My Migraine Story and Migraine Links

The Start

My grandmother and my mother had them; I got them as a teenager. WE ALL HAD/HAVE MIGRAINES. They called them "sick headaches" because of the nausea and vomiting that they would have with them. As a teen my migraines were infrequent. They didn't cramp my style too much. As I got older the pain and the symptoms of migraines got worse. However, my migraines increased in frequency yet every got headaches like mine, right. Wrong answer. I thought I just needed to tough it out but each year it got harder. 

Nursing School 

By my second second year of nursing school I had notice a big change in the patterns of my migraines. I felt horrible and miserable with the migraines. I was getting them during my down times; frankly, I had precious little of that with being married, having 3 children under the age of 6, and a job on nights at the hospital. I had gotten Lyme Disease in 1992, when little was known about the disease. So therefore I thought the migraines were a part of the disease and so did my doctor. 

I suppose I should have been paying more attention to how  the pattern of my headaches had changed prior to this (and it had); however, with three small children and having had rough pregnancies I felt too busy to try to record headache patterns. It wasn't until my third year of nursing school that I fully began to understand my migraines were different than headaches. These headaches also had a hormonal component to them.

Case Manager

By 2006, I had been working for a while as a Nurse Case Manager. That summer I noticed something wasn't "right" with me but I couldn't put my finger on it. My migraines were more frequent and I couldn't stay on top of things they way I use to. However, my Asthma was worse than normal too and it was disrupting my sleep. I had been diagnosed several years prior to this with depression when my health started to get worse; however, my mood was brightening. I told my therapist that I felt "off". I said that I felt like what I assumed one would feel like if they were having mini strokes (TIA's). I didn't connect this to the aftermath of a migraine at this time.

At the very end of September, I was on the phone with a patient while at work. She had had a stroke. It had affected her speech.  As we were getting ready to say goodbye she asked me if I was "OK". when I asked her why she said, "If I didn't know better I would swear you had a stroke. With that I hurried off the phone. I looked in the mirror and saw what appeared to be a left sided droop to my mouth. In actuality, the right side of mouth was paralyzed. I was sent from work to the hospital via ambulance.


At this point, I am a bit vague on some of the details. I believe they called a "code stroke" at the hospital. They sent me for a CAT scan and MRI. No lesions or bleeding on the brain was seen. My The doctors argued over my diagnosis. Some thought I had Bell's palsy, other odd diagnoses were tossed about that I could hear. I was admitted to the hospital for several days and finally the doctor thought I was having a complicated migraine or a migraine varient (see end of page for definitions if needed) and I was sent home (I believe I was still having the same migraine, although it was mild at the time). I was scheduled to follow up with a neurologist.

Because the difficulty speaking had resolved and the paralysis of the mouth had disappeared, I bright and early Monday morning I went back to work as if nothing had happened. My co-workers were shocked to see me back. I attempted to work the week although still wasn't feeling that well. However, I came from a home with a strong work ethic and in nursing school we were taught that, "Nurses don't call in sick, they call in dead". (Nurses as a group are expect to be at work and not call off. There is a high unwritten expectation in the industry that nurses be in good health and to remain in good health to keep and/or apply for a job).

By Friday at lunch time I was not feeling well at all. The edges of my vision made it appear like I was in a dark hall way. Smells, noise, and light assaulted me. I told my boss I was going home sick.  On the way home I ran a red light because I didn't understand that a red light meant stop. I knew I was in trouble when I got on the highway and thought, "Gee there was a red light back there. I was suppose to do something at that light. What was it?"

Nurse Falls Short

I drove straight to the doctor's office. By the time I got there my mouth issue had started again. Now on some details here, once again I am fuzzy. Other details I am clear as a bell.The first one that see me at the office was the Nurse Practitioner. She threw up her hands, tripped over her tongue  and said she didn't know what to do with me (I don't remember if I was seen by her again in the morning or not)

Either on one or both days I was sent home and I wasn't in the position to argue the point. In retrospect as a physician extender she should have consulted with the physician that was there and bought him into the room to see me. I had the migraine all weekend but it had lessened greatly. 

There are times in life with the universe seems to be trying to teach you a lessen, but I can be a bit stubborn at times, so since I was semi-functional on Monday morning I went back to work with the  droopy appearing mouth.


