Journey On! My Journey Living with Vestibular Migraine

“She was unstoppable, not because she did not have failures or doubts, but because she continued on despite them.” -Christine Caine

Age: 43

Diagnosis: Vestibular Migraine

The Beginning

“Looking back now…my journey began 11 years ago on July 14, 2011. Little did I realize on that day my life would change forever. I remember having a history of bad headaches on and off since college…but now, more recently, I began to experience horribly intense ones… much stronger headaches that were definitely migraines. I will always remember the afternoon of July 14th when I was at work and a co-worker offered me a couple tablets of a generic ibuprofen to help combat another reoccurring and rapidly developing migraine.

I was able to complete the day and left work as usual and wanted to make a quick stop on the way home and visit my parents. I still had the headache and knew it would take only 30 minutes to drive there. I was totally wrong. It took much longer. A patchwork of traffic and construction detours resulted in a frustrating roundabout route further lengthening my driving time and prolonging the constant throbbing pain of the migraine.

The Attack

Finally, I was very close to reaching my parent’s home. I approached and came to a stop at a traffic signal. Suddenly, without warning…something overwhelmingly powerful and horribly wrong took hold of me. There was the sensation of being aboard a ship and tossed about in a violent storm. I became very dizzy and extremely disoriented. I was very close to my parent’s house and feeling desperate…I had to make it there.

My heart was racing. Was I having a heart attack, a stroke, is there something wrong with my brain? I never felt so many new sensations at once. It was terrifying. I struggled to remain in control. I was not able to drive up the driveway and just parked in front of my parent’s house and somehow slowly, carefully walked to the front door. My parents were waiting. I told them something is wrong… I don’t feel right… I need to lie down. Lying down on their couch didn’t help. My husband came and picked me up and dad drove my car home. I arrived at home…still not feeling right and went directly to bed. My only thought was all I needed was a good night’s rest and I’d be fine in the morning.

My world had changed

The morning arrived but I woke up feeling like my world had changed. I felt so off, as if I’d been drugged, there was an “out of world” feeling, a sense of “brain fog” a distortion of all my thoughts. My vision felt uncomfortable, strained, and I had difficulty concentrating. My legs were so shaky accompanied with a sense of balance that was way off. I looked outside. The sun appeared so much brighter than ever before. Any body movement felt exaggerated. At times washing my hands at the sink or taking a shower… I felt that everything around me was bouncing up and down. It made me feel so sick. When I sat still… I felt motion; a constant perpetual rocking…like being on a boat.

Sometimes, if I initiated movement… I felt somewhat better… but then stopping brought a return of motion dizziness and an overall sense of feeling ‘out of it’. I could ride in a car but was unable to drive. When I tried to focus on an object…I would be immediately dizzy. Little did I realize I’d be experiencing these unending symptoms for the next three years twenty- four hours a day.

My first thought was the possibility of a brain tumor. Nausea and anxiety were suddenly triggered which I never experienced before. Some head pressure and tightness were also felt but I had no headache pain. It was as though a light switch had been switched from having headache pain to dizziness and all the other awful sensations that came along with it.

Tests and more tests

Over the next few months and for a year; I visited my primary care provider, a neurologist, an ENT, an eye doctor, a physical therapist to do VRT (vestibular rehab therapy), a behavioral vision doctor, a chiropractor and a neuro otologist. My primary doctor thought I had anxiety and referred me to a neurologist for an MRI and CAT scan. All the test results came back normal. Even the parts of my inner ear canal were completely clear. Yes, of course, I was relieved but that just let me fall deeper down the “rabbit hole” of not having found any answers. How could all the tests come back normal…when I felt inside like I was dying!

After having my vision checked…which was normal too; I continued on working with my medical team. Thank goodness for the support of my family, who cooked for me, chased after my son when all I could do was lie down. They drove me to all my appointments and offered constant encouragement as I struggled in the depths of my unknown, undiagnosed condition.

I began to develop feelings and emotions that I never experienced before. Emotional feelings that were so real and raw. I felt so broken, scared, confused, angry, sad, hopeless, and nervous. All this anxiety was developing inside of me because my body literally couldn’t determine its place in space and time. I started to question my judgment and sanity in this experience. Was I dying? Was I losing my mind and going crazy? What was happening? All I could think about was my son and husband… and how I was failing them as a mother and wife.

Medication was a major decision

I was still in a desperate place and I began to realize I needed to try a new approach…a medication might be the answer. This was a major decision for me. I was always very reluctant to try any medication. I never needed any kind of drug assistance before. I didn’t feel at ease as the doctors presented a list of possible prescriptions containing anti-depressants, beta blockers, anticonvulsants…all these medications sounded so serious and heavy duty. I was really concerned about being able to tolerate them.

I went to another neurologist who prescribed an antidepressant. I was willing and agreed to at least try the treatment. (Keep in mind, 11 years ago vestibular migraines were not known as now.) However, I didn’t know I’d received a prescription with a very high first-time dosage. This didn’t go over well at all! I took the medication at bedtime and it literally knocked me out and needed to spend the next entire day sleeping on the couch. I also experienced a ton of side effects. I was quite put off by taking the drug and decided I must find a way to survive without meds.

