13 replies to this topic

[SnoozleBear]

Hi all,

I'm new here, not sure if this post belongs here.. I have read over a few other threads on this forum and can really relate to a fair bit of it...which is both a bit comforting and nerve racking at the same time

 

Ive been to a number of GP's at least 7 times over the past 3 years regarding why im tired all the time, had thyroid, iron, vitiman D, B12, liver and kidney tests and ECG's (heart test?) all have come back fine. I have made an appointment for this Monday with a nice GP i have seen only a few times now but never asked about my sleep. I am desperate for a sleep test, to at least rule out a problem? or hopefully give me n answer. Most GP's have been reluctant to write a referral. 

Im hoping the people here at this forum could tell me what the important symptoms I have are and what I need to tell the GP. 

 

I've had issues with sleep since I was a child. The problems have tended to change, come and go, etc. but the underlying problem is always being extremely tired! I'll write a bit about my past sleep and my problem now, This is probably going to be a long post but im hoping someone will be brave enough to read it through and give me some advice

 

from the time I was really young (4 or 5  up until the age of 10 to12) id have nightmares and bad night terrors, and only fall asleep after hours of lying there awake. Before falling asleep, waking up (or sometimes at 2 or 3 am) quite often I used to swear I could hear someone say my name, or my mum telling me to get up and get ready for school (even though she was fast asleep). A few times I actually got up and dressed and started making breakfast and getting ready at (2am in the morning my mum told me). I don't think I was asleep, but I wasn't really awake either and didnt realise exactly what I was doing or the fact it was pitch black outside, was sort of on auto pilot.

At 13 or 14 I had really bad trouble with insomnia, getting roughly 2 - 3 hours sleep on a good night and often going up to a day or two without sleep at worst - though generally managing 2 hours a night.

 Also at the same time form age 12- 20 I had varying levels of severity of anorexia and bulimia, but needless to say it made me even more exhausted with no 'fuel to run on'.

 

I would fall asleep two to three times a day (accidentally) during classes at school , and in (final year) would have trouble keeping my eyes open - 75 minutes later wake up without realising I had fallen asleep for the whole class! (teachers knew I had trouble sleeping, and talked to me on numerous occasions about the importance of not sleeping through their class, but seemed to let me do it - maybe they felt sorry for me? lol) its a wonder I passed at all!

 

I was prescribed 100mg of Largactil (an anti-anxiety/sedative) after numerous sleeping tablets hadn't managed to help me with a 'restful nights sleep'. While Largactil mostly helped my insomnia my current problem started and has been a problem for at least 6 years or more. 

 

Okay so, here goes;

I am unemployed at the moment, so spend most of my time at home looking for work...I am tired all day, every day. being *completely* fatigued and fighting sleep that seems to come in waves throughout the day. I am now able (a quater to half of the time) on a good day to stay awake without falling asleep that i'm aware of, the rest of the days I will need at least one to two naps. I wake up groggy and exhausted, no matter how many naps. my energy then is a bit better for a few hours before needing to nap again. I sleep an average of 9 to 10 hours a night with the occasional night maybe 4 times in 6 months where I have been awake the entire night - but what I think what really exhausts me, is it feels, as soon as I fall asleep that I'm dreaming, very detailed dreams that require me to think yet I cant control what happens in these dreams, or wake myself up, I wake up usually mid dream(?) or after the dream ends, then fall asleep after a minute or two and have another dream. I average 4 to 5 dreams a night, or at least 3 very very long dreams. when my alarm goes off in the morning is when the dreaming stops for a moment, I wake up, press snooze and usually fall back into dreaming. repeat this usually two more times. I'm so exhausted because I feel like I live a whole nother life at night.

 

There are some other things I thought I should mention to GP:

I think I might have experienced sleep paralysis, will be fully consious but can only half open my eyes, cant move, have a pressing/heavy feeling on my chest and feel fearful/panicky I feel like im being watched or theres someone there sometimes, even though theres not, it probably only last a few minutes but it feels like forever. 

And also - a little bit, (used to be more) but similar to parlaysis before going to sleep, mainly after I wake up, I cant open my eyes or move, I  used to feel panicky (just because I didnt know what was going on!) I put huge amounts of effort into trying to open my eyes and move my limbs, Im awake but my body wont respond, the best I can manage is maybe seeing a glimpse of light of some sort (I think im barely opening eyes/lids flickering) just before Im able to finally move. It hasnt happend this year thankfully!

