2/8/23 Note: I was diagnosed with Multiple Sclerosis on October 31, 2023. A lot of what I was experiencing in 2020 showed classic signs of MS however the full diagnosis could not come at that time because I only experienced one attack and by definition, MS is multiple attacks on your brain or spine. The post below describes the start of this journey that we now know to be MS, but was misdiagnosed as vestibular migraines and vertigo, and eventually named Transverse Myelitis. I will be posting an updated video on my YouTube channel, and updating this post as well.
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This post was originally posted on January 28, 2021.
On October 11th the symptoms started. I went for a bike ride on a beautiful Sunday morning (feeling a little nauseous, but ready to power through it). It was pretty hot and I biked farther than usual so when I returned feeling more nauseous than before and a little “out of it”, I figured I was just dehydrated. I remember speaking to my sister and brother in law on the phone about an hour later and suddenly starting to feel a migraine come on. I figured it was just my usual pains. I have suffered from migraines for over 20 years. I could get through this. If I just take it easy and drink some water with my usual migraine meds, it will pass quickly.
It didn’t.
On October 13th I visited my primary Doctor for my symptoms. My migraine was still present but I was feeling super dizzy and nauseous. I knew something was wrong. I made the mistake of mentioning that I thought I had vertigo, and after doing a few manual tests (follow my finger, touch your nose, walk in a straight line, etc.) the Doctor said that’s what it sounds like so let’s treat it as vertigo. “This is a normal symptom of migraines,” he said. He prescribed me a anti-dizziness medication called Meclizine and told me that in order to recover and help with the dizziness, I should see a physical therapist.
What? A physical therapist? This won’t pass on it’s own? I have to see a physical therapist to help me walk “normal” again? How did this happen? How long am I going to feel this way? I had so many questions! I visited a physical therapist twice before I realized that there was a bigger problem that lied ahead. The therapist listened to my symptoms and concerns and ran a few tests on his own (the epley maneuver) and realized that this didn’t sound like vertigo at all. “I think we are dealing with something bigger here Jen,” he told me.
I kept that with me. Something bigger. Okay… but what? No one could give me answers.
I was a mess and everyday functions seemed difficult or damn near impossible. I couldn’t move too quickly. I couldn’t look around a room without getting intense head pain and dizziness. It had gotten to the point where just turning my head from one side to the other felt like the room was violently spinning and I was beginning to have double and blurred vision in my right eye. I couldn’t lay flat, sleep on my right side, or sleep in total darkness because that made the dizziness worse. I was afraid to go to sleep every night because I felt like I was free falling in the dark and of course that made me more nauseous. I would wake up feeling delirious, dizzy and sick.
Saturday morning I woke up ready to vomit and I almost fell to my feet. Walking was too difficult because I swayed from one side to the other and I had to run and grab a wall to hold. I fell to my knees and crawled to the bathroom, vomiting for hours. When my husband returned home (he went to drop the kids off at family’s house so he could take care of me) I was hugging the toilet, sweating and holding my head. I couldn’t explain how I felt or what was happening. I was convinced that I was having a seizure, suffering from brain tumor, or an aneurysm. I was terrified.
We rushed to the Emergency room. They drugged me up and ran countless tests from MRI’s, MRA’s, CT scans and heart evaluations. I was picked and prodded by nurses and Doctors and the on site Neurologist told me that my exams came back fine. He said there wasn’t any area of concern that he could find but he wanted me to follow up with ENT for a possible inner ear issue and then follow up with him for brain evaluations as this could have been linked to my migraines. He also prescribed a medication by the name of Topiramate which is an anti-seizure medication that is used to treat migraines.
If this truly was a migraine issue, why am I having these symptoms now, after 20 years? What was happening inside my body? Why wasn’t anything showing up on the tests? I was confused and I was scared.
I was released from the hospital the next day, more confused and afraid than ever. I had no idea what was happening and what I was supposed to do from here. So this is it, I thought. This is how I’m going to feel forever.
As the days and weeks went on, I continued to do research, pray and research more. I made an appointment with an ENT Specialist that left me in tears because he said whether this is an inner ear issue or a migraine issue, it could take months to years to recover. Years? What the hell! I can barely walk, and everything is over stimulation for me. I can’t function this way for years!
That night I found two blogs that helped me tremendously– The Dizzy Cook and Migraine Strong. I read the stories of these two brave women and instantly felt closer to answers. They spoke about their experiences with vestibular migraines, dizziness and other symptoms, their road to recovery and their treatment plans. Every night I went back to their words. I studied their plans and what helped them through attacks. I took notes and I looked up the books they recommended and the supplements that helped with their symptoms. When I found out that Jen (of Migraine Strong) went to a Doctor in Tampa that specializes in migraines and neurology, I knew I had to take action. He’s here in Tampa?! I HAVE TO SEE HIM!!
My first appointment with Dr. Danner was on November 4th. He listened to my concerns and helped me understand that what I was experiencing could have been an inner ear issue or be a migraine issue however regardless of which one it was, it would be treated in the same way. He encouraged me to follow a migraine elimination diet to help me find what my triggers are, start taking at least 500 milligrams of a magnesium supplement everyday, keep taking my prevention medication, and follow up with him in a month.
