Unable to Get Out of Bed

[mcjimjam]

Out of all the symptoms of all  my problems the absolute worst has always been difficulty getting out of bed. I say difficulty but that suggests that it is just hard, where I feel that is often impossible. No matter how badly I want and plan to get up out of bed at a certain time, I will not do it. I turn off every alarm, I do whatever necessary to go back to sleep. It's a problem because I tend to sleep through most days, often around 16-20 hours a day. It has gotten to the point where I don't even any psychiatrist, psychologist or any support other than my GP because I can't rely on my ability to get up. I honestly feel that I would probably kill someone if it allowed me to go back to sleep. I know I should take responsibility and say that I am choosing not to get up. That is true, but whether I blame or exonerate myself it doesn't seem to change anything. At the end of the day, I am still asleep. I don't have any willpower in this situation. I've never met anyone who understands. Does anyone else have this problem?

[melissaw72]

I do not have this problem now.

Personally speaking I would see a neurologist.  Mine diagnosed me with a sleep disorder (Idk how he termed it), and put me on provigil, which totally turned everything around and I could now stay awake all day (except a 1-2 hour nap).  Neuro could also order a sleep study to see what is going on.

[J718]

Yes, you might consider seeing a sleep specialist. Doctors blamed my tiredness on my depression for years but it turns out I also have a sleep disorder (either narcolepsy or idiopathic hypersomnia...the test results were unclear.)

[aquarian]

I used to sleep entire weekends, only getting up to go to the bathroom and grab snacks. (This was back when I was still working). I remember having to fill out a form at work requesting reasonable accommodations. My reasonable accommodation was that I didn't want to have to work mandatory overtime and sometimes come in on the weekends. My managers were nice and never made me do the OT or weekend thing because they knew I was barely hanging on, but a new person higher up than them was hired and someone decided the reason why I wasn't working OT would have be on record and be looked over by HR. (I think I ended up going out on STD/LTD before they made any determination about if I'd be allowed to be officially excused from OT and weekends.)

When I was filling out the paperwork, I found myself explaining that I sleep the entire weekend so obviously can't come in then and can't possibly stay late after my shift ends or come in early because when I'm not at work, I don't have energy to do anything except make myself a PB&J sandwich for my lunch the next day, watch a little tv and and go to sleep. I found myself explaining that being at work longer would probably force me to need even more sleep when I wasn't at work and there are only 24 hours in a day which is hard enough to fit in 8 hours of work plus sleep. I think prior to filling out that paperwork and spelling it all out, I didn't realize how bad things had gotten. 

Correcting a Vitamin D and iron deficiency really helped. So does adderall (prescribed after a sleep study and eliminating other possible causes for sleep issues). Now I still sleep more than average (10-12 hrs a day) but I can at least get up when I need to. I still have motivation issues so tend to sit around and knit or watch tv too much, but that's different for me than not being able to get out of bed because of just being so tired and needing more sleep.

[melissaw72]

13 hours ago, aquarian said:

Correcting a Vitamin D and iron deficiency really helped.

I can totally say from my experience if your iron gets low enough, you will be sleeping a lot, and won't be able to do much high intensity things (ie walking somewhere). 

This has happened to me many times and when I finally got the iron infusions (the prescription iron pills taken 3x/day did nothing for my iron levels), and after some time had passed (don't know how much, I just gradually felt better) I knew exactly what it felt like to have low iron, and how it felt to be in the normal ranges.  I can make a huge difference if you are anemic.  So I agree to get your iron levels checked.

Also might want to get your thyroid checked too.

[mcjimjam]

Thanks for your suggestions. I will talk to my GP about maybe seeing a neuro or sleep specialist and I will ask for physical workup too. It scares me because so many times I book appointments with specialists and can't drag myself from bed for the appointment.