I have always daydreamed a lot, even as a kid, my imagination gets carried away, especially when im tired, but then again everyone day dreams, what im not sure, is if its normal to be so tired/immersed in a daydream that you dont blink, dont register whats going on around you at all, and dont really hear? or notice sounds, and body is completely relaxed - or even unaware of body all of a sudden I seem to 'wake up,'

 

There are a few things I read here (and elsewhere) that I seem to have in common with narcoleptic's?  (not at all saying I have it) but maybe should mention to a doc? 

 

I am very very clumsy, especially when tired! I will trip up, down stairs, and fall over my own feet (especially when my legs feel heavy) and no matter how hard I try to think "i will not drop such and such" things seem to slip out of my hands, (the worst being -  I was exhausted when I worked and dropped a digital slr camera which smashed, at my job, plus another customers camera). When I laugh (very hard) my muscles feel tingly and all relax suddenly, sometimes loose control of my bladder a bit (embarrassing!).

 

I've noticed, during some therapy sessions when I am extremely scared or stressed I get blurred vision, feel like i am far away, I get a ringing in my ears, light headed and tingling in my limbs, feel like I cant move, I think and talk slowly. I do have a dissociative diagnosis, but I am wondering if a lot of the things I experience could be extreme lack of sleep?

 

finally quite often i think Im doing automatic actions? such as turning of lights, moving items, cleaning something and have no memory, I'll just be doing one thing, walk into another room come back and e.g the lamp is off, or the clothes are all folded. I always thought this might be related to dissociation but my Psych said probably not a large enough time gap (and haven't had problems with losing time for a very long time now) suggested it could be automatic actions...

 

wow.......sorry this is such a long post! its taken me since 9.45pm to almost 11:3pm0 to write this beause my brain checked out a long time ago!lol... usually being in bed by no later than 9.30-10.00 

absolutely exhausted now, but just had to write all this down and eager to hear if anyone has similar experiences or can relate at all or any advice? 

 

Thanks!

 

 

[corey91386]

It definitely sounds sleep related. I can relate to a lot of what you are going through. You need to see a sleep doctor and have a PSG and MSLT done. I was in the same boat. One day my life literally changed on a dime. I don't know if this underlying condition just decided to peak then or what. Literally took a nap and woke up forever tired with issues. Long story short you have had all the work up for things that would not be sleep related. I was also in the this boat, diagnosed with anxiety and depression after the array of tests ( MRI, Catscan, Thyroid, Blood Work up, ENT tests, Etc...) I also had tendencies as a kid to sleep alot. Take naps fully clothed with shoes on in college. Used to wake up on the weekend in the middle of the night start cooking breakfast and get dressed with no recollection. My mom would tell me to go back to bed you do not work today. I also get very clumsy with weak arms and legs,a nd dizzy/spaced out quite a bit. All of those symptoms can be related to sleep deprivation. The main thing to remember is you are not alone and things will get better. I have a diagnosis of Narcolepsy. Also have been diagnosed with Idiopathic Hypersomnia by another doctor. Sleep conditions are tricky. But it really doesnt matter the diagnosis as long as you get feeling better. I would get in to a sleep doc for a PSG and MSLT if you can. It will put a marker on your tiredness and then treatment from there. Unfortunately Narcolepsy can only be treated. Hopefully you have something besides that.  Good Luck!

[corey91386]

It is pretty common for narcoleptics to have insomnia. Doesn't make sense but is true!

[SnoozleBear]

Hi Corey, It's definitely some comfort to see you can relate to a lot of what I am saying

I will be seeing the GP on Monday with the hope of getting a sleep test referral, maybe I can copy and paste what I wrote here into a word document, print it, and show her? Save a lot of explaining!

Wow thats odd, about the insomnia, but helpful to know. 

Thanks so much for actually reading through my long winded post!

[DeathRabbit]

It is pretty common for narcoleptics to have insomnia. Doesn't make sense but is true!

Part of it is the disregulation of our circadian rhythm methinks. The other part is the massive amounts of caffeinie or prescription stimulants many of us down to get thru the day.

[munky]

I will be seeing the GP on Monday with the hope of getting a sleep test referral, maybe I can copy and paste what I wrote here into a word document, print it, and show her? Save a lot of explaining!

