Sleep Disorders/Sleep is destroying my life
QUESTION: I know you can't diagnose anything, but I'll take anything I can get. I have severe episodes of hypersomnia about every 2 weeks, when I sleep for at least 3 days before even becoming aware of it. I do get up very seldom for water and urination but am barely conscious. These episodes generally extend to 5 days because of how hard it is to get out of bed, but after the first few days I am at least somewhat self aware. After that that it takes another 2 days for me to re-acclimate to feeling normal and eating/sleeping normally (no, I do not eat anything during these 5 days - water only).
This literally is ruining my life because I lose a week of my life every other two. It can not be normal. I have been to sleep doctors but have 2 problems: I can't complete a sleep study because of insomnia and they can't do the sleep study DURING one of the actual episodes. When I had a sleep study I ended up sleeping through the entire day without waking to complete the latency tests so the test was deemed inconclusive.
I beg you for anything you might be able to tell me. Please ask for any other info that might help you address this. Again, this issue is destroying all other aspects of my life because I never know when they will happen, but suddenly I disappear for a week at a time.
Again I will take any information you can offer. Thank you.
ANSWER: Hi there. I'm sorry that you're having these issues. I have a few questions for you. First, how old are you? When did this start happening? Do you have any other medical issues and what medications are you currently taking? Before you attempted the latency tests, you had the overnight study and they couldn't wake you up, correct? No sleep apnea was found I'm guessing. Do you work (or try to work)?
I'm wondering if the sleep doctors offered you to have an actigraph? It looks like a watch and you wear it for a certain amount of time (like 2 weeks). This will give them an idea on your sleep and wake patterns just in case they don't quite believe you (you know how some doctors can be!).
I highly doubt it's narcolepsy (that's what the latency tests are for). But that's why I wanted to know your age and current meds and conditions. There is definitely SOMETHING going on that is abnormal.
To be perfectly honest, when I was in college I would have periods where I could be asleep for 24 or more hours, then be awake for 48 hours, then be normal for a bit too. I had a difficult time maintaining any sort of normal schedule. But, 5 days is extremely long.
Let me know more details if you could. Thanks Jeff!
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QUESTION: I really appreciate your follow-up here. You can't imagine how much this has destroyed my life and I feel powerless to do anything about it.
I am 36 years old. Since high school I have had problems waking up, but if I'd had decent parents it wouldn't have been a noteworthy problem. I do not have any health conditions that I know of, except when I was able 18 I got very depressed and was put on Paxil. I am still taking it today, though my psychiatrist is in the process of switching me to to Zoloft. When I was about 23, I started sleeping for about 2 days, and then staying up 2 days, repeat...like you described in your college days. After a few years I moved in my ex-girlfriend, she helped me maintain a 1 day awake 1 day asleep schedule. It was very difficult for her to get me conscious and required a lot of patience. Getting out of bed was painful (I mean that metaphorically). Even with the help of prescribed Dexedrine it would take me about 2 hours to become fully awake. We broke up nearly 3 years ago and I did everything I could think of to try and wake myself every day. I was slightly successful, but then these episodes started. Nowadays I am awake every day like I set out to be, except for when these episodes occur. Also I have horrible insomnia where I can't get to bed before around 5am, and I sleep until around noon. I think part of the reason for this is fear that I won't wake up.
The episodes consist of about 2-3 of sleep where even when I get up to go to the bathroom I am not conscious enough to do anything about not going to back to sleep, though I'm not sleep walking. Occasionally I will remember some minimal thoughts, but it's sparse. During these first few days, I am able to sleep though pretty much anything. No amount of noise or anything else will even rouse me momentarily. On day 4 or so, when I get up to use the bathroom I am more awake, but I still feel the need to go back to sleep. Around day 5 I won't be able to get back to sleep as easily, and will eventually become restless and get out of bed, almost always in the evening. I won't be able to sleep until the next late the night. It takes me another 2 full days of feeling terrible to re-acclimatize to feeling normal. It's hell.
I don't know anything about any results from the sleep study because they wrote it off, however I probably would have heard something if they observed apnea. I don't think that's it. I don't know what happened when it came to them waking me, because I was asleep. I don't know how hard they tried. All I know is I fell asleep around 2am and didn't wake until 4pm when they sent me home. This was the only sleep study I had and it was over 10 years ago.
By the way, I am not able to work because of these problems and am currently receiving disability benefits. I also have major dental issues, but have missed ever dentist appointment because of the sleep episodes. The doctors believe me about the sleep but don't know what to do. I have never heard of an actigraph. I'll have to look it up. I am going to ask my doctor if I am able to, whether I should try taking a larger dose of Dexedrine the first time I get up to go to the bathroom, at about 12-18 hours in. Maybe that could wake me? When I was with my girlfriend, I had her feed me the normal dose, but that didn't work (also it probably has to be all immediate release). He's insistent I do the sleep study, but doesn't understand the 3 problems I told you about (inability to get to sleep on time so I get enough sleep before being woken at 5:30am, and that I really don't think it will tell them anything unless they do the test DURING one of the episodes).
The bottom line, and correct me if I'd wrong, is I don't see how anyone can sleep for 3 days straight. Even if someone were abusing sedatives (which of course I'm not) 3 days is not just abnormal, but closer to comatose than asleep. While it doesn't help that I can't work and have moderate depression, this amount of sleep is still way beyond what those issues could cause.
I know this is complicated and very unusual, but please try and dig into the deepest recesses of your knowledge to see if you can think of anything. When I say this is ruining my life, I'm not exaggerating in the slightest.
Sorry this is so long, but I want to ask two other things:
1) I almost never remember any dreams, but I did early in life. Could that mean I'm not getting to Stage 4 sleep, and maybe the reason I stay asleep?
2) If I was able to complete a sleep study, but it was not done during one of the episodes, would it be largely useless in determining what's going on during these episodes? I mean, I sleep 6-7 hours every night and wake up and that's pretty normal. Wouldn't testing me during a night like that be pointless to figure out what's going on during the long sleep periods? Do you know what I mean?
Thank you again so much for your time and effort. I can't begin to tell you how much I appreciate it. I am so desperate, even scared, because living like this isn't really living at all.
Hi again. Ok so I was looking some stuff up, and the only thing I could find (I remember hearing about this before) is Kleine-Levin Syndrome. They call it sleeping beauty syndrome, as well. The symptoms sound extremely close from just corresponding with you via writing. It is very rare, (I think only 1000 documented cases?) and can cause people to sleep for sometimes even weeks at a time. They are extremely groggy and hard to wake up, sort of like a zombie. The symptoms typically start in the teens (but can happen at any age). There are different versions, but it said most of the time it starts to get better on it's own after 8-12 years (the symptoms start to slowly improve). There is no cure, and typically there are no medications for it, however it occasionally responds to lithium or valium. 70% of the people who get it are male.
So that might be what is going on. As for sleep, it's probably mostly delta (stage 3/4 sleep) you are getting....although if you have this disorder I'm sure you're sleep (brain waves wise) is abnormal and all over the place too.
I know that's a bummer if that's what it is....but at least you'd have a diagnosis of something (an answer).
So really quickly, you can definitely bring up an actigraph to your doctor as well. Think of it like a pedometer in a way. It records for I think it can be up to 2 weeks. I'll attach a picture, so you can get an idea what it would look like (not yours, but a more normal persons might look like).
You should definitely bring this up with your doctor (all of it). If you could let me know sometime what he said, I would appreciate it. I hope this helps a little, or at least gets you on a better path to finding an answer.