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Thread: Will life ever get back to normal?

  1. #1
    Join Date
    Sep 2008

    Unhappy Will life ever get back to normal?

    Paula's headaches did go away once we started reducing the amount of oxycontin. Once we dropped out the daytime dose, she didn't get the headaches.

    But now we have something new--she can't sleep in a prone position b/c of nasal stuffiness.

    We had her bed downstairs for the first month after surgery. Then last weekend we moved her back upstairs.

    She slept great the first night--12 hours (she was still on the pm dose of oxycontin at that time).

    Then the next night, she got up at midnight and said she needed a benedryl b/c her nose was stuffy and she thought it might be nasal allergies. So I gave her one and she went back to sleep.

    Next night, same thing, only this time after I gave her the benedryl, it took her 2 hours to fall back asleep.

    Fourth night--benedryl at midnight, up til 3 am til I rearranged her pillows, then she fell asleep.

    Finally last night we got the hint that she could be reacting to something in her room (all this week I've been vacuuming, laundering bed linens, dusting, etc. to do a deeper cleaning), so we moved her mattress/bedding into another room to see if that would help. Nope.

    She ended up in my bedroom, finally fell asleep around 3ish again.

    This pattern of nasal stuffiness only showed up in the past when Paula had a cold. She doesn't have one. During the day, she's fine, except she's tired now from lack of sleep. Napping doesn't help as she finally told me last night she wasn't tired and didn't feel like sleeping.

    At this point I am *so* exhausted, I don't know what to do or who to ask for help.

    Btw, her surgeon didn't think it was a problem with spinal fluid leakage causing the headaches (didn't give a reason why).

  2. #2
    Join Date
    Sep 2007

    I think I have read on this forum of kids (and adults) having trouble sleeping at night for a while after surgery. Could it be something to do with the body readjusting after meds are discontinued? Glad the headaches are gone!

    Oh--just reread your post and realized the insomnia is due to nasal stuffiness, which is very puzzling.

    Mary Ellen
    Last edited by WNCmom; 10-23-2009 at 08:07 AM.

  3. #3
    Join Date
    Apr 2006
    It could still be a problem with sleeping from surgery. I never told my neuromuscular specialist about my problems sleeping, but he knew enough to make the hypothesis when I talked to him after surgery that I was probably having trouble sleeping...something about neurons or brain or something. So, he fully expected me to have insomnia for a time...interesting.

    I do feel bad that she has nasal problems at night too...that doesn't seem fair I am back to work now, so, yes, life will eventually become somewhat normal. (It took me 6 months to be at the place where i was ready to join the human race...the board taught me that we're all different).

    Hang in there! It WILL get better!

    Always Smilin'

    1982 fused T2-L1
    pre op 45 - post op 33 (left thoracic)
    pre op 53 - post op 18 (right thoracic)

    recheck 2006
    right thoracic 57
    lower lumbar 34

    surgical revision April 28,2009
    revision T3-L1; new fusion L1-L4
    unsure of degrees at this point

  4. #4
    Join Date
    Jan 2006
    I'm sorry to hear about your daughter's sleeping problems. I'm not sure what state you're in, but here in PA, my allergies are horrible!

    Have you tried giving her Benedryl or another allergy med througout the day? I know the problem is only at night, but if you get a steady dose of medication into her, it might help. Or maybe give her Benedryl right before bed will help her get to sleep and stay asleep longer. Please be sure to check with your doctor before giving her anythng--some things may contain aspirin which they are not to take for a while after fusion.

    Have you tried running a vaporizor in her bedroom or maybe a cool mist humidifier?

    I don't really have any answers for you, just suggestions to try. Please remember to rest and take care of yourself.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  5. #5
    Join Date
    Sep 2003
    Northern California
    Moved thread from Kid's forum to Paren'ts forum.

  6. #6
    Join Date
    Jun 2005
    Austin, TX
    I had trouble sleeping for a long time after my surgery, especially in my own bed, so maybe it's common?
    Does she have seasonal allergies? If so, you could try to get her doc to prescribe a nasal spray, like really helps w/my stuffiness immediately.
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  7. #7
    Join Date
    Sep 2003
    Northern California
    I wonder if you should proactively be giving Paula benedryl at bedtime.

    I can only imagine how exhausted you must be. Hope things improve soon.


  8. #8
    Join Date
    Sep 2008
    Thanks, y'all.

    I really am sorry for being such a complainer. There are folks dealing with much worse things and I apologize to them. Ours are transient things, I'm sure.

    Thanks again for all of the suggestions.

    Talked to NP and she said it could be withdrawl from the oxycontin. Then I did find an article on the web about nasal congestion being one of the side effects of opiate withdrawl.

    So we will see. The past few nights have been a bit better. Couldn't give her the benedryl to sleep--started to have a rebound effect. I thought she had a cold, so I was giving her Robitussin AC. That knocked her out so she could sleep.

    So it's either a slight cold or withdrawl.

    Thanks again for your patience!

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