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Can I Ask About Your Eds


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#1 Natterbox

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Posted 26 February 2013 - 10:50 PM

Would anyone please be kind enough to describe how they are affected by their Excessive daytime sleepiness? 

 

I am not diagnosed with any sleep disorders but am having significant problems with my sleep and what feels like excessive daytime sleepiness. I have been to my drs about the problem (in fact I have been reporting it for 7 plus years now) but because I have had episodes of depression in the past they won't send me for a sleep study and insist on just giving me antidepressants which I will no longer take (they often cause drowsiness in and of themselves (among other nasty side effects) and my daytime sleepiness is already problematic enough as it is. So I am getting no where.

 

I suspect a possible sleep disoder but am having trouble figuring out which one is most likely, if any is present at all.

 

To give a brief outline:

 

My sleep problems began in my early teens and have always been slightly complicated.

 

Firstly my circadian rhythm has never been good at functioning at the usual time of day and night that society says it is supposed to, so when I say daytime...I mean daytime as it is relative to me (I usually sleep best from 4 am to 12 noon). At first that was my main problem...I had trouble with mornings obviously and struggled to hold down jobs because of it.

 

However, from the age of 14 I often complained about broken sleep...ie my bladder would wake me or I would wake out of a very vivid dream or for no reason at all but then go back to sleep again. My drs blamed anxiety for both the broken sleep and the wonky sleep schedule (inability to sleep at a normal time).

 

PN I don't get broken sleep every night...just some. If I sleep at my preferred time of 4 am to 12 I also have little trouble getting to sleep. It is only if I try to sleep earlier.

 

Fast forward.

 

In my early twenties I had a drinking issue (only briefly) as I am a bit on the shy side and the drink did help me to socialise sometimes. I quit many years ago now but at some point during that time I developed a tendency for sleep paralysis. It stayed with me even after I stopped drinking although it is very infrequent.

 

Some time after this my daytime drowsiness started to worsen and has been getting gradually worse ever since.

 

I am now 37....my circadian rhythm still appears to be wonky (sleeping pills really don't work for long so I no longer take them), the daytime drowsiness is at its worst, I only very occasionally get sleep paralysis but can be prone to dreaming immediately after falling asleep a lot (but not all) of the time. I am also having trouble staying awake over the drowsiness during the day (or when I am trying to stay awake). I rarely feel alert anymore and seem to be incapable of waking my brain up (except for brief periods during the night time as that is, and always has been, my peak energy zone) even with stimulants like caffeine (so again I don't bother using it).

 

My level of drowsiness fluctuates during the day...

 

Basically I can sleep for 8 hours a night with either no or one or two awakenings for various reasons. Still be drowsy on waking but am able to stay awake for a while. However, I can't seem to stay awake for long...not without great difficulty anyway. Every so often my level of drowsiness worsens as though I have just been hit with a sudden dose of a strong sedative. Now I can sometimes stay awake over this but am pretty useless as my memory is like swiss cheese and I end up feeling like someone who is senile during these times. The easiest thing to do is to let myself sleep it off, so I nap. My naps can last from a few minutes (with or without a dream) up to an hour or so long (depending on length and quality of night time sleep...maybe 2 hour long naps if i was short on sleep the night before).

 

For a while I will wake up a little (but not be fully alert) after each nap but the drowsy feeling will only worsen again later on.

 

I really do not think my sleep issues are being caused by depression as I presently do not have all the symptoms of clinical depression. Ie I am upset that my hobby time is being disrupted by my need to keep napping for example but have not lost interest in them. I am motivated but too sleepy (not fatigued) to do things most of the time and so on. I am however feeling irked that my ability to function is being destroyed by this, especially as I also have a problem with migraine headaches which also mess things up for me...including my sleep sometimes.

 

I did suspect apnea for a while (I am over weight but am female) but I don't snore and when I tried to tape my breathing I could not hear any breaks in it (just a bit of wheezing now and then as I still smoke but am trying to quit...I do use the nicotine to help with the EDS a bit).

 

I have recently made some lifestyle changes (ie I removed the sedative based medication and am presently medication free, I am trying to lose weight and have also gone gluten free as I was previously getting stomach upsets and as I have a brother with celiac disease I thought it would be worth a try...it has settled my gut problems but has not stopped the migraines or the problems with my sleep and so on) and I am hoping that, in time, these will have a beneficial effect.

 

Anyway, I would like to hear about others experiences with EDS

 

Thank you in advance for any feedback.

 



#2 Natterbox

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Posted 26 February 2013 - 11:00 PM

PN I do apologise for any grammatical and spelling errors...I am trying to catch up with some study I am doing and I was in rather a rush when I made the post.