When I got to work, I tried to read but the words didn't make sense; a short sentence I could understand and hold onto the thought but a paragraph ... I couldn't seem to hold the concepts in my head long enough to process what it meant. I couldn't understand what was happening to me. When my boss got in I went to talk to her. It was clear to the both of us I need to go out on short term disability

Although I wasn't shot at dawn blindfold and tied to a post, or executed on the spot, I was fired non the less because I couldn't go back. Initially, I was awarded disability insurance compensation by the company.


What I thought was going to be a short time off from work has turned into a long time off from work.My migraines had affected both short term, working memory permanently. This was evident on the IQ test  (part of the neuropsychological test) my former company made me take. That test is a whole other nightmare). In 2012, I still can't keep track of if I have given myself insulin in the morning if I deviate from a very set routine. I pre-pour my med box for the week. There are many days I check that box to see if I have actually taken my medications. Some days I end up taking too many pills because I confuse which day it actually is. 

I honestly thought I'd be back to work in one to two weeks. However, I was awarded Social Security Disability the first time I applied and I continue to receive it. Social Security Disability is for those whom it is determined can't do any work. My work disability was suppose to be case I could no longer function as a nurse. 


Terminated,  (Bah!)  that word sounds like something that should be emblazoned on a tomb stone.  In the Spring of 2012, my former employer terminated my Disability Insurance Compensation. There is a loophole in their Disability Insurance under Mental Health. They feel my migraines have a mental health component because of my depression. They fail to understand that I am depressed because of my failing health not the other way around. I don't have the energy to appeal the decision yet I feel like I have to in order to get the funds to survive. 


Whether or not I had a migrainous infarction has been a subject of debate. Initially no white matter lesion seen on the MRI. Later, there was a small spot in the area of memory that showed. At the time about 11 months after the initial migraine that put me on disability occurred, a friend showed me this information from Dr Todd Troost. 

When I showed my neurologist, Dr Troost paper he agreed that I had sustained a migrainous infarct (a stroke from a migraine). So that is how I began to explain to my friends what had happened to me. Then my neurologist back pedaled,; I found he never wrote in my chart that he had agreed with Dr Troot's findings in the first place. I still firmly belief I had a stroke from a migraine that has caused my cognitive impairment, especially in light of the latter MRI that had a small but distinct spot on it in the area of memory. 

According to E-Medicine "Migraine variant (MV) or migraine equivalent is the term applied to migraine, which exhibits itself in a form other than head pain. MV is characterized by paroxysmal episodes of prolonged visual auras; atypical sensory, motor, or visual aura; confusion; dysarthria; focal neurologic deficits; or gastrointestinal manifestations or other constitutional symptoms with or without a headache". And a migraine with an aura usually lasts up to 30 minutes. "In rare cases, the aura could be prolonged, lasting up to 60 minutes, raising concerns of possible stroke".

Complicated Migraines are a horse or should I say migraine of a different color. The same article in E-Medicine describes all the various types of complicated migraines. "Complications of migraine include chronic migraine, status migrainous, persistent aura without infarction (stroke)migrainous infarctionand migraine-triggered seizure. Complicated migraines are rare, accounting for less than 1% of total patients with migraine. " (Yippee, I'm a rare bird..I'd settle for well done. Actually, I just want to be well.) However, according to Dr Todd Troost not all migrainous infarctions show on an MRI. This page in his web site deals directly with migrainous infarctions and prolonged migraines with auras: 


I started to compile a list of helpful migraine links. I had over half of the ones listed together when I found a more complete list at Chronic Migraine Warrior. Her's were even alphabetized; this a task which I loath so I have copied and pasted her list below. If you haven't discovered her fantastic blog it is worth a visit.

Migraine Links

Alliance for Headache Disorders Advocacy 
American Academy of Neurology
American Chronic Pain Association  
American Headache Society 
American Migraine Foundation
American Pain Society 
Headache Impact Test 
Help for Headaches and Migraine Disease 
International Headache Classification (ICHD-II)
International Headache Society
Migraine Disease 
Migraine Research Foundation 
MigraineCast (podcast) 
My Migraine Connection 
National Headache Foundation 
National Migraine Association 
Relieve Migraine Headache
WebMD - Migraine 
World Headache Alliance

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