Challenges of living with migraine disease

Challenges - 2014 MHAMBC Day #17

Today’s Blog Post Prompt (alternate): Life with Headache and Migraine is tough. If you were the recipient of a million dollars, what would you do with it?

To understand what I would do with that much money, you have to understand the challenges of living with migraine disease. So much of our awareness efforts focus on the acute symptoms of a migraine attack. As difficult as an attack is, many of us do have options for reducing those symptoms and stopping an attack. We rarely talk about the challenges we face every single day even on relatively good days when we are asymptomatic. I’d like to make the distinction between migraine (a genetic neurological condition with no cure) and migraine attack (the symptoms of pain, nausea, vomiting, light/sound/smell sensitivity, vertigo, visual disturbances, etc.)  Migraine is constant. Attacks may occur as infrequent as a few times a year, or as often as every day.

So here’s an example of an attack-free day in the life of a migraineur.

It’s 7:00 a.m. I am vaguely aware that I am conscious.  Before I even open my eyes I take a quick inventory of my head.  I scan my darkened vision for potential auras, which often appear even with my eyes closed.  I take a deep breath, stretch my arms and legs, and slowly roll out of bed. I turn off the CPAP and remove the mask that prevents me from waking up at 3:00 a.m. with a cluster headache attack or greeting the morning with a migraine.

Before I even try to shower or get dressed, I head for the kitchen.  The dog and cats are patiently waiting for their breakfast. They known the rule — Momma eats first.  I prepare a simple meal of cereal, water, and some fruit.  During breakfast, I update my Pain Log and double-check my morning medicine, making sure I haven’t forgotten one.

  • 2 squirts of generic Flonase in each nostril keeps my eyes from burning. I’ve learned how to expertly administer this medicine so that I barely feel it hit the back of my sinuses. Without those nasty allergy symptoms, I am less likely to experience either a migraine or cluster headache attack.
  • Generic Zyrtec knocks out the remainder of allergy symptoms, further protecting me from the consequences of a major trigger.  It’s lawn mowing day, so I dare not forget either one of these medicines.
  • 5,000 iu of Vitamin D3 helps maintain a healthy immune system and keep my bones strong.
  • 120 mg immediate-release Verapamil is my primary preventive medication.  This dosage addresses both migraine and cluster headache so I can avoid taking multiple medications.  If I forget anything else, this is one pill that I must always take. It works by calming down the blood vessels in my head so they are less reactive to the earlier processes that signal the beginning of an attack. Essentially, I still get attacks, I just don’t feel pain as a result of about half of them.
  • 60 mg extended-release generic Cymbalta is a very expensive price to pay in order to be able to get out of bed each morning with only mild pain and stiffness, as opposed to excruciating pain that requires I take more than 2 hours to get moving.  It also helps keep my serotonin levels on even-keel to prevent another round of depression.  By taking this every day, I am able to manage 2 comorbid conditions (depression and fibromyalgia) that, if left untreated, could make it more difficult to treat migraine.

Affording medications is a one of the biggest challenges we all face.  Out of pocket, it costs me over $200 a month just in prescription medications.  Add to that my insurance premium, deductible, copays, and over-the-counter medicines and it easily tops almost $600 every month.  I try not to think about this because without it I would be too sick to participate in life as much as I do.

After a full glass of water I’m off to the shower.  I choose comfortable clothing that is easy to move in and prepare to start my day.  For a few hours I pay bills, make phone calls, and return emails — taking care of household management.  Sometimes I have trouble focusing and need to take a break.  If my overall pain is manageable, I may start a load of laundry or wash some dishes. If it is a high pain day, I might surf the Internet or watch a TV show.  I dare not sit still too long, or join stiffness will set in and trigger more pain.  If I have time, and my head is clear, I might start writing an article or blog post.

It takes me so long to get going that it’s really hard to stop and eat lunch. Some days I put it off until after 2:00. Some days I snack off an on without ever really stopping for lunch. We don’t keep junk food in the house, so at least I know I’m safe with healthy, trigger-free snacks. I don’t mind drinking water either.  Keeping hydrated is a habit I’ve had to develop over time.

