Ask the Advocates: How to Cope with NMO-Related Headaches

We asked our advocates how they cope with headaches. Here's what they had to say:

Chelsey Tucker

"For as many years as I’ve had symptoms of NMOSD, I’ve also been the un-lucky recipient of bizarre headaches and horrifying head pain. Early on, my headaches were diagnosed as migraines, and I was prescribed various medications to help me during times when I felt a migraine approaching. Sometimes the medical interventions helped, and sometimes they didn’t. Trying to explain to my then-neurologist what was happening inside my head proved to be difficult."

"Although at times I was truly feeling the worst pain of my entire life, I struggled with not wanting to be perceived as 'dramatic' or narcotic-seeking. I was diagnosed (incorrectly) with MS during this time, and nothing about my symptoms or their severity were adding up. I walked a fine line between being medically complex and completely unable to treat. After years of agonizing pain with no answers, I shut down and stopped reporting symptoms to my doctor."

"Finally, in 2018, I was deemed “too medically complex” and was transferred to a different doctor within the same neurology practice. What I thought was one of the worst things that could have ever happened to me as a patient turned out to be the best."

"After a particularly horrible attack of bi-lateral optic neuritis in 2019, my new neurologist took a closer look at my medical file and determined that what I had wasn’t any kind of MS he had ever seen. I would soon go on to be diagnosed with NMOSD, and every symptom I had experienced for the last 10 years was brought up and discussed."

"Headaches were one of the first symptoms we talked about. Aside from migraines, I explained that I felt two very distinct kinds of head pain. I first described what felt like electric shocks running through the side of my face and jaw. The spasms only lasted a few seconds, but the pain took my breathe away. I remember screaming the first few times I felt the jolts go through my face. The pain would be triggered by things like putting on makeup, smiling, brushing my teeth, and washing my face. The pain would come and go for months at a time, and I never knew (and still don’t know) what causes their presence. Without hesitation, my doctor said that I had described something called trigeminal neuralgia; a condition which can be associated with demyelinating diseases like MS and NMOSD."

"We then discussed the headaches that had haunted my dreams for over 10 years. I had no explanation for when or why they happened, but they were distinct because they would only happen after I went to sleep. I would wake up with extreme pain behind my right eye, and the headache would go away after the longest 20-30 minutes of my life. And while I know that all pain hurts, THIS is a different kind of hurt. I knew this wasn’t a migraine or optic neuritis. There was no “sleeping off the pain” or resting it away. Quite the opposite, actually. Sitting still isn’t possible when something hurts this bad. I want to scream, but I can’t. The pain won’t allow me to think about anything other than how bad it hurts. Once the pain eases up, my right eyelid droops down, my eye appears irritated, and sometimes my nose becomes congested. These headaches come in cycles, sometimes happening a few times per night, then vanishing for months."

"I thought my neurologist was going to call me crazy after what I had described, but instead he diagnosed me with cluster headaches. Again, he said that the symptoms I had described to him, along with the pictures I had documented of my droopy eyelid, pointed him in the direction of cluster headaches. A combination of anti-convulsant medications and injectable triptan medications have been key to creating a more manageable pain experience for me."

*Side note: Not all headaches are created equal. Some of the therapies used to treat NMOSD have been known to be associated with an increased risk of developing PML, or progressive multifocal leukoencephalopathy, also called meningitis. While uncommon, these conditions are serious and potentially fatal if not treated immediately. Patients should be aware of all medication side effects, and I would personally seek emergency medical attention should anyone experience new or worsening headaches.

Haleemah Sarwar (Hali)

"Having a headache on a daily basis can take a toll on a person. Due to the high signal lesion in my brain, I experience headaches quite frequently that are difficult to get rid of. The pain will radiate from the top of the head to my eyes. Sometimes it is a stabbing pain that comes and goes, and sometimes it is consistent pain. Before my first attack, I do not remember a period when I had headaches so often."

