Do you think my symptoms fit?

Index Support Center Forums Diagnosis Process Do you think my symptoms fit?

This topic contains 7 replies, has 3 voices, and was last updated by Periwinkle 2 weeks, 1 day ago. This post has been viewed 84 times

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  • #8430

    Periwinkle
    Participant @periwinkle

    Hello All,

    I feel awkward making a “do you think I have it thread…” but I have spent 15+ years trying to figure out why I am exhausted all of the time…so I figured, why not…

    As long as I can remember, at least since high school, I have been tired. No matter how much sleep I would get, 12+ hours sometimes. It didn’t get me feeling rested, just got me teased by my parents who couldn’t understand why I’d need so much sleep. It has gotten progressively worse. I was previously misinformed about narcolepsy and always rejected it as a possibility. But after the reading I have done today, I think I could have it.

    I “feel” a sound when I am falling asleep and I am extra tired. I feel it and I hear it, almost like a humming or buzzing that comes in waves and I feel like I am floating up and down on waves. I was 32 before I learned that not everyone hears that sound…I was talking to my doctor and I was like “you know that weird sound you hear as you fall asleep?” and she didn’t know what on earth I was talking about.

    Sometimes, esp during afternoon naps, I can’t wake up. I feel almost like I am drowning, and waves of sleep are crashing over me and I cant get out, like being in the deep end of a water park wave pool and I can’t fight it. Sometimes it takes me a few minutes to be able to move, esp after a nap.

    I can fall asleep and have a complete dream and wake up 15 minutes later. I have very weird intense, sometimes violent dreams, go through periods where I lucid dream frequently, but then time periods where I don’t as often.

    There have been times in my life where I was 15 min of inactivity from a coma at any given moment. Pregnancy was a 9 month long nightmare haze of exhaustion. About a year ago, I had to pull over at a rest stop and sleep 45 min, and that was a weird feeling sleep that I can’t describe.

    I am prone to bouts of insomnia, a near inability to sleep unless I take benadryl or my body is just depleted. Sometimes when I am exhausted I feel nauseated and like my skin has a fever and like I’m not all in my body. I am a poor sleeper, waking at least 3 times a night to re-position, sometimes more.

    I did used to drop cups, but I think that was actually due to severe carpal tunnel which has been corrected. I do have muscle weakness, but it is for repetitive motions, like I can only fold 4 pieces of clothing before my hands and arms ache and I have to stop and rest them.

    Every system that can be checked with labs comes back normal. I have a normal TSH T3 T4; I do not have mono…I do not have celiac disease.

    What do you guys think? Worth a sleep study?

    Thanks!

    Periwinkle

    But I'm always dreaming, even when I'm awake; it is never finished.
    -P. S. Beagle

    #8432
    Ferret
    Ferret
    Participant @ferret

    @periwinkle Sounds like it’s worth a sleep study.
    To make the study worthwhile you should not be on any medication that suppresses REM and that includes not only prescribed medicines but also nicotine and/or cannabis.
    Are you taking ANYTHING right now?

    #8435

    Periwinkle
    Participant @periwinkle

    I’m taking 75mg of benadryl at night, 20mg of lexapro and 150mg of Welbutrin in the morning. The lexapro is essential, but I could wean off the other 2 if I needed to.

    But I'm always dreaming, even when I'm awake; it is never finished.
    -P. S. Beagle

    #8437
    Ferret
    Ferret
    Participant @ferret

    Discuss your meds with your Doctor because they WILL make a difference in the outcome of the test.

    #8439

    Natdoc
    Participant @natdoc

    Periwinkle
    Welcome!!
    No question a sleep study is in order as well as an MSLT on the day following your study. Make sure and inform your Physician of all your symptoms and medications. The Wellbutrin and also Lexapro you are taking will affect both studies, can you possibly do without both for 5-7 days prior to your study? By the way you must be properly weaned from both medications.
    Benadryl is in no way good for sleep perhaps you need to consider a different medication.
    You do not want to schedule or undergo these tests without proper preparation if you do you will just end up having to repeat them. If available you may want to schedule an appointment with a Board Certified sleep physician in order to receive a complete evaluation.
    I wish you all the best and know that you are in a good place on this forum.

    #8441

    Periwinkle
    Participant @periwinkle

    I can do without my meds for a week or so.

    I know Benadryl is not great for me, but without it I’m awake till 1 or 2 am and I am a single working mom who starts work at 8, getting up at around 610 to get kids to school and me to work. I’ll take any sleep I can get. I have tried melatonin but it makes me paranoid. But you are right, benadryl is a bad habit.

    I also drink large amounts of coffee daily.

    I found a board certified sleep specialist and have requested an appointment for the 17th of Dec, since I already have that day off.

    🙂

    Peri

    But I'm always dreaming, even when I'm awake; it is never finished.
    -P. S. Beagle

    #8443

    Natdoc
    Participant @natdoc

    Periwinkle
    Good for you, you are on the right track and on your way.
    Please remember that this is a process and there is no magic bullet.
    If I might suggest a substitution for the benadryl, Have you considered reishi or Shiitake mushroom tea prior to bedtime?
    I know it sounds terrible but we have had great results both with inducing sleep and insomnia.It is also fantastic for boosting your immune system.
    Again, I wish you all the best.

    #8445

    Periwinkle
    Participant @periwinkle

    Thank you for the tea suggestions, Natdoc. I will look into them. I admit, the mushroom one does sound un-tasty. A few times I have gotten sleepy with Sleepy Time Tea or Valerian tea but only once in a while, if I drink it every night, it stops working.

    I am realizing the more I read that my sleep habits are horrible. I plan to change a lot of things after the sleep study. I will stop all meds for a week or so prior, but otherwise I just sort of want them to see me way I have been the last few years. I have avoided a sleep study for a long time…I might as well make it count.

    I appreciate all of you

    Peri

    But I'm always dreaming, even when I'm awake; it is never finished.
    -P. S. Beagle

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