Help with Too much Sleeping?

[Hawkfeather68]

From what I've read I have hypersomnia. I sleep 12 to 16 hours per night/ day. Sometimes even more...

My doc has put me on Provigil, Amantadine, and now Ritalin to try to help with this issue. Regardless, I feel like I'm sleeping my life away. No pill is going to stop me from sleeping, I'm afraid. Then it takes me a few hours to wake up, figure out who I am, where I am, and what is this life thingy.

I'm 44 years old and was dx May 2011. They guess the MS started a long time ago. Too many lesions for this to be new.

My question is: If you've dealt with this, how on earth do you get yourself to wake up? I'm missing out on a lot of life here and really don't want to! I've tried several alarm clocks, hubby has given up on trying to wake me up, and everyone seems to think, "you need to rest". Ugh.

On the positive side of this, I'm aging well. Ugh. And I get to have some great dreams... but I don't want to live there.

Thank you for any suggestions, I'm beyond grateful!

Many Blessings,
Katie

[mercadies25]

I wonder is this all the time or just during flare-ups?
I can and will sleep for 12, 14 or however many hours I can during a flare-up wich can last weeks or months.

I also take ritalin now, but have tried all the rest that u mentioned. I am not as sleepy, I'm still very fatigued when not in a flare-up but, I can't sleep, go figure. Tired but awake?

As much as we are different, we are all the same. My neuro says if you need to sleep, then just sleep. I am only 46 and life is very different now. I enjoy as much as I can. Then sleep some more.

Good Luck!

[poohb3ar]

me too

i keep doing what we call 'sleeping beauty' syndrome. sometimes it's with a flare , sleeping 10 hrs a night with 2-3 hr naps daily. which i can sleep through 8 phone calls in 1 hr with phone in same room! alarm can go off for 45 mins. before it ever penetrates my brain!

sometimes i'm feeling fine, but just can't stay awake.
lately i was wondering if i had mono. sleeping so much, low fever, and hardly any appetite. but that would be wayyyy too easy!

on the plus side, getting lots of rest really helps you lose weight. (one-you can't eat while sleeping , and some studies have shown that you produce some hormone or something that burns fat or something when you get enough rest.) sorry, cog fog is BAD today.

funny i didn't sleep AT ALL last night. just 1.5 hr after DH went to work.
(another long story)

i really don't know what the answer is. just know that you're not alone in this crazy world of MS lala land.

take care & GOd bless ya!

[JayEm]

Sometimes, we just need a lot of sleep. I *hate* it because I'm naturally not much of a sleeper (I stopped taking naps when I was 6 months old, and had to start again in my 20s when this stupidity started).

But I also know that I feel incredibly sleepy when I'm not getting the right vitamins/minerals: for me, it's iron and vitamin D. If those are low, I sleep forever without being able to wake up.

And if something is disturbing my sleep, I need more of it and still feel sleepy--my sleep improved when I started sleeping in a room of my own, where it was quiet and dark and cool.

The ideal for me is to have light start increasing in the room about an hour before I need to wake up, and then to get as much light as possible when I'm trying to wake up (well that, and coffee!).

Good luck. It's miserable to feel like life is slipping by while you sleep.

[anneth121]

Don't you sleeping guys have to go to the bathroom during these sleeping marathons? I want you secret!

[valeriem2220]

I was just thinking of this myself today, after my 13 hours of sleep I got last night.
I am so upset because I had so much planned to do today and now the majority of my day is wasted.
I woke a few hours earlier and thought I needed to get up but could not even get my eyes to open so I fell back to sleep.
I have adderall to help with the sleepiness but when I can't even get out of bed to take the adderall it isn't going to help.
It seems I have these sleep marathons when I do too much the day before, but as a single Mom with no one to help me, I have to do a lot on my days off in order to get things done.
I am also getting really bad about sleeping through my alarm clock. I now have to set 2 alarms on the days I work. I have a third on stand-by if I get to that point.
I miss the days when I could sleep 3-4 hours a night and be good the entire next day.

My ex husband doesn't help much because he too is one of those that says "You need to rest" or "You need to just go to bed" He said that to me yesterday and I just broke down in tears and told him I would love to just sleep as much as my body says it needs to, but then who is going to do the things around the house that need to be done? It is just me and my home and children need me to be ok and to be able to function.

[Tawanda]

My ex husband doesn't help much because he too is one of those that says "You need to rest" or "You need to just go to bed" He said that to me yesterday and I just broke down in tears and told him I would love to just sleep as much as my body says it needs to, but then who is going to do the things around the house that need to be done?

Ugh! Don't you just HATE that? I am making a generalization here, but most women I know, M.S. or not, say the same thing about their significant others, but when they're sick they expect you to drop everything to take care of them! No offense to those husbands who aren't like the ones in my circle...

[Tawanda]

I wonder is this all the time or just during flare-ups?
I can and will sleep for 12, 14 or however many hours I can during a flare-up wich can last weeks or months.

