“Is it possible, then, that chronic fatigue syndrome represents an incomplete form of idiopathic intracranial hypertension (IIH)?” Higgins et al.

“Your lumbar pressure is high” I remember Dr. Baraniuk commenting as a doctor started  removing my cerebral spinal fluid during a spinal tap for a study. “We don’t know what it means – it might not mean anything – but I see it a lot in ME/CFS”.

Headache is a common symptom of IIH

Headache is a common symptom of IIH

After I was wheeled to another room I congratulated myself on having not only survived my first spinal tap  but on feeling so well afterwards.  I was relaxed and my mind felt clear.

In fact, I couldn’t remember the last time I’d felt this calm. I should have these lumbar punctures more often, I thought.

It was not what I  expected but my reaction probably wouldn’t have surprised Dr. John Higgins of Cambridge.

Dr. Higgins recently found that many Chronic Fatigue Syndrome patients also had a disorder called “idiopathic  intracranial hypertension (IIH)”. IIH is characterized by high cerebral spinal fluid pressure.

Dr. Higgins decided to check out how common IIH was in a group of ME/CFS patients who also had significant headaches.

The Study

Twenty people with ME/CFS (and headaches) were given lumbar punctures. Other than their headaches they had no signs (such as papilloedema or visual disturbances) of IIH. They simply had significant headaches and were severely fatigued.

The spinal taps revealed that twenty percent meet the international criteria for IIH ( CSF pressure >20cm H20). They were reclassifed as IIH patients and treated.

Most of the ME/CFS patients in the study felt better after their spinal fluid pressure was reduced - but they do meet the other criteria for IIH.

Most of the ME/CFS patients in the study felt better after their spinal fluid pressure was reduced – but they do meet the other criteria for IIH.

Removal of the cerebral spinal fluid during the spinal tap – which reduced the cerebral spinal pressure – resulted in symptom improvement in no less than 85%  of the patients (17/20) in the study – despite the fact that only five of them had abnormally high CSF pressures (above 20 cm H20) and most had CSF pressures in the ‘normal’ range.

None had the major clinical signs (papilloedema, visual disturbances) doctors look for to suspect IIH, but when their spinal fluid pressure was reduced they reacted just like IIH patients do – they felt better.

The improvement generally consisted of reduced headaches, heightened alertness and reduced  fatigue that lasted anywhere from a couple of minutes to several weeks. (It lasted for several hours for me).

These patients would likely never be assessed for IIH because they don’t fit the typical profile.

Dr Higgins concluded that the normative values for IIH are probably incorrect and that some people, perhaps many people, suffer from IIH at  far lower cerebral pressures than is currently expected. In fact a recent publication found IIH that resolved with treatment in two people who did not have ‘high’ CSF pressures.

One wonders if people with diseases featuring central sensitization such as FM and ME/CFS are more likely to react negatively to “normal” CSF pressures or if factors in their CSF are contributing to their symptoms.

 Idiopathic Intracranial Hypertension (IIH)

Chronic intracranial hypertension can take a huge physical toll. A formerly active and productive person may become too sick to take part in daily tasks. Frequently, someone with chronic IH can appear outwardly well and is frustrated in attempting to convey his or her painful circumstances. Physicians are equally frustrated since they have so little to use to combat this disorder. Intracranial Hypertension Research  Foundation

ME/CFS patients don’t typically  experience two of  the ‘big three’ symptoms of IIH: tinnitus and vision changes (due to swollen optic nerves) but they do experience many other symptoms.

  • Stiff neck is a common symptom in IHH, ME/CFS and FM

    Stiff neck is a common symptom in IHH, ME/CFS and FM

    Stiff Neck – A stiff neck  that is hard to move is probably a  common feature of ME/CFS, IIH and Fibromyalgia. The stiff neck in IIH could be caused  by high intracranial pressures that cause the spinal nerve sheaths at the back of the head and neck to stretch enough for the spinal nerves to exit the spinal cord and touch the muscle tissue. 

  • Nerve pain – Sharp, deep nerve pain in the arms, shoulders/upper back, hips/ lower back, and legs can occur with elevated intracranial pressure.
  • Dizziness and balance problems – it’s not  clear why these are happening
  • Endocrine problems – are present but not common in IIH. They may be due to flattening  of the pituitary glands and empty sella syndrome  
  • Memory difficulties
  • Exercise Intolerance


According to the Intracranial Hypertension Research Foundation many factors can cause IIH including head trauma, stroke, blood clots, infections (including  infectious mononucleosis), autoimmune disorders, drugs (including tetracycline antibiotics),  hypoparathyroidism and Addison’s disease.


Treatment mostly consists  of carbonic anhydrase inhibitors which reduce CSF levels.  The most commonly used drug to treat chronic IH is acetazolamide (Diamox) but Methazolamide (Neptazane),  furosemide (Lasix) and topiramate (Topamax) are also used. The only member of this  group that appears to be used somewhat regularly in ME/CFS and/or fibromyalgia is Topomax.


Much more rigorous studies are needed to validate these preliminary results but  the possible intersection between ME/CFS and IIH is intriguing.  IIH is another disorder with its own diagnostic challenges which needs a great deal more research and is probably significantly under diagnosed.

The high rate of symptom relief in this no doubt hand-picked group was striking and hopefully more researchers will pick up on this topic. If you do have undiagnosed IIH diamox might be an option.

Dr. Perrin has proposed that problems with central nervous system lymphatic drainage which affect the cerebral spinal fluid are common in ME/CFS. We’ll look at his hypothesis later and see if what, if any, connections it may have with these findings.


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