The Exhausting Trial and Error of Trying to Find Migraine Relief

The journey to finding a migraine management plan that works for you can be discouraging and upsetting. Here’s everything I’ve tried so far since being diagnosed with chronic migraine.

I can still remember one of my first migraine attacks. I was about 11 years old.

I can’t remember what the pain was like exactly, but I distinctly recall not being able to tolerate any light or sound. I was in my bedroom with the curtains drawn and my eyes shut.

I remember lying there for hours, unable to have a conversation or do any of my schoolwork.

I didn’t know what a migraine episode was when I was 11 years old. I brushed off the experience as “just a bad headache.” But as the years went by, my attacks became more frequent and debilitating, going from every few months to at least once a week.

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Diagnosis

During my teenage years, I was also navigating other health issues including autoimmune diseases, so I didn’t address my chronic headaches for a while. Once I did, I was diagnosed with chronic tension headaches. The main reason for this was that my attacks involved pain all around my head instead of in one specific location.

When I was diagnosed, I was promptly sent home with the advice to take NSAID pain relievers and stay hydrated.

I was also prescribed diazepam which was meant to relieve muscle tension, but it only slightly took the edge off the pain and made me feel extremely sleepy. Still, I was convinced that the doctor was correct and that there was nothing more to the story.

Then came the first time that I had aura.

Aura

In hindsight, I’d probably experienced aura several times before without realizing it. Aura can come in many forms, not just visual.

I noticed that during my worst attacks, I’d smell things that weren’t there. For me, this usually manifested as smelling a burning smell that no one else seemed to notice. I’ve since learned that this is called an olfactory hallucination and while it’s quite rare it does tend to happen in about 0.1% of all migraine episodes.

I’d also seen flashing lights a few times that appeared as small bright blue-white circles.

But one night, as I lay in bed, I started to see blue swarming across my vision. I thought it was happening because I was putting too much pressure on my eyes with my pillow, but it persisted.

The blue shape continuously diminished and then spread across my vision over and over again. I had no idea what was happening. The blue eventually turned into a gray fuzzy patch that looked like static on an old television screen.

A few minutes later the patch began to fade and was replaced by green and pink zigzag patterns. These visual changes lasted for around 5 minutes, and my head grew more painful shortly afterward. Since then, I’ve had this kind of aura many times, as well as others including ringing in my ears, tingling on one side of my body, and dizziness.

A few weeks later I returned to my primary care doctor, describing the fact that many of my worst “headaches” were making me feel nauseous, sensitive to light, smell, and sound, and unable to focus or do anything.

I explained that my brain felt like it was swollen and my head was throbbing. It was like all the nerves in my head and face were inflamed. I described how the attacks affected one side of my head like someone had stuck an axe in the back side of my head and a dagger in my eyeball.

That’s when I was first diagnosed with migraine and referred to a neurologist.

My never-ending quest for treatment

A few months after the referral, I visited the neurologist. After having me undergo an MRI, the doctor confirmed that not only did I indeed have chronic tension headaches, but I also had chronic migraine. He also told me that migraine episodes can involve symptoms on one or both sides of the head.

He explained that there’s a misconception that migraine symptoms only occur on one side of the head and this often delays diagnosis.

After this visit, I embarked on a long, exhausting journey to try to find a treatment regimen that helped manage my migraine episodes. Here are some of the therapies and medications I tried.

Sumatriptan

Prior to receiving my migraine diagnosis, sumatriptan was the only prescription medication I had tried for managing my head pain.

I found that sumatriptan was very effective for pain relief, but I experienced side effects like chest pain, difficulty breathing, and intense drowsiness that were difficult to manage. It became evident, due to the side effects, that sumatriptan was not a sustainable treatment option for me.

Antidepressants

Around a year later, I tried a preventive treatment for migraine for the first time. This was Amitriptyline, a type of antidepressant. Amitriptyline was meant to help tension headaches and migraine episodes by changing the balance of neurotransmitters in the brain.

I tried Amitriptyline for about 4 months but eventually stopped. It only made a minimal difference to the pain and made me feel very drowsy, emotionally numb, and gave me heart palpitations. For me, the benefits did not outweigh the negatives.

Propranolol

Then, 6 months later, I tried propranolol. Propranolol is a beta-blocker that’s meant to help with migraine symptoms and prevent attacks. Unfortunately, when I took propranolol I felt extremely dizzy, lightheaded, and exhausted. These side effects were intense enough that I didn’t feel safe taking it when I was in public.

I also recently discovered that I have orthostatic hypotension, which my doctor explained could be connected to why propranolol did not agree with me.

Acupuncture

After multiple treatment regimens hadn’t been successful for me, my primary care doctor suggested that I try acupuncture.

Initially, acupuncture was helpful, which I must admit surprised me. After a few sessions, I noticed that my migraine attacks were less painful and less frequent. However, after about a year, its effect began to lessen, and my migraine episodes returned with an intensity that acupuncture could not control.

I returned to my doctor to be referred to a neurologist again.

Magnesium and riboflavin

The second neurologist recommended that I give two supplements a try, magnesium and riboflavin (vitamin B2). Sadly, after trying both for 3 months each, neither made a difference to my migraine symptoms or frequency.

The neurologist then suggested a trial of Candesartan, an angiotensin blocker sometimes used for migraine. However, my primary care team was uncomfortable prescribing it due to my history of low blood pressure.

At this point, I was referred to a specialist headache clinic.

Greater occipital nerve block injections

The headache clinic first offered me GON block injections, which are steroid injections targeted at the two occipital nerves at the back of your head. The injections themselves were painful but not unbearable.

I had been told around two-thirds of patients with migraine experienced some relief from the injections. This statistic left me hopeful so I was devastated when the injections only numbed my pain for about 8 hours.

The future?

Experiencing many different migraine treatments that have all failed has been deeply upsetting and frustrating. For now, I have been trying to manage the attacks as best I can with paracetamol, triptans, ice packs, and caffeine.

Still, my migraine attacks have a significant impact on my life and mental health.

Like many others who live with migraine, I feel anxious knowing that I have already tried so many available options for chronic migraine management. It’s challenging to approach a new treatment option full of hope only for it to prove ineffective.

I’m grateful that I still have more options to try. I’m currently discussing which is the safest and best option for me to try next. The two we are considering are Botox or Ajovy injections.

If you’re having trouble finding a migraine management regimen that works for you, remember that there are many options out there. Just because the first treatment, or tenth treatment, you try doesn’t resolve your symptoms, it doesn’t mean you’ll never find migraine relief.

It’s also important to remember that no two people with migraine are the same. Just because a certain treatment didn’t work for me, it doesn’t mean it won’t work for you.

The key is to try to be patient and keep an open line of conversation with your doctor. Over time, you’ll be able to work together to figure out strategies to best manage your symptoms.