[cloudmonger]

On 10/31/2016 at 0:44 PM, mcjimjam said:

Out of all the symptoms of all  my problems the absolute worst has always been difficulty getting out of bed. I say difficulty but that suggests that it is just hard, where I feel that is often impossible.

I've had the same problem most of my life...I'm curious, do you actually wake-up & just continue to lay in bed awake or are you sleeping the entire time? Do you think your medications are adding to the problem (causing drowsiness/sleep hangover?) Is it depression/lack of motivation or that you are just physically exhausted (feels like you have not slept)?

I did blood testing awhile back and found my Iron was low and I was Hypothyroid (btw Lithium longterm can contribute to thyroid issues). Supplementing (including Vitamin D) has helped (though I still sleep in late, after 10-11 hours sleep per night) My previous doc added methylphenidate which completely resolved this issue, but since I've moved no doctor will prescribe a stimulant to me.

If supplements don't help, you can also maybe try a sleep study (for apnea).

Edited November 2, 2016 by cloudmonger

[mcjimjam]

On 11/2/2016 at 8:20 PM, cloudmonger said:

I've had the same problem most of my life...I'm curious, do you actually wake-up & just continue to lay in bed awake or are you sleeping the entire time? Do you think your medications are adding to the problem (causing drowsiness/sleep hangover?) Is it depression/lack of motivation or that you are just physically exhausted (feels like you have not slept)?

I did blood testing awhile back and found my Iron was low and I was Hypothyroid (btw Lithium longterm can contribute to thyroid issues). Supplementing (including Vitamin D) has helped (though I still sleep in late, after 10-11 hours sleep per night) My previous doc added methylphenidate which completely resolved this issue, but since I've moved no doctor will prescribe a stimulant to me.

If supplements don't help, you can also maybe try a sleep study (for apnea).

I basically sleep the entire time. If something wakes me, I just lie there and fall back to sleep. I think meds could be contributing. The problem has been worse since I began taking opioid pain medication (buprenorphine patch .480mg/day) a few years ago although I have been like this since I was 13 (26 now). I think the opioids just make it a bit worse. 

The inability to get up I believe is mostly due to a sense of physical exhaustion,  craving to return to sleep and lack of any inner drive or motivation. Also my life is a nightmare and I don't want to face it, but that is not always a factor. Even when I'm relatively happy I still struggle with this.

I haven't had blood tests for vitamins or thyroid function in a while so I will look into that. I doubt it could be the root cause as I have had those things tested a few times since developing the problem but it could be making it worse, I guess?

I actually was taking methylphenidate (Concerta 36mg/day) until a couple of years ago for ADD. It didn't seem to help me with my oversleeping. It doesn't have an awakening effect on me, that I notice. 36mg is a low dose, though.

[melissaw72]

26 minutes ago, mcjimjam said:

I haven't had blood tests for vitamins or thyroid function in a while so I will look into that. I doubt it could be the root cause as I have had those things tested a few times since developing the problem but it could be making it worse, I guess?

Yes, they could get worse over time if not treated ... iron levels, thyroid, and vit D.  I think if something is a problem, it will get worse until it is treated (IMO). 

28 minutes ago, mcjimjam said:

The inability to get up I believe is mostly due to a sense of physical exhaustion,  craving to return to sleep and lack of any inner drive or motivation. Also my life is a nightmare and I don't want to face it, but that is not always a factor. Even when I'm relatively happy I still struggle with this.

From what you write it sounds like depression.  When I am in a deep depression I feel physically exhausted and I crave the bed.  I dont' sleep as much as you are talking about, but I do crave the bed and God help people who get in my way.  The physical exhaustion keeps me from moving around ... not being able to function ... because I just literally can't do it.

[HAL9000]

On 11/2/2016 at 4:50 AM, cloudmonger said:

I've had the same problem most of my life...I'm curious, do you actually wake-up & just continue to lay in bed awake or are you sleeping the entire time? Do you think your medications are adding to the problem (causing drowsiness/sleep hangover?) Is it depression/lack of motivation or that you are just physically exhausted (feels like you have not slept)?