"The headaches will affect me in numerous ways. I will feel nauseous and sluggish all day. It will make me feel agitated due to the high pain level. The headache will prevent me from eating because it will make me feel queasy. They will stop me from interacting with people because all I wish to do is stay in bed. It is tough to have a simple conversation when I have a headache. And it will result in me falling behind on coursework. The ability to concentrate whilst being in pain is impossible for me. As a law student, it can be really hard to participate in class whilst I’ve got a headache. Luckily, my lecturers are very understanding and know my symptoms can take a toll on me. They have been very lenient on deadlines as they know my headaches can get worse due to increased screen time, staying up late to get work done and stress."

"I cope with my headaches in various ways. First, I make sure I do not overdo anything whilst I've got a headache. If I overwork or stress out, they tend to become more severe. I have had headaches last longer than 24 hours simply because I chose not to rest. I have tried various painkillers like paracetamol, anadin, gabapentin and co-codamol. Yet, they haven't been effective in reducing my headaches. I spoke to my neurologist about that issue and he informed me that one painkiller I had tried, co-codamol, can make headaches worse and turn them into chronic headaches which are even harder to get rid of! I began taking amitriptyline a few weeks ago, which I think has been working great for my headaches."

"I also turn the brightness down on my phone, use the blue light filter and try to reduce my screen time as much as possible. It is favourable to stay away from light as it can make headaches worse. I will take as much time as I need to rest, reminding myself that my body is battling a disease and fighting to function every single day. It deserves the rest. It is crucial to get enough sleep, at least 8 hours every night. It also helps to stay away from the noise. This could be loud music, the TV, or even people talking. Sometimes, even if I feel sick, my headaches become less intense when I eat food. If I feel up to it, I will make something beneficial and healthy hoping it will help reduce my headache. Staying hydrated is also essential. A lot of medication can cause dehydration so I try to drink at least two litres o water a day, especially before, during and after my infusions. From all the things I do to help with headaches, rest is the most important."

Mo Jones

"Headaches: the bane of my existence. When I was younger, I suffered from them, and never knew the cause. They would get so bad that I would end up in the emergency room because the pain and sensation I got from them was so bad. We were never able to find the cause but as time went on they became less."

"15 years later the headaches have returned, and now I know the cause. They are still very much debilitating when they happen. The first time I got one after an attack, I thought that I was literally dying. Everything affected the headache: noise, light, smell; they all seemed to make them that much worse. I get them behind my eyes mostly, which is scary because they affect my vision and I never know if the vision is going to return."

"When the headache starts and I feel it coming, I will start with Tylenol. If the Tylenol doesn’t work after a while, that’s when I know that this is more than likely a migraine and not just a regular headache. Next, I move to caffeine. Caffeine will normally help if the Tylenol doesn’t. I try to stay away from the caffeine if possible because I am a diabetic and it sends my sugar through the roof. Sometimes though, I will start with the caffeine because I am not a fan of taking pills and it will usually kill the headache or migraine faster. Dark, silent rooms, with a cool cloth help. I don’t know what it is about the cool cloth, but it’s soothing."

"If none of the other methods that I normally use work, then I will take the medication that my neurologist prescribed. The medication is Fioricet. This is usually my last resort. Normally I start off with one pill, and if that doesn’t work, then I am allowed take another a few hours later. I haven’t had a headache bad enough to need more than that lately."

"I realized that like my pain, my headaches have triggers as well, and they are the same triggers. Heat is one of them. Heat is normally an instant cause of a headache for me. The cold doesn’t bother me, but when I am overheated it will cause a headache. If I am stressed, it will cause a headache, and those can take a little longer to get rid of because if I am in pain also, the headache tends to last as long as the pain does. I try to make sure I am eating regularly, as when I do not, I get a headache from that. Managing stress seems to be the most effective way to maintain my health because as soon as I experience stress, my health declines. Finding a good workout regimen, meditation, eating regularly; these are all things that I am working on to make sure that I stay healthy, and don’t have a flare (I say this as I am currently experiencing a flare due to stress)."

Do you experience headaches because of your NMO? Let us know in the comments.