Diagnosis: From Chronic Migraines to Occipital Neuralgia

My Migraine Story:

How do you possibly put 8.5 years of your life into a quick blog post? The healthcare providers, the medications, the treatments, the disappointments? I don’t remember ever having headaches as a kid. My first few years of university I remember being exhausted during exam week or after those nights of only a few hours of sleep, but never in pain. 

In November 2010 while in my first year of nursing school, I was in my first acute care clinical and for some reason my nursing coordinator and I didn’t get along. Long story short, it was a tough and stressful time in my life.  One evening I developed a sudden, overwhelming pain to my head that was the worst pain I have ever experienced.  My parents found me in a fetal position on the floor and rushed me to emergency as a family member had a cerebral aneurysm at the age of 25. This was the moment it all started. I haven’t had a day, let alone an hour without pain since then. I was only 23.

From there I had regular brain CT scans, MRIs and Angiograms a few times a year as they discovered a Developmental Venous Anomaly on my right parietal lobe and wanted to watch it over time to see if it was leaking and if that was the cause of my chronic pain.  After a few years of this they decided the anomaly just happens to be there and instead I was diagnosed with Chronic Migraines and told the only thing I could do was continue the medication my neurologist prescribed me. 

I was referred to my first neurologist immediately after my sudden incident. He put me on Topiramate in December 2010 which is a medication to prevent headaches. These did nothing, so he continued to up the dose. I remember sitting in class the days I had increased my dose and losing feeling in my chin and tongue, the same tingling feeling you have after the dentist. I was having two 72 hour 7+/10 pain level migraines per week, with 1 day “off” in between each migraine where I felt incredibly exhausted and hungover. Then it would all start again. As you can imagine, being in the SDEO Nursing Program, this was incredibly difficult and I didn’t have time to lay in bed. Instead I was forced to develop a tolerance for the pain very quickly, put on a smiling face, and power through. As my time on migraine medications increased, so did the side effects. I lost so much weight, I was down to 100lbs and people were asking if I was ill. I used to have an incredible photographic memory, but I could not retain anything. In clinicals I would study a medication I was giving a patient, and then when I had the same patient the next day (and even the day after that) I had to re-look up what the medication was for as I couldn’t remember. This was extremely frustrating for me as I used to be able to retain anything and everything.  I also lost my ability to recall words. It became a joke with my close friends when I would say “look at that highlighter” when wanting someone to look at a licence plate, or “Its on the pencil case” when referring to something I set on the piano bench. We got a good laugh out of it, but in reality, it was very terrifying for me. I lost my ability to hold proper conversations as I was self conscious of not knowing what word to use, and therefore would stop talking mid sentence. Again, this isn’t ideal during nursing school when you’re expected to do lots of presentations (let me take this time to apologize to classmates during projects. Especially to my Community group – Jen, Carly, etc, as this was my absolute lowest point). To be honest, I actually lost about two years of my life to memory loss. There are a few years in my mid-20s that I am not sure what exactly happened. And then of course there was the pain. The incredible pain that was always there. These huge doses of medications I was on with their side effects just added to it, they didn’t relieve any pain at all.

Finally, I found a new neurologist in Saskatoon in 2013. She looked at my chart and gasped at the dose of Topirimate I was on. She said she had two patients on this dose, but both were men over 300lbs. She immediately started to wean me off, and started me on a few new options. Unfortunately, these never helped the pain either, and my side effects from those Topiramate doses ended up taking 5+ years to begin to decrease. Still to this day I am struggling to gain back what I lost.  I eventually just quit going to neurologist appointments as they weren’t making a difference in my life. By this time, I was an RN working, and newly married. It was so frustrating because I really enjoyed working, but Shaun would pick me up after every shift and I would collapse in the vehicle like a drunk. When my migraines got bad, I had slurred speech, blurry vision, weakness in my lower extremities, plus the usual dizziness, nausea, sensitivity to sound, sensitivity to light, etc.  I would get home, Shaun would run me a scalding bath that made my skin hurt to take a bit of the focus off my head, take a migraine “rescue” medication and a Gravol, and lay in the bathtub until I nearly passed out and then would crawl into bed and repeat this for the next two years.

Shaun got a job offer in Houston and we moved our lives there in January of 2015. My migraines immediately got a little bit better. I think it was because at the time I wasn't able to work in the United States, and as a result my body wasn't fighting the 12+ hour shifts, night shifts, lack of routine, poor posture, missed meals, dehydration, or the stress that being a nurse entails. I was still having pain 24/7, but it wasn’t as severe. My 72 hour migraines decreased to only about 4 or 5 a month.  This obviously seems like hell, but compared to the 6 days a week I was having debilitating migraines previously, I was living in bliss. 