I did blood testing awhile back and found my Iron was low and I was Hypothyroid (btw Lithium longterm can contribute to thyroid issues). Supplementing (including Vitamin D) has helped (though I still sleep in late, after 10-11 hours sleep per night) My previous doc added methylphenidate which completely resolved this issue, but since I've moved no doctor will prescribe a stimulant to me.

If supplements don't help, you can also maybe try a sleep study (for apnea).

If methyphenidate worked but your current doctor won't address it why is he/she not trying something else?  I was DXed with chronic fatigue and they put me on a small dose of adderall which has really helped.   Its sucks to just be face planting all day.

[ByePolarCoordinates]

Your mirtazapine and/or the opioids could definitely be contributing to the difficulty in waking up. Additionally, I find from personal experience that it takes a while for Concerta to kick in. You may benefit from using an immediate release stimulant like Ritalin or Adderall. I used to have your same issue - it was impossible to wake up. Eventually I was put on 10-20 mg Adderall ideally to be take 30-60 min before I needed to be up + 70 mg Vyvanse when I woke up for the second alarm. This helped a lot. Eventually I did decide to see a sleep neurologist as I suspected narcolepsy might be an underlying issue - especially since I felt pretty euthymic. A sleep study confirmed the diagnosis and I was put on Xyrem. It was a complete game-changer, as it has an awakening effect as it wears off. I went from being unable to get up after 10+ hours of sleep despite abundant lighting and numerous alarm strategies, to regularly being able to rise at 5:30 AM (often waking up naturally slightly before my alarm!) to get to work on time. 

[Mr_Turtle]

I had that when I was taking haloperidol/quetiapine. I couldn't stay awake long enough to make it out of bed before lunchtime (I'd wake up for 20 seconds, wrestle with the duvet, then be unconscious again). It eased off completely within a couple of weeks of stopping that medication. But while that was happening there was no willpower or choice involved - it was literally impossible to get up. If I did manage to prise myself out of bed sometimes I'd end up slumped on the sofa/floor instead and still not conscious. Alarms did nothing and sometimes I missed appointment without even knowing because I was unconscious. Also when I started taking mirtazapine it made me so drowsy that I'd fall asleep sitting up at work. If your medication is making you like this, then please don't be too hard on yourself - it doesn't mean you're lazy or somehow not trying hard enough. It's chemical.

Does it happen to the same extent every day? Is there anything that can break through it?

I find these things to help (sometimes...): leave the bedroom curtains open so it gets lighter in the morning; wriggle my fingers and toes and try to use the momentum to generate enough bigger movements to flop out of bed; push my legs out onto the floor, then sort of crawl and eventually stand up; arrange for deliveries around 9-10 because the doorbell is startling and jolts me awake; keep a book/magazine to read in bed in the morning to activate my brain; keep sugary or strong-tasting snacks/drinks by the bed to stimulate my appetite to wake me up. Also staying up extra late once in a while can somehow reset the sleep clock.

The other thing I find makes a difference is how tired I feel when I go to sleep. If I'm knackered and fall asleep too hard and fast I wake up feeling disgusting. If I can manage to a bit of stretching, meditation and relaxation for a while before I go to sleep, so that I drift off peacefully instead of falling off the consciousness cliff, then the sleep is much more refreshing and I can wake up more naturally. Even 5-10 minutes seems to make a difference, but it's not easy to do when you're so tired.

