Bizarre Side Effects of Diamox

TLDR: Diamox can cause metabolic acidosis. Consult your doctor to see if your debilitating side effects are as a result of metabolic acidosis. There are options to correct it!

Hello,

I’ve seen a lot of people posting about the bizarre side effects they’re experiencing with diamox and I wanted to chime in with my personal experience as I wish someone had told me about this side effect when I was in the thick of being a newly diagnosed 15 year old.

I went through IIH about 3 years ago and have fortunately been fully recovered since.

One thing I wish someone had told me when I started Diamox was how significant the side effects can be, especially at the higher doses often used to treat IIH.
At my highest, I was taking around 2,250 mg per day.

While Diamox can be incredibly effective, it can also cause metabolic acidosis and other side effects that may significantly impact quality of life.

For me, symptoms included:

Tingling in my hands, feet, and face
Shortness of breath
Nausea and diarrhea
Loss of appetite
Fatigue and exercise intolerance

I remember struggling to walk even short distances without needing to stop and catch my breath. At the time, I thought I was just dealing with the medication, but many of these symptoms were related to the metabolic acidosis it was causing.

Not everyone experiences side effects to the same degree, but if you’re having symptoms like these, it’s worth discussing them with your doctor. There may be options available, such as monitoring your labs more closely or considering medications like sodium bicarbonate or potassium citrate if your physician feels they’re appropriate.

I personally switched to potassium citrate because taking large amounts of sodium bicarbonate became difficult for me. Neither option was perfect, but they did help improve my shortness of breath, which was by far my most debilitating symptom.

Most importantly, I want anyone currently struggling with IIH to know that recovery is possible. Three years ago, I never imagined I’d feel normal again, yet today I do.

Keep advocating for yourself, keep asking questions, and keep holding on. My heart goes out to all of you who are going through this right now.