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Fall 2003
Headaches and
CFIDS
Taming the pain, easing the
pressure
By Kim
Kenney
“I don’t remember ever having had a headache before
CFIDS. About eight months after a
very acute onset of flu-like symptoms and memory and concentration problems
later diagnosed as CFIDS, I had
my first headache. At the time I was already spending 20 hours a day in bed —
wrung out, brain-fogged and very weak. I didn’t think it was possible to feel
any worse. I was wrong; when I have a headache I am at my very worst. Some-times
they last several days.” — Carra, describing her tension headaches
“Headache of a new type or severity” is one of the eight
symptom criteria listed in the international case definition for chronic fatigue
syndrome. Headache is very common in the general public: Ninety percent of men
and 95 percent of women report having had at least one headache in the past
year. However, for people with CFIDS (PWCs),
headache is layered on top of other symptoms and can profoundly affect function
and quality of life. Researchers and clinicians are learning more about how to
treat and prevent headache, so new options for diminishing its impact for those
with CFIDS warrant exploration.
Types of headache
Tension headaches affect 75 percent of those who
get headaches. It is generally defined as a steady pain on both sides of the
head and is caused by tightening of the shoulder, neck and head muscles.
Soreness and pressure can accompany the pain and it may be brought on or made
worse by stressful events or a hectic day. Relaxation techniques can be helpful
as part of an overall treatment program, discussed in more detail below.
Migraines are the most debilitating form of
headache; an estimated 25–30 million people in the
U.S.
have
experienced them. Twenty percent of sufferers describe a distinctive group of
symptoms that immediately precedes the throbbing pain of a migraine — visual
disturbances (e.g., flashing lights or “floaters” in the field of vision),
nausea and increased sensitivity to light, sound and odors. These symptoms are
called an “aura” and usually fade as the headache sets in. Cutaneous allodynia,
hypersensitivity to contact with the skin of the face, head and forearms, is a
recently recognized feature of migraine attacks. (See box on p.6) Migraines are
thought to be caused by chemical and/or circulatory changes in the brain. There
is often a family history of migraine and set of activities or circumstances
that trigger the start of a migraine attack. Prevention is a key treatment
strategy.
Cluster headaches affect more men than women and
account for just one percent of all headaches. These headaches are short-lived,
but come in groups — hence the name. They are usually localized to one side of
the head and may be accompanied by a bloodshot eye or runny nose. Cluster
headaches are described as being more severe and intense than other types of
headache.
Rebound headaches occur as a response to overuse
of headache medications; as the medicine wears off, the pain builds. This can
lead to escalating use of painkillers if not treated appropriately. The term
secondary headache refers to headache caused by another organic
condition, such as infection (e.g., strep often causes headache) or increased
pressure in the brain due to a tumor or other structural abnormality.
Headaches can also signal inflammation and/or infection of the
sinus cavity, or can result from problems with vision or improper vision
correction. Providers generally try to rule out these possibilities before
beginning a headache treatment program.
Headache types have some overlapping features and it is
possible for an individual to experience more than one type of headache (e.g., a
person who has frequent tension headaches may also get occasional migraines).
Being able to distinguish between headache types enables the patient and
provider to determine which treatment strategies will be most effective in
combating pain and preventing future headaches.
Assessment
There is no objective sign or
diagnostic test for headache, so diagnosis is based on medical history and
patient reports. While primary care providers can often manage routine
headaches, there are a growing number of professionals who specialize in the
treatment of headache disorders. Neurologists, pain management specialists,
physiatrists, psychologists and other professionals may participate in advanced
education or research about the diagnosis and management of headache.
Additionally, headache clinics may offer a one-stop, multi-disciplinary approach
to patient care.
The provider will generally rely on information collected in
the patient interview to determine if brain scans or other tests are warranted.
If the headache pattern, presence of other symptoms and/or an abnormal
neurological exam suggest encephalitis (swelling of the brain and spinal cord)
or tumor, the doctor may order an MRI or CT scan before determining a course of
treatment. The physical exam can reveal signs of muscle tightness, sinus cavity
tenderness, blood pressure disorders and other clues as to underlying sources of
head pain.
