12/4/2019 by Share Your Story

How Hard Is It To Live With Migraine Disease

This month, Diane speaks to a close friend about what it is like living with migraine disease, from understanding triggers to what helps and what doesn't.


Living with Migraine Is Hard.

“Oh, it’s only a headache”, “Stop whining you’ll be okay”, “Stop being so glum”, “Snap out of it”; these are just some of the sentiments people with migraines deal with every time they express having an attack. It’s hard lenough iving with migraine and even harder to live with people’s lack of understanding towards their seriousness. It is so frustrating to explain migraines, especially to those who have never had a migraine attack.

CAUSES OF MIGRAINE ATTACKS

Migraine is a severe, painful headache that can be triggered by many factors such as light, stress, loud noises and lack of sleep.  This can sometimes be followed up by tingling in the arms and legs, nausea and vomiting. Migraine can cause severe pain or a pulsating feeling, usually only on one side of the head. The exact reason for migraine disease is not well known but is thought to be due to abnormal activities in the brain caused by a temporary change in nerve signals and blood flow.

LIFE WITH MIGRAINE

I decided to ask someone suffering from migraines some questions so I could more vividly show how it affects lives other than my own. Her name is Barbara, she is from Alexandria, Virginia, and she has been living with migraine for many years.

Diane: Did it ever happen that you couldn’t be present for important moments for your family, colleagues, and friends because of migraine?

Barbara: People who do not suffer from migraine can hardly understand the real impact. I have struggled with them for several years and there have been so many times that I had to cancel plans because I just couldn’t move. I try to make plans around times when I know a migraine is more likely, though they’re not always predictable.

Diane: When my migraines happen, I just can’t do anything at all, or even think about doing anything. Having photophobia or other sensory sensitivity can make people just want to lie at home in a dark, quiet room and pray for the pain to go away. What do you do when that happens?

Barbara: I avoid people, including work, at the time of the attack, because I have trouble communicating and focusing. I also don’t want to be seen as a grouch or mood-killer.

Yes, it gives you a bad feeling knowing that you have miss many happy moments, especially when you need to cancel the plans at the last minute. You feel like you’ve let people down again, even though it’s not your fault. But because of the unbearable pain, lack of concentration, sensory sensitivity…all in all, you’re unable to work and be productive.

Diane: How do you handle these situations at work, especially with your boss, or superiors?

Barbara: Today, it’s hard enough just to be productive. Emails, texts, calls, appointments all make productivity a challenge for everyone. Those living with migraine have to worry about the multiple migraine triggers found in most work environments. Unfortunately, being on high alert creates stress, which itself is a trigger.

I work as a designer and production manager, so I’m often sitting in front of a computer. The blue light from electronic screens is an enormous trigger for headaches generally, so you can imagine how bad it could trigger a migraine. Luckily, my boss and my colleagues are very understanding. I am so thankful for that.

UNDERSTANDING TRIGGERS

You can’t change the nervous system you inherited, but you can do some things to reduce the risk of migraine activation. I keep a diary. That helps me identify which foods or circumstances are causing my attacks.

Every case is different, but my triggers are:

  • My menstrual cycle (somewhere in the middle of the cycle)
  • Physically demanding activities
  • Extreme heat or cold
  • Loud noise
  • Spicy foods (sometimes)
  • Some dark wines
  • Chocolate
  • Sugar

It’s not easy to establish what causes migraines, because it’s usually a combination of several factors. There are times I can eat chocolate and times I can’t.

DO ANY MEDICATIONS OR TREATMENTS HELP?

There are several ways to treat migraine. Sleep is one of the best remedies for me. Some of the over the counter analgesics reduce my pain a little bit. Others help me fall asleep easier.

However, triptans (a class of medicines for headache/migraine) made life much easier for many of us who are living with migraine. I couldn’t function normally without these drugs. Although I’ve heard some patients say that triptans are a ‘miracle cure’, that’s not my experience. Each medicine has its pros and cons and won’t necessarily work the same for different people. Triptans are also very expensive. Though treatments are available, the migraine community needs more affordable access.

I hope that one day, those of us living with migraine in their life can exist as free from pain as everyone else.


Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has been an Diane Talbertadvocate for this disease for over a decade now. Diane has run support groups in the Maryland, DC and Virginia area, is a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with it. She loves being a wife, mother and grandmother.


From the Editor:

Patients Rising is working with a coalition to better understand the needs of migraine patients.

YOU CAN HELP. Email me, Jim, at jsliney@patientsrising.org about the obstacles that keep popping up between you and getting the care you need.

For inspiration, here are a few other articles we’ve published on migraine:

Getting Access to the Migraine Care You Need by neurologist, Dr. Huma Sheikh

How Step Therapy Results in Untreated Migraine by migraine advocate, Eileen Brewer

Women With Migraine: Addressing Discrimination in the Workplace by the editorial staff

 


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