Patient Recently Punted — My Quest for the Migraine-Free End Zone :)
Last updated: November 2021
Here’s an off-the-cuff summary of the many paths, experiences, and thousands of dollars, time, and tears I have spent/shed through the years. (I’m typically a very happy, positive person, who feels very blessed in life…but not during a migraine attack…)
In no particular order: Countless family doctor visits; over 5 neurologists; ob/gyn on and off daily hormones; ob/gyn suppressing menses; tried most every preventive treatment; botox at derm years ago; avoiding caffeine; drinking caffeine; over 5 chiropractors; homeopath/supplements; cranial sacral; massage therapy; acupuncture; testing for food allergies; sinuses checked; trying supplements on my own; gluten free and elimination diets; waited 8 months(!) to see a specialist at a teaching hospital; contacted another famous headache center, and was told they are “fee for service” and don’t take insurance; signed up for intermittent FMLOA at work so I wouldn’t have to use all time off on the disease; went to work once with a severe headache and ended up throwing up in the trash can in a meeting; rubbed my head so hard during an attack that I accidentally bruised it; didn’t recognize the pained person looking back in the mirror during a severe attack; have taken a taxi to and from doctor; considered the location of my house near doctors offices and hospital; worried about business travel and travel abroad; started a migraine while flying; thought about moving to another city for work, but was concerned how difficult it would be to find good care; laid in the back of a car on a 24 hour drive with a migraine, lying in my friends lap, stopping for vomit breaks; have had friends and neighbors drive me to doctors appts and E.R.; as an inexperienced young woman travelling for business, missed a flight on a day trip and was stranded overnight-had to have an airport person go to the pharmacy and get my prescription when a migraine ensued; had a conversation with a fellow sufferer where we agreed if we could have our pinky amputated and never have another migraine, we would DO it!!! WHEW!!
History: I grew up knowing “Mom has bad headaches”. I have early memories of her, curled up on the couch with a washcloth over her eyes/head, lying very still. Likewise were the stories about grandpa — - a university professor, he even had to cancel classes from time to time. Per family lore, his biggest unkind run-in was where a dinner was being given in his honor by a co-faculty member. He suffered a super bad migraine that day, and grandma had to call the organizer and cancel. The person said grandpa was weak and unappreciative..how could it be that bad? etc. I just can’t imagine! Thank goodness we have more knowledge of the disease these days, but we all know unfortunately our interactions with people can be similarly challenging…
I don’t remember when I experienced my first migraine, but I came across a diary from my childhood (pre-teen) and an entry simply said “Had bad headache yesterday, missed the entire day”. Decades later, that still occurs, but I am hopefully and keep trying. Growing up, it was “accepted” that they ran in the family ..since Mom, and grandpa, had them, I had simply inherited them. I don’t remember ever seeing a doctor for them, or how much pain I was in as a child.
My first real memories of dealing with the migraines were in college. I’d have maybe 2 — 4 a school year, and would lie in my room in the dark. A med that seemed to work back then was 4 way Cold Tablets. After college, my sister and I worked for the same company and raided the medicine tin for “Zee Pain tabs”. My sister also told me she had had success with Excedrin (this was long before it was marketed as Excedrin migraine) and I always had it on hand.
In my late 20s-30s the migraines became more frequent, and my family doctor gave me the imitrex injection (new at the time) in the office. Being needle-phobic since childhood, I had to have a friend drive over and inject me for a long while…until I could do it myself while looking away!! but it was worth it — LIFE CHANGING! — reducing 1 — 2 days of missing life, to a few hours and feeling groggy. A variety of preventives were also tried, but the side affects were not worth the 1 headache a month, even though it was a doozey.
In my 30s the issue was continual concern over running out of meds because the insurance company had limits. I found a neuro that gave generous samples…made sure to renew scripts ASAP even though I had meds, to “stock pile” in case I had a string of bad days. Even though the imitrex typically worked, sometimes it would not, and the level of pain was awful. At times I would hear whimpering as I was trying to rest, and realized it was me! The family doctor suggested trying an injection of demoral and compazine for the severe headaches. I hated relying on family members and friends for a ride, and the vomiting in a bag in the car, but atleast it enabled me to sleep for a good 5 hours.
The twist in my story was starting 2 years ago now in my 40s I had 3 ER visits with heart palpitations and each time had taken sumatriptan. The first episode was so extremely scary that I thought “this is it” and called 911 because it felt like my heart was being pumped up with a bicycle pump and would explode. (Humorously enough, the discharge papers from the E.R. said Heart palps are not typically fatal, but are often very scary. (uh, YEAH!!) So, the last 2 years has been filled with reluctantly taking maxalt (and worrying my heart will start racing from that med!) and going to the family doctor. Now I’m seeing a new neuro and scheduled to see a headache specialist and hope we can identify a way to improve my story. At the same time, the family practice I have been going to for over 20 years (last 2 years more frequent since no imitrex) says they can no longer do the rescue steps for the severe attacks, because “the Neurologist needs to coordinate my care”. I’m not sure now what I will do for an extreme attack “next time” other than the E.R. which is super expensive. (Learned there is an urgent care center nearby, so maybe will try that.) Thankfully the new neuro was very frank with me…he said: “sometimes the family practice will be jerks, and will punt the patient when a new specialist is seen”. While I am disappointed in my family practice, I realize they decide their care standards…. but I am left with “how is this helping me, the patient?” With a severe attack, the E.R. is 5 times more expensive…hours and hours to wait…. and you just don’t know who you will get” (Example is last time they blew a vein with the IV….a nice bruise that lasted a full month.)
So, there’s that saying “when one door closes another opens…” I am hoping that even though I have been recently punted, that I will ‘run it back’ quickly with the help of these new doctors…to that migraine-free end zone!
Are the family and friends you will be seeing this holiday season understanding about migraine?