We decided we wanted to start a family, so I weaned off all the migraine medications that I was still taking daily. It made no difference being off these meds. Kinley came in January 2016, and then Emmett in May 2018. The amount or severity of my headaches didn’t change when or when not pregnant. The only time I saw a neurologist over these years was prior to Kinley’s birth as it was important to have a neurologist available and knowledgeable about my Development Venous Anomaly as there was a chance it could rupture during delivery. By this time my constant pain was having more of an impact on my life as the demands of a parent (with no family nearby for support) made it impossible for me to rest when chasing around two little ones. I never took any prescription or over the counter pain medications because I was either pregnant or breastfeeding, plus they never provided any relief anyways. So I would just buckle up and count down the minutes until the attack ended.  I was however continuing to try different therapies (that is it's own blog post), going for massages regularly, and seeing my chiropractor every week. 

When we moved closer to downtown Houston in spring of 2017, there was a Migraine Center I drove by a few times so decided there was no harm in checking it out. Turns out he wasn’t a neurologist, but a hand and microvascular surgeon.   He told me I had something called Occipital Neuralgia and from him I tried nerve blocks which cost a fair bit and only worked for a few days. From here I was referred to a Pain Management Specialist who would perform basically a nerve block under sedation that could give me up to a few months of pain relief. I didn’t end up receiving this treatment because I became pregnant with Emmett.

In the fall of 2018, I was on my neighborhood Facebook page and someone requested a recommendation for a neurologist who specialized in migraines. I saw the same name pop up over and over. Pamela Blake. Pamela Blake. I decided to make an appointment. It took me almost 3 months to get a consult with her (which is crazy for Houston, where you can get into a new doctor within a week or two). I saw her in December 2018 for the first time. For the consult she spent an hour and a half asking me different questions. Where was my pain? How did it travel? Did I ever get ringing in my ears? Did I get an aura? Was this a sudden onset or something I had as a child? Was the pain constant or intermittent? Had I ever been abused or in a motor vehicle accident? Did I ever have whiplash or a head injury? Did it hurt me to get my hair washed in the salon when laying back in the basin? (Yes!!!!!). Then she did a few tests including gently pressing on different parts of my head to see if it caused any pain. After her assessment, she told me that I may experience migraines as well, but my main issue is Occipital Neuralgia, and until that is under control we won’t be able to see if I too have migraines or if my migraine-type pain is actually a result of a flare up of the Occipital Neuralgia. So after eight years, a new diagnosis: Occipital Neuralgia.  I had never heard of this before (turns out I had in 2017 at the Migraine Center, but he never really explained to me what it was). Dr. Blake told me that my pain was actually due to pressure on or irritation of my occipital nerves which are the nerves just below the base of your skull. The occipital nerves transmit sensations from the back of the head, the top of the head, and areas behind the ears. Pain starts in the back of your head but radiates upward along the areas supplied by the occipital nerves. People experience episodes of incredible pain, and then aching in the back of the head between episodes of very bad pain (hence the 24/7 chronic pain).  She told me migraine medications wouldn’t help this pain, which makes sense looking back on the years and years of medications I took that were completely useless. We talked about different options for treatment such as CGRP injections, occipital steroid injections, Botox therapy, and surgery to relieve that nerve pressure. Dr. Blake told me about a surgeon she works closely with who performs surgery for her patients with Occipital Neuralgia when other therapies failed. This surgery was called Occipital Nerve Decompression Surgery. She told me because I was close to the 10 year mark of chronic pain, that my nerves are getting more and more damaged being pinched off and the success rate of surgery with Dr. Perry decreases significantly at that point. She said because of the things I have tried and that have failed, that she believes I would be a good candidate. I took his information but immediately dismissed the idea as the surgery she explained to me and showed me pictures of looked terrifying. Instead we booked an appointment for the following week for Botox injections.

December 2018 I had my first round of Botox therapy which consisted of about 41 (46?) injections into my neck, shoulders, back of head, and top of head. Me and the two kids flew to Canada the following week for Christmas (a week before Shaun), and I had my chiropractor and massage appointment already booked for the following day in Saskatoon as I always expect a monster migraine the day after I travel, especially when I travel alone with the kids.  It never came. I actually cancelled my appointments. I had an incredible few weeks. I hadn’t felt this good in over 8 years. I felt so good that (against Shaun’s better judgement) when we returned to Houston, I enrolled Emmett in daycare and got a job as an RN doing Home Care. I was cured! Or so I thought. The job was flexible and not very demanding. I picked my own hours and could choose the days I wanted to work. It was perfect. It should have been perfect. But unfortunately, Shaun was right and I shouldn’t have jumped back into work after such a short period of feeling better. My migraines came back worse than ever. My last ever shift was when I had to drive 45 minutes on a dark freeway after being at a patient’s house, and having to talk myself into not passing out on the way home. Shaun looked at me as a laid in bed, near death and told me I wasn’t going back. So I didn’t. I couldn’t even last 3 weeks working the easiest job. I was defeated. So I pulled Emmett out of daycare and continued with life, feeling like nothing would help me.

