excessive daytime sleepiness?

[lisajean]

Hi all,
Hannah has been experiencing excessive daytime sleepiness and I'm wondering about possible causes. She is also sleeping a lot at night (unusual for her) so her sleep hours have been greatly increased. When she gets tired her eyes start to droop, her mouth hangs a bit and sometimes she shuffles her feet and even drops. She looks like a zombie :o . She absolutely can not stay awake and when she naps it can be for hours on end. Even after she wakes up she is still so tired. Also, her memory is getting so bad. She doesn't remember activities, conversations, entire days. This is not related to her mood, as that has been stable, although she scared about this.
First of all, all bloodwork is normal. Including vits D and B12, ferritin and iron, thyroid, CBC, chem panel, SED. All normal.
So then I think meds......
The only changes in recent months have been to start Methadone (now at 10 mg AM and 15 mg PM) and increase klonopin (.5 AM and 1 mg PM.) Other meds are stable. It is hard to find info on Methadone not related to methadone treatment for addiction so I'm not finding good info on possible side effects. I really don't think it is the klonopin as Hannah has been on one benzo or another for a long time.
Next I think increased ICP/shunt problems. She has never had a scan show any sign of shunt problems, which doesn't mean a thing in the real world but tends to get the NS's off the hook. If things look normal then it becomes "elective" to do shunt exploration and because of her prior bleed no one wants to go there.
Then I wonder about it being part of her autonomic dysfunction. Makes sense I guess (not enough blood flow to the brain) but what to do.
Finally could this be narcolepsy? Certainly seems to fit but want to rule out #1 and 2 first.
And of course I still question other disease at work that hasn't yet progressed to a diagnostic state and this is what keeps me from sleeping.
I would love your thoughts, ideas..... This is very destressing as you can imagine.
love and hugs,
Lisa

[Mark N]

Lisa, My first guess would be the methadone as opiates can make some of us sleepy and others jittery. Suede, is stopping her methadone because she can drop off to sleep at any time and feels it is a danger to her. I am fighting sleep all times of the day and many days lose the battle and nap for hours. If I have a day without naps and have some activity I will crash the whole day the next couple of days for more than 18 hours. It is like my body is on the edge of sleep and if I watch my activities [if I do too much I will pay the price but if I don't do much I sleep] and balance my days I can avoid sleeping so many hours but still nap during the day and sleep off and on during the night.

I am not sure this applies to Hannah but it would be something to check on with the methadone. I drink caffeinated drinks to help me stay awake so you could check with her doctor and see if he could recommend something to counter this.

I would contact the doctor about this and see what he says. He may just tell you it is a side effect of the methadone. I don't like how my meds influence my sleep or the lack of sleep at times but I have come to accept it as the price I pay to deal with my pain.

[Kathi49]

Lisa,

My first guess would be the Methadone as well. I don't have any experience with it myself but I know of someone who did and she was sleeping 24/7! I DO take Klonopin .5 once a day and cut it in half. The morning dose does NOT make me sleepy; the evening dose just helps me to sleep. But I know if I went any higher I would be sleepier. So, I would think that since Hannah is taking both she would be extremely sleepy. I would ask the doc about it though.

[ErinENj]

LisaJean: One thing I would suggest is that you and Hannah keep track of it. What times of the day does it usually hit? Is it all day or usually at some specific times? How bad is it at those times? Also, how much sleep did she get the previous night? Any activities that day? All of those smallish, seemingly insignificant details. That way, you might be able to see a pattern in it and that may help to figure out what it might be.

Myself, I have an issue with excessive sleepiness in the afternoon, depending on what time I eat lunch. I take a dose of dilaudid and flexeril every day with lunch, and usually within a few hours, I have a hard time keeping awake. Let me preface this by saying I'm the type of person who never has issues keeping her eyes open. I'll stay up all night and be totally exhausted but still be able to stay awake until I got into my bed. If I'm at a friend's house (on the extremely rare occassion) until the wee hours of the morning to where I'm pretty tired and really should stay and sleep there. Besides the fact that I can't sleep anywhere but in my own bed/room/house, I know that I'd be fine driving because I have great control over my sleepiness. But for some reason, anytime between 3-8pm, I'm just totally out of it. If I don't have something specific I absolutely MUST do, I have no choice but to lie down and sleep for at least 45 minutes. I've tried to fight it, but I'll just end up falling asleep sitting up, something I've only ever done in class. So I know to plan in an hour of rest when planning out my afternoons.

