when I went to bed. I am mentally wiped all day long which leads to depression as I feel like I’m completely useless. Cloudy days are the worse because I’m already tired and then add that on. I have had to 100% cut all caffeine anytime after 2pm or I’m guarenteed my spouse will be waking me up asking if I’m okay or I’ll wake up crying. As it’s been said on here, I can go in and out of awake and asleep and be thrown right back into the same dream over and over until I have completed what I was there to do, find who I have to find, protect who I have to. If I want it to stop I actually have to get up, go for a smoke outside and get air and pray when I go back to bed it stops. Even then it’s touch and go if I get thrown right back into that dream or not. I have recently started dream journaling. Would like to be more frequent with it but it’s hard when I’m so tired. So for now, I am trying to record re-occurring dreams. Who knows maybe they will be a movie one day lol. I write this to let others know your not alone. It’s hard, it’s so freaking hard and so exhausting. So if anyone has any suggestions, it would be great.

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@angel
All I can offer is a hug. I have similar symptoms but not as severe or disturbing as yours. Sleep medicine was no help since they only prescribe CPAP machines.
The difficult part of this is finding a doctor who will listen, take ownership, follow up, research, and not fumble when handing the ball to someone else. Everytime this happens you have to start all over.

REPLY
rockysoftis | @rockysoftis | Mar 24, 2023

Greetings,

I just returned from the Mayo clinic a few days ago and was looking for diagnosis information. I came across this thread and signed up to share what I know. My son has had a sleeping disorder for over ten years. It resembles Epic Dreaming, but the doctor believed it was a variant.

There is one known study on Epic Dreaming, although it is small. It is titled: Polysomnographic and clinical correlates of epic dream complaints: A retrospective study of 28 Taiwanese adults.
_https://experts.umn.edu/en/publications/polysomnographic-and-clinical-correlates-of-epic-dream-complaints

It does contain medical treatment.

I don't know the rules yet for this forum, and I am not a doctor or in the medical profession. I also hesitate to identify the medication he prescribed. I can post his name and medication if it is allowable; just let me know.

Also, he intimated he was treating someone for a similar diagnosis.

Hope this helps someone!

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023
In reply to @rockysoftis "Greetings, I just returned from the Mayo clinic a few days ago and was looking for..." + (show)
@rockysoftis

Greetings,

I just returned from the Mayo clinic a few days ago and was looking for diagnosis information. I came across this thread and signed up to share what I know. My son has had a sleeping disorder for over ten years. It resembles Epic Dreaming, but the doctor believed it was a variant.

There is one known study on Epic Dreaming, although it is small. It is titled: Polysomnographic and clinical correlates of epic dream complaints: A retrospective study of 28 Taiwanese adults.
_https://experts.umn.edu/en/publications/polysomnographic-and-clinical-correlates-of-epic-dream-complaints

It does contain medical treatment.

I don't know the rules yet for this forum, and I am not a doctor or in the medical profession. I also hesitate to identify the medication he prescribed. I can post his name and medication if it is allowable; just let me know.

Also, he intimated he was treating someone for a similar diagnosis.

Hope this helps someone!

Jump to this post

Hi @rockysoftis and welcome.
I noticed that you wished to post a URL to research article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

- Polysomnographic and clinical correlates of epic dream complaints: A retrospective study of 28 Taiwanese adults https://experts.umn.edu/en/publications/polysomnographic-and-clinical-correlates-of-epic-dream-complaints

You are permitted to post the name of medications or therapies that have helped your son. How is he doing now?

REPLY
rockysoftis | @rockysoftis | Mar 26, 2023

Thank you for making it into a link. I received a warning that I could not post it, so the underscore up front allowed me to. It is from the University of Minnesota and is a safe link.

Thank you for asking; my son is doing ok. His sleep issues are so severe he is on total disability, but he has several additional disabilities, such as Aspergers Syndrome, ADHD, depression, and anxiety, to name a few. He would like to work, but his sleep disability is so bad he has no circadian rhythm.

He got a job at Costco but resigned after two months due to absences. He would have been terminated the day he left as he could not work.

He is titrating on Clonazepam which the study I included identified as helping. We started at .25 mg and can go up to 1 Mg. We are going to .75 mg tonight as the lower doses have not helped. Other options after this include temazepam between 15 to 30 mg; if that does not work, Lunesta between 2 to 3 mg. We have been working with another local sleep specialist for about five years. His current Psychiatrist recommends evaluation at the Mayo Clinic.

After ten years of helping with his treatments, we both know not to expect miracles. However, I will not give up hope. There is always hope, but if I stop hoping, there is nothing.

I am still hoping what I learned at Mayo can help someone!

REPLY
1 reply
covidstinks2023 | @covidstinks2023 | Mar 27, 2023
In reply to @mazeppabob "I live close to Rochester Mayo clinic and asked for a referral to Mayo sleep medicine..." + (show)
@mazeppabob

I live close to Rochester Mayo clinic and asked for a referral to Mayo sleep medicine I spent probably an hour with a sleep psychiatrist explaining symptoms, diagnosis and meds tried. After all that he said well you have already done everything that he would suggest and that was it.
My whole point in asking the question is to see if dreaming disorders are really that rare, unreported or misdiagnosed. Maybe chronic fatigue syndrome is a sleep disorder?

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CFS can cause sleep disorder as I have a dear friend who has it. Have you tried Melatonin 5 mg for sleep? Sounds like you go to sleep but are a light sleeper....I could be wrong. I'm so sorry. This has got to be extremely tiring. God Bless.