My neurologist had told me sometimes it takes a few rounds of Botox to find out if the treatment would be effective or not. So I continued several rounds for about 6 more months, adding additional injections to my jawline and increasing the dose at the base of my skull. I think it helped some, but it definitely wasn’t at a level that made me hopeful for the future. At the end of May 2019, I ended up going into the office for an emergency Trigger Point Injection. I had such a sudden attack that I (who doesn’t suffer from anxiety) felt like I was having what I could only describe to be a panic attack. They gave me 4 giant needles in the back of my neck that day which brought pretty immediate relief, and then I got another dose 2 weeks later. I was getting frustrated as I kept “ticking things off my list” of things to try that either didn’t work, or didn’t give me any long-term relief.

So, I decided to call Dr. Perry.

Shaun and I went in for a consult with Dr. Perry just to see what he had to say. We were still pretty against the surgery, but we wanted him to answer questions and explain exactly what to expect during an Occipital Nerve Decompression Surgery. Dr. Perry is a plastic surgeon, which seemed weird to me at first. But after researching, I discovered most surgeons who perform this surgery are plastic surgeons because they are experts in nerves, tissues, etc. where a neurosurgeon would perform surgery on the brain itself.  Dr. Perry sat us down and did his own assessment, very similar to what the assessment by Dr. Blake was like. A million questions about every little symptom I experienced, what therapies I had tried for relief, what medications I tried, what worked? What didn’t? Then he also pushed on various spots on my head gently to see if they caused any pain. He agreed with the diagnosis of Occipital Neuralgia, and agreed I would be a candidate for surgery. He said that if none of these migraine medications/therapies worked for 8 years, its not chronic migraines. He explained how he has been doing this surgery for over 10 years and constantly is learning and improving how he does it. He is one of a handful of surgeons in the USA who performs this surgery because in the eyes of insurance, research, etc, there hasn’t been enough research done to make this surgery a common treatment for people who suffer from Occipital Neuralgia. He said there are so many people out there like me who suffer from this, but doctors are very undereducated in what exactly Occipital Neuralgia is, and as a result are misdiagnosed. 

We left the appointment with Dr. Perry with more confidence and a huge sense of understanding as everything he showed us and explained to us Shaun and I would look at each other because it had been exactly what I had been experiencing the last 8.5 years. FINALLY we felt like maybe, just maybe, we could have a little hope.

After this appointment we decided we wanted to have a second opinion before jumping in. This surgery is a major decision that would take me 12-18 months to heal from, and we would need extra support from our parents as I would be physically restricted to lifting/pushing/carrying another more than 10 lbs for up to 6 months. So, I applied and was accepted as a patient at the Mayo Clinic. Shaun’s parents flew to Rochester, Minneapolis with us to help with the kids while Shaun and I went to my appointments. I was so excited because these doctors are the best of the best, with the most research behind them, right? Well, I am not going to go into it, but the neurologist I saw told me he didn’t believe in Occipital Neuralgia and diagnosed me with Chronic Migraines. He suggested different medications, and when I told him that I had been on those exact medications in the past, he told me that maybe my dose wasn’t high enough. When I refused, he said he wanted me to get RFA (Radiofrequency Ablation) in my neck. This is a minimally invasive procedure that “burns” the nerve that is causing me pain which eliminates the transmission of pain signals to the brain. He told me that the nerve eventually grows back, so I would need to get this procedure done about every 6 months. I then got specialized Xrays done, and he told me I have a small amount of arthritis in my neck. I asked if arthritis can cause a sudden headache that never goes away, and he said unlikely. I asked him about Occipital Nerve Decompression Surgery, and he said, and I quote, “that surgery is hogwash!” Needless to say, I left Rochester feeling pretty defeated, confused, and guilty that I wasted my family’s time.

Over the next several weeks, we spent hours talking and researching and contacting other people who have had this surgery with Dr. Perry, and finally realized the incredible resources and level of research we have in our own backyard. I am still glad we went to the Mayo Clinic because they could have found something, but they didn’t. However, the level of knowledge in medicine in Houston is astounding, and I am lucky enough to be able to access it. 

Shaun and I booked a surgery date. July 30, 2019.