#3 DeathRabbit

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Posted 26 February 2013 - 11:39 PM

I would see a Doctor first and have them do a full blood work up, check for vitamin deficiency, anemia, hormone imbalances, the usual suspects. Then get them to refer you to a sleep specialist, and they will be the ones to check for Apnea or N. Narcolepsy is a pretty rare disease, and there's no cure so I really hope you don't have it! As for my EDS, yea I do have fractured sleep sometimes. Last night was pretty bad for example, and I felt foul all day because of it. But even if I get a great 9 hours of sleep, I still feel impaired to varying degrees all day long, and I'm sometimes hit with waves of almost delirium, sometimes coinciding with headaches.I used to to get hypnogoic hallucinations a lot, not so much anymore now. I have had a few cases of sleep paralysis, but not too often. My main problem is the memory/cognition issues or "senile" feeling you describe, as well as the headaches. Many people refer to this as brain fog. When it hits me really bad, it feels like my brain is trying to wade through sludge or a bog or something. But if I try to sleep too long, it's like I get hit with a different type of fog; I think it's my body scaling back my metabolic rate for sleeping too long. I'm, actually pretty foggy right now, so if I'm not making complete sense, please forgive me. I'll be lucky if I remember I even made this post tomorrow. But yea, I definitely urge you to investigate it. Depression does not cause the kind of EDS you speak of. Having dealt with both, I know the difference and I've had so many Doctor's before I was diagnosed just give me the "You're just depressed" line, so don't take their bullcrap if they try to sell you on that line of reasoning.



#4 Megssosleepy

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Posted 27 February 2013 - 12:06 PM

Natterbox,

 

Your story has many similarities to mine... Docs always blamed me for my EDS... "youre depressed, you need to eat better, exercise more, ect...)  Finally after a ton of tests came back normal I was off to a sleep doc.

 

He shocked me with "I am pretty sure you have N, but lets do a sleep study" And here I am.  Ive had my Dx for almost a year, and sometimes it still hasn't sunken in... having N sucks... so, like DR I really hope it is something else for you.

 

When you do see a Sleep Doc, tell him pretty much everything you said above.

 

My EDS is like a constant fog from the moment I wake till I go to bed at night.  Although, right before bedtime it sometimes lifts.  Sometime the fog is light and easy to pass through but more often its thick and nasty like sludge.  I can feel it coming and I know I could just fall right to sleep... but like most of us we fight our way through it.

 

The thing about PWN is that our tiredness never goes away no matter how much sleep/rest we get its always there at some level.    I cant remember a time when I was not utterly exhausted... its crap.



#5 sweetest_shone

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Posted 27 February 2013 - 10:12 PM

EDS is not comparable to depression, or unhealthy lifestyle (eating, exercising, etc). It's just NOT. I was fed the same lines of crap for years. N is different for every person. I have read somewhere that PWN don't get more sleep than the average person, but they sleep more often (aka: naps). This is not true for me. At least, not right now. I could sleep 12 hours straight. I don't. But I really, really want to. Like the others said above, It literally is like thinking in a fog all day and its really hard! I have to work way harder (mentally) to get things done on the job than I use to. My eyes feel like they will close at any moment almost all day long... And this is while I am on stimulant meds. They only provide temporary relief. The fact that no one will listen to you because of your depression history is nonsense. You say you aren't. And that is fine- but people CAN be both!! You need to find a doctor that will listen to you and take you seriously. I'm not saying you need to be sent straight away to have a sleep study. But if the Dr is going to take you seriously they'll start at the bottom and run basic and then more comprehensive blood work like D.R. was saying.
I'm getting worked up, but I work in healthcare and I see this (Dr's not truly listening and taking patients seriously) way too often!! It's sad and frustrating!
I think you need to go into your next appointment with a stern attitude about what is going on with YOUR body and YOUR day to day life and let them know what it is that you want and expect to be done- but be reasonable. After all, they are the ones with the degrees! ;). But you are the one that deserves exceptional care. Just sayin.
Good luck to you.

#6 Natterbox

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Posted 27 February 2013 - 11:14 PM

Hi. Thank you for the replies.

 

The drs have done routine blood tests for other conditions but found nothing. When they came back normal they put my sleep issues and migraine headaches down to psychiatric reasons such as anxiety and depression becasue it's on my medical records (pn that they do not stop to ask me how my mood is or whether I am feeling stressed at the time though!) and just give me antidepressants (ones that "may cause drowsiness") which I will no longer take for various reasons (I really really do not need something that makes me feel drowsy...I have tried it, it just makes things much worse and I have a hard enough time trying to wake my brain up as it is. Plus they give me horrible side effects in other ways).

 

I did ask for a referral to a sleep specialist and was told that they cannot refer me to anyone unless they think the problem is physical (ie unless I snore for example, which I don't).



#7 DeathRabbit

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Posted 28 February 2013 - 09:57 AM

Are you serious? That is silly. For one thing, 25% of cases of sleep apnea have no physical signs other than the person feeling like crap. Doctors always love barking up the psych tree because it makes their job super easy. Just pump them full of happy pills until they're too drugged to care!



#8 Natterbox

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Posted 28 February 2013 - 11:20 AM

That pretty much sums up my last experience at the drs (and most experiences before it) a month or so ago.



#9 sweetest_shone

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Posted 28 February 2013 - 11:37 AM

Like I said it really sounds like you need to find other care if they aren't taking you and your needs and care seriously.