 

Exactly what I was going to suggest! Sleep deprivation, whatever its cause, can lead to memory problems. I know I have trouble remembering just about anything. Whenever I have something I need to do, like something I'm planning to buy and need to research, I'll send myself an email to remind me to do it. If I don't, I forget. Also, spend some time this weekend thinking about it, and write down anything else you might want to add, or any questions you might want to ask. And if you have friends or family who have noticed anything, ask if they'll send you an email about it this weekend--print that, and take it with you, too. And hold onto it to show to the sleep doctor when you get that referral. I did this with one of my supervisors at work, because that's where I started having problems. I was falling asleep and not realizing it--and got mad when I got in trouble for it, because I didn't think I was sleeping! So, when I made the appointment with the doctor, I sent the supervisor who had been "on my case" an email, asking for specifics about what he'd seen and what others had reported to him. I printed out his answer, and took it with me, to add to my own list of issues/questions.

 

And, yes, insomnia is not at all unusual, odd as that may seem. DeathRabbit has the right of it, I think. I've had sleep problems all my life: circadian rhythm issues, insomnia, REM behavior disorder ... So I firmly believe it's all connected.

 

I'm always sorry to hear about another person struggling with sleep issues and trying to get them diagnosed. It isn't a fun place to be. However, once you do get a doctor to listen to you and get the tests, you'll be on the road to ... well, not recovery, but at least hopefully to some sort of mitigation of the symptoms so that your quality of life improves.

 

We're here for you! Let us know how it goes with the doctor on Monday!

[SnoozleBear]

Thanks Munky for the support! 

Im very nervous about all this...I guess I'm most worried that a sleep study will find nothing, or there will be no treatment, and I'll have to go on like this, which is to daunting to even think about. 

 

I will definitely print what I've written on this forum and show it to the doc, and get my mum to write a quick summary too since she can confirm a lot of my sleep problems as a kid.

 

Will definitely let you know how the appointment goes. 

 

I'm super tired again today, dreamt all last night - as usual, but woke up every hour to 2 hours or so... which is more than usual. napped for an hour and a half today, woke up even more exhausted (cant remember if I dreamt)....

Even if im falling asleep, if I take a nap, I always seem to fair the same or worse, I'll have energy for about an hour or two (45minutes after the grogginess from sleep has worn off) but ultimately will feel *more* tired and need to nap again. I can never decide if I should hold my eyes open and manage to stay awake longer, or nap, and have to nap again and again - anyone else find this? that can often be more tired after a nap? should I take shorter naps than an hour?

[munky]

It's a daunting thought, to be sure! But think of it like this: getting the tests done means you have the absolute best possible chance of finding out what's wrong and seeking treatment that might help. The alternative, not getting the tests done, means you'll never know, you'll never get treatment, and things will never get better.

 

When I first got my narcolepsy diagnosis, the doctor suggested I take 20-minute naps every 4 hours at work. To begin with, they really helped! WhenI got switched to 12-hour shifts, though, they really didn't. In fact, they made things worse! Doc's solution? Stop taking them! Convenient that his solution was the same as mine--I stopped taking those naps a couple of weeks ago.

 

I should be getting back on 8-hour shifts soon, if everything works out. When that happens, I may try taking the 20-minute nap again. We'll see. A 20-minute nap is hard, though! When the alarm on my phone goes off, it startles me awake. There's a moment or two of, OMG! Then a crash that lasts a few minutes, with me thinking I just want to go back to sleep. Back when the naps were actually effective, that would be followed by a leveling-out that let me make it through the rest of the shift without attacks.

[lkl]

I have found that about 30 minutes, seems to be the right amount of time for me to nap for. Shorter than that doesn't feel enough, and more than that my dreams turn into strange half-awake/half-asleep dreams (HH, I guess) as I wake up, and so it takes a lot longer for me to properly wake-up and benefit from having the nap in the first place.

 

Perhaps experimenting with different length naps, might help you see if a shorter nap is more beneficial for you.

[SnoozleBear]

Had my Appointment with my GP today - after a lot of talking through symptoms and excluding other possible causes, my GP said "the waiting list for sleep studies are generally years long..." ...at this point....I broke down in tears, as I thought I'd never get an answer and get a good nights sleep! She quickly followed up "however there is one private sleep clinic.." 

My parents pay for my health care at the moment, and the whole family is lucky enough to have private health insurance (as we all seem to have a range of health problems, so it just makes sense!).

