Diamox (Acetazolamide) For ME/CFS, POTS and Long COVID

Diamox (Acetazolamide) is….

A carbonic anhydrase inhibitor. The fact that it inhibits a key enzyme in the body – carbonic anhydrase – helps to explain how it can have so many effects. Classified as a metalloenzyme, carbonic anhydrase does a very basic thing; it converts water and carbon dioxide into bicarbonate and hydrogen ions.

As it does that it reduces the amount of acid excreted in our urine, reduces the production of cerebral spinal fluid, and may inhibit nerve activity in the brain and has been used as an antiseizure drug. It also has diuretic properties and can make the blood more acidic.

Note that Diamox is an inhibitor; that is it inhibits the activity of the carbonic anhydrase enzyme. Diamox’s ability to reduce fluid production in the eye and relieve pressure makes it helpful in glaucoma. Similarly, Diamox’s ability to reduce the production of cerebral spinal fluid in the brain has made it an important drug in treating idiopathic intracranial hypertension.

In that vein, Diamox is also used to reduce cerebral spinal fluid pressure in patients with cerebral spinal fluid leaks.

Interestingly, given the fact that Diamox is clearly helpful in some ME/CFS/FM patients, some studies suggest it may increase respiratory muscle fatigue and reduce exercise tolerance in athletes.

Diamox (Acetazolamide) May Be Effective in Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, and other Complex Chronic Diseases Because…

Of its ability to reduce the production of cerebral spinal fluid (CFS) and relieve the idiopathic intracranial hypertension caused by high levels of CSF. Small studies and review papers dating back to 2013 proposed that increased cerebral spinal fluid pressure (idiopathic intracranial hypertension) was present in ME/CFS and fibromyalgia, but it wasn’t until a large Swedish study found that IIH was almost ubiquitous (83%) in chronic fatigue syndrome (ME/CFS) that it really caught on.

Under Pressure: Large Spinal Study Finds Intracranial Hypertension Common in ME/CFS

Diamox, it should also be noted, is also used off-label for migraine – another common comorbid condition with these diseases.

Note that the authors of these studies and papers and other ME/CFS experts assert that the current diagnostic protocols for IIH are overly limiting and miss most of the IIH cases found in these diseases. The medical profession appears to believe that IIH is mostly a disease of overweight women. Indeed, a recent review reported that weight loss is the cornerstone treatment for the disease.

Chronic Fatigue Syndrome (ME/CFS) Doctors Report

Both Drs. Kaufman and Ruhoy first try Diamox in their IIH ME/CFS/FM patients. Dr. Ruhoy stated the drug is fairly well tolerated and safe. She uses topiramate if acetazolamide doesn’t work out and may add a little furosemide or Lasix (to topiramate but not acetazolamide) to make topiramate a little more potent.

Diamox can affect so many symptoms that Ruhoy and Kaufman noted that patients can respond to Diamox because of something other than IIH.  When it works, though, it can make a “huge difference”  and be “life-changing” for these patients.

Dr. Kaufman reported that one of the biggest problems he has with Diamox is that some of his patients get very fatigued. Noting the dive in pressure that occurs when high CSF pressure triggers a cerebral spinal fluid leak, he wondered if he was simply catching some patients at the wrong time – when their cerebral spinal fluid pressure was low.

In this scenario, the high CSF pressure causes a leak to occur – which relieves the pressure and drives it down. Under those circumstances, the drug would further lower CSF pressure, causing fatigue.

Shanti on Phoenix Rising reported that in a webinar neurologist Jay Lombard stated that Diamox was his go-to for tinnitus and that it works by regulating the fluid in the inner ear.

Chronic Fatigue Syndrome (ME/CFS) / Fibromyalgia Patients Report

One person who responded well to traction – and thus tried Diamox – reported that his/her POTS symptoms were mostly gone, that she/he had increased exercise tolerance, no longer experienced feelings of head pressure, had greatly reduced neck and back pain, increased mental clarity, and was sleeping better and felt less overwhelmed and anxious. Two years later she was still taking the drug.

More Resources

High Intracranial Fluid Pressure, ME/CFS, Fibromyalgia and Long COVID

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