#10 munky

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Posted 28 February 2013 - 09:18 PM

I agree. Definitely time to find another doctor. No one should ever continue to see a physician who refuses to listen to them and address their concerns in a constructive manner.

 

Myself, I've had circadian rhythm issues literally my entire life, according to my mother. I can even remember being put to bed at a "reasonable" bedtime when I was two, and still being awake several hours later, when my mother looked in on her way to bed. I'd follow her into her room, and while she slept I'd play beside her bed until I got tired. Then, I'd clean up my toys, turn off the light, and put myself back to bed. That would usually be around 3AM. I'd sleep for a couple of hours, then get up, and sometime in the afternoon I'd take a four hour "nap". Starting school and not being able to sleep during the day was horrible ... I have never slept well at night (As a kid, I used to joke that I should've been born in Japan.), and even when I did sleep it wasn't for more than 4 hours at a time--and I acted out my dreams. So, circadian rhythm disorder, ideopathic insomnia, and REM behavior disorder all from the start.

 

I think the Narcolepsy symptoms may have started in my teens ... but I can't be sure, because with the circadian rhythm issues, I've always had trouble staying awake through the afternoon--which is why I started working night shifts as soon as I had a job that allowed it, and have done so for the last 13 years. It's only been lately that I started having trouble staying awake at work, which led to the Narcolepsy diagnosis.

 

As for how the EDS affects me ... I can't stay awake. I can't remember anything. On a bad day, I can't track simple conversations.There are times when my brain just ... shuts down, I guess, and I can't so much as tell what people are saying. I know they're saying something, I can hear the words, but they make no connection in my brain. Not such a big deal when it happens with the tv, but when it happens in a conversation it's pretty difficult to deal with, especially at work. Sometimes, I have the same problem with pictures. (I don't include portraits, or pictures of people, in this category because I have other issues there.) I'll be looking at, say, a picture of a house in a field ... and I can't, at first, process what I'm seeing. I have to really stop and think about it, build it up in my head step by step, before I can comprehend that it's a picture of a house in a field.

 

I don't have sleep attacks while I'm driving, but that's partly because I simply won't drive if I'm tired beyond a certain level--beyond what's "normal" for me. If I start getting more tired, I pull off the road and either take a brief nap, or get out and walk around a bit. If I can keep myself busy--or at least keep my mind active--I can hold off sleep attacks for quite a while. Knowing this, when I'm driving, I'll listen to a talk radio station with hosts that irritate me. That irritation--and me talking back at the radio when they say something particularly stupid--helps keep me awake.

 

I'm on treatment. I take 250mg/day of Nuvigil, and I'm supposed to take a 20-minute nap every 4 hours, which worked wonderfully while I was on an 8-hour shift. However, my job switched to 12-hour shifts, and it isn't going nearly so well now. I'm having sleep attacks at work again, and when it comes time for my first nap, I'm just not able to get to sleep--even if I was fighting to stay awake just before that. At least, I don't think I'm sleeping, because I'm generally just lying there, bored out of my skull, and wondering if it's been 20 minutes yet because it feels like it's been an hour ... and I'll look at my phone and see that, no, it's only been 10 minutes ... so I lie there for what feels like another hour until the alarm on my phone goes off. The second nap, I still don't feel like I'm sleeping, but I'm pretty sure I am because I have weird dream fragments, the time flies by, and when the alarm goes off it always surprises me that it's been 20 minutes already. However, I feel worse than I did before the nap, and I still end up having sleep attacks before the end of my shift.

 

I have no energy at all. I have to force myself to do anything other than sleep. I'm setting up a hobby farm at home--a small vegetable patch to serve myself and my mother with fresh veggies, with her canning the extras and/or trading with neighbors and my co-workers. We also have a couple of chickens, for fresh eggs. There's a lot of work involved with that. The previous property owners didn't do any gardening, so we're having to start from scratch. Plus, they didn't take care of the property at all, so there's a lot of cleanup to be done in the woods--dead trees and branches to be cut down, cut up, hauled out ... low places that need filled in, berry patches that need attention if we're going to get good crops out of them ... So I have a lot to do and no energy to do it with. I force myself to do some of it every day I don't work, but I have so little energy that I don't get much done.

 

And on the days I do work, that's all I do: go to work, come home and sleep, repeat. I'm supposed to be trying to get 7 hours of sleep every day, but to do that, I'd have to fall into bed as soon as I walk through the door, and I do have to unwind a little and check on my mother. She's still mobile, she does a lot of what I can't do around the property, but she does have heart problems among other things, and I just can't sleep until I know she's doing okay that day. So, if I'm lucky, I might get 6 hours in bed. That still doesn't amount to 6 hours of sleep, though, because I still can't sleep for more than 4 hours without waking up. Most days, I can get back to sleep within a half hour or so, but some days I can't.

 

And, at this point, I'm not sure how this post got so long, when all you asked was "how does EDS affect you?", so I'm going to stop typing now. I only hope it all made sense, and I apologize if I went off-topic. Tonight's a bad night: I can't even effectively track what I'm saying, let alone other people. Work's gonna be fun.