Vestibular Migraines: Vertigo, Pressure, Nausea
Imagine feeling like you're on a boat, rocking back and forth 24/7 when you're sitting still on your couch, walking, trying to function at work, sleeping, spending time with loved ones, exercising, and just trying to live your life.
This is what I experienced about 5 years ago in 2016. A vestibular migraine.
I typically am a very positive person, but here's some real talk for you before we get started. This was an absolutely terrifying and anxiety-filled time in my life. I had no idea if I was ever going to get better. The symptoms I experienced with all of this made me cry multiple times a day and experience gut wrenching anxiety that I never EVER want to experience ever again.
My migraine symptoms didn't last just a day or so, mine lasted about 6 months. Constant dizziness, constant rocking, nausea, anxiety, and nonstop pressure in my head.
I'm not sure how to even start describing this experience of my life, so I decided to give you my timeline of symptoms (which I eventually handed to my neurologist).
This timeline is what also helped me get a diagnosis (which took a very long time) and put me on my path towards healing.
Here. We. Go.
November- I started seeing a clinic doctor for dizziness concerns. I would get out of bed and feel out of it and dizzy. The dizzy spells were happening on the weekends mainly and first thing in the morning. They lasted less than 10 minutes.
November - On November 20 I woke up and was very dizzy for 15 minutes. Very exhausted the rest of the day. Nauseous, sweaty, and had the chills frequently. Following this day, I started to feel a lot of pressure in the back of my head and felt like I was in a daze.
Around November 24/25- I began to have a constant rocking feeling. Started taking Bonine for motion sickness. It did nothing. Would often feel zapping or tingling in the back of my head. Saw dots frequently and my eyes had a tough time focusing. Around this time I noticed my right eye was very blurry in the distance.
*Went to the wellness center twice- My blood sugar was brought up and orthostatic hypertension. Got blood work done- everything came back normal.
*Went to Parkview walk-in clinic and did an EKG. All came back normal, which is a blessing. They gave me a motion sickness patch that did not help.
*Went to wellness center in late November and the NP thought I was having a migraine. She has the same kind. She prescribed 3 meds. One seemed to help, but it was not the right combination.
December- The first week of December the symptoms were the strongest. December 2 & 5, I had to take work off. I could barely walk. Difficulty focusing and nauseous every morning. I also learned that I could stop the dizziness for about 10 seconds if I would push on my eyes. It was all so bizarre and scary! I was taking medications at this time that still were not helping.
*Early December- Went to the ER due the constant feeling of dizziness and rocking back and forth even though I knew my body was still…I got an MRI. Everything came back okay. (Another blessing!)
*December 7- I went to an ENT. He told me I was just having and inner ear disruption and it should go away in 4-6 weeks. (Not what I needed to hear considering I was so sick and still feeling constant rocking. Waiting one more day for it to go away felt like torture, but 4-6 weeks?!)
*I continued feeling like I was on a boat all December. The pressure in the back of my head became very strong and sometimes it would show up in my jaw area. My ears would pop and feel full. I started getting really painful headaches around this time too. Pain would peak through but did not last long.
*December 9- Began chiropractic treatment this day. Felt a lot of relief after the 4th and 5th appointments. Still felt like I was on a boat but it was much less severe, and I was getting a lot of relief from the rocking sensation in the evenings.
January- Still having ongoing symptoms of rocking, head pressure in back of head/jaw area, very small spurts of pain in my head, eyes are not focused and sometimes I see very small dots. Rocking symptoms go away when I drive but the pressure doesn’t. Rocking symptoms subside when I go into a very cold environment and come back when I walk into a warm building.
*January 3- I completed testing at the Balance Center, which lasted 3 hours. Truly one of the most horrific days of my life. They strapped me in a chair that spun in a circle and turned off the lights to "test" my dizziness. They also pumped warm water in my ears to create vertigo to test my eye movements. I was also put on a balance board that would randomly shift and drop. Miserable! I left this appointment very nauseous and with crazy-strong rocking. I was nauseous all night and felt like my symptoms got much worse after this test. I stayed the night at my parent's house for a couple nights after this, because I had such a hard time walking.
