I've had a migraine for 9 months. My doctors aren't sure when it will end.
- Growing up, I often experienced migraines, but in January, I got a migraine that refused to end.
- I've tried many treatments, and nine months in, I'm still experiencing pain like a drill in my head.
I've had migraines since my early 20s. I would usually get them every few months. Luckily, I knew my triggers and could usually stop them pretty quickly with medication. While they were annoying, they never stopped me from living. When they were bad, they would typically last a few hours — a day at the longest — and then I could get on with my life.
However, over the past nine months, I've had a migraine that has taken over my life. This migraine has been nothing like my past experiences — the pain has been relentless.
An unending migraine led to a frustrating diagnosis
On January 12, I got a migraine for no apparent reason — I had been eating and sleeping well and avoiding my triggers. The worst of it seemed to last over the first four days, and while it settled down to a more tolerable level, it refused to go away. So I saw my general practitioner, who prescribed me sumatriptan. It didn't even touch the pain.
Though I was no longer confined to my bed in severe pain, the pain in my head was agonizing. A few weeks later, I started to feel pins and needles on my right side. When the sensation continued, I called my doctor's office and was told to go to the emergency room. While looking for somewhere to park, the entire right side of my body went slack. That's when I got truly worried.
When I first went in, I couldn't move one side of my face. The doctors were concerned I was having a stroke. Luckily, a CT scan showed that I wasn't, and after I had it, my right side regained feeling.
After being given a cocktail of drugs for the pain, I was told I likely had atypical hemiplegic migraines. It has all the normal symptoms of a migraine — nausea, light sensitivity, and pain — but these migraines also mimic symptoms common to stroke. For example, they can also include muscle weakness that causes temporary paralysis on one side of your body, which was what I experienced.
Nobody could explain how long the migraine or its symptoms would last. I was told that it was a rare condition and that there was not enough research about it. It seemed to vary from person to person. For some, it would be days, and for others, it would be months.
I hoped to find something wrong just to have a solution
After the diagnosis, to rule out anything else, I was sent to have several MRI scans, which came back inconclusive, so my doctors discharged me. It might sound strange, but I prayed they would find something, even if it was serious. At least then I would know if I was going to get better or not.
Nine months later, I'm still experiencing my migraine. I've been prescribed various drugs, but none have made the slightest difference and some made me feel a lot worse.
The pain feels like I have a drill in my eyes and in the top of my head. I'm tense and have developed neck and back pain, as well as jaw pain from grinding my teeth. I'm sensitive to light, noises, and smells.
I'm constantly nauseous — I struggled to eat when it began. Since then, I have changed my diet and am eating solely to stay alive. Eating solid foods makes me need to throw up, but I force it down for dinner. I often skip breakfast, but my lunches consist of smoothies. Because I'm lightheaded and dizzy, exercise is out of the question. Sometimes just walking down the stairs makes me see black spots.
I have tried every treatment I can think of and afford, including:
Osteopathic medicine.
A hot-stone massage.
Chiropractic work.
A migraine cap.
Neck and back massagers.
Holistic medication.
Meditation.
Yoga.
Oxygen therapy — which isn't great for us claustrophobic people.
None of these have helped alleviate the migraine, and I probably have spent over $1,800 on these remedies. The only thing that seems to help manage the pain is prescribed cannabis drops, which I take at night to help me sleep and not wake up constantly from the pain. These cost me about $200 a month.
I have to save my energy for the most important activities, and I grieve my old life
I spend my days putting all my energy into getting through my workday, which is luckily a desk job I can do from home. I spend my evenings recovering in my dark bedroom. If I try to do anything additional, such as seeing friends or cleaning the house, I'm out of commission for the rest of the week.
The biggest impact has been on my mental health. I feel I'm constantly trying to persuade doctors to take me seriously. The neurologist I saw discharged me after my MRI scans came back clear, regardless of the fact that I was still in a lot of pain. Doctors often refer to it as "just a headache," which feels invalidating.
I'm always advocating for myself and following up with doctors for new medications or other treatments. Living with this pain has been isolating. I often feel alone and have depression. I don't want to offload my feelings onto people I love or be a burden to my family. While I try my best to be positive, it feels like people are always feeling sorry for me. I have immense guilt for making people worry.
It's exhausting living with an invisible chronic condition. My life has changed dramatically, and I'm still coming to terms with that, while trying to accept that this may be my forever. I'm grieving my old life but trying to build something good out of my pain.
I want to live my life and be around the people I care about. However, this existence is so different from what I want, and I'm trying to figure out how to move forward when I feel so held back.