CGRP Monoclonal Antibodies: Visual Disability

I started having up to 30 migraines per month while I was still a student and at the beginning of my career. At first, the problem seemed manageable, but over time it became obvious that this was not a normal level of headache frequency. I relied heavily on painkillers, and eventually they became part of the problem rather than the solution, as I developed medication overuse headaches. I had to stop taking painkillers as quickly as possible while still living in chronic pain.

Like many patients, I initially trusted the medical system and followed conventional recommendations. I started preventive treatment, expecting that standard care would help me get off painkillers and bring the migraines under control. One medication, Aimovig, seemed to help to some extent, but it was not enough. After about a month on it, I still ended up in the hospital with medication overuse headache, where I was treated in a deeply dehumanizing way. That experience became a turning point. I decided I would do whatever it took to get better, and that was when I started the lion diet.

I began improving, although I was still on medication and still afraid of withdrawal. At the same time, I slowly started developing new symptoms: increasing light sensitivity, trigeminal nerve pain, and worsening food sensitivities. At first I could still tolerate vegetables, and then even that became difficult.

When I told my doctor about the light sensitivity, I was told it was not caused by the medication. In an attempt to find out what was happening, I was given another CGRP monoclonal antibody. I took one injection.

It takes a few days for that type of medication to begin working. About a week later, I woke up with suicidal thoughts. In fact, it was the suicidal thoughts themselves that woke me up. Along with that, I developed heart palpitations, muscle spasms, worsening light sensitivity, and worsening nerve pain. The suicidal thoughts passed after two days, but everything else continued to deteriorate.

For the next six months, my condition kept getting worse. I became completely disabled. My light sensitivity became so severe that I spent nearly all of my time lying in a dark room in bed, unable to function normally. The muscle problems became so severe that I struggled to walk. I developed major electrolyte imbalance issues, especially severe magnesium deficiency. Even walking could trigger a migraine because I was losing so much magnesium. At one point I had to supplement magnesium 16 times a day. But the most devastating symptom was the light sensitivity.

I also experienced changes in mood, personality, and nervous system regulation. My system became extremely reactive and had great difficulty calming down. I struggled with anger, irritation, and a constant state of nervous system overactivation. I spent 10 months completely blindfolded. I lost my job. I lost my independence. For about two years, I was significantly disabled and dependent on my parents for basic daily functioning. They cooked for me, cared for me, and helped me survive a period in which I was no longer autonomous.

Throughout that time, I stayed on the lion diet. After about two years, I began to slowly emerge from the worst of the disability. It has now been more than four years since that injection, and I still live with significant after-effects. I remain sensitive to artificial lighting, especially flickering light, although I tolerate natural light better.

I also believe the medications triggered broader inflammatory complications associated with CGRP monoclonal antibodies. In my case, I suspect something like Susac syndrome may have been involved, although I was never formally diagnosed because doctors attributed my symptoms to depression and treated me as though I was imagining or exaggerating what was happening. Because of that, I never received a proper explanation for the full picture of what happened to me.

There were other changes that I never publicly discussed before. About a week after the injection, a mole I had had since childhood changed dramatically and then disappeared over the following months. I never had it properly evaluated, so I cannot say with certainty what it was, but it was another alarming change that happened during that period.

Even now, the consequences have not fully resolved. Two years after the injection, I also developed major sensitivity issues related to mold exposure. I became much more reactive than before. I have new allergies that I never used to have, I am much more sensitive to foods, and I still struggle with immune health, low energy, and daily headaches.

What began as chronic migraine evolved into a much larger and more complex medical crisis. The worst long-term consequence has been the severe light sensitivity and the lasting neurological and inflammatory problems that followed. It does get better, and I am functioning now, although I still need to wear glasses for light sensitivity. My immune system has not fully recovered.