So I jumped at this, when she said there might still be an option of a sleep study by going private.

I now have a referal at Epworth Sleep Clinic.....I need to fax through the referal tomorrow, (I dont have a fax machine...?) and follow up with a call to make an appointment a day or so after. Im not sure how  long the waiting list will be...but im hoping it will be under a month... (wishful thinking maybe?) Im tired, but just happy I finally have a referal and may be on the way to getting answers?

I even dreamt about having a sleep test last night! haha - which was conducted at a cafe, by a televesion chef here, and consited of hammering nails into my shins and seeing if I would fall asleep, surprisingly I did partly, and he diagnosed me with some (made up) sleep disorder.... 

hopefully with my real sleep test I can fall asleep and there's no nails in my legs! haha!!

Oh but with all seriousness, I did have a question for those who have had a sleep test, well two questions.... 

1. do you have to sleep on your back for the entire test, does it matter if you move about? or sleep on your side/ in the foetal position?

2. If i do go on to have the..MSLT (?) ..the nap test...do the naps include the time it takes to get comfortable...because some nights no matter how tired/irritable/frustrated and desperate for sleep I am, it can take 15 minutes to settle, (as weird as this sounds) because I never know what the heck to do with my arms when I lie on my side, that, and I seem to be sensitive to any little itch, sound, light or crumpled up sheet, I usually end up lying on my back anyway as I effectively 'sprained' my neck last a few weeks ago. Once i'm actually comfortable, I fall asleep almost instantly, and begin dreaming, if I wake up during the night, even if im wide awake, I usually crash again pretty quickly. So, I guess im worried, while I usually can fall straight to sleep on the couch, bed, sitting up... other times I need to move about and settle myself - and if they start timing each nap immediately...im worried the results wont be accurate? 

 

thanks everyone at the forums for making me feel welcome, giving advice, and letting me know i'm not alone with my problems!

 

will keep you all updated.

[lkl]

Hi SnoozleBear,

 

I just had my third overnight sleep study and second MSLT last Wednesday night/ Thursday. I get my results next Monday. The waiting for results is hard, but this is a shorter wait, than I had for my other sleep studies.

 

You can definitely sleep how you want to in terms of back, front, either side, curled up, stretched out and move during the night. The wires will restrict you a bit, but I found a way to move to the position I wanted. If you move a lot, I guess you could increase the chance of an electrode coming off, but the technician will come and put it back if it does, so I wouldn't stress about that.

 

With the nap test/MSLT, they got me to get into bed just before each nap. Then they went to the office to check that all the electrodes were still getting a good signal (and fixed them if they weren't). Then they do a calibration before each test that took maybe 5-10 minutes, where they are you to open eyes for 30 seconds, close your eyes for 30 seconds, get you to move your eye up , down, left and right. Clench teeth, Smile, and Yawn, and blink 5 times. Then the technician came back and turned off the lights and shut the door.  The testing for the nap started then. So you do have a little bit of time to get comfortable, while they are doing the calibration thing and making sure everything is ready to go.

 

They gave me ear plugs for my MSLT test this time, which I found was quite helpful. Not that is was noisy, but I tend to pick up tiny sounds, when it is otherwise quiet.

 

For this sleep study I had to wait about 6 weeks for a consultation with the sleep specialist, and about another 6 weeks for the sleep study. But the wait was longer for my first 2 sleep specialists/sleep studies (at a different place to my most recent one). Do you know if you have to have a consultation with a sleep specialist before you have a sleep study? Is the Epworth Sleep Clinic in Melbourne? If it is, it isn't the only private option in Melbourne, if the wait ends up being really long, but hopefully it won't be.

 

With your need to fax the referral, could your GP's rooms fax it for you? Or perhaps there is a library with a fax machine that you could use?

[SnoozleBear]

Thanks Ikl,

It definitely eases my anxiety a bit to know what I might expect before each sleep test...

I got the doctor to fax my sleep referral to the epworth (yup, in Melbourne)... a few hours later the receptionist from the clinic called, and there was a cancellation with the specialist I was due to see. So I had my appointment today, he asked general questions about medication and health, then asked for a recent sleep history (recent in this case meaning how ever long my most recent sleep problem has been around - so the past 6 years). I discussed my sleep schedules, what a typical nights sleep is like, as well as other problems probably sleep related, like heaviness, tingling in my legs and arms, weakness in the knees, and falling asleep during the day (or at least wanting to on the days I dont).

