Migraine Journey

Migraine has been synonymous with my life since I can remember. When I was two years old, I would always “get sick” from car rides, the heat or bright light, feel dizzy and lightheaded, be severely nauseous to the point of vomiting, and have intense stomach aches. My parents just thought it was due to having severe motion sickness and sensitivity to heat. This continued throughout elementary school when I experienced my first classic migraine at eight years old.

There is a family history of migraine on my mother’s side. My grandfather had frequent migraine attacks as did my mother.  Luckily, my mother knew that the headaches I were experiencing were not “normal” and took me to see my pediatrician. I was referred to see a neurologist who ran some tests and confirmed that I did indeed have migraine. I was put on propranolol as a preventive and was on that medication for five years, even though it never worked.

I was still experiencing the same frequent abdominal issues, which I now know was abdominal migraine. Head pain was triggered through exertion (playing during recess), motion sickness (playing on the swings or seesaw and riding in cars), strong odors, specific foods, bright lights and loud noises. It was hard trying to be a normal kid like my friends and cousins when so many things triggered pain and sickness.  I had to learn trigger management early on to try to experience as many normalities as possible as a child.

Most of my life with migraine I was episodic, ranging anywhere from 3-10 migraine attacks per month with 1-2 being extremely severe.  Growing up my doctors told me that I would outgrow them by the time I turned eighteen, so I was super anxious to get to that point so that I would be rid of them.  That never happened.  I remained episodic throughout my late teens and early twenties. 

The progression to becoming chronic started during my last pregnancy.  My first trimester I had a three-month long migraine attack. It would not go away. At the time, I was working full-time, going to school at night, and had a three-year old and a nine-month old at home. Being in pain every single day was exhausting.  I knew that I must have a tumor because this was not normal.  After an MRI that came back clear, the conclusion was that it was a migraine that would not go away due to hormones and the pregnancy.

Thankfully, once I was in my second trimester the migraine ceased but I would still get nasty ones here and there. Something changed with how migraine behaved and showed up in my life.  The attacks slowly became more severe and lasted longer.  In 2002/2003, OTC medications were not helping as much, and I was started on triptans, however, I quickly came to find that I could not tolerate them at all. I outgrew the help of my primary and started seeing a neurologist again.  She had tried me on several different prevention medications which would work for short periods of time before becoming non-effective.

For a while, I gave up on seeing anyone to treat the migraine attacks because I felt at that point it was a futile effort.  But they kept coming and were lasting much longer than 1-2 days at a time.  So, I started seeing another neurologist in 2005.  We tried everything available for me to try.  Either the medications were not effective, or I had an allergy or low-tolerance to them.  Meanwhile, I was progressing to a high-frequency episodic status, with close to 12 attacks a month.

By 2006, I was officially diagnosed with having chronic migraine, experiencing almost 20 migraine days per month.  The frequency and severity of the migraine attacks led to me having daily chronic headache and new daily persistent headache in 2007, so I was basically in a continuous headache/migraine cycle every day.  I was also diagnosed with fibromyalgia the same year. This continued for five years.  Every treatment I pursued failed me, including Botox and nerve blocks.  I tried acupuncture, pain management, massage therapy, chiropractic adjustments, diet changes, etc., etc., etc. 

In 2011, I had the opportunity to test out a peripheral nerve stimulator at my pain management doctor’s office.  I had a two-day trial of the stimulator, which was placed over the supraorbital nerves.  Those were the best 48 hours of my life in a long time.  I was able to go see a movie, walk through the mall, and go to the store all with my pain at a very tolerable level.  I was excited to finally have some tangible relief that wasn’t relying on medications.

After a lengthy appeals process with my insurance company, I was finally able to get one implanted in April 2012.  I had great success with it for the first few months before the migraine started to shift and change where it would occur in to avoid the leads.  Migraine is one smart bastard and doesn’t like it when you try to outsmart it.  That became extremely frustrating and I had to have my programs changed often to try and control the pain.

I was really struggling with being positive and hopeful about ever having less pain in my life.  It appears migraine would never be truly treatable in my case.  The summer of 2012 was extremely difficult.  I spent so much time in the emergency room and urgent care.  Being in constant pain made the depression and anxiety way more severe and chronic.  In September, my antidepressant was increased to the maximum dosage of 375 mg a day and in November, I tried to commit suicide.

I had an extremely severe reaction to being on that high dose, making me suicidal when I wasn’t having any suicidal ideations. That event saved my life because it caused me to look at how I was treating my illnesses very differently.  I started seeing a naturopath because I wanted to start healing my body instead of putting band-aids on the problems.  I stopped taking medications because I didn’t trust them anymore and started a supervised supplement and diet protocol that helped get the fibromyalgia into remission.

The migraine attacks were still over 15 a month but the daily chronic headache and new daily persistent headache went away.  I still had my abortive and rescue medications, but I tried not to use them if I could treat the pain naturally. I felt more in control of my health and my life and it changed my outlook on life.  I eventually felt like I was in a place where I could seek treatments that failed me in the past, so I started getting Botox injections again. They didn’t decrease the frequency, but they did help with the severity and longevity of each attack.

In 2016, I parted ways with my neurologist of eleven years and started seeing my headache specialist, Dr. Rosenberg. He started me on a new prevention protocol that has significantly reduced the severity of the migraine attacks.  Two years later, I am still chronic, but they are way better managed.  I started using guided meditations regularly, using non-medicinal treatments as a first resort as much as possible, and giving myself permission to be okay with not being okay 100% of the time.