Chronic Disease Burden of Daily Migraines

Disabling migraines are a unique health condition. The impairment is not obvious like it is with other illnesses. Many patients continue to work while fighting through their headaches, so it may not be apparent that they are experiencing pain at any given moment. This illustrates how chronic daily migraines differ from episodic headaches that occur once or twice a month.

You should not ask a yes/no question like “Are you having a headache right now?” Instead, ask where they are on a scale of 1 to 10. Their symptoms are often vague, and they may not always know whether they are currently having a headache. There is an extensive list of nonspecific symptoms that can accompany headaches - symptoms that don’t necessarily seem related. Patients often live in prodromal or post-dromal phases for days, with headaches interspersed in between. Abortive medications may dull symptoms but often do not break the pain cycle.

Headaches can change your personality, making you isolated and withdrawn. Loud, bright environments are off-limits for much of the day. You also receive a lot of unsolicited advice:

• “Why don’t you exercise regularly?”
• “You need to cut out caffeine completely.”
• “Go to bed and wake up early - keep a rigid schedule.”

Professional Impact

You gradually stop believing in yourself professionally, as you can barely get through your daily duties. Every kind of stimulus is taxing: light, sound, music, sunlight, driving to and from work. Everything seems loud and blurry. Your interpersonal skills suffer, tasks take longer, and you function at an average level at best. You wish you could take breaks frequently and lie down every two hours.

Medication side effects add to the burden. Imitrex works well for acute attacks but can cause chest tightness, muscle aches, and severe fatigue. Your scalp becomes extremely sensitive, and even touching your hair hurts. It is difficult to speak when you have dry mouth around the clock.

Family and Emotional Impact

Family members try to be supportive but do not always understand what you are going through. You feel guilty that you can’t fully meet your children’s expectations. They miss the enthusiastic parent you wish you could be. Some days, you just don’t have the energy to play soccer with your son. Your daughter tells you, “Dad, you need to learn patience.” Eventually, your life is built around your headaches; how you react becomes your personality.

You reduce alcohol intake, maintain rigid sleep habits, and limit caffeine. You usually cannot restrict carbohydrates because short-term sugar intake sometimes helps with headaches.

Work-from-home is often the only viable option. You can rest for a few minutes with your eyes closed. You avoid driving in city traffic, sunlight, and the stress of aggressive drivers. Remote work also limits exposure to sensory triggers.

Treatment Journey

If you have infrequent migraines, you start with medications that stop headaches when they occur - abortive agents. These include acetaminophen, ibuprofen, Excedrin, or aspirin. If ineffective, your doctor may prescribe Fioricet or Imitrex. Using these medications more than two to three times per week can lead to rebound headaches, where the medications themselves cause more headaches. These require gradual tapering.

If you need abortive medications too often, preventive therapy is introduced - such as propranolol or amitriptyline. If one medication doesn’t work, more may be added. At that point, you are usually referred to a neurologist or headache specialist.

I tried Topamax but disliked the side effects. I experienced severe neuropathy (pins and needles in my feet), cognitive impairment, memory loss, spacing out, and considerable hair loss.

All these medications have a variety of side effects that can be as bothersome as the headaches themselves.

I have tried every preventive medication available. I have used all injectable CGRP inhibitors (Aimovig, Ajovy, Emgality, and Vyepti). They worked initially but then plateaued, and my headaches returned. Insurance would not cover both CGRP injectables and CGRP pills at the same time if I was also receiving Botox, so I had to discontinue some. All CGRP medications - injectable or oral - caused severe constipation.

Each new medication or dosage change brought temporary improvement, but it never lasted.

I typically spend 27 headache days per month, defined as having at least four hours of identifiable symptoms. For the remainder of the day, I alternate between prodromal and postdromal symptoms.

I am currently on oral CGRP inhibitors. Qulipta can be used for both acute and preventive treatment. Ubrelvy is used only for acute attacks and can be repeated after two hours.

Propranolol may cause dizziness, low heart rate, and fatigue. Amitriptyline is an older medication that is hard to titrate. It can cause extreme drowsiness, mood swings, daily fatigue, severe dry mouth, constipation, and even night terrors - because it is anticholinergic.

Botox for headaches involves receiving 34 injections in the scalp and neck. They are not enjoyable, but the hope of relief makes them worthwhile.

You may simultaneously be on Botox + amitriptyline + propranolol + Qulipta for prevention, and rotate among the following for acute treatment:

• Diclofenac (max twice weekly; NSAID → long-term kidney concerns)
• Sumatriptan (no more than three times weekly → significant side effects)
• Ubrelvy (no rebound headaches; usable daily in theory, but insurance limits quantity and guidelines recommend no more than 8 days/month)
• Ergots (twice weekly; often unavailable)

Zofran can be used for nausea, though it tastes terrible. Prednisone may be used for acute attacks with variable benefit. Mannitol can help with weather-related headaches; it is a diuretic and may cause dehydration.

TENS devices like Cefaly may be worth trying. Some patients are hospitalized for IV ergots three times a day for eight doses, which may break the headache cycle; however, long-term benefit is unclear, and hospitalization can leave you with a $2,500 bill.

If Botox is insufficient, you can receive cranial nerve blocks between Botox cycles. These injections are extremely painful.