Tools that help track headache triggers, frequency, severity
and impact on function can be very beneficial in establishing an accurate
diagnosis and developing a treatment plan. Keep a headache diary for several
weeks, making note of how and when the pain starts, what other symptoms
accompany it, what might have provoked it (e.g., environmental conditions,
activity that preceded it, foods or drinks taken before the headache, etc.) and
how long it lasts. You may want to note such things as the weather, barometric
pressure, day of the menstrual cycle — all have been reported to trigger
headache in some individuals. Also record what treatment you undertake, whether
it’s medication or stress relief techniques, and what seems to reduce, if not
alleviate, the pain. Bring the diary to each appointment with the treating
provider.
The Migraine Disability Assessment (MIDAS) is a five-item
questionnaire “scored” to help determine the level of disability caused by
headaches over the past three months. The Headache Impact Test is a more
in-depth questionnaire developed to provide a headache profile for patient and
provider to use in setting a treatment plan and tracking changes in headache
patterns. Both can be found online through the National Headache Foundation, at
www.headaches.org.
Treatment
There are many, many different ways to
treat headaches. These strategies are usually broken into (at least) two
categories: acute or abortive (treatment that helps end or diminish a headache
once it occurs) and preventive or prophylactic therapy (that helps reduce
frequency with the eventual goal of eliminating headache). Further, treatment
can be divided into other categories: medical, behavioral and
complementary/alternative.
Most sufferers find that achieving success requires a
combination of approaches, and that different treatments may be effective at
different times. It often requires a considerable amount of trial and error,
working with a provider or therapist to suggest logical combinations, monitor
success and make changes. Using a chart like the one on p.4 can help you track
what you try and how well it works. The example contains generic names of
commonly prescribed medications and a general guide for how each of the other
modalities is used to treat headache.
Medications
All medicines carry side effects and
can interact with other drugs, supplements and herbal preparations being used.
Because so many people with
CFIDS are sensitive
to even low doses of medications, it’s essential to communicate openly with your
health care provider to assess the possible effects, interactions and trade-offs
associated with medicines. Some drugs used to treat headache can disrupt sleep
while others have sedating effects. The goal should be finding the most
effective medication using a dose with the fewest side effects. Here is an
overview of some of the medicines used for headache:
The drugs most commonly prescribed to treat the pain of a
headache after it’s already started are “triptans” and non-steroidal
anti-inflammatory drugs (NSAIDs). Triptans are among the newest drugs developed
for migraine. They moderate the levels of serotonin and constrict blood vessels
in the brain. Due to the frequent occurrence of nausea with headache, many of
these medications come in a variety of forms, including pill, nasal spray,
suppository and injection. Effectiveness of a given medication may vary based on
the method of delivery (e.g., nasal spray may be more effective than tablet,
even at the same dose).
As with treatment for other forms of pain, there are numerous
analgesic medications often tried in increasing dosages and strengths. Providers
usually begin with over-the-counter NSAIDs, a few of which have been formulated
for migraine, often adding caffeine to boost its effect. Narcotics are generally
reserved for short-term relief of the most treatment-resistant forms of pain.
Concerns about developing tolerance, dependence and addiction to pain-killers
are expressed by many patients and providers; taking these medications only as
directed can minimize the likelihood of these problematic outcomes.
Anticonvulsants, beta-blockers and antidepressants are
frequently used to help prevent headaches by regulating “switches” in the brain
that control certain activities. A few have been approved for use in headache
while others are considered “off-label” treatments. This classification may
impact medical insurance reimbursement; some medical plans will not pay for
medications that are not used as specifically prescribed. If so, consult with
your provider about other covered treatments that may be appropriate
substitutes.
Trigger point injections and Botox have shown some benefit in
treating headache. For tension headache caused by knotted, painful muscles,
periodically shooting a local anesthetic such as lidocaine into the most gnarled
sites can relax the muscle and speed relief. The injection itself is unpleasant,
but can be made less so by alternating heat and ice at the site and stretching
after the immediate pain subsides. Botox, a neurotoxin popular for smoothing
age-related wrinkles, is gaining fans as a treatment for severe chronic
headache. One course of treatment can last three to four months. Cost and
insurance reimbursement vary, as does acceptance of this use of the broadly
promoted “vanity” drug.
