Thanks MJP! It is very nice to know I am not alone. I know what you mean; sometimes I would rather be in that "other life" since I seem to be able to get a lot more done "in there"! I just hate the fact that I don't think I will ever wake up refreshed again. I have given up hope on that, although there was a day in the summer of 2003 when I woke up not remembering any dream, and I woke up feeling great! No idea why, and have not been able to duplicate it.
So for now I will go on living with the fact that most people would never understand when I try to explain to them that sleeping makes me tired, as I am so "busy" dreaming all the time. I will even dream for a minute or two if I fall asleep for a brief time. So times I can even be falling asleep while watching TV and see things on the TV that are not really there. Half asleep, half awake.
I have tried to explain this "excessive dreaming" to doctors, but they just don't seem to believe me. Boy I wish they could dream like me for just one week, and then we would see how well they like it! Since that is not going to happen, back to the internet to find someone out there who finds this fascinating enough to want to help us figure out how to turn it off.
Later!
I have the same problem. Sometimes I will constantly dream and wake up every hour or two feeling paralyzed by fatigue. So I fall back asleep only to dream more. I'll just keep waking a dreaming sometimes up to 12-14 hours. I finally get up because I'm usually sore from lying for so long, and I still feel tired. Doctors just tell me I'm depressed and try to give me pills. What do you think about having a study of brain activity during short naps where we're supposed to be dreamless?
ReplyDeleteIt would be great, if any one would do it! I have ben trying to find as much as I can about this, but there isn't much out there other than to say they have found nothing to help.
ReplyDeleteIn one of my sleep studies they had me take 3 naps the next day, but even after I told them I was dreaming for 5 minutes (20 min nap, and by the third one it took me 15 min to fall asleep) they told me I was not. Excuse me, but I would know better than you if I was dreaming!
So my local "sleep doctors" don't even believe me when I tell them I am dreaming, because I wasn't in REM.
There was one time in the summer of 2003 that I woke up refreshed, and the only time I can remember NOT dreaming. We were redoing our entire yard, so I am trying to figure out if out was the extreme sun exposure, gallons and gallons if water I drank, or simply just being so exhausted that have me a break from dreaming. So far I have not ben able to go dreamles again, but praying done day I will!
If I find any thing new out about us poor tormented dreamers, I will certainly post it here!
madam i am suffering from this from 2years.i am wondering how you are doing your day time work.i am tired all day.pls tell me
DeleteI am a Minneapolis, Minnesota resident and was SO relieved and blessed to find your blog! I struggle as well with constant dreaming and daily fatigue but had no idea there was information out there, or that there were others or that I had anything addressable other than a mysterious and awful problem. I found you, Auntlello1 through your post on the site medhelp.org in June 2011 and followed the post here just yesterday. I've even read some of your hyperthyroid blog postings trying to find a link between hyperthyroidism and the constant dreaming issue. Personally I have not seen a physician for testing on either because I am afraid my insurance would not cover it. I have since checked in my area for Epic Dreaming Disorder and MEETUP support groups but haven't found any. Have you began any support groups around what your research found to be Epic Dreaming Disorder? Any advocate group? Like you said, we need to find a way to support one another and find others as well as advocate and promote research! All excellent ideas! I admire you for your persistence and courage. You are an inspiration. I look forward to hearing from you.
ReplyDeleteHi there, I just came across your blog because I was googling Epic Dream Disorder because I was just diagnosed today with this condition by a sleep specialist. I wanted to continue the discussion since perhaps some scientific progress has been made since you posted originally. I was prescribed Klonopin (Clonazepam) at bedtime to counter the "remembering of dreams" as my doctor put it. You might want to try it! Best of luck -- Alexa
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ReplyDeleteI would love to find a solution to this. I have been experiencing this for as long as I can remember - possibly my whole life. Meds make no difference!
ReplyDeleteI also dream as I'm falling asleep and waking.
Has anyone found a solution or anything that helped improve their sleep quality? The fatigue and aching muscles are unrelenting - 24/7 for 40+ years
Hi Talia,
ReplyDeleteI too dream as I'm waking from or falling asleep, in addition to all night long. I was diagnosed with epic dreaming over 10 years ago, but the lab basically said good luck getting help because everyone wants to research and cure cancer first (completely understandable, but frustrating nonetheless). The only thing I found that worked somewhat over the years is the old formulation of 12.5mg controlled release ambien. Because it works all night it tamps down the dreaming (or at least my memory of them). I had to come off it when I got pregnant and have tried for a few years NOT to go back on because the withdrawal was so difficult, thus I'm now searching pretty hard for alternatives! Give it a try if you're desperate like I was, and let me know if you find anything new that works!
I've been suffering from undiagnosed epic dreaming for about 4 years now. So frustrating as every sleep specialist refuses to listen to my actual symptoms and continues to look for sleep apnea, insomnia, and narcolepsy. I've also been thrown drugs like nortriptyline (anti-depressent) and Prazosin (for PTSD nightmares) which have terrible side effects and no effect on epic dreaming. BUT! On basically a whim, when I was desperate to try something new, I tried Hemp Gummies (CBD, not actual edibles, available on Amazon and at Bed Bath and Beyond). Amazingly, these have actually helped. I am still having epic dreams, but the quality of sleep and feeling rested shot up dramatically the VERY FIRST NIGHT I took them. Hope they work for others. :) J
ReplyDeleteJen, can you tell me the name of the brand for the Hemp Gummies? I searched it on Amazon, but there are many that go by "Hemp Gummies."Your post describes my experience perfectly (sleep specialists just pushing those drugs you named, fall back on their usual diagnoses). Thanks.
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