Surviving and Thriving with Chronic Illness

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High intracranial pressure? Don’t miss this easy to treat cause!

If you suffer with high intracranial pressure (not uncommon in POTS or Chronic Fatigue Syndrome/ME), you know how miserable it can be, right? Many of us suffer with dizziness, light-headedness, headaches, neck pain, nausea, tremulousness, vertigo, motion sickness, and brain fog.  Symptoms can come and go and change with our diet, stress levels, position, and even the weather!

Symptoms of high intracranial pressure can mimic Chiari 1 Malformation and/or craniocervical instability. Rather than requiring Chiari surgery or neck fusions, however, medical management of high pressure can often correct the problem --  and can do so overnight.

Some of us with high intracranial pressure can develop leaks out of our noses (ewww), our ears (vertigo, anyone?) and the worst – out of our spines. Spinal leaks can be difficult to diagnose and treat and we want to do all we can to avoid them (we’ll talk more about these leaks in an upcoming post). One way to help avoid them is to treat HIGH intracranial pressure, should it be occurring.

When high intracranial pressure is suspected, your doctor should first conduct a blood panel to rule out some easily reversed causes of this condition.  One condition that should be considered, yet is commonly forgotten, is iron deficiency.

Iron deficiency can cause high intracranial pressure that resolves with iron supplementation. When we are low in iron, we can develop a form of anemia called microcytic anemia. In microcytic anemia, red blood cells are too small and are usually hypochromic (pale). Other symptoms of microcytic anemia include

Weakness, fatigue, or lack of stamina

Shortness of breath during exercise


Trouble concentrating



Pale skin

Many of these symptoms occur in Chronic Fatigue Syndrome/ME and POTS and if we are not careful, our physicians can forget to continue to keep an eye on our iron levels. They sometimes assume these symptoms are part of our “invisible illness” – symptoms they don’t understand -- and they may discontinue monitoring us for conditions such as anemia. Because this form of anemia can occur with high intracranial pressure, it is important to check iron levels prior to treatment for high intracranial pressure.

At POTS Care, more than half of our patients have high intracranial pressure that has been undetected in the past. My kids and I also suffered with this beast for almost two years when we developed POTS. We were all fortunate enough to respond to Diamox to lower our pressure, which was hugely helpful to relieve many of our disabling symptoms. Then, we had to begin the search for the cause of our increased intracranial pressure! There is always a reason for high intracranial pressure and blood work is essential as a first step in getting answers.

Don’t let your doctors miss low iron as a potential cause of your high intracranial pressure!


To learn more about Dr. Driscoll’s journey for answers to POTS and other invisible illnesses, you may be interested in her book The Driscoll Theory.

If you suffer with POTS, check out the free brochure “Just Diagnosed with POTS? The Top 4 Must-Do’s” available at

           Dr. Diana Driscoll is now working full time at POTS Care. A recovered POTS/EDS patient, and mom of children who have now also recovered, she has been instrumental in finding the underlying medical conditions responsible for this and other potentially disabling “invisible” illnesses.


Biousse, Valérie et al. "Anemia And Papilledema". American Journal Of Ophthalmology, vol 135, no. 4, 2003, pp. 437-446. Elsevier BV, doi:10.1016/s0002-9394(02)02062-7.

Mollan, S.P. et al. "Idiopathic Intracranial Hypertension Associated With Iron Deficiency Anaemia: A Lesson For Management". European Neurology, vol 62, no. 2, 2009, pp. 105-108. S. Karger AG, doi:10.1159/000222781.

CAPRILES, LUIS F. "Intracranial Hypertension And Iron-Deficiency Anemia". Archives Of Neurology, vol 9, no. 2, 1963, p. 147. American Medical Association (AMA), doi:10.1001/archneur.1963.00460080057008.

Kaul, B. et al. "Iron Deficiency Masquerading As Idiopathic Intracranial Hypertension". Case Reports, vol 2009, no. mar08 1, 2009, pp. bcr0620080346-bcr0620080346. BMJ, doi:10.1136/bcr.06.2008.0346.

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