A few times each week I must venture out of the house to run errands or do some shopping.  It is critical to be well-prepared before I leave the house.  I have a mental checklist I run through each time: sunglasses, naratriptan (for migraine), Zomig spray (for clusters), Tiger Balm, water bottle, snacks (if I will be gone long). I face lighting challenges in a lot of stores.  It is common for me to wear my sunglasses even inside if their lighting is harsh or I feel unusually sensitive to light that day. I keep the Tiger Balm handy to block strong smells that might trigger an attack.  I’ve learned to never leave home without each of these items.  I used to take a lot more but have reduced it to only the essentials over time.

Late in the afternoon, I will take my second round of medicine with another glass of water. Remembering to take all this medicine on schedule is just one of the many challenges that migraineurs face. We all develop ways to keep us on track using checklists, alarms, or reminders from others.

  • Another 120 mg immediate-release Verapamil to keep the migraine and cluster attacks away as much as possible.
  • Another 5,000 iu Vitamin D3 to keep my immune system and bones strong.
  • 75 mg Zantac to treat the GERD that has developed as a side effect of so many medications.

Of all the challenges I face, this next one is the most difficult. I think it’s because I really hate to cook anyway. About 4:00 I realize I forgot to prepare anything for dinner.  Everything is frozen or missing. I know my husband will be home soon and wonder what’s for dinner. I beat myself up for not being better prepared and give him an apologetic phone call that usually ends in plans for take-out, sandwiches, or scrounging for leftovers.

After dinner, if I’m not hurting too badly and the weather cooperates, one night every other week I help with mowing the lawn.  It’s good exercise and it feels good to be useful. For so many years I could do nothing to help out because of near daily attacks. It’s nice to have a “job” again.  However, I do have to make sure I take a shower immediately afterwards because my body needs help cooling down quickly to avoid a heat-induced attack as well as rinsing off all that grass pollen to prevent a histamine-induced attack.

Around 10:00 p.m. I take my last round of medicine with another glass of water:

  • A third dose of 120 mg immediate-release Verapamil
  • 2 mg generic Mirapex to control the Restless Leg Syndrome that can keep me awake, disrupting my sleep and triggering an attack.
  • 10 mg Melatonin to regulate my sleep and reduce the risk of being wakened by a cluster attack at 3:00 a.m.

I get ready for bed and double-check the water reservoir in my CPAP humidifier.  I try not to miss a night without it.  Getting treated for sleep apnea was the first step toward better management of both headache disorders.  It was the first time I’d had a positive diagnosis of something that might actually be contributing to all the attacks.  While I had hopes it would eliminate the attacks completely, I am now grateful that I can avoid waking up in the middle of the night in terrible pain.

Just in case one breaks through, I am prepared.  My oxygen tank and O2ptimask stand ready for use beside my bed.  A bottle of water and my abortive medicines are sitting within arm’s reach.  A mini-fridge is stocked with ice packs, Gatorade, water, Sprite, Phenergan (for nausea) and Toradol injections when nothing else works.  A microwave sits on top of the refrigerator and a bucket of assorted heating pads, wraps, and rolls sits on the floor beside it.

Each week I refill my medicine tray and double-check for refills. The challenges of life with migraine continue. I watch the weather, check for pollen counts, thunderstorms, and hot or cold fronts that might spell trouble for my head.  When I shop, I read labels and avoid the aisles with food I know will surely trigger another attack.  My perfume of choice is a mix of distilled water and lavender — the only scent that does not trigger an attack.  I shield my eyes when I am on the road and we pass emergency vehicles as their flashing lights almost always trigger a cluster attack.  I bring my own “safe” foods to potlucks just in case and hold my breath walking in and out of buildings when people are finishing their cigarettes.

Every step I take is carefully calculated to reduce the chances of an attack.  If you’ve been following this blog for very long, you know that attacks still show up a few times each week, despite my best efforts.

Can you count all the challenges I face each day in an effort to avoid even one more day of attacks?

How do you think I might use a million dollars to help ease the burden of these challenges?

What challenges do you face each day because of migraine or another headache disorder?

The 2014 Migraine and Headache Awareness Month, is dedicated to Dreaming of a World without Migraine and Headache Disorders. The 2014 Migraine and Headache Awareness Month Blog Challenge is a project of American Headache & Migraine Association.

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