Vestibular Migraine and Me, Part 1

dizzying view of a descending spiral staircase

A couple of posts back, I wrote about having to use a walker because I started experiencing vertigo and became unsteady on my feet. Thankfully, I have regained my stability, mostly, and I don't have many episodes of vertigo, but I still deal with the elements of the migraine itself. I will add that I fell down the stairs and broke a toe, so things still do get a bit wobbly. 🩼

I am not new to experiencing migraines. I have had issues with aura, pressure, nausea and light sensitivity for decades. In fact, it was in 2009 when everything fell apart with my health, it was preceded by what I can only describe as a thunderclap headache. It felt like someone popped me in the head with a rubber band and I felt weak like it washed over me. Sounds strange but that's. I am trying not to make it dramatic on purpose, but it was really scary. I had just came back from dropping my kids off to Brooklyn for a few weeks to spend time with family and I was home alone. I called a friend to let her know what was going on, just in case things got even worse and I couldn't communicate later on. Looking back, it wasn't the best idea to drive myself to the Hospital, but it was the fastest way to get there. Plus, we had a volunteer Fire Department in the area, and they were nothing more than an expensive taxi, so I felt safer going directly to the ER that was only a few minutes away. From that day to this, I have fallen down the rabbit hole of Chronic Illness and no matter how hard I try, I can't get out. The white rabbit is in hiding, the Mad Hatter is at every turn and I am over the Queen of Hearts. She can have my head at this point.

It's now 2025 and yes, I continue to get diagnosed with new things and develop complications from said new things. But it takes a lot to make me truly concerned. Enter August 13th, 2025. I was sitting at my desk performing my job. I work from home and have since 2020, because of the 'Rona. I hadn't been feeling well for maybe two months and this was letting me know that a break was needed because my body was getting worn out. I can feel when my body is telling me that it's had enough. I would wake up exhausted, I drag myself around, the brain fog ramps up, the words get lost on the way from my brain to my mouth and I am typically in bed by 5pm. As that persists, I know that I am going down and soon. By down, it means that I won't be able to get out of bed and my nervous system basically collapses, and no medication or amount of sleep can correct it. I literally have to wait until my body recalibrates on its own time. It can take a couple weeks or a couple months. I can't prevent it, so I just prepare. One thing that I do is make sure that my hair is clean and put in a protective style. This sounds like a trivial thing but having afro-textured hair that is thriving means that I have to understand its fragility. I could end up in the hospital for a few days or laid up in bed for a week. Either way, my hair will suffer and one of my joys in life is cultivating my hair and I hate to lose it because of a bad episode with my health.

So, here I am, at my desk, trying to put up my hair because the crash is imminent. I am checking on the progress between calls and mid-sentence, my view of the world slants and I get dizzy. Nope, not the typical lightheaded dizzy that I have experienced with POTS for years. Everything that I could see was actively going down a drain and it felt like that I was going with it, all while sitting still in my chair. Everything started to go slow. My movements, my words and all sound. I have a motorized chair that I got from work through workplace accommodation and it allows me to lean it back as well as raise the legs. I instinctively leaned the chair back because I figured that it must be POTS so laying back will stabilize the room. NOPE. It made it worse. Me and the chair were being sucked into the black hole that opened up in my room. Still, it had to be POTS...right? Let's continue to keep that idea. I maintained that thought as I let my boss know that I was having a bit of an episode and that I would be ok but I needed a few minutes. After 2 hours of trying to hold on and not completely collapse, I called out half a day, close my laptop and crawled the two feet to my bed, as the world continued to spin.

My daughter took up my former spot in the chair as she watched over me as I tried to get some rest over the next few hours. Every direction that my eyes moved, even with my eyes closed, made me feel like my whole body was tumbling in that direction. I did manage to sleep but I felt even worse waking up. This went on for the next three days because my dread for going to the ER is strong. It is highly discouraged among my own doctors to go to the ER for POTS stuff. Go only if there is something new. It's very sad but the cost of admission to be gaslit is not worth it. By day three, I finally called my Primary Doctor's office to make an urgent appointment. They initially told me to come in but by the time that my son got dressed to take me, they called back and told me to go straight to the ER. Le sigh...

