Friday, October 7, 2011

Scariest Migraine Attack Ever: What I Didn't Know

The theme for this month's Headache and Migraine Carnival is "Scary Migraine Episodes: What is the scariest migraine attack you've ever suffered or witnessed?"

The scariest Migraine attack I've ever suffered was my very first severe Migraine attack. As you will read, it is not the scariest because it was the worst one I have had, but because at the time I did not know what was happening to me or what to do about it.

I have had headaches most of my life. I have vivid memories of taking much more Advil than any teen should take in one day. I had chronic sinusitis (sinus headaches) as a late teen and young adult. Then I started having a chronic daily headache that was triggered by the high levels of mold that were in my workplace.

October 26, 2005 was field trip day for the self-contained special education class I was working in.
I was working as a speech language pathologist in an early education center for children with varying levels of disability. I usually rode the bus with the class on field trips, but that day I opted to drive myself since I was not feeling well. As we wandered through the pumpkin farm's activity area, I was a bit disconnected and not present most of the morning. By the time the children were loading on the bus to go back to the school late morning, I was feeling so ill I knew I needed to get home-and fast.

I remember the drive as if it were yesterday. I was so dizzy that I was having trouble concentrating on the road and certainly not feeling myself. On the thirty minute trip to my apartment, I was so scared that I called George, who I was newly engaged to, but got his voice mail.

Climbing the stairs to my second floor apartment felt like I was climbing a mountain. I barely made it over the threshold of my doorway when I sank to the ground. I crawled to the nearby bathroom and after I vomited, I lay face down on the olive green pile rug. And then the pain came with such a punch of intensity that I thought I was dying.  I heard the phone ring, but I could not move. I couldn't make out the words, but I heard George's voice and remember thinking to myself that he was going to find me dead.

The next days and months were terrifying. I went to the immediate care center which led to the ER, which led to my PCP's office which led to being hospitalized for dehydration and severe headache (they were not calling it Migraine at the time), which led to a neurologist who did testing and gave me a diagnosis that was not Migraine. I was given so many meds that did not help and some that made us think I was going crazy-literarally. The anti-depressants I was put on for pain caused me to be suicidal. I was frequently attempting to jump over our house's balcony and saved only by George holding me down or friends he had called over to help him by sitting with us. One friend told me that at one point, I was referring to myself in the third person and talking as if I were satan saying I was going to kill "Kelly." It wasn't until I saw a psychiatrist that said "You are not crazy. It is the medication." I stopped the medication and the mental instability/suicidal issues stopped as well. Yes, I'd say that was traumatic and scary for all involved!

Looking back, what I have gone through in the years since then has been much worse and much more horrific. But this time in my life between October 2005 and February 2006 was scary because I did not know what was happening to me or what to do about it. I had no compass or reliable guidance. Everything I did led me navigating a path of confusion and pain.

After three months of seeing me, the neurologist I was seeing told George that he thought I was just depressed and it was all in my head. The nuerologist had me on Esgic Plus around the clock for months. I still have a script from him that says for quantity #100. What was he thinking? Of course any person with headache or Migraine tendencies would immediately be rebounding. And I was. I keep the script to remind me not to implicitly trust doctors, but to question and research and get multiple opinions. 

Eventually on February 8, 2006, I had to leave work mid-day after a parent meeting. I went to the emergency room and my neurologist prescribed a VERY strong narcotic. The time between February 8th and February 17th (when I saw a headache specialist for the first time and was admitted to a hospital inpatient headache unit) was the scariest for George and for me. I laid in bed every day in agony. We did not know what to do. Like a good patient, I took medication as prescribed and of course as it was a narcotic, the relief wore off. As I was unfamiliar with narcotics, I did not understand why and so I suffered tremendously.  After going to the ER multiple times and calling my neurologist multiple times, I was lost as to what to do.

Without sharing my opinion, I recently asked George what the scariest Migraine he's seen me go through was and he referred to that time in February 2006. Here is what he says about the time.
It was scary because it had been going so long and it had gotten so bad and we were at our wits end. Kelly was on percocet and trying so hard and I would come home from work and see this desperate constantly horrified look in her eyes because she was in constant pain. The ER couldn't do anything and neurologist didn't do anything and we didn't know what to do. It was horrible.

The doctors were not telling me what was wrong and the treatment I was given was not helping and probably making things worse. The neurologist never told me about Migraines. We certainly did not know about Migraine/headache specialists, Status Migraine or chronic daily headache or preventatives or abortives or rescue medications or rebound headache or IV treatment for Migraine and the list could go on and on!

It is hard to remember the mindset I had back then...to remember how it was and how scared we were because Migraine disease has since become a daily part of my life and I know so much about Migraine disease now. But remembering the terror we had keeps pushing me to keep reading, keep researching, keep questioning so that I keep myself educated and do not find myself in that situation again.

If you are looking for somewhere reliable to learn more about Migraine Disease, a couple of great places to start are Migraine.com and My Migraine Connection.

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