Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Minocycline and head pressure

Discussion in 'Lyme Disease and Co-Infections' started by skyfall, Oct 20, 2015.

  1. skyfall

    skyfall

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    Hi everyone,

    I have just started treatment with a new LLMD. I was seeing another LLMD but due to him retiring i had to find a new one. With the old doctor i was on minocycline x2 daily at 100mg. On day 4 i felt so out of it to where i couldn't walk in a straight line and felt like i was going to topple over. I also had head pressure that was so bad i ended up going to the ER twice.

    My doctor just told me he thought i had a bad herx and to power through. I was concerned about Intracranial Hypertension so i went to a Neuro Ophthalmologist who checked my optic nerves for swelling, but there wasn't any.

    She also sent me to a neurologist who told me that i should not take minocycline anymore and it was probably just a bad reaction. I saw my new LLMD and did explain all of this, but he said intracranial hypertension was pretty rare and it probably was just a bad herx and he wanted to try minocycline again at a much lower dose, only 50mg every other day.

    I started again and once again the head pressure is back and i'm not sure what to do. Has anyone taken this medication and had this reaction? I am still really concerned i may have intracranial hypertension.
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
  3. skyfall

    skyfall

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    They said due to optic nerves not being swollen they ruled out IH, so i was wondering what else can cause this.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    I thought everyone answered your questions on the other threads. Gave options and thoughts about their experience.

    Didn't that say its a side effect of the med?
     
  5. skyfall

    skyfall

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    Okay. I'll have to go back and look. I am really forgetful and don't remember. No need to get condescending.
     
  6. minkeygirl

    minkeygirl But I Look So Good.

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    And maybe that dose is too much for you?
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    I wasn't being condescending. When j looked it seemed everyone offered what they knew.

    And i was sincere that maybe the dose you're on is too much? Especially since you're still having problems.

    It seems lots of docs just don't get how sensitive we are and even subclinical doses can be too much.
     
  8. Aerose91

    Aerose91 Senior Member

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    I cant add too much too this as i havent started my minocycline yet but my doctor told me to be on lookout for this exact thing. I would imagine ots not too rare. I would think given our sensitivities we would just need to start with a much smaller dose
     

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