Jan 23, 2012 (Started May 01, 2011)

  • Effectiveness
    Major (for idiopathic intracranial hypertension)
  • Side effects
    Moderate (for Overall) (ataxia (lack of coordination), sore throat, exhaustion, numbness and tingling with pins and needles, fatigue, nausea)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 2000 mg Daily
Advice & Tips: This makes you very tired, and you become very aware of shifts within your brain pressure. It is, however, the only thing that kept me from further cognitive loss and blindness (which I was on the edge of). I really do recommend it, even though it kind of sucks. We found out that my synthroid was the cause of my IIH; we don't know how, but my body somehow processes synthroid differently. I was taken off of synthroid (put onto cytomel) and spent a month being stepped off of diamox -- after the first half-life, the step-down rate became very quick (we waited until my medicine gave me two consecutive low-pressure headaches at the current dose). I still have over-sensitized eyes, non-perfect visual fields, and a lot of audio/visual identification trouble (what is that object, what does that word match up to) and strategizing/problem-solving/working memory isssues, but hopefully those will clear up in the next year or two.

Oct 25, 2011 (Started May 01, 2011)

  • Effectiveness
    Major (for idiopathic intracranial hypertension)
  • Side effects
    Severe (for Overall) (ataxia (lack of coordination), sore throat, exhaustion, numbness and tingling with pins and needles, fatigue, nausea)
  • Adherence
    Usually
  • Burden
    A little hard to take
Dosage: 2000 mg Daily
Advice & Tips: Make sure to understand whether you are having low-pressure or high pressure headaches (how they change in relation to whether or not you're lying down helps); I usually suffer high-pressure headaches but on a higher dose I realized when I took doses too close together (10 hours about instead of 12) I was actually getting some low-pressure headaches.

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