 

 

[melissaw72]

14 hours ago, ByePolarCoordinates said:

Your mirtazapine and/or the opioids could definitely be contributing to the difficulty in waking up. Additionally, I find from personal experience that it takes a while for Concerta to kick in. You may benefit from using an immediate release stimulant like Ritalin or Adderall. I used to have your same issue - it was impossible to wake up. Eventually I was put on 10-20 mg Adderall ideally to be take 30-60 min before I needed to be up + 70 mg Vyvanse when I woke up for the second alarm. This helped a lot. Eventually I did decide to see a sleep neurologist as I suspected narcolepsy might be an underlying issue - especially since I felt pretty euthymic. A sleep study confirmed the diagnosis and I was put on Xyrem. It was a complete game-changer, as it has an awakening effect as it wears off. I went from being unable to get up after 10+ hours of sleep despite abundant lighting and numerous alarm strategies, to regularly being able to rise at 5:30 AM (often waking up naturally slightly before my alarm!) to get to work on time. 

When you had this sleep study done for the narcolepsy, did you have to be off all meds for 2 weeks before the sleep study in order to get an accurate dx?  If so, how did you manage that?

That was the only way my neuro said it would work, so I couldn't do it.  I do have a sleep disorder, not narcolepsy, but if I was able to get the sleep study done, I am almost positive that narcolepsy would have shown up. 

[ByePolarCoordinates]

Hey, sorry for the super delayed response. I only needed to stop my stimulants before the study. My neuro did not want to take me off of my other meds, even the MAOI I was taking which is known to suppress REM. Based on my symptoms, which includes mild cataplexy, the super short average sleep latency during my MSLT (~2 min, asleep in all 5 naps) was enough for her to feel confident giving me the narcolepsy diagnosis despite not showing any sudden onset REM. Some features in in my overnight were also suggestive. Idiopathic hypersomnia tends to have slightly longer latencies ~5 min. 

[melissaw72]

6 hours ago, ByePolarCoordinates said:

Hey, sorry for the super delayed response. I only needed to stop my stimulants before the study. My neuro did not want to take me off of my other meds, even the MAOI I was taking which is known to suppress REM. Based on my symptoms, which includes mild cataplexy, the super short average sleep latency during my MSLT (~2 min, asleep in all 5 naps) was enough for her to feel confident giving me the narcolepsy diagnosis despite not showing any sudden onset REM. Some features in in my overnight were also suggestive. Idiopathic hypersomnia tends to have slightly longer latencies ~5 min. 

I'm glad you were able to get a dx.  My neuro wouldn't diagnose me with narcolepsy because I couldn't go off meds for 2 weeks before doing a sleep study.

What happened for me was that there was a study going on at Stanford U about spinal fluid, hypocretin deficiency, and narcolepsy.  So I had a spinal tap, and that with all the blood taken were sent to Stanford.  Results were that I didn't have narcolepsy.  BUT it was an on-going study, so they were at a point where it could be true (spinal tap fluid and narcolepsy were connected) or not.

[ByePolarCoordinates]

11 hours ago, melissaw72 said:

So I had a spinal tap, and that with all the blood taken were sent to Stanford.  Results were that I didn't have narcolepsy.  BUT it was an on-going study, so they were at a point where it could be true (spinal tap fluid and narcolepsy were connected) or not.

The blood test was likely to look for the genetic polymorphisms that are associated with narcolepsy and the spinal tap looks into the hypocretin deficiency as you said. Type 2 narcolepsy presents without cataplexy and a hypocretin deficiency might not be as severe and possibly not detectable. Regardless, hypersomnias of any type are treated the same way. The only thing the narcolepsy diagnosis allowed me was to get on Xyrem. 

Xyrem was a game changer at first. The dawning effect was just what I needed and I no longer dreaded sleep and was able to get onto a regular schedule. I never saw myself working full time - able to get to bed routinely at 10 and rise at 5:30.  But, I suspect it may have been a bad move for my physical and mental health. Many lose weight. I had already been down about 20 lbs, but dropped another 20 in a very short period due to a complete loss of appetite which stressed my body and led to hair loss (telogen effluvium).  I was only getting 6 hours of sleep, and despite it being restful and feeling awake during the day even on less stimulants, it made me wonder whether this bode well for my stability. Gradually, I started experiencing some delusions and increased nighttime agitation. My sedating AP was contraindicated with it and the replacements we had to try failed to keep me together. Eventually, I stopped sleeping - and - you know how that goes. It carries a general warning that it can induce mania/psychosis even in people without underlying psychopathologies. I believe it probably contributed to my recent hospitalization over the holiday, my first. 

