MECFS Makes My Head Hurt… Headaches & ME.
Headache Is Not One Issue
-Tension Headache
-TMJ
-Medication Overuse & Medication Side Effect Headache
-Migraine
-Trigeminal Neuralgia
-Cluster Headache
-Other Causes
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Headache Specialists
If there is one takeaway from this post it should be that headaches are an extremely complex medical issue that requires specialized knowledge and treatment. While neurologists, in general, have a poor reputation in the ME community (due to their frequent refusal to treat any neurological symptoms in absence of positive imaging) headache neurologists can be essential to treatment of complex headaches in ME.
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Tension & TMJ
Tension headache is the most common headache and what most people mean when they say headache. It is caused by tight muscles in the neck and head.
Treatments: Tylenol, Advil, Massage, Stress Reduction
Descriptors: Tense, painful, distracting
TMJ is a disorder where jaw strain creates pain around the ears, temples, and neck. It may be caused by a structural issue or muscle strain caused by clenching or grinding teeth at night.
Non-headache symptoms: neck pain, tinnitus, and popping or locking of the joint.
Treatments: Muscle relaxants, Splints or mouthguards, NSAIDs, Sedatives, PT
Descriptors: Tight, sore, pulsing
*Physical therapy for TMJ is generally stretching-based and may be appropriate even for ME patients.
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Migraine
Migraine is its own complex topic and impossible to cover here. It is not just a headache, but a set of neurological conditions that can cause a vast range of neurological symptoms even mimicking stroke or seizure and can present without headache at all. However, most common migraine headaches present with:
Symptoms: Pain on front back left or right of head, light and noise sensitivity, dizziness or nausea
As well as an aura or neurological symptoms that preceded or accompany the migraine
Such as: flashing lights, temporary vision loss, tingling sensations & difficulty speaking clearly
Treatment options are numerous and include:
Abortatives: Triptans, Disparin, High-Flow Oxygen, Migrinal, Ergomar, CRGP Antagonists
Pain Killers: NSAIDs, Tylenol (often combined with Benadryl or caffeine), CBD
Anti-Nausea: Odensitron, Prochlorperazine, Metoclopramide, Chlorpromazine, Tigan
Preventative: Propanolol (Beta Blockers), Verapamil (Calcium Channel Blockers), Amitryptaline (Trycyclic Antidepressant), Cymbalta (SNRI), Topramate (anticonvulsant), CRGP Inhibitors (Biologics)
Other: Stress reduction, trigger avoidance, and hormone therapy
Descriptors: pulsing, throbbing, pounding, perforating, stabbing debilitating
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Trigeminal Neuralgia
Trigeminal neuralgia is a severe pain condition affecting the trigeminal nerve in the face. This nerve is made up of 3 parts, the It causes two sorts of pain TN1 and TN2. It can be triggered by actions or contact as minimal as brushing teeth or wind and is one of the most painful conditions in the world.
Symptoms: Extreme facial pain on one side.
Treatments:
First choice is anticonvulsants:
Carbamazepine, Gabapentin, Oxcarbazepine
Also used are: baclofen, amitriptyline, nortriptyline, pregabalin, phenytoin, valproic acid, clonazepam, sodium valporate, lamotrigine, topiramate, phenytoin and opioids.
Descriptors:
TN1: Excruciating, electric shock, intense, intermittent
TN2: Constant, burning, aching
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Cluster Headache
Often nicknamed "suicide headaches" due to their extreme pain, cluster headaches are episodes of intense but short-lived single-sided head pain behind the eye. As the name suggests they tend to occur in clusters. They are believed to be a form of migraine and may be treated with migraine drugs.
Treatment:
Abortative High Flow Oxygen: One of the most effective treatments for cluster headaches and the reason I am here to write to this is high flow oxygen. Treatment consists of 15-25 liters/min of oxygen for 30 minutes through a rebreather mask. Many doctors are not aware of this treatment so patients should self-advocate. In a hospital setting many doctors are willing to try it as it is very low risk.
Abortative meds: Same as migraine. Disparin is the best OTC option.
Preventative meds: Verapamil
(Migraine preventatives may also help)
Descriptors: Shot in the head, hot poker, stabbing, excruciating, unbearable, unimaginable
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More Headaches!
While the previous headaches are the most commonly seen and addressed there are far more causes of headaches in ME patients that are also important to consider as they can be serious medical conditions of their own. This includes
Infectious Meningitis**
Aseptic Meningitis**
Chiari Malformation
Cerebral Spinal Fluid Leak
Autoimmune Encephalitis*
While it is unlikely that these are the cause of your headaches, these conditions seem to occur more commonly in ME patients or may be misdiagnosed as severe ME. All of these conditions are serious and potentially fatal if untreated and if suspected you should seek medical attention as soon as possible.
*In particular AE may present very similarly to severe ME but progresses quickly without intervention. Unlike ME, AE presents with strong positive blood tests, it is treatable and treatments significantly improve prognosis.
**Meningitis is also a common trigger for ME, particularly severe ME.
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Low Oxygen & Perfusion in MECFS
Low oxygenation of the brain may be responsible for migraine and cluster headaches. Low generalized and brainstem perfusion has been documented in MECFS* and may be an underlying reason why migraine and headache are such common symptoms of ME. Low perfusion upon tilt table testing has been documented even in ME patients who do not have POTS.**
Therefore, treatments that improve brain perfusion such as electrolytes and IV fluids or oxygenation such a high flow oxygen may be especially effective in treating migraine in MECFS.
Additionally, this suggests that symptoms such a light and noise sensitivity, speech dysfunction, and other functional neurological symptoms in ME may also be due to low brain perfusion-related migraine, even when headache is not the primary symptom. Thus headache neurologists may be well equipped to assist ME patients with neurological symptoms more generally.
*Brainstem perfusion is impaired in chronic fatigue syndrome. QJM. 1995 Nov;88(11):767-73. PMID: 8542261
**Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: A quantitative, controlled study using Doppler echography. Clin Neurophysiol Pract. 2020 Feb 8;5:50-58. doi: 10.1016/j.cnp.2020.01.003. PMID: 32140630; PMCID: PMC7044650.
More studies at https://me-pedia.org/wiki/Brain#Blood_flow
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MECFS and Headache are deeply intertwined subjects. There is far more to say on the topic than one post could ever cover, but I hope that this will serve as a mini roadmap into the complex land of Headache Neurology.
Despite the fact that Myalgic Encephalomyelitis is a neuroimmunological disease, neurologists frequently perpetrate medical gaslighting and are among the worst offenders when it comes to the psychologization and minimization of severe ME, frequently diagnosing patients with FND or conversion disorder. In my opinion, this is largely due to the fact that mainstream neurology has come to rely far to heavily on MRI and EEG and disregards patient symptom reports in favor of solely treating to these test results.
But because headache neurologists do not have these tests to rely on, they are often more willing to treat experimentally and to listen to patient symptoms. As such, I would highly recommend that anyone with severe ME or ME/CFS more broadly who suffers from severe Headache seek this specialist input.
While ME is untreatable, there are many treatments available for the commonly debilitating symptom of headaches. More so, these treatments efficacy largely depends on them being appropriately applied to the correct type of headache. Thus getting the right diagnosis is very important.
Additionally, treating the cause of migraine or cluster headaches as low brain perfusion may help to treat other neurological symptoms of ME. Thus headache diagnoses can be important stepping stones to receiving appropriate treatment for your MECFS.