He said from what he can tell, he doesnt think it is sleep apnoea, and most likely idiopathic hypersomnia or narcolepsy.

It was a bit of a shock actually hearing those words, and started getting emotional as the tiredness really hit me and legs went tingly though it was probably just nerves. 

He said I need to come off one of my medications, which I was already in the progress of coming off (and should take about a week) as it might affect the sleep test. Unfortunately - then my specialist is away for another 3 weeks (nooo) and I have a follow up appointment on the 23rd. to see if my tiredness is still the same, at which point we will set a date for the two sleep tests, the over night one, and the napping one, he said the night test starts at 7.30pm until the next morning, and then I would be there for the nap test the next day until 5pm.

He also said the week before my next appointment, I have to ware a special watch that monitors movement, e.g when I am completely still for long periods, it records me as asleep. Its waterproof - so I leave it on for the week, and then go in half an hour early before my next appointment so that they can download and read the data. 

I'm very nervous....(as I said in a previous post), the sleep and nap test will be normal and I will be stuck with no answers and be tired forever!! also the wrist watch thing... I do have waves of exhaustion/sleepiness each day, but dont always/am not always, able to fall asleep/nap... especially if I have anxiety...

 

All I can do is *hope*  I will find some answers and get a good nights sleep!

[lkl]

That's really great that you got to seen a specialist already. Annoying you have to see him again, before they book the sleep study though, especially since you already have been sleepy for so long. Hopefully, once you see him again,  the wait to have the actual study won't be too long though.

 

I didn't have to do the wrist watch thing for any of my studies. But I think it is more to make sure you are getting a reasonable sleep each night, to make sure you are not sleep deprived for the test (which would affect the results). They are not as accurate if you move during your sleep though. But they will be able to tell that from the sleep study though. Other people on here have had the wrist watch, so they may be able to tell you more about it.

 

I know the feeling about worrying that the sleep and nap test will be normal and being stuck with no answers and be tired forever. I am worrying about the same thing right now. I don't have a good perception of when I actually fall asleep, versus half asleep, so I don't really know what happened in my MSLT/nap test that I did last week. I only had micro-sleeps in my first one, which don't count. I must have been close to being asleep for long enough to count, since the sleep specialist told me he had it scored twice.

 

Especially for my first sleep study that had the MSLT/nap the next day, I was so worried about not sleeping and not getting any answers ever, that I think I made things a lot harder for myself. I guess, maybe keep in mind, that even if it is "normal" or you don't sleep as you normally would; it doesn't necessarily mean that you will never get any answers. Try not to think of this sleep study as being the only way you will get answers. It is just one step. Hard to do, I know, but I tried to just have no expectations for the one I did last week. And told myself that the sleep specialist will be able to figure out how to help me regardless of what the results say (which might just be wishful thinking, but I hope it is true). I was still nervous, but less than the other time, I think.

[munky]

So sorry to hear the waiting list is so long out there in Oz! I only had to wait a couple of weeks, but part of that was the fact that I made it clear to my doctor that I have a long commute--45 minutes to an hour, one way--every day, and I was afraid I'd start having sleep attacks while I was driving. Anyway, while waiting for my MSLT, I did a lot of research and reading, and found one document in particular very helpful. It is apparently used as part of the training for sleep techs who will be administering MSLT and MWT tests. You can find it here: http://www.n2sleep.c... TEST (MWT).pdf. It's 43 pages, but it's all in very large font and very short pages ... looks like it was originally a slide show that got converted to PDF.

 

The essential part that answers your question about the naps, however, is on page 14:

If the patient does not sleep, you are to run the nap for 20 minutes or 40 epochs. If during this 20-minute time frame the patient falls asleep, you are to run the nap for 15 minutes or 30 epochs from the point where the patient fell asleep. 

 

As for how you sleep, you sleep however you're comfortable. And, yes, you can move around. I tend to fall asleep half on my side and half on my stomach, with a pillow or stuffed animal (yes, I'm a nerd) tucked under me. I took one of my favorite pillows with me for the test, just for that purpose. They also said I could bring along my favorite pillows to sleep with, even my favorite blanket. Basically, they want you to be as comfortable as humanly possible, to reduce the number of problems that can be caused by being in a strange environment.