Weighing the risks
Migraine patients must often weigh the potential benefits of a given treatment against the potential side effects. It's a perpetual balancing act to find the right combination of effectiveness and tolerable side effects. It helps to have realistic expectations. It also helps when we are fully informed.
I hear from many patients that their doctors do not disclose the known side effects of a medication when prescribing a new treatment. Some have even had close calls because they did not know what to look for. This is inexcusable. While no one can know exactly how a person might respond to a certain treatment, there are migraine treatments with common side effects. Some are minor, while others can be life-threatening. Every patient has the right to know the most common side effects of each prescribed medication.
I understand that doctors don't want to alarm patients unnecessarily or create a self-fulfilling prophecy. However, failure to disclose the true risks of treatment isn't the way to build trust. A doctor who won't tell me the truth about a recommended treatment is a doctor who will lose my trust and my business. I spend way too much time consulting with doctors to waste time with someone I can't trust.
Common migraine treatments and their potential side effects:
Triptans: nausea, tightness of chest, neck, or jaw, rapid heart rate, fatigue, numbness or tingling, burning sensation of the skin10
NSAIDs: stomach irritation, heartburn, diarrhea, fluid retention, kidney or liver impairment (rare), increased risk of tinnitus1
Ergotamines: drowsiness, headache (during withdrawal), vertigo, dystonia, nausea, vomiting, abdominal pain, numbness and tingling of fingers and toes, muscle pain in arms and legs, weakness in the legs, cardiovascular side effects (hypertension, tachycardia, bradycardia, chest pain, heart valve disease) 3
Valproic acid, divalproex sodium, sodium valproate: tiredness, dizziness, weight gain, tremor, hair loss, skin rash, nausea, vomiting, GI distress, pancreatitis, liver failure, thrombocytopenia, altered metabolism of sex hormones
Topamax: paresthesia, cognitive slowing, tiredness, psychomotor slowing, drowsiness, word finding difficulties, poor memory and concentration, weight loss, kidney stones, glaucoma
Gabapentin: dizziness, tremor, somnolence, nausea, ataxia
Zonisamide: therapeutic action is similar to Topamax with a lower incidence of side effects
Tricyclics: Dry mouth, blurred vision, constipation, urinary retention, drowsiness, increased appetite, orthostatic hypotension, increased sweating, disorientation or confusion, tremor, increased or irregular heart rate, increase in seizures (in patients who already have seizures), sexual dysfunction5
SSRIs: nausea, nervousness, agitation, restlessness, dizziness, sexual dysfunction, drowsiness, insomnia, weight gain or loss, headache, dry mouth, vomiting, diarrhea, muscle aches, leg cramps, hallucinations, swelling of legs and feet6
SNRIs: nausea, dry mouth, dizziness, excessive sweating, tiredness, difficulty urinating, anxiety or agitation, constipation, insomnia, sexual dysfunction, headache, loss of appetite7
MAOIs: dry mouth, nausea, diarrhea, constipation, headache, drowsiness, insomnia, skin reaction, dizziness, involuntary muscle jerking, low blood pressure, sexual dysfunction, sleep disturbances, weight gain, muscle aches, tingling or numbness, difficulty urinating4
Calcium Channel Blockers: constipation, headache, low blood pressure, rapid heart rate, dizziness, rash, fatigue, flushing, nausea, swelling of feet and legs9
Beta Blockers: fatigue, cold hands, headache, upset stomach, constipation, diarrhea, dizziness, shortness of breath, insomnia, low sex drive, depressive mood8
Not everyone will experience every side effect. Some patients will experience rare or unique side effects. The important thing to remember is to keep communicating with your doctor. Together you can decide the right mix of benefits and risks that work for you. It takes mutual trust and patience to discover what works.
It took many years of serious work with my doctor to discover that anti-seizure medicines didn't work and made me too sleepy, anti-depressants and beta blockers were tolerable but ineffective. Calcium channel blockers worked for cluster headaches, but not so well for migraine. Only Botox worked to stop the near-daily onslaught of migraine attacks. I'm lucky.
Some of you are probably still trying to find just the right treatments. Others may be discouraged, and feel like giving up.
Few patients understand what to expect from a given treatment. The results are typically more subtle and modest than we'd like. Treatment takes longer than we expect to have full effect. And side effects can lessen or worsen over time. The harsh reality about current migraine treatments is that they don't work nearly as well as we hope. It's all about the numbers.
50% is the "magic" number. A treatment is considered successful if there is at least a 50% reduction in either the frequency or severity of attacks. For most treatments to be considered effective, at least 50% of patients who use it will get a 50% reduction in either frequency or severity. For an episodic migraineur with 4 attacks per month, an effective treatment results in only 2 attacks per month. That sounds wonderful. Now let's think about chronic migraine. A patient with 15 or more headache days in a month might see a 50% reduction in severity, improved responsiveness to acute treatment, but still experience just as many attacks. Patients who experience chronic daily headache might see a 50% reduction in frequency, but they are still facing down migraine attacks more than half the time.
90 days is the minimum time a treatment should be used before deciding it isn't effective. But there's a catch. Let's say your doctor starts you on 25 mg of Topamax. That's a medication commonly used to prevent migraine. The maximum effective dose can be 200 mg or more daily. So unless your doctor gives you specific instructions on how to titrate up safely, you might be faced with 90 days at each dose change. If you increase by 25 mg every 90 days, it might take almost two years to determine if Topamax is the right treatment for you. Patience and persistence are essential to endure medication trials.
Even though most of my family and friends are well educated about migraine, they still struggle to understand why I keep getting attacks. It isn't unusual to hear, "I thought you said Botox was working," when someone finds out I am having a migraine attack.
It is human nature to believe that an effective medicine is one that eliminates all symptoms. Living with an incurable illness doesn't afford us that luxury. Medicines and other treatments can reduce the impact of symptoms, but certainly won't eliminate them all. Choosing a migraine treatment plan is a never-ending series of trade-offs.
Can you tell when a migraine attack is coming?