CHRONIC HEADACHES IN ARACHNOIDITIS
Sarah Andreae-Jones MB BS (Smith)
Patron of The Arachnoiditis Trust UK

 

There seem to be various reasons why we get chronic headaches in arachnoiditis:

1. Meningism : not quite the same thing as meningitis: it means irritated meninges : which we have chronically, especially if we have chemically-induced arachnoiditis, in particular from pantopaque or depo-medrol which are oil-based and tend to hang around in irritative droplets. There may be a diffuse, constant low-grade headache and stiffness in the neck, with possible discomfort from bright light. There may be flare-ups which cause more severe symptoms.
2. Altered spinal fluid dynamics: scarring anywhere in the subarachnoid space interferes with the flow of CSF (cerebrospinal fluid) throughout the cerebrospinal axis, which of course includes around the brain. At times, this might cause slight alteration in the pressure of the fluid around the brain causing headaches which are similar to those seen in raised intracranial pressure. These tend to be sudden onset, starting when bending over or on exertion, or form cough/straining at stool, from the back of the head working forward to over the eyes and there may be a sensation as if the skull has shrunk, particularly around the temples. This is similar to headaches seen in Chiari-1 malformation.
3. Migrainous headaches: one or both sides. Throbbing pain which may be preceded by a visual aura (e.g. seeing stars) and there may be pain in one eye and sensitivity to light, with some nausea or even vomiting. These may be due to musculoskeletal problems, especially in the neck and trigger points in the head and face. There may also be facial pain (trigeminal neuralgia), tooth pain (odontalgia) or pain deep in the ear (geniculate neuralgia) : this can be triggered by cold wind, eating ice-cream, or various other precipitating factors. The pain may be very intense and there may also be watery eyes. Transient pains ("electric shock" type) are likely to indicate an irritated nerve (neuritis).
   
   Cluster headaches are a migraine variant : they involve pain that comes on suddenly and is often behind one eye( usually the same eye): it tends to peak quickly but may only last an hour or so. These headaches occur in "clusters" of a few days at a time. Migraines are more common in women, cluster headaches in men.
4. Sinus-type headaches: a number of people with arachnoiditis seem to suffer from frequent bouts of sinusitis; the congested sinuses and nasal passages will give rise to a heavy, dull frontal headache, with possible earache. The headache may be worse when bending forward or first thing in the morning and there may be low-grade fever (you should seek medical attention for the latter) The pain may be aggravated by alcohol, sudden temperature changes and going from a warm room out into the cold
5. Tension headaches due to muscular tension (secondary to being in constant pain) generally over the forehead with a sensation of a band tightening. These tend to be dull, in the forehead or back of the head and neck. (like a "tight band"), pressing but rarely throbbing. Neck problems are likely to cause this type of headache.
6. Sometimes headaches might actually be a side-effect of medication. This is called "rebound headache" and occurs in people who are taking regular doses of painkillers, especially opiates. It may cause a chronic daily headache.
7. Food intolerances can cause headaches: especially foods containing nitrites, monosodium glutamate, tyramine and aspartame. Also, some people may suffer from mild hypoglycaemia (low blood sugar) if they do not eat regularly every 4 hours or so (this will often be worse if you have had a very high sugar meal, as there may be a rebound hypoglycaemia 3-4 hours later. This will cause a shaky feeling, with profuse sweating and pallor, sometimes with quite an aggressive mood, which all disappear quite quickly after eating something (especially if it's high sugar).
8. Miscellaneous causes include TMJ problems, dental abscess, near-sightedness/new glasses, temporal arteritis.

Please note: any severe acute headache with neck stiffness and discomfort with bright lights, especially if accompanied by fever and/or nausea might be MENINGITIS and you should seek urgent medical attention. Equally, as always, please remember that any new or sustained increase in symptoms should not be assumed to be due to arachnoiditis: you must get it checked out!!

Warning signs that suggest a serious condition that requires immediate medical attention:

1. Sudden and very severe pain, with drowsiness/confusion, or difficulty speaking, increased weakness or double/blurred vision.
2. Headache after a head injury if there has been loss of consciousness or "seeing stars".(especially if the above problems and/or nausea/vomiting.)
3. Pain in one eye with persisting blurred vision: this needs checking out by an ophthalmologist immediately.
4. High fever, neck stiffness (see above) and drowsiness.
5. Persistent headache present every morning on waking but improves during the day.

How to deal with these problems? Most people seem to find lying down in a darkened room can help. Other than that, it's a question of finding some measure that helps you personally. Although generally I would suggest cutting out caffeine,(it can worsen some neurogenic pain) it can be very useful when you first start a headache: 1-2 strong cups as soon as the headache comes on may help. (If you are going to come off caffeine, be sure to do it very gradually as withdrawal can itself cause headaches).

Cold/warm compresses might also help. Wrapping up your face if you go out in the cold or wind may help to prevent triggering neuralgia/migraines.

Feverfew is a useful herbal preparation for migrainous headaches, but please check that it's OK to take with your regular medications. Opiates will not tend to be very helpful, in fact they might even be the cause on occasions.

Stopping consumption of foods that trigger headaches can also be very helpful, if you can identify them. Low blood sugar can be avoided by regular meals and eating low-sugar carbohydrates (e.g. bread, pasta) as these take longer to process and will give a more even blood sugar rather than a sudden rise which high sugar intake will cause.

Other techniques such as acupuncture, massage and cranialsacral therapy may be of use.

Addendum MAY 2000:

This article doesn't really go into the other reason: musculoskeletal problems including cranial problems. Here's an extract from a talk I gave to the British Chiropractic Association last October:

Facial pain: Some patients seem to suffer from trigeminal neuralgia and there are a few who have symptoms suggestive of geniculate neuralgia ,superior laryngeal neuralgia, glossopahryngeal neuralgia or occipital neuralgia.

Headaches are very common and tend to be of 2 main types:

(i) migrainous: possibly due to myofascial trigger points or to cervical pathology.

(ii) occipital radiating forwards to behind the eyes, with possible feeling of pressure around the temple. : Onset of these is usually after exertion, valsalva manoeuvre or bending forward. These seem like those due to raised intracranial pressure.(CF Chiari-1 malformation*)

*Neurosurgeon Michael Rosner in USA suggests that Chiari malformation may be seen in CFIDS and FMS, both of which are quite often diagnosed in arachnoiditis patients. I am currently trying to establish what degree of crossover there is between FMS and arachnoiditis. A recent study in USA ( ) has linked Chiari with FMS: of 364 patients with Chiari, nearly 60% had a prior diagnosis of Fibromyalgia, 12% of CFS, 31% migraine/sinus headache, 9% MS and 63% psychiatric/malingering.

Features of Chiari include: occipital headache radiating behind eyes (exacerbated by exertion, especially leaning the head backward or coughing); disordered eye movements, vision changes; dizziness, autonomic symptoms (orthostatic hypotension, NMH); muscle weakness; unsteady gait; cold, numbness and paraesthesiae in extremities; chronic fatigue; tinnitus; sleep apnoea; hearing loss; IBS; frequent urination; difficulty swallowing. As we have seen from the survey results, many of these symptoms are seen in arachnoiditis.

A third type to consider is of course the rebound headache due to regular analgesic use, particularly opiates.

In addition, a number of patients suffer from frequent sinusitis and may therefore have sinus related headache with sensation of fullness around the face (these headaches tend to be worse on bending forward, also first thing in the morning.)