Some people tolerate it fine and some neuros will prescribe it off-label, but insurance is usually a huge hurdle to that. Jazz Pharma has been known to provide financial assistance in these cases. It's possible I may have held on to it with the right med stack, but honestly, over time - it was basically just salt water. 

So essentially, the narcolepsy diagnosis really is no different from any hypersomnia - and I see you have access to Provigil regardless. My neuro didn't want to destabilize my mental health by pulling me off my meds. Experience can allow a good neuro to interpret a sleep study and take into account associated symptoms even with this factor. If you are stable on a good med regimen, it's often possible to tolerate amphetamines which I find to work better than the 'vigils. Unfortunately, my recent episode required me to be pulled off Vyvanse (and my antidepressant) and I'm back on Nuvigil - but it's probably for the best. Tip if you are not satisfied: Provigil often works better if you take it twice daily. Nuvigil has a longer half life so once daily is typically fine.

An underlying circadian rhythm disorder can also also be a factor. I was assessed with actigraphy and an experimental eye test. It confirmed a delayed/non-24 rhythm, with my biological "day" estimated to be slightly over 25 hours. It also showed that my melatonin levels were less likely to respond to light, much like a blind person would experience. Dosing with melatonin at the right time and dose (much lower than typically found at the drugstore) was somewhat helpful. I tried the light therapy in the morning, but as suggested, it didn't make much of a difference. 

Feel free to message me if you want to discuss any of this in greater depth. 

 

 

[melissaw72]

22 minutes ago, ByePolarCoordinates said:

The only thing the narcolepsy diagnosis allowed me was to get on Xyrem. 

 

22 minutes ago, ByePolarCoordinates said:

So essentially, the narcolepsy diagnosis really is no different from any hypersomnia - and I see you have access to Provigil regardless

The only thing the diagnosis would do for me, would make it easier to get my provigil dose when sending in the prior auth.  Because of not having the specific diagnosis, the PA process is hard for my DRs (a lot of extra work and very time-consuming) ... pdoc and neuro both have to write individual letters for the PA people, have them mailed together ... to whomever approves the meds.  Thank goodness for fax machines.

For me the diagnosis is technically different ... because I have hypersomnia (and not narcolepsy) my DRs have to pretty much fight to get my current dose (600 mg) ... see above paragraph.

You're right, I do have access to provigil but it is difficult to get my full dose covered.

Edited January 2, 2017 by melissaw72

[ByePolarCoordinates]

11 minutes ago, melissaw72 said:

DRs have to pretty much fight to get my current dose (600 mg) ...

Yes, I had a similar issue when insurance stopped covering Nuvigil and I had to switch to modafinil. Went from 250 mg Nuvigil to the roughly equivalent dose of 400 mg modafinil. Currently on less due to recent mixed manic episode. Does your insurance have a 90-day mail order option? The PA process would be the same but you would have to deal with it less often. Provigil is FDA-approved for shift-work disorder. Not sure whether this is an indication your insurance recognizes, but you could just get one of the docs to use that diagnostic code instead and possibly simplify the process - this is not an unusual process whatsoever. 

[melissaw72]

6 minutes ago, ByePolarCoordinates said:

Does your insurance have a 90-day mail order option?

No, unfortunately not.

7 minutes ago, ByePolarCoordinates said:

but you could just get one of the docs to use that diagnostic code instead and possibly simplify the process

I don't think they'd do that, actually my neuro won't.  He is like by-the-book, and if I asked him to change the diagnostic code, he would not do it.  And with pdoc I don't think it isn't his area really to be for sending in a PA.