REPLY
1 reply
vayana | @vayana | Apr 9, 2023

Hi, first of all, I'm not a big advocate of cannabis at all, but what I do know is that you stop having dreams altogether when you regularly smoke weed, especially the Indica strain. Just a few drags or 1 joint before bedtime is enough.

If you can't stand smoke, then you may try an edible, like a cannabis brownie. If you're not used to cannabis at all, I wouldn't recommend more than 1/8 of a cookie or brownie as it can be quite potent and too much might make you feel uncomfortable instead of relaxed. Edibles take about an hour to take effect, but you can take it right before bedtime so it'll become active while you sleep.

I'm not gonna tell you it's healthy because it's natural, but there are some properties about marijuana that may be beneficial under some conditions. and in the right dose. In your case, I would definitely rather have a little bit of daily weed at bedtime than prescribed chemicals every morning.

REPLY
1 reply
vayana | @vayana | Apr 9, 2023
In reply to @covidstinks2023 "CFS can cause sleep disorder as I have a dear friend who has it. Have you..." + (show)
@covidstinks2023

CFS can cause sleep disorder as I have a dear friend who has it. Have you tried Melatonin 5 mg for sleep? Sounds like you go to sleep but are a light sleeper....I could be wrong. I'm so sorry. This has got to be extremely tiring. God Bless.

Jump to this post

Melatonin is known to increase REM sleep, the sleep cycle when dreaming occurs most. It's usually recommended for people who don't sleep deep enough or to assist with jet lags to induce sleep, so I don't think it's suitable for someone who seems to get too much REM sleep.

REPLY
1 reply
vayana | @vayana | Apr 9, 2023
In reply to @rockysoftis "Thank you for making it into a link. I received a warning that I could not..." + (show)
@rockysoftis

Thank you for making it into a link. I received a warning that I could not post it, so the underscore up front allowed me to. It is from the University of Minnesota and is a safe link.

Thank you for asking; my son is doing ok. His sleep issues are so severe he is on total disability, but he has several additional disabilities, such as Aspergers Syndrome, ADHD, depression, and anxiety, to name a few. He would like to work, but his sleep disability is so bad he has no circadian rhythm.

He got a job at Costco but resigned after two months due to absences. He would have been terminated the day he left as he could not work.

He is titrating on Clonazepam which the study I included identified as helping. We started at .25 mg and can go up to 1 Mg. We are going to .75 mg tonight as the lower doses have not helped. Other options after this include temazepam between 15 to 30 mg; if that does not work, Lunesta between 2 to 3 mg. We have been working with another local sleep specialist for about five years. His current Psychiatrist recommends evaluation at the Mayo Clinic.

After ten years of helping with his treatments, we both know not to expect miracles. However, I will not give up hope. There is always hope, but if I stop hoping, there is nothing.

I am still hoping what I learned at Mayo can help someone!

Jump to this post

I would steer clear from Benzodiazepines altogether. They are extremely addictive and disrupt your entire natural physiologic ability to sleep. They actually block receptors in your brain in a way that prevents normal sleep. Getting off of Benzo's is an absolute living hell and takes months or even years too.

In your case, creating a daily rhythm is crucial. Wake up the same time every day, eat healthy and regularly and exercise lots. If your son has so much free time, I would recommend mountain biking. 10 to 20 miles a day of intense cycling doesn't get boring and by the time he finishes the body is physically tired. I found this to be the key to recovery myself: If your brain is not capable of normal sleep, make sure the body is exhausted and your brain will follow automatically.

Now, if you're not used to exercise, don't go overboard on day 1 and build it up gradually. Start slow and time your progress. It may take a few months to get into the habit and get to a point where you're able to get enough exercise and get back into a normal sleep cycle, but once you do, most of your issues will gradually fade away and you won't need any prescription drugs anymore.

REPLY
covidstinks2023 | @covidstinks2023 | Apr 9, 2023
In reply to @vayana "Melatonin is known to increase REM sleep, the sleep cycle when dreaming occurs most. It's usually..." + (show)
@vayana

Melatonin is known to increase REM sleep, the sleep cycle when dreaming occurs most. It's usually recommended for people who don't sleep deep enough or to assist with jet lags to induce sleep, so I don't think it's suitable for someone who seems to get too much REM sleep.

Jump to this post

I can say that taking antihistamines cause me to dream constantly. For that reason I steer clear of them. Melatonin works for me.

REPLY
tired777 | @tired777 | Apr 28, 2023

Thank you for this post. I had never heard of epic dreaming, and now I finally have a term for this problem. I have been experiencing these very vivid dreams since I was in my mid 30's. I'm now in my mid 40's. It does not happen everyday, more like 4-5 times per week. I have to force myself to stay awake when I do wake up from the dreams in the morning. Otherwise, I can keep sleeping for hours more. If I wake up in the middle of the night, I immediately drift back into a dream within minutes. I can take a one-hour nap, and I will dream the whole time. I am exhausted all day. Coffee does not help.
My dreams are often, but not always, filled with anxiety. That could be a psychological thing as I have GAD and depression that I am on medication for and it helps me. However, it seems to be less effective for this dream state. I had been taking medications for GAD and depression for years before this started. The sleep is also accompanied by excessive sweating. I'm not sure if this is a perimenopausal thing because night sweats are common for women in perimenopause. I basically feel like garbage a lot of days.

REPLY
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