I used to blog about my health, when I was newly diagnosed with psoriatic arthritis, and I loved sharing my journey. I stopped blogging because of interpersonal relationships - it took a long time for me to get comfortable with the idea that some people who had ill intentions could read my words and potentially attempt to use them against me again. At some point, I realized, these people will make up stories about me anyway, even if I have no public facing content, so why hide myself away from them? And I was right. But that’s not what this post is about… no one needs to care about the people who are obsessed with me for no good reason other than I won’t allow them access to me anymore.
I have been having some pretty terrifying struggles with my physical health this past year. In August, I was hospitalized with the worst head pain I have ever experienced. I’ve had migraines since I was a child but this made those look like nothing. In addition to the absolutely horrific pain, I was extremely dizzy, experiencing periods of blurry vision, and occasional tingling in my right arm. The headache started with what felt like a punch to the back of my head, so the ER immediately started treating me for a potential aneurysm.
There was no active bleeding, but since they could not determine immediately the cause for my symptoms, I stayed for 4 days in the hospital with brain scans and medications to treat the pain. I left with a diagnosis of an aneurysm - there is a spot where I may one day have issues. I will follow up with a neurosurgeon regularly to keep an eye on these vessels and if they start to look obstructed I will get a stent. This is not the cause of my pain, however. Just a fun little problem to watch.
After the hospital, I followed up with my neurologist. Because they could get my pain controlled, this seemed like the best plan. He diagnosed a tension headache (at this point I had been having symptoms for over a week and was only partially controlled with medication). He changed the medications and sent me home. Day after day passed with no improvement. I started to get worse. after a month of steroids, muscle relaxants, and anti inflammatory meds failed to bring any improvement, I sought out a second opinion.
My new neurologist immediately ordered an MRI of my neck - revealing a couple minor herniated disks and the beginning of some arthritis. She sent me to physical therapy in December and for the first time in months I was feeling better! Unfortunately, once my time with the PT was done, the pain started to return. Without the hands-on massage and manipulation of my neck, I started to get dizzy and blurry again.
My neurologist sent me to pain management. In March, I started a series of nerve blocks, to treat what he diagnosed as Ocipotal Neuralgia. Finally a diagnosis that makes sense to me. It took over 6 months of trial and error to get here but now I have had 3 sessions of nerve blocks and one radio frequency ablation to the nerves in my neck and I am doing so much better. I still have occasional headaches, but they’re not daily. I get dizzy if I tip myself upside down too fast but it’s not with every step I take. my vision is back to normal.
We don’t know how long this will last so fingers crossed it’s a long term solution. I have been barely living life since this all started and I very much miss being able to do things like take walks and do yoga. Last week a made an omelette for the first time since August - that’s how much the pain and dizziness have impacted me. I can only hope things get better from here.
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