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    #16
    Originally posted by newbie but goodie View Post
    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?
    I can't speak for the others, but I've learned with my own body that if it's pushing me to sleep, I may as well just go to sleep. I wind up being more productive than if I try to push through the sleepiness to get things done.

    In my case, though, it's not so much about having trouble waking up (as in opening my eyes and getting out of bed). It's about having trouble with the overwhelming fog of sleepiness that kicks in half an hour after I get up during times when I'm needing more sleep.
    Accepting reality is not the same as wanting to have a problem. It means accepting something that will be happening whether I want it or not.

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      #17
      Sweet!

      Thank you newbie but goodie, love that name btw!
      I do all of the above including pop a ritalin and can STILL sleep on it, crazy huh! Called the neuro to ask about if this is okay or to force a wake up, he wants to see me tomorrow, like I can afford another 200 bucks ouch! I'll let ya'll know what was said, then get other opinions like crazy, this is insanity!

      lotsa hugs, but the good kind,
      Katie
      "There is something about the outside of a horse that is good for the inside of a woman"

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        #18
        Saw my Neurologist

        Well, I saw my Neuro about this issue. He said to try taking melatonin. I think he must have thought my sleep isn't quality sleep. So, I tried that, and guess what--I slept even more! Okay so now I'm not doing that obviously, but still dealing with this sleep stuff. I know there's an answer out there so, I'm going to find it!

        Thanks for all your suggestions! Chugging coffee, taking drugs to keep awake!

        Blessings!
        "There is something about the outside of a horse that is good for the inside of a woman"

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          #19
          I am going through a major MS episode.
          I am the type that gets hit with the sleep syndrom all through the day every day.
          It's not a choice. I have to sleep. Usually I only need around 1 minutes then I'm good to go.
          But, lately, I've been sleeping 8 hours, get up and 15 minutes later I'm back in bed again. I cannot wake up.
          I see just a few hours all through the day but most of my days and nights, I'm sleeping with this "whooey" feeling in my head, awake or not, 24/7.
          I cannot think.
          It's too much sleep and I have things I need to do.
          I can't even stay awake long enough to talk to my kids on the phone.
          I was in bed just a few minutes ago when I finally popped awake and thought, I think I feel better so I got up.
          It's 2:47am right now.
          I take plenty of vitamins, always have.
          Trying to stay awake long enough to eat in the morning with my new MS drug but really, the minute I eat I go back to bed for hours just to wake up for 15 minutes and go back to sleep again.

          One of my many neuros along the way said it was my brain trying to heal itself but this is ridiculous.
          For the last 10 years it wasn't this bad but I usually had to take one of two 15 minute naps during the day but now, its the opposite and I'm only awake that long.

          This topic isn't discussed that much about too much sleep and I wish there was more on it.
          I also had the thought something else was going on with me other then MS but my blood test came back just fine.
          About 2 weeks ago I had my first MRIs in over 10 years due to the lack of insurance and I haven't heard boo from my newest neuro guy on the results.
          I was just beginning to go into this episode so they must be interesting to say the least.

          Someone said up above the sleep is worse then the symptoms and I agree.

          I just want to wake up!

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            #20
            That's admirable of you to want to spend more of your life awake. I have both the unwakable sleep episodes and periods of insomnia. If I had to choose, I'll take the sleep any day. Once I get done with one of my sleep marathons(they usually last about 3 days) I wake up refreshed and clear headed- even have some energy.

            But I do know the frustration of not being able to wake up normally. Unless I have a commitment and I have to snap out of it ( usually that is accompanied by insomnia), it takes me a very long time to wake up. I wake up numb and have no sensation to need to go to the bathroom. I confess that I often prolong it because I know as soon as I get up all the unpleasant symptoms will come flooding in: Pain, restless legs, itching you name it. I do worry that, by not emptying my bladder, I may be damaging my kidneys. When I finally pry myself out of bed to go in the bathroom I cath about 2 liters.