Compounding the problem is my sleep cycle right now. It's completely screwed up and then some. Take tonight for example. At about 9, I was so tired I just couldn't do anything except lie down. I was watching the clock until I could take my meds at 11, and then just waiting for 12 midnight so I could take my nightime sleep meds and eat something (I have to eat with them or my stomach gets really unhappy and makes it impossible to sleep because I'm so uncomfortable. But I have to wait until an hour after taking my nighttime dose of Opana to eat, so I have to wait to take my meds until 12). But as soon as I finished eating something, I was wide awake again. Now, I'm kind of tired but not nearly as exhausted as I was earlier. And now that I'm awake, I'm spending the time until my meds kick in on here, and I tend to lose track of time, since now it is nearly 2 am. So I don't end up in bed until at the earliest 3 because it takes me awhile to get everything ready for bed and fixing my bed sheets and pillows to make sure my bed is nice a comfy. Because of that, I won't be asleep until somewhere near 4. So, I only really get 7 hours of sleep a night, because I hate sleeping until noon or one the next day, no matter how much or little sleep I got. Most days, I'm pretty tired. And the dilaudid and flexeril on top of that just tips me over the cliff to where I'm totally beyond exhausted and must sleep during the day. I think if my sleep schedule were to get more normal, I'd be fine, but because it is so screwed up, I can't make it through the entire day without a nap.

So I'd try to keep track of the details of her sleepiness during the day, along with her sleep cycles, to see if there's a pattern. If there is, then you'll be able to get a better picture of what might be causing it, and could more easily talk to Hannah's doc about it.

I hope that you both figure it out quickly and that she doesn't have to sacrifice any pain control for staying awake during the day! Keep me posted on how this turns out! I'm interested to see what is causing it.

[GardeniaGirl]

I don't have any concrete suggestions for the sleep - but i do like Erin's idea about logging it -- that has always helped me figure out health stuff -- patterns eventually emerge.

Reading this thread made me not feel so bad about how tired i get from my meds.

Lately, I have had to take a lot more promethazine than normal and if I take it and don't have anything I "have" to do - I will crash out for a couple of hours - its so hard to fight the effects of these meds!!!

[Peter B]

Lisa,
Hi. I DO have experience with Meth and I can only tell you that it made me want to lay down. All the time. In fact, it would sometimes make me sleep without any warning. I'd just go off into a narcoleptic coma.

Pain free days,
Pete

[lisajean]

Thanks All,
Peter you said it.... a narcoleptic coma. Thats what Hannah says it feels like. We have been writing everything down and can't see a pattern except that it seems to be getting worse even with the meds the same. I will ask Hannahs doc about it again as Hannah is not getting any pain relief from the methadone and if its causing all the sleepiness she is actually having a worse quality of life than before. She hasn't been able to leave the house for 8 days. We are hoping to go to the park today but she's been sleeping for 3 hours and I can't get her to wake up.
It's always something :( .
hugs,
Lisa

[Annie B.]

Hi Lisa,

How about having a sleep study done? I experienced the same things, even falling asleep at the wheel at red lights.

I finally went to the doc. the day I crashed my car on an off ramp, after falling asleep! My 10 month old was in the backseat, thankfully, properly restrained.

I had a sleep study done and in addition to having absolutely NO REM/restoritive sleep, they found that I stop breathing 90 times per hour. Even though I appear to be sleeping, and I am, it's not the restoritive sleep that the body must have. Upon waking, the body struggles to restore it's depleted oxygen reserves.

It turned out that I have both central and obstructive sleep apnea. Since treatment began, I am a new person. Not like a new person, but a new person. I had no idea how much of one's daily waking life is impacted by severe sleep apnea--word finding, memory--long and short, following directions, making critical decisions, etc...

Don't let size or appearance fool you. I am a 44 year old, non-smoking, non-drinking, female with a 17% BMI. I have absolutely no life style choices or physical traits that would have ever made a doc guess about sleep apnea. In fact, it was my (wonderful and brilliant) pain control doc who suggested I go and get tested. The sleep docs were amazed by looking at me and then reading the report that it was the same person.

