a woman is treating her NMO headache under a blanket using an eye mask

Tips for Managing Headaches With NMOSD

Last updated: October 2022

Headaches are one of the most commonly reported symptoms from people with NMOSD, especially before they have an attack. I am no exception to that fact.

I am no stranger to headaches

I’ve had headaches for as long as I can remember. As a matter of fact, when I was in elementary school, I remember I had a headache so bad I fainted in the hallway at the school. I was sent to the eye doctor who determined I needed glasses. That worked until it didn't. Over the years, I had problems with intense migraines. At one point, I was taking preventative medication to ward them off. None of the tactics or medications ever really worked for me, so I kind of just dealt with it. I had had 2 beautiful children, so I really just didn't take it too seriously when my headaches intensified after pregnancy.

The headache before my attack was different

Before I was diagnosed. I had a consistent headache for over a month. I remember talking casually to my family about it, but I could have never imagined what was to come. "I never once thought evil was lurking around the corner." Right before nausea started, that pesky migraine kicked it up a notch. Not only were they back-to-back, but they were so intense! I thought to myself, "this is really weird. I've never had this many migraines for this long before."

The worst part is the migraine was...different, to say the least. As a person who has suffered from migraines for many years, I had a method. It was consistent, and it always worked. Get a migraine, go into a dark room, block the light, and cover my ears, go to sleep. Tried and true and never failed me. This was a new anomaly. I would have never known this new breed of a migraine turned into an indicator of NMOSD.

Headaches are a part of life with NMOSD

Now that I am living with NMOSD, I still have headaches. Frequent headaches that actually still feel different than when I had them pre-NMOSD. I feel the change is that the headaches now feel more like a pulsating, squeezing, or some type of pressure right on both temples. Due to the lack of research, I cannot determine whether it’s due to the brain stem lesion or not. However, I highly suspect it. For me, I find that the headaches are fairly easy to cope with considering they don't typically last too long. Each person will experience this differently but for me, they tend to come and go throughout the day. Sometimes, I can get relief for weeks.

How I manage the pain of a persistent headache

At any point a headache becomes unmanageable, here are the steps I take to manage them:

  • Drink plenty of fluids! Hydration so important. It's so easy to forget to take care of our bodies when we are suffering in many other ways. These fluids include things like water and tea for me. However, zero sugar drinks or drinks with electrolytes would be best.
  • Eat. All too often, my pain levels are high in my body, and I don't eat. Again, I have to remind myself to take care of my body. When I don't eat, it's much easier for me to get a headache. By eating a light, healthy snack or meal, I can assure that eventually the headache will subside if that is the cause.
  • Lay down and rest. Sitting or resting in a quiet room with limited distractions is the best way to calm a nagging head pain.
  • Medications as needed. There are entirely too many times to count where I was unable to manage the pain alone. At which point, I brought in the reinforcements. No shame in that!
  • Keep the stress and worry at bay. It is best that I don't get a headache at all. Stress and worry tend to bring the onset of this annoyance. Although easier said than done, I do try my best to keep calm and carry on!

Overall, even though I do experience headaches while living with NMOSD, they are not something that stops me from living my best life. Headaches can be managed however if persistent, it is best to consult with your doctor. Avoiding an attack is the upmost important factor for a person living with NMOSD. How do you manage and cope with headaches?

By providing your email address, you are agreeing to our privacy policy.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.

Community Poll

How long has it been since your initial NMO diagnosis?