*January 5- Went back to ENT for results. He simply told me that I have inner ear problems and sent me to physical therapy and asked if I had any questions. So helpful, right? I told him about my anxiety with this and he decided to prescribe a diuretic to get excess fluid out of my head because he said I was so desperate for help. He made me feel crazy. Truly. I never ever want to experience this ever again. I wish I could go back in time and tell myself that I will meet some amazing doctors who will help me and to just walk right out of his office.
January 7- Started taking a new medication from a different doctor, and felt amazing relief after just two days on the medication. Rocking subsided a lot and I started having moments of normalcy.
January 10- Physical therapy appointment. I was told I had inner ear damage from a potential migraine. Will get medical neck massages once a week. I started doing daily exercises to retrain my brain to calm down the rocking sensation. The exercises helped immensely. (I still do them to this day!) Physical therapy was life changing for me. I gained back control of my life and my health. My physical therapist actually understood what I was dealing with, and got me on a path toward healing.
January 26- Eye appointment- Right eye needs prescription and I got glasses. Other than this, my eyes are healthy. Good pressure and optic nerves looked healthy. My eye doctor has been amazing through all of this too. So compassionate and genuinely asks questions to help me.
Feb 10- Neurologist Appointment- And here is where the healing process truly began. My neurologist found the meds to treat and prevent my migraines.
I started to truly heal once I got on the right combination of medications and amped up my nutrition, continued my physical therapy, and continued chiropractic treatment. I will say it took a while to get on the right medications. I actually ended up on one that made me hallucinate mid-sleep (yikes-it was weird), but the right combination was golden!
When the rocking sensation stopped and I had moments, hours, days of normalcy- I truly felt a new appreciation toward my health and my life in general.
In fact, I got so confident about my healing that I slowly stopped all of my meds (with my neurologist's approval) and unfortunately, the vestibular migraine came back with a vengeance during the beginning of COVID. Once again, I was scared, anxious, and so sick.
I healed again, doing the same things as before, but it was a truly awful experience the second time around as well.
I learned. I knew better, so I did better. Now I am not getting off of my meds unless there is a serious talk with all of my doctors. My mental health and physical health suffer greatly when I have these migraines.
Now that I can look back on this time with clarity, I can honestly say I’m thankful I went through it. It made me stronger, opened up my eyes to the importance of nutrition, and put a sensitivity on my heart towards others dealing with chronic illnesses. Vertigo is a very scary thing to experience one time, but to experience it 24/7 for months is something I would not wish on anyone. Ever.
If you or anyone you know has been diagnosed with a vestibular migraine, there are some things I wish I would have known:
First…act quickly. I found that going to the ER moved things along much quicker. If you have a referral to a doctor from an ER, you will get in much quicker. I wasted so much time waiting for doctor's appointments. If the ER refers you, you have to be seen within a certain amount of time.
Second…go to physical therapy for dizziness (my exercises and walks worked WONDERS!), find a good neurologist who listens, and get your eyes checked! (I found out I needed one contact for my right eye. Weird, right!?) I would also recommend going to counseling. The amount of anxiety that comes along with vertigo is horrendous. Managing the anxiety helped me heal faster.
Third…clean up your diet and see if you notice improvements. I was drinking too much caffeine and consuming too much salt. My neurologist believes these could have been contributing to my migraines. She also thinks I'm sensitive to weather changes. (And yep, I am!)
Fourth...follow The Dizzy Cook. Her blog is absolutely amazing. She has dealt with vestibular migraines and has done significant research on them after her experience with it. Lots of good tips, recipes, and a supportive community, because vestibular migraines just flat out suck and you need people surrounding you who get it.
Last…follow your gut instincts and do what’s right for you. I kept being told it was my heart, and my gut kept telling me, "No, it's something with my head. My head feels like it's about to explode with all of the pressure up there." It’s a scary and confusing illness, but there is a light at the end of the tunnel. If one thing doesn't work, there will always be another option along the way. You won't run into a dead end.
Products That Helped Me....A TON!
And to end, I'll leave you with this. I clung to my faith first and foremost but this quote was another one that I saved on my phone and looked at often.
Side note: If you see me out in public tripping or seeming a little clumsy, I’m most likely just having a dizzy day from weather or stress.🤷🏼♀️ My dizzy days last just ONE day now…thank goodness!
Thanks for reading!