This could be a very simple solution to what seems like an unsolvable problem. Just around the time I was diagnosed, a new machine, a "V-Pap" came out and that, along with pharmaceutical intervention has helped me become more of who I used to be. Unfortunately, one of the components of treatment is me taking 2 hours of FMLA leave every day, so my paycheck has really suffered, but much better that than another (more severe) car accident or something.

I still have "episodes" and have no idea what brings them on. That's the really scary part. The other day, I barely made it to the sitter's to p/u my DD. I had to call someone to come get me. My parents picked me up and couldn't wake me, so I slept in their car until DH could come over to collect me. Even then, I was unable to stand by myself or speak coherently. I wish I knew what causes these episodes as I never want to be in a car and get hit by one (a sleepy episode). The scariest thing about these episodes is, that the urge to sleep is absolutely, positively, uncontrollable. Bottom line. You have to sleep. It's the weirdest thing.

OMG, please accept my apologies for writing all about myself. I did so, as I thought that you might see a little bit of Hannah in my story. It's a bummer, but it can be successfully treated and it doesn't mean giving up your pain meds.

OCCAM'S RAZOR...

Good luck to you and please keep us informed.

xoxo,
Annie B.

[BrokenBladder]

Hi Lisa I don't take Meth but I did have a thought. Maybe with the increase in her meds it has made enough of the pain go away where she can relax. I know that if I'm having a low pain day alot of times I will sleep alot because I'd spent so much time hurting and not sleeping properly. Just a thought.:)

[lisajean]

Hey All,
Annie, thanks for the very informative post. Don't worry about sharing your personal info... it was very helpful. Hannah has been scheduled twice for a sleep study but has been too scared to sleep alone. I need to address this more agressively.
Lisa, I thought that at first but as time goes on she is sleeping more and more.
Today was another sleepy day. I managed to wake her up enough to take a drive to the lakes and a short walk but that completely wiped her out.
Speaking of sleep I need some myself so night all!
hugs,
lisa

[brians2000]

I would take her to a sleep study. Your PCP can arrange a consultation with a sleep clinic. I recently found out I myself have sleep apnea and that is why I fall asleep during the day. Good Luck, Brian

[Kira]

I'm so sorry Hannah is struggling with the exhaustion these days. It sounds like you guys have had such a hard time lately and I just wish you could catch a break.

It could be the meds, but she is so medically complex that it could be so many different things and it is hard to say. I know you haven't had the greatest luck with her doctors lately, but I think this is something they need to know about, especially with her brain issues and her sensitivity to so many meds.

I do know what you're talking about when you describe just how extremely sleepy she is, though. As my mitochondrial disease has gotten worse, I have needed a lot more sleep... I sleep 12-15 hrs a night and every week or so I need to just take a whole day or two and spend it drifting in and out of sleep on the couch for literally like 36-48 hrs straight, waking up to pee and snack and sometimes to change the TV channel, only to go back to sleep. It's not my meds, it's not some sleep disorder... it's the mito. It just exhausts me.

(This is a BIG change for me... as recently as April 2006, I was doing medical school rotations, spending time on-call, and averaging, at best, 6 hrs of sleep a night).

Now that I have been spending more time at my mom's house (helping her through chemotherapy), she's noticed that I need TONS of sleep/rest, and it sort of freaks her out. But it is just what my body needs, and I am trying to respect my body's increasing limits on my life and to work with my body, not against it. Of course, in Hannah's case, it could be something that needs fixing, so I wouldn't just give in 100% to the sleepiness until I knew that it was not a sign of a bigger problem. But in my case it just seems to be my disease sucking my energy out of me, and so I'm learning that it doesn't do me any good to fight it... I just end up making myself more exhausted and sicker.

I don't know what is causing Hannah to be so sleepy, but it sounds like something's not right. I'm sorry it's been so rough lately.

[Peter B]

Lisa,
While on Methadone many people take an amphetamine to counter act the weariness that meth causes. A couple that immediately come to mind are Strattera or Provigil. In retrospect I should have taken one but I didn't want to add another drug to my repertoire. I wound up wrecking a car because of it.
Oh, I wrecked a tree as well.

I know I sound a bit cavalier about it but believe me, the gravity of what happened didn't escape me. I might have killed someone just because I didn't want to take another drug. Stupid, to say the least.

Anyway Lisa, I hope you and Hannah find a solution and perhaps some relief.

Pain free days,
Pete