My Migraine Life
I'm opening a window into my life of chronic migraines to, not only educate, but to let other migraineurs know that they are not alone!
"The brain produces an outsize reaction to the trigger, its electrical system (mis)firing on all cylinders. This electrical activity causes a change in blood flow to the brain, which in turn affects the brain's nerves, causing pain."
Things I experience with migraine disease:
- Severe throbbing head pain (sometimes, both sides)
- Jolting severe ice pick pain (could present anywhere in my head)
- Allodynia: pain from stimuli which is normally not painful
(My hair hurts!)
- Paresthesia: numbness & tingling of hands/fingers
- Photophobia: sensitivity to any light
- Phonophobia: sensitivity to sounds
- Osmophobia: sensitivity to smells
- Auditory & olfactory hallucinations: hearing & smelling sounds & odors that are not present
- Alice in Wonderland Syndrome: changes in the way I perceive sizes & distances of objects (I can literally watch a wall breathe.)
- Phantom taste (I taste metal in my mouth.)
- Dysphonia: impairment of speech (cannot find the appropriate words) We call this: Migraine Brain.
- Aphasia: decreased ability to understand language
- Feeling hot/cold
- Ataxia: decreased/poor co-ordination
- Visual disturbances: flashing zigzags, blind spots, & blurriness
- Nausea & Vomiting
- Increased yawning
- Decreased cognition & concentration
- Sinus inflammation
- Altered perception of all stimuli (everything)
- Cephalalgiaphobia (the fear and anticipation of the next migraine attack)
- Muscle stiffness
- Crazy cravings
- Severe Fatigue
- Loss of patience
- Loss of empathy
- Depersonalization: feeling "outside" of oneself
- Suicidal thoughts: due to severe head pain and all the other symptoms. (These are fleeting thoughts, not a plan.)
I have at least 10 of the above symptoms with each migraine and sometimes all of them during the course of an extremely bad one. So, when someone says, "Oh! It's just a headache," I literally feel a homicidal rage! That statement is as ridiculous to me as telling a cancer patient that "It's just cancer."
Migraine is a neurological disease. It is debilitating. 39 million people out of 332,524,270 in the USA suffer from migraine, which is over 11% of our population, of which approximately 75% are females. The WHO classifies migraine as the 6th most disabling disease worldwide.
My first signs of migraine
The first "sick" headache I experienced was at 5 or 6 years old. These were few and far between. Once puberty hit, at around 13, migraines were much more frequent. Here's what the doctors said from the time I was 13 through 18:
- Menstrual problems
- A way to get out of school
- My imagination
Yup! What utter nonsense!
In my early 20's, I was X-rayed and CT Scanned so much, that I should truly glow in the dark. There is NO definitive test for migraine disease. That means they must test you and rule out any other disease process known to man. A lot of doctors and a multitude of tests. Costly and time-consuming. Interesting info: in all my travels throughout my lifetime, I have only met TWO doctors with migraine disease.
My migraines went "chronic" in 1997. That means 15 or more migraine days per month. This doesn't even include the day before when symptoms are high or the 2 to 3 days for the migraine to completely resolve.
Why I won't try new meds
Then, the medications. All of the negative side effects and/or allergies. All of the missed work and family events can drop you into the deepest, darkest spinning depression. My son is 21 & I feel I've missed 3/4's of his life. He's had migraines since he was 6. Just imagine the massive guilt I feel as migraines, in my family, are hereditary.
So, now, at 61, I'm quite hesitant to try any new "cutting edge" medications or procedures. Not that I don't want to be cured. A cure for migraine is only a dream. Frankly, there is no cure, only lessening of symptoms. It's a matter of, "Do I want those horrendous side effects along with all of my above symptoms?" Nope. Hard pass right now.
I have tried a few CGRPs. They gave me excruciating ice pick pain lasting up to 30 minutes and absolutely did NOT work. The risks outweigh any benefits. Also, I'm signed up for any migraine treatment "trials" available. Due to age or having pain for up to 20 days out of each month or other medical issues, I've never been eligible to participate in any clinical trial. The fact that I've never been included in a drug trial should be apparent to everyone that the manufacturer of the drugs being tested knows their newest medication will NOT work for patients like me.
I really try to be gracious when told of "cures" by those who have never had even a headache.
Migraines increase the risks of brain lesions, cardiovascular events, stroke, & aneurysms.
To fellow migraineurs, don't lose hope. I haven't.
My dark room: