First acute balance issues: early June 2020
Number & duration of acute phase(s): lasted a couple weeks with getting dizzy off and on. Seemed to be triggered by stress
Any suspicious physical event/trauma leading up to dizziness: Herniated disc in Neck
Start of chronic phase: early August 2020
Age at chronic onset: 34
Started medication: October 2020
Stopped medication: still taking
Number & type of consultants seen to date: 2 ENT’s, 1 neurologist, and 1 neurotologist
Diagnoses received (one I’m “running with” first): 1st ent said possible Ménière’s. 2nd ent did more testing he thought it was uncompensated VN. Neurologist thinks it’s migraine related. Neurotologist called it menieres syndrome.
Medications used successfully for MAV: 50 mg nortriptyline, gabapentin 300mg
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: Migravent 3x day, turmeric curcumin 1500mg 3x day ( seems to help )
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: none identified
Any hearing loss in either ear: was told left ear was slightly less than right, but that my hearing was normal ( both ent’s and neurologist)
Persistent or intermittent tinnitus and character: Persistent both ears since Aug 2020. Worse in left ear. High pitched, volume fluctuate from very loud to barely noticeable
**Other chronic conditions I’m suffering from
Medication I’m taking for other conditions: turmeric curcumin 1500mg 3x day
Any personal history of migraines: neurologist diagnosed silent migraines in 2014
Any family history of migraines: mother, sister. Aunt
Any history of ear problems: no
How did friends, family, and doctors react to your symptoms?: family is supportive, especially my wife. doctors don’t really seem to care very much, (at least the doctors I’ve seen)
(Your current state)symptoms have improved very much since starting medication
What’s Gone: (what symptoms you had but no longer get) blurry vision, muscle spasms above ears, felling of walking on marshmallows, Tingling face, smelling things that aren’t there,
What’s Ongoing: (what symptoms you still get)tinnitus, off balance feeling, pressure at bridge of nose and back of head, ear fullness,
My Worse Day Now: (description of the worst day you get now) loud tinnitus, brain fog, ear fullness
Mid June 2020
It started with several episodes of dizziness and pressure in the back of my head. Then one day I was under a lot of stress at work and I became very dizzy and had a feeling of pressure in my head. I felt like I was going to faint. I went to a clinic near me, while I was waiting in the exam room for the doctor I remember the light was really bothering me, I layed down on the exam table covered my eyes with my forearm, I was still really dizzy. I somehow fell asleep for 15 minutes or so. When I woke up I felt fine. Doctor said it was migraine or some type of tension headache.
Late June 2020
Started getting pressure in head like it was going to explode, seemed to be relieved by popping my ears. Seen ent, he said it was sinus problems. Started having neck pain that increased over the next several days to severe pain. The dizziness seemed to be related but I don’t know. I went to the ER, they did an x-ray. Said everything looked good and gave me a steroid shot and sent me on my way. Followed up with my GP the next to see if he could order an mri of my neck. He said, I didn’t need it, and prescribed be a high dose of nsaid to take for neck pain.
After several weeks of taking the nsaids. I developed gastritis and esophagitis. I lost 25 lb in 3 weeks and had to have my gallbladder removed. The gastro dr said that it was caused by taking the nsaids after having a steroid shot. ( lesson learned). I dint have any dizziness or pressure during July
Had mri of neck that showed herniated disc. Started physical therapy for neck. I started having ear pressure and a feeling that fluid was draining from left ear. several days later the tinnitus started in both ears. Started getting blurry vision and dizziness with nausea. especially if I was in a supermarket or other large store. It’s like everything blurs together. 1st Ent said it was “possible menieres”. He didn’t give me any meds to try.
All of my symptoms had become 24/7. It became difficult to function. All I wanted to do was lie down every chance I could.
2nd ent ordered caloric testing and ecog. Caloric showed 41% left side weakness and mild left bearing nystagmus. Ecog was .37 left ear .31 right ear. The Ent said I did not have menieres and that he though it was VN that hasn’t fully compensated yet. But he wasn’t sure he just said that my Test results “ didn’t make sense” And that if i still had problem in a month he would refer me to a neurotologist.
Had a microdiscectomy to repair herniated disk in my neck. The pain was not getting any better with physical therapy. At the time I thought that it was cause of my dizziness. A few days after surgery I had a severe vertigo attack. Luckily I was at home. I made an appointment with a neurologist that I had seen in 2014. He thought it could be migraine. He prescribed nortriptyline 25mg.He also prescribed gabapentin 300mg to take before bed to help with Nerve pain.
Upped my nortriptyline to 50mg. Still taking the gabapentin. After a few weeks of that, I wasn’t having any blurry vision or nausea. My dizziness changed to more of an unbalanced feeling, my tinnitus seemed to have gotten worse. I started the MAV diet. I eliminated cheese, chocolate, caffeine, and msg from diet. The tinnitus seemed to improve ( still loud at times).
I’m slowly getting back to normal work schedule. Though I feel a lot better I made an appointment with a neurotologist. I didn’t want to just assume I had MAV. I made the 4 hr drive to see the specialist. He looked at my Test results from the ENT. He diagnosed me with “menieres syndrome” based on my 41% left ear weakness and .37 Ecog for my left ear. They also did another hearing test. The testing showed no hearing loss. He said I didn’t have migraine because I didn’t Have headache. I told him about the pressure between my eyes and back of my head. He just told me to try a diuretic that he prescribed. And come back i 1 month. I’m just feeling frustrated now because I don’t know if I have migraine, menieres, or both.
Start of Journal
Today I …