I wrote about this maybe two posts ago, but this is what happened before I went in. I saw many doctors over the course of the next 36-48 hours. But there was one that came in that just so happened to be working at the hospital that weekend. He was not just a Neurologist but a Vestibular Neurologist. He asked me questions about how all this started. He did an exam that was very different than what I was used to, seeing Neurologists for years. He believed that I was having an acute Vestibular event but wanted to rule out the idea was that I had a stroke of some sort. Up until that point, I never heard of a Vestibular migraine or a Neurologist that specializes in them. My field of expertise is in the foolishness that I already have. I need to do a TED talk 😊. This doctor ordered a MRI to rule out a stroke but he was pretty sure that my issues were Vestibular in nature. He even offered for me to schedule an appointment with him when I was discharged. He was confident, not arrogant and I felt like I could believe him. After the stroke was ruled out, I was discharged the next day with a walker for my balance issues and a list of Vestibular Therapists to see.

What is Vestibular Therapy Like?

Up until the time in the hospital, I had never heard of Vestibular Therapy. A lot of firsts at this hospital stay. I have had the regular Physical Therapy for muscular skeletal issues in the past, and I was never completely healed, just slightly better. Looking at you HEDS. Going into this appointment, I was dealing with a brand-new experience, and I was very skeptical. The first available appointment that I could get was not with Hopkins because their next available was in November! That was hard pass. I called the second place on the list and was able to secure an appointment within two weeks. I booked that visit and I will say that I was very thankful that I did. The place was local and I met with their lone Vestibular PT. She was very relaxing and created a very calm environment. Always very gentle and kind with a soothing voice. These things really made a difference with dealing with a new situation, vertigo and possibly, a migraine. The VPT led me to a dark room and put on a set of googles that made me look like Ray Stantz and I too was going to search for ghosts. They were also a bit heavy and that weight made my already dizzy self, feel a bit worse but it was short lived. The googles had a camera that looked at my eyes and relay that image to the screen before me. On the monitor, I could see each eye separately, up close and a bit too personal. Jodi explained that she was looking for nystagmus. Another new term...check! She was looking for my eyes to make additional movements outside of the usual up, down, left and right. The pupils can be shaky or zig zag a bit. Apparently, this shows stress in the brain, assuming that there is nothing else like a tumor or another neurological condition. After a few movements that had me look around and lay down and sit up, the VPT put a cover over the front of the googles making it almost completely dark. She wanted to see how my eyes would react when I didn't have something to focus on. Oh boy, did my eyes start to perform. They are zigging and a zagging down to the left and it was called a down beating nystagmus. It was present the entire time that my eyes were covered but I didn't feel a thing. It is an involuntary movement that I cannot replicate by forcing it to happen. She also performed the Epley Manuever which is supposed to reset these crystals in the ear that could cause vertigo, when displaced. The condition is called BPPV or benign paroxysmal positional vertigo. I didn't feel any better so that was ruled out.

After that assessment, I was taken to another room that was better lit, and we talked about what has happened to lead me to this point. I filled her in, and we did gaze exercises that are designed to help my brain and eyes to get back in sync and to help with the vertigo and nausea from movement. There was one that was seated and one that was standing. I only lasted 2 seconds on each one. There was also an exercise to help with balance. Standing with my feet together with my eyes opened, then closed. Next, with one foot slightly ahead of the other and then switch. Still with the eyes opened and then closed. I could barely stand up straight but my PT was there to support me as I wobbled like a baby learning to walk for the first time. It was very troubling to me that I could no longer handle something so simple. The VPT would also do some type of manipulations with the neck the affected the eyes. I still can't explain it after 3 months. But I can say that after each visit, I felt phenomenal! Even so, I was skeptical because I could not see how these things would help me at all in the long run. I thought that I needed a pill to just dull my brain and let me rest because though I could sleep, I wasn't getting that much rest. I didn't wake up refreshed. Unfortunately, my regular Neurologist could not see me for over 3 more weeks. This meant that I had 23 days to wait before I could get "relief". VPT would have to do.

There is definitely more to share and I will have to do that in a part 2 because there is so much more to share. Stay Tuned.

Until Next Time 🩵