I will start with background pmh, then tell my vertiginous migraine story.
I am a 32 year old female with past history of menstrual migraine with visual aura onset age 12. I have significant family history of migraines (grandmother, mother, and both of my brothers). I have no personal history of motion or travel sickness, however my mother and both of my brothers get motion sickness easily. As a child before menses I felt ill with headache and would vomit after eating chocolate, hotdogs, sausage, or pepperoni pizza. As an older adult I realize all of these items trigger migraine in me, so it is quite possible that my migraines started early on.
As a younger adult (age 20) I was diagnosed with interstitial cystitis or painful bladder syndrome. They tried medication including a bladder diet, prelief before meals, elmiron, elavil, and bladder instillations. Nothing helped and I remain with urinary urgency and frequency. At age 25 I developed horrible stomach pains and diarrhea bouts that would land me in the ER for rehydration and was diagnosed with irritable bowel syndrome. They treated me with immodium, lomotil, hyoscyamine, and questran powder. This resolved on it’s own after about a year and has not been a problem since. At age 29, I developed painful joints bilaterally with rash and fatigue, with ANA blood work titer 1:640. At this point I am diagnosed with undifferentiated mixed connective tissue disease. I tried many medications (lyrica, doxepin, advil, ultram, cymbalta, neurontin, plaquenil and elavil) without relief. What I do know is that I used to run and hike and be extremely active and the joint pain and fatigue brought my exercise and activity to a halt. I remain with bilateral symmetric joint pain in my legs.
In August of 2013 I attended an international emergency medicine conference. This involved flying to Barcelona, and a week long cruise. On the third day of the trip I developed dizziness in a perfume shop in Eze. It was 102 degrees, about 3pm french time, and the dizziness lasted 15 minutes. I chalked it up to dehydration, being on a boat and now a mountain top, and smelling hundreds of lovely perfumes. The next day in Florence the dizziness hit in a gelato shop and lasted 15 minutes. Again I chalked it up to heat, fatigue, and crowds of people. The next morning in the shower on the cruise ship the dizziness recurred and was constant, like being pulled to the right. Nausea and vomiting ensued. The rest of the trip was quite awful for me, as was the flight home, and car ride from the airport. I took meclizine and benadryl without effect. I started vomiting for 2 days upon return home and remained dizzy and imbalanced.
At first, the doctor thought it was fatigue from international travel and motion sickness, and I took zofran and meclizine with no relief for a week and a half. I remained constantly feeling like I was being pushed to the right, which in turn made me nauseated. I went back to my doctor, who noted nasal congestion and right facial pain on exam and diagnosed me with sinusitis. I was put on 14 days augmentin, decongestant, and flonase. In 2 weeks I remained dizzy and my right face had a “just got punched” feeling. I also developed right ear pressure with intermittent sharp pains. Back to the doctor who said sinus infections are hard to treat and was started on additional antibiotics and a steroid course. No relief. On to another doctor who diagnosed me with “spinny”, then middle ear infection, then chronic sinusitis, then allergic rhinitis, then bppv, then sent me to a dentist “to evaluate for dental abscess”. After the dentist replaced a crown, found no source of infection and no tmj to explain the dizziness and facial pain I switched my pmd to UCLA as it was now November and I was constantly dizzy. I was starting to get scared.
My doctor at UCLA did a hearing test, found decreased hearing low pitched frequency on the right side. He referred me to ENT and neurotology, who did ENG, VEP, and about a thousand different tests for balance, vertigo, etc. At this point, I felt imbalanced pulling to the right, right facial pain like I was just punched, and right ear crawling and clogged like it was plugged or something was in it. I also developed difficulty focusing my right eye. This bought me a full optho workup, CT of my sinuses, and MRI with IAC views, all normal. I was referred to rheumatology and neurology. Rheumatology said labs looked good but CRP elevated, neurology thought not MS but might be migraine, recommended repeat follow up with ENT/ neuro-otology. Neuro-otology thought autoimmune and not migraine and wished me the best of luck but was unable to help stating “a migraine wouldn’t last that long”. ENT saw me again the end of April and said “resolved eustachian tube dysfunction” as my ear was now popping and hearing returned to normal, although the dizziness persisted.