I also take ritalin now, but have tried all the rest that u mentioned. I am not as sleepy, I'm still very fatigued when not in a flare-up but, I can't sleep, go figure. Tired but awake?

As much as we are different, we are all the same. My neuro says if you need to sleep, then just sleep. I am only 46 and life is very different now. I enjoy as much as I can. Then sleep some more.

Good Luck!

WOW! I've never heard a neuro say if you need to sleep, sleep, but I like it! Of course we all have times when we can't sleep due to commitments and responsibilities. Then there is also the impending doom that you are "sleeping your life away". But really, sometimes it just seems better all around to give and wake up a happier, less crabby person and concentrate on the quality of your time rather than the quantity. As DD gets older and a bit more self-sufficient I am feeling a bit less guilty about getting the sleep this disease demands as M.S. can be such a bully!

[Arthur Spooner]

What do you expect from an "ex husband". If he was still a husband then you could expect more. So long as he is co parenting, then he is doing his share.

I do feel sorry for Valerie. I also had to raise my children completely alone.

[JayEm]

Don't you sleeping guys have to go to the bathroom during these sleeping marathons? I want you secret!

I generally wake up enough to stumble to the bathroom every two or three hours. (Whether or not it's a sleeping marathon, that happens.)

I would love to just sleep as much as my body says it needs to, but then who is going to do the things around the house that need to be done? It is just me and my home and children need me to be ok and to be able to function.

What I had to do, finally, was accept that I could either make myself sick trying to do all of the things I thought **HAD** to be done, or I could lower my standards and be less sick. In my house, if I'm having a bunch of bad days and there isn't someone around who is able to help... not much gets done. If the kids are getting fed and cleaned, that's all that would really matter to me. (That's not for always, but for periods when I'm sick, I've learned to prioritize my health over my standards.)

Not sure it will help anyone, and don't take this as a serious suggestion, but I've been taking Allegra for allergies and it's given me incredible insomnia without being very sleepy during the day. Might be worth a try.

[valeriem2220]

He is a wonderful father. I couldn't have asked for better for my daughter.
My two oldest are from my first marriage and they haven't seen their father in years. So I went from one extreme to the other.
I think dealing with such a horrible father to my oldest kids it really makes me appreciate my second husband for being so wonderful with our daughter.
It all just gets overwhelming at times still though

[brandee05]

This sounds like my world daily. I sleep 10 to 12 hours, get up to go to the bathroom, let the dog out and sit in my recliner after taking first dose of dextro amphetamine to try and wake up. Then I sleep thru the dextro for at least 2 to 3 hours, then I am finally ready to try and stay awake for the day. Takes me hours to get fully awake. Then I take 2 more dextros all before 2 pm or I won't sleep. Still very tired allllllllllllllllll the time but can't sleep. Dr says no naps! Then my day is so short and its time to go to bed. Well now I'm awake. So i have to take lunesta to go to sleep. Vicious viciois cycle!

I firmly believe that my extreme fatigue is worse than my nymbness and pain sometimes. If i can stay awake for a day I would take enough pain killers so my hands would work enough to get something, anything done, just as long as I am not so fatigued all the time!

I don't have a solution for you on how long it takes for you to fully wake up but if you find a good solution I would love to hear it. I dread going to bed at night because I know what it takes to fully wake up the next day! Good luck to you Hawkfeather! I feel your frustration too!

[Hawkfeather68]

Wake Me Up Please!

Thank you for all the replies!
I just got out of a major sleep coma, 12pm to 8pm yesterday; I got up long enough to take my Copaxone. Then 10pm to now which is 10am. Did I need all that sleep? I’m about to call the nuero to ask.
As far as going to the bathroom during these episodes, I don’t need to go. I guess my bladder isn’t full from not drinking anything, so I don’t have to. For that matter, I don’t get hungry either. Yesterday I ate some Ritz crackers and that was enough.
I suppose I’ve gotten past the doom and gloom of leaving life aside to an extent. I need to get my taxes in for two years, the house is a mess, bills are behind, and my poor animals need attention. So grateful we decided to not have kids now.
I’m going to get some Allegra now! Tried the vitamin D and Iron, but that may take some time I’m guessing.
Thank you all once again, I really was beginning to think this was me and not so much the M.S. I’m not feeling so alone in this odd battle.
Blessings, Katie

[JayEm]

As far as going to the bathroom during these episodes, I don’t need to go. I guess my bladder isn’t full from not drinking anything, so I don’t have to.

If one's body is working properly, you're supposed to produce a hormone that stops your bladder from filling as much or as quickly while you sleep.

Good luck with feeling better. Try to get some sunshine and some balanced meals during times when you're awake. I know that also makes a difference for me, even though it doesn't feel like it will at the time.

[newbie but goodie]

I cant relate, but that sounds horrible!

Could you possibly wrench yourself up, turn on all the lights, take some stimulants, chug some coffee, then snooze for another hour or so to let it all kick in before you actually start trying for real to wake up?