Non-medicinal approaches
As indicated on the
treatment chart, there are a vast number of other strategies used to reduce the
impact headache has on function and quality of life. Some are no-cost or
low-cost, such as deep breathing and applying coldheat and ice to the head.
Others, like practicing good sleep hygiene, require more discipline or the help
of a professional, as with acupuncture or physical therapy. Some people choose
to use these strategies as an adjunct to medications, while others use them in
place of a more traditional medical approach.
Either way, the goal should be to reduce the pain associated
with the headache as well as its frequency and duration. Avoiding activities,
environments or substances that trigger headache is essential. Reducing stress
and learning about proper body positioning during periods of rest and work can
help the body care for itself. The headache diary (discussed earlier) can be an
important tool in identifying patterns and triggers and tracking what helps and
what doesn’t.
A bright horizon
Progress in understanding and
treating headache is occurring faster than ever, thanks to recognition of the
significant disability and cost associated with inadequately treated headache
and the large and lucrative market for pharmacologic treatments. About half of
all people with
CFIDS report headache to be a
substantial component of their overall symptom complex — for this segment of the
patient population improved management of headache can lead to better function
and quality of life.
For other PWCs, the strategies used to
treat headache may be beneficial in addressing other symptoms — joint and muscle
pain, impaired concentration, etc. Both conditions involve a highly
individualized approach to treatment, patience and persistence on the part of
patient and provider, and constant assessment of treatment successes and
failures. With luck, the payoff is reduced suffering and disability until more
effective, lasting solutions are available.
Click here to view the
medication overview chart.
Resources:
American Council for Headache
Education
1-856-423-0258
www.achenet.org
National Headache Foundation
1-888-NHF-5552
www.headaches.org
US Headache Consortium
Guidelines for
Managing Acute Migraine Headache
Clinicians are advised:
- To educate migraine patients about their condition and its treatment and
encourage patients to participate in treatment decisions;
- That when patients respond poorly to NSAIDs or combination analgesics such
as aspirin, acetaminophen, and caffeine, migraine-specific agents, such as a
triptan, dihydroergotamine, or ergotamine, should be used;
- That patients who experience nausea and vomiting early in migraine should
be selected to receive non-oral medication formulations;
- That patients who have been refractory to treatment should be considered
for self-administered rescue medications; and
- To avoid causing medication overuse headache, also known as rebound or
drug-induced headache.
Multiple well-designed randomized clinical trials support
recommendation of the following medications:
- Oral combination opiates
- Dihydroergotamine nasal spray
- NSAIDs (oral) and combination analgesics
- Butorphanol nasal spray
- Triptans
American
Academy of Neurology, 2000
“Even my hair hurts…”
In an article published Sept. 4, 2003 in Headache: The Journal of Head and
Face Pain, cutaneous allodynia (CA) is described in detail as a feature of
migraine headache. The paper explores the decades-old observation that patients
avoid hair brushing and touching the scalp, shaving, brushing teeth and wearing
glasses, contact lenses, earrings, or tight clothes during migraine attacks.
This heightened sensitization is also described by people with
CFIDS in the acute phase of the illness and/or
during a relapse.
Research shows that a cascade of complex chemical reactions
occurs in each phase of migraine, and that CA may be responsible for reports of
pain in the head and neck area that frequently extends beyond the “headache”
region. The presence of this symptom in about 75 percent of migraine sufferers
suggests that the pathophysiology of migraine may involve peripheral, central
brainstem and thalamic neurons. Further studies indicate that treatment of CA is
best accomplished by giving abortive drugs (particularly triptans) within 30–60
minutes of the onset of migraine pain. Early intervention ends the attack more
effectively and can help prevent the onset of CA. The same study reported that
later intervention was generally unsuccessful in treating CA once it
starts.
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