At the end of April I developed a bronchitis and the dizzinesss instantly was gone. I had a wheeze, high fever, and cough and felt like a million bucks. I went to the doctor who prescribed antibiotics and steriods and said I was the dumbest person ever for waiting 3 days to see him. I told him about the 8 months of dizziness, facial pain, and ear problems and he said get back to neurology because I shouldn’t be dizzy like that, and that infection should not make me feel well. I politely thanked him with ZERO intention of going back to another doctor. I had about 3.5 weeks of normal life. I was back to the gym, out with my friends, and loving every second of being 32. I even planned a trip to Mexico. Little did I know…
May 25 I awoke with dizziness and vomiting out of the blue. This dizziness had with it a sensation that my right visual field was missing. I was unable to walk stairs, drive, or stand in the shower. I couldn’t see people to the right of me or locate items on my right side. I went back to the doctor who sent me back to ENT and neuro stating “it is your ear or your brain”. In the meantime awaiting my appointment I had to go to the ER, and was given phenergan and ativan to stop the vomiting. They recommended admission to the hospital but I came home and had my mother stay with me. The meds made me bedbound, but slowed the vomiting. ENT that week said possibly Meniere’s or endolymphatic hydrops and started me on diamox and elavil while awaiting repeat MRI with IAC (normal again). ENT then referred me to neurology and back to rheumatology as “the problem isn’t your ear”. Rheumatology said I was healthy but should see neurology because the dizziness was disabling and not being caused from an autoimmune condition. Neurology saw me and wanted MRI brain and spine to r/0 MS (also normal). I was diagnosed with virtegenous migraine with persistent aura and started on Namenda while awaiting a migraine clinic appointment. I had to take an unpaid medical leave from work due to dizziness, n/v, and visual deficit. At this point I felt something was really wrong with me and had a hard time believing this was migraine as I had no headache, and no migraine of mine ever lasted MONTHS. Was I ever in for a sad surprise.
In July I was seen by a neurologist specializing in migraine who started me on verapamil. My vision started to evolve as I regained the right lateral field but started seeing flashes of light and snow like tv feed in both eyes. My facial pain dissipated and was replaced with the sensation that my teeth were crawling. I know it sounds crazy but I would have ripped out my teeth if I could have. The migraine clinic doctor seemed pleased with this at my appointment in August and agreed to continue verapamil. She wanted me to continue to taper up and increase my activity and exercise. She also told me the migraine was unlikely to stop on it’s own as I had met the threshold and had a continuously irritated brain, so preventive measures were the best for me. I tried walking in the park and 2 attempts at stationary bike with immediate onset photophobia, frontal headache, and bright flashing lights. This was the first true headache I have had related to this and the maxalt did nothing to quell it. This had the dizzy back as bad as the worst, and I went back to ER after 3 days of unresolved headache for dizziness, nausea, vomiting, frontal headache and bright flashing lights in my vision then dark spots. They gave me decadron, iv magnesium, and phenergan. This rapidly resolved the dizzy and headache, but the bright flashes remained. The neurologist then added lamictal to the verapamil, which made me hoppy and paranoid. She also added Zomig to the maxalt, although this does nothing for my head pain, dizziness, or vision issues.
I went back to my pmd to discuss my headache as it is unbearable paired with the visual lights, dizziness, and nausea and I had to do something while awaiting my next migraine clinic appointment. I have had insomnia for many nights as the dizziness and flashing lights awaken me. Yes, they flash even with my eyes closed, and apparently are coming from my irritated brain and not my eyes at all. WEIRD. My PMD believes me to be anxious, depressed, and wants me to seek psychiatric care “for the mind body connection”. I know I am not crazy, and being dizzy without seeing right for months on end would make anybody anxious. Also, 32 year old people should be able to stand in the shower and walk in the park without being so dizzy they vomit and have to lie down. They also should be able to drive. I will make an appointment with psych hoping they can help me cope with the stressors of chronic illness (worried about future, prognosis, medications, employment, insurance company not getting medical records, disability paperwork, etc) As you all know, these things are nearly impossible for an ill person to handle. I am saddened there is a stigma on mental illness, and that crying at a doctor’s appointment after a year of ongoing dizziness is viewed as inappropriate. I have been bedridden many weeks now, and a good day involves taking a shower, bringing in the mail, and sitting on the couch. I have basically lost the life I worked very hard to build from this disease.
I have now just started depakote ER 500 mg daily and will increase to 1000mg daily this week. I am up to 240 mg verapamil. I am taking phenergan for the nausea. I supplement with coq1o 400 mg daily, b2 400 mg daily, magnesium glycinate 400 mg daily, b6 b12 folic acid lozenge, omega 3 epa and dha 2126 mg, and ginger 250 mg twice daily (for nausea). I remain constantly dizzy in varying degrees and the bright flashing lights and photophobia are constant since my ill fated walk in the park. I remain out of work on medical leave while anxiously awaiting the dizziness to stop. The doctors keep telling me they have never seen anything like this, so to read the stories here has literally brought tears to my eyes. I am not alone, and this is not as uncommon as the doctors would have me believe. So far the only triggers I can identify are heat (100+ degrees and shower) and physical exertion. Thank you for reading my story. It feels great to get it off of my chest in a non-judgemental environment. I am sorry there are so many with MAV, but take great comfort knowing that I am not alone
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