I followed the elimination diet to a “T”. I removed nuts, citrus fruits, dairy and a few other triggers from my diet. I fell in love with a book called “Heal Your Headache,” and I bought Magnesium supplements and foot soaks (for the dizzy spells). I went down rabbit hole after rabbit hole of vestibular migraine research.
With the help of these lifestyle changes, I started to see a decrease in the number of migraines I was getting. I went from one every other day to about 4 to 5 per month. I learned the danger of rebound headaches, which occurs when you rely on a pain medication to treat your headache and although it provides temporary relief, it actually just makes the inflammation worse, causing the headache to come back with a vengeance. I stopped taking my Excedrin and BC powder (unless I needed it in very extreme cases where my migraine would last for days and prevented me from doing everyday tasks). I tried my best to rely on natural remedies like ginger, magnesium, electrolytes and lots of water.
A few weeks went by and migraines decreased and my dizziness subsided but I started to notice that the migraine prevention medication that I was taking was giving me adverse effects. I had crazy brain fog, to the point where I found it hard to hold conversations or keep a thought for longer than a few seconds. It made me very exhausted and depressed, and I lost over 20 lbs. It made my body feel cold (literally). I felt frail and weak.
The day before Thanksgiving I called Dr. Danner and asked if I should keep taking this medication or stop based on these symptoms and a numbness I started to feel in my right leg. After careful consideration, he recommended that I stop but continue the other migraine treatment plan and follow up with him at my next appointment (which was about a week and a half later).
When I had my follow up appointment, he asked me how I felt. By that time, the numbness in my right limbs had started to feel like a heaviness and my leg would sporadically “lock up”. If I was walking, I would be dragging my leg or walking with a limp until the feeling went away. It usually lasted no longer than 30 seconds but it felt like forever. This didn’t happen a few times, it happened several times an hour, all day everyday. My leg and arm would move (or not move) on their own and it started to worry me. Dr. Danner had his office staff call in an appointment for me with Dr. Sunil Reddy, an awesome Neurologist in Tampa that could take a deeper look to see if there were possibly any other neurological issues going on.
After more MRI’s and tests, stroke and seizures were again ruled out and Doctor’s suspected that the spasms I was having would eventually go away on their own.
Where I Am Now
Today I experience less migraines and the spasms in my arms and legs are few and far between. According to my Neurologist, these spasms are believed to be linked to Transverse Myelitis, which is inflammation of the spinal cord. This was determined from a neck MRI that I had that showed some scarring on my spine. Sometimes Transverse Myelitis can progress to MS however sometimes it is a one time event that can heal on it’s own. After several brain MRI’s, my Neurologist does not see any lesions or scarring on my brain and does not see an area of concern there. My next order is to get an MRI of my spine and we will monitor and make an action plan based on the findings.
I am under careful evaluation and taking note of any changes or progression through my symptoms. I have been going to my Neurologist at least once a month and just finished my weekly physical therapy appointments that lasted 3 months.
I still have no idea what triggered all of this and if they are related in any way. Did my migraines progress into something more which caused these other symptoms and issues? Was something lying dormant and now decided to progress as I got older? How does your spinal cord even get inflammed? Is it something I did??
I’m still learning and I think that my greatest lesson is that I won’t always have the answers right away. I know I’m not giving up, and all of this taught me that I’m more of a warrior than I realize!
I am writing this because I hope to help someone that may be going through something similar, just as Jen and “The Dizzy Cook” helped me. When all of this started, all I could do was think of how much I wanted to write about my experiences for this reason. I wish that I could have given you a full synopsis of what I was experiencing in live time, but things progressed so quickly that I seldom had time to process them fully, or the energy or brain power to do so.
I’m sure I left out a lot of details. Like me crying every night wondering why this was happening and if I would make it through. Crying because my arm was too weak to move so I had to teach my 7 year old how to wash her own hair. My husband having to physically hold me up to walk and take a shower because I was too dizzy to stand. The lack of confidence I had making eye contact with people, in fear that they would see my eyes darting from side to side or trying to focus. Wondering if people were whispering or thinking I was drunk when I stumbled to walk at my daughter’s Gymnastics class or my son’s Taekwondo class. Seeing more Doctor’s, nurses, emergency rooms and Specialists in the last 4 months that I have in the past 5 years. The time, money and MEDICAL BILLS I have racked up since this all started.
This journey has been humbling and frustrating, but I’m happy that I am stronger now than when I started. I’m not completely out of the woods yet but with prayer and determination, I have faith that I will make it through!
I hope that this has helped you in some way and I look forward to sharing more of my journey with you here. If you haven’t already, please check out my blog post on my recommendations for dealing with migraines and subscribe to my YouTube channel where I will be opening up about my health. I share more about my journey as well as health and wellness tips on TikTok too.
Stay encouraged and stay positive friends.
With love,
Jennifer.
