Seeking the Cause of My Persistent Headaches While Debating Spinraza

Brianna Albers avatar

by Brianna Albers |

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I’ve had a Spinraza consultation set up for a few months now, and was able to squeeze in a neurological evaluation during the appointment. The CT scan of my sinuses came back clean, and the ENT specialist suggested I see a neurologist about a specific kind of migraine that comes with vertigo, so I’m lucky I was able to see someone so quickly.

I was dreading the appointment from the moment we called about the neurological evaluation. I had a feeling I wouldn’t get an answer, but I held out hope till the very last second that she would listen to my laundry list of symptoms and say, “Oh, yeah, you definitely have migraines, that’s a textbook case right there.”

I’ve spent the past 10 months in doctors’ offices trying and failing to figure out what is actually going on with my head. I don’t need a cure — which probably doesn’t exist anyway — but I do need an answer.

Of course, I didn’t get one.

She thinks I have tension headaches. Migraines are more intense, apparently, and are usually associated with nausea or vomiting and vision problems, neither of which I experience.

Given that my headaches are more of a low, constant pressure than sharp spikes of pain, it makes sense. But migraines also made sense, as did sinusitis. Still, tension headaches are common, and become more likely with muscle tension — check — and anxiety — double check. So, I’m trying to rest in the fact that I maybe sort of kind of have a probable answer.

My PCA wasn’t able to take me to the appointment, so my dad tagged along. He knows how anxious I’ve been about this, so once the doctor left the room, he asked me how I felt. It took me a while to answer because I honestly didn’t know. After waiting so long for what was ultimately a nonanswer, but an answer-adjacent, I was disappointed.

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But I felt better than I have in months, largely because the doctor looked me in the eye and told me that none of my symptoms concerned her, which is something I needed to hear. I’ve been going to Gillette Lifetime Specialty Healthcare my entire life, and I trust the doctors there.

It also helped that the neurologist was familiar with SMA. I felt listened to. And, for the first time in nearly a year, I actually took what the doctor had to say at face value.

Long story short, I’m trying several different remedies for my headaches, including increasing my water intake, aromatherapy, vitamin supplements, and even massage. I wouldn’t say I’m optimistic, but compared to how I felt last week, I’m hopeful. Time to start charting my daily pain levels and — hopefully — get back to living my life.

I also discussed Spinraza with the neurologist. She had an hour-long spiel for us, complete with PowerPoint, and while I found the information interesting, nothing convinced me to start the process yet.

I completely understand why other people in the community have gone forward with it, and all the progress they’ve seen makes me incredibly happy. But I just don’t think I’m ready yet. I could blame it on my medical anxiety and probably be correct, but there’s also a skeptic in me that wants to see more studies before I have a needle shoved between my vertebrae or, worse, undergo surgery.

So, Spinraza is on hold — at least for now. I have a new school year to prepare for, and a book to write, and chronic pain to live with. After the craziness of the past year, I’m ready to sit down with my body and get things sorted out, preferably without an implanted reservoir.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


Nicole avatar


I have been having the same issue but I've already tried Spinraza. My anxiety is more so because of the pain from it. You are right in putting it on hold. If you have a fused spine like me do not attempt. They cannot reliably get the needle passed the rods. I had constant nerve pain for over an hour during my third (and last session). This gave me PTSD and although I desperately want to have more strength,I will not be attempting Spinraza again.

Brianna Albers avatar

Brianna Albers

Thank you for sharing, Nicole! I'm sorry to hear that Spinraza didn't work for you. :( I know they're working on other delivery methods, so fingers crossed something crops up in the near future!

Matthijs Hamakers avatar

Matthijs Hamakers

Hi Brianna, my name is Matthijs and I'm from Holland. I've had similar headaches for a while and my neurologist also said it were tension headaches. She prescribed a low dose of antidepressants amitriptyline and she increased the dose until my symptoms were basically gone. Now that I am set to the right dose, I hardly ever have those headaches anymore. Of course I don't know if you have tried this before and I am not a doctor but it might be worth discussing with your doctor. If you want to know more feel free to contact me. Cheers Matthijs

Brianna Albers avatar

Brianna Albers

Thanks, Matthijs! This column is a couple years old - I've since been diagnosed with chronic tension headaches, like you. I haven't tried amitriptyline but I'll discuss it with my doctor!


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