New approaches

Eventually, I was introduced and able to start a (VRT)Vestibular Rehab Therapy program. This was good. The exercises helped slightly but did not take away the 24-7 symptoms of the rocking, motion of being on a boat. Next, I scheduled an appointment with a behavioral vision doctor who introduced a series of eye exercises which really helped a lot in my recovery. At least, I was able to work part time and do most activities… just not driving. Three years passed. Somehow the symptoms were reduced And I entered a four-year remission.

Another Remission and a return

I now call it a four-year remission. However, at the time I thought I was completely cured of this illness forever. It was a wonderful four years! I was completely normal, working, traveling and going about daily life. I never thought I’d work in a classroom setting again but now was able to. Life was grand and I was grateful in every way.

In January 2018, I developed a strange stomach illness and had difficulty eating and remained nauseated all the time. I was hospitalized twice and given a bunch of intestinal tests and found everything was normal. Although the nausea lasted a good month and a half…I began to heal again. Looking back, I believe it may have been another form of my migraine… transformed to a stomach symptom.

It’s back!

In March 2018 after a fun filled trip to California with my family… I returned home and felt some dizziness and “feeling off” again. The feeling would come and go over the next month. By early part of May, I was having an increased number of symptoms with ever increasing severity.

I had some intermittent pain initially… then it just completely morphed to everyday dizziness, quick spins, constant head pressure and tightness again. I was not able to go inside any stores or ride in a car without feeling completely sick. This time around the symptoms were much more severe. I would go to a doctor’s appointment and after riding in the car would need someone to help me walk to the office. I was so dizzy. I knew this time around I had no choice. I needed to retry a medication.

Introducing a low dose medication, VRT… and more challenges

I began a low-dose of medication and saw good results. However, after six or eight weeks a decision was needed to either increase the med dosage or try a different medication altogether. I returned to the VRT program again. The exercises helped briefly but the symptoms would always return later with more of a vengeance.

Now things really returned for the worse again. I would remain ‘anchored’ to the couch for several months not able to leave the house and at times not able to walk any distance without dizziness. At this point in the game is when I tried a newer medication and again initially felt better. But there were still have bouts of difficult times leaving me feeling completely debilitated. I would go through cycles of months where I’d be great… almost normal and then months when I couldn’t get off the couch. It became a continuing and repeating cycle.

2020

I had some major healing going on in 2020. I was pretty much symptom-free that year and began driving again…doing pretty much everything normal!

2021 Challenge after challenge

It’s January 2021 and the symptoms return… and for the worse. Here we go again! By May following months of steroid use my anxiety level became sky high. I was in a dark place again after several ER visits and being told no one could help me. My neurologist office said I was maxed out on treatments and there was nothing they could do to help me. I really lost all hope. My symptoms and severity were worse than ever and no one could pinpoint why my treatments weren’t helping. After again seeing a few more doctors including a migraine specialist and a natural doctor; I still didn’t have the right answers. At times as a patient; I didn’t feel like I was being taken seriously. I even had a nursing staff member mock me when I called for help. I literally didn’t know what else to do because the ER couldn’t help me either. My vision was affected so severely that I couldn’t look out the windows of my house. Watching the leaves move on a tree made me physically sick. If someone would place a water bottle down in front of me…seeing the liquid move back and forth would make me sick. That’s how sensitive my vestibular system was. I was housebound for one year. I also couldn’t do any of the therapies that helped me previously in the past.

Today, A Breakthrough…I’m starting to heal…for real!

Currently, I am still on ‘The Journey’. However, after finally finding the right doctor to help me. I am truly starting to heal. I began a new medication and have been doing things that I couldn’t do for an entire year. There is definitely still the ebbs and flows of the illness but I’m on the right track. I don’t believe it was just one specific thing I did that made the difference. It took an entire village; populated with varied medical advice, physical disciplines and medication. The things that I believe have helped me are my faith, counseling, medication, VRT, light therapy, eye exercises, an HYH diet (Heal Your Headache Diet) and exercise. I take walks outside when I can. Also, going into stores now is part of my visual/vestibular therapy.”

Where I’m Headed Now…I want to help you!

I would like to be an Ambassador with Veda and educate others on vestibular disorders. I also want to “be there” for patients that have this illness and feel as if they are all alone. I don’t want anyone to feel how I felt; so completely alone and isolated. I want to be there and help others in their vestibular journey.

We are all warriors in this battle! You are so much stronger than you think. When you feel weak, you are really strong. Every day that you get out of bed and your feet touch the floor, it is a win! You are fighting! You are strong …never stop fighting! You are worth it and you are not alone!

I am still on this journey. I imagine I will be for the rest of my life.

If I’ve learned anything along the way so far, it is that I am a stronger person than I ever thought. I see the world and living life in a whole new light and my faith is growing and stronger than before. I am a fighter and I will keep on fighting and keep educating others and providing awareness about Vestibular Migraine. Until then… I will journey on!