This topic contains 2 replies, has 2 voices, and was last updated by  Brittany Foster 1 month, 3 weeks ago.

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  • #19302
     Brittany Foster 
    Keymaster

    Lately I have been dealing with really bad headaches when I wake up. I think it might have to do with not being able to use my BIPAP because of the regurgitation and reflux. But they have been getting really bad. I am thinking of making an appointment with my neurologist just to make sure there is nothing else that is going on or contributing to this. With my headaches I feel disoriented, my head feels really heavy, and sometimes my mouth feels tingly almost like I am having a complex migraine. I was diagnosed with complex migraines in the past but they didn’t usually appear right after sleeping or napping.

    Does anyone else wake up with confusion/ headaches/ or migraines? What doctor or doctors are you seeing for this? I plan on bringing it up to my medical team tomorrow especially because it is disrupting how I feel the rest of the day.

  • #19308
     Colleen Steele 
    Keymaster

    Brittany, yes, this was recently a problem for my son. I took him to his neurologist and he increased the bedtime dose of topamax. It seems to be helping but the downside is that this medication causes brain fog, which he was already experiencing before the increase.

    I think his is brought on by all the heavy medications he takes at bedtime but I also think change in weather plays a part too. I know you know to discuss the problem with your team. Especially with all that you have been through lately I wouldn’t want to assume it’s just a side effect or environmental. It’s always best to be cautious.

    I’m sorry you are experiencing this. I know when my son was getting the morning headaches it would effect his entire day. I hope you find relief soon!

    • #19318
       Brittany Foster 
      Keymaster

      Hi Colleen,
      yes, I definitely plan on bringing this up with my team tomorrow and talking with them about these symptoms. Once I have a better handle on how to manage my bipap with this regurgitation then it will be better for me. I hope they can provide me with some answers as to what to do to manage this. I know that there are no surgeries that will “fix it” but knowing that there is something I can do will give me some more hope. I’m sure the headaches are so hard for you son to have to wake up with. It definitely gets me aggravated especially because I was doing well with the headaches when I was able to use my machines. Just seems hard to manage right now, but I’ll get there!

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