            I did discuss this with my neuro and she just rolled her eyes and said, "That's MS!"

            Unfortunately, I really believe we need the extra sleep and that our bodies are repairing themselves. You can prop yourself up with stimulants but that doesn't sound fun being wired.

            If you can look at it this way it might be easier to accept: By sleeping all this time, you may be delaying the progression of your MS and that will give you more years to enjoy the time with your loved ones.

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              #21
              I too spent most of the day sleeping. I did recently have a sleep study and the final results are still pending. But because of the preliminary results suggesting narcolepsy, I did some reading. Guess what, narcolepsy Is seen more frequently in people with MS. Which sucks. Another invisible illness that makes us look lazy. But it is probably worth getting a sleep study because it could mean other treatments will be offered.

              Good luck!
              Abby

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                #22
                Originally posted by palmtree View Post

                If you can look at it this way it might be easier to accept: By sleeping all this time, you may be delaying the progression of your MS and that will give you more years to enjoy the time with your loved ones.
                Bless you. I needed to read this today!
                Tawanda
                ___________________________________________
                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                  #23
                  Yes, I agree with the suggestion to get a sleep study if you're having any kind of atypical sleep patterns. Mine found a "touch" of sleep apnea (stopped breathing 30-40 times/hour) plus a touch of narcolepsy and the major culprit, restless leg syndrome.

                  Their solutions nearly always involve potent drugs with major side effects, but I researched and tried some natural remedies with a bit of success and still felt it's better to know what's going on, and have options!

                  I now allow myself to rest when I need it, despite all my big plans and dreams, and have struggled with guilt over that for a few years. But I think I'm getting ready to let that one go

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                    #24
                    Originally posted by Hawkfeather68 View Post
                    So, I tried that, and guess what--I slept even more!

                    Good grief, ask for your $200 dollars back.

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                      #25
                      Originally posted by Tide View Post

                      Someone said up above the sleep is worse then the symptoms and I agree.

                      I just want to wake up!
                      I agree. MS Fatigue has been the most "life-ruining" symptom of them all. I sleep more than I am awake, and when I'm awake (if you can even call it being awake) I feel like a member if the walking dead!
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                        #26
                        If it's any comfort, the overwhelming need to sleep that plagued my first oh ten years with MS, has gone. I could do 18 hours a day, easy, once.

                        Now, I'm still knackered but I'm wide awake, for all the use it is.

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                          #27
                          The first 6 yrs after my diagnosis, I slept a lot. Like you are explaining I slept 12 - 14 hrs a night. It has not been til the last couple of years that I have only been sleeping 7 hours or so. Unfortunately, I have been having many nights where I only sleep 3 or 4 hours.

                          MS is one funky-crazy ride.
                          Live simply. Love generously. Care deeply. Speak kindly.

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                            #28
                            I certainly can relate

                            MS fatigue has always been an issue for me. I was able to control it with the use of Provigil since early 2007. The only time I would have sleeping jags was when I would get a UTI. That held true until this past Christmas when I had to go to the hospital because I was bleeding a lot from my bladder. Laser surgery was done to stop the bleeding and I was given antibiotics to control the 3 infections I had. During the time in the hospital and for the next 2 & a half months I was only awake long enough to take meds and eat maybe 2 hours, so I slept for 22 hours a day.

                            After that all was fine until the insurance company stopped paying for the Provigil we fought that for a month or so and I went back to sleeping about 21 hours a day. The Dr. finally switched me to a low dose of Ritalin which lets me stay up for a max of 6 hours. But I have brain fog the entire time I am awake.

                            Because I have PPMS I take no MS drugs and don't have exacerbations. The only thing that I have found to help me is get some exercise it may only be hand stretching exercises and slowly adding arms, legs and core to the routine as are able to stay awake longer. WARNING do not over do it

                            Mike

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