I’m a 30 year old male in the US.
I feel like it’s finally time to post since this has really been upsetting me since it has changed me. I apologize if this post is long. I have only received 2-3 migraines ever in my life until now.
I wish I could go back and avoid what I did cause I’ve been dealing with this issue since May 29 2017 partially on my own doing.
This all occurred may 29th (Monday) at night. It created vertigo/dizziness/imbalance since I took a THC edible which created for 6 hours or so of panic, anxiety and vertigo the entire time + threw up 4 times.
I stayed out of work the entire week and went to the doctor June 1st for dizziness, got antibiotics for 14 days and was told double ear infection and fluid in both ears (just examination, no tests to conclude infection). I was fine with antibiotics, could walk around at night no problem until the antibiotics were done, towards the end of the antibiotics I was getting some slight ear pain in both ears intermittently not at the same time… and it kept feeling like fluid was coming out of my ears. On 6/19 due to dizziness during work I went to my primary GP, prescribed 10 more days of antibiotics and said both ears were clogged. 6/20 is when the night time issue started of dizziness where I couldn’t walk around at night in the dark, I believe.
6/21 woke up with dizziness / imbalance, went to my primary GP and he said still double ear infection, and fluid in one ear … Saw my (ENT) 6/23, said no ear infection, no fluid and to stop antibiotics. I think, but can’t remember but sometime then my left ear started to block up/fullness.
Saw my 1st opinion neurotologist on 6/30, did hearing test/VNG, when audiographer put headphones in my left ear it felt very sore/somewhat painful. It was then I noticed the fullness in my left ear felt worse. Doctor said no ear infection, no fluid, possibility of MAV. This I believe is when I noticed the tinnitus in my left ear starting. This is also when I noticed at night when in the dark I’d see white noise.
July 1st watched fireworks at brother’s house and my left ear hurt a lot from the boom (about 50 feet away). Created vast amounts of dizziness/extreme imbalance which got worse after about 10-20 mins which occurred for hours. I ended up driving home immediately after the initial 20 mins which made me feel okay while driving, then when I got home an hour and 20 mins later I felt the residual anxiety/fear and the motion sensitivity.
After that I went to my primary GP for an MRI to ensure I had no issues like tumors, etc. Came back fine.
Went for a 2nd opinion. On July 31 My 2nd neurotologist doctor had me do the VNG like the first did but also a caloric test (air) was included. He gave me a huge packet on MAV and he also told me to try magnesium and B2. I tried both B2 and Magnesium that night and had the WORST vertigo like it was day 1 again of the full spinning. It took me about 7 days to fully recover again from that. Each day I felt like I was very motion sensitive and had to sleep earlier or I’d get even more dizzy. 1 week later 8/7 I visited my neurotologist and neurologist. The neurologist checked my caloric test and then said I had a slight weakness in my left ear by having me walk in place with my eyes closed and noticed I turned to the left. He also believes this is MAV and said to try the B2 again. He said the magnesium sometimes has an effect on people to give them vertigo. I had been viewing this website since sometime in Mid-Late July or so and realized there’s a lot of people with this. I asked the neurologist how long this will be and he said it will be forever. I said the site I visit there’s people with success stories. He said, I can’t speak on that matter. He wants to see my audiogram from the other clinic to ensure it’s not Ménière’s but does believe it is MAV. The neurologist said he would see me again in 2 months.
As of a week ago I was laid off from my job and I finally titrated to 400 mg B2 3 days ago. With each 100mg I went up I was very motion sensitive for a couple days, brain fog and just felt off.
I noticed as of a couple days ago to a week ago the intermittent pain in my ears that happened maybe 6-12x a day has decreased or entirely went away some days.
Today, 8/19, tonight I was out at a brother’s house and I was starting to get that anxious, fear, visual disturbance and as if the room wants to spin and as I walked it felt as if the ground was pulling back and forth. I got in the car and drove for awhile. I feel at ease as I drive while in motion even if I have the anxiety feeling. I don’t notice any shifting.
I guess I don’t have the true vertigo of the rooms constantly spinning like I have read about, but i get the feeling of the room wanting to spin, the fear/anxiety and the motion sensitivity. I noticed taking a shower is not a fun task either cause if I’m feeling motion sensitive it picks up immediately and feels like the walls are topsy turvy.
I’ve attempted the migraine diet as of 2 weeks ago and now doing the B2 as well, but still feeling a bit off.
I do remember I was waking up every night in July like clockwork around 1-2 am even if I went to bed at midnight waking up with an anxious feeling and as if the wall wants to twist but don’t. More a visual disturbance. The disturbances would occur for about 20 mins usually, so I would read on my phone (usually this forum), then try to go back to sleep after it eased. I did notice that my head is usually warm most of the time since the first occurrence now.
I want to be one of the people in the success story page to know I’m better because since this has occurred I haven’t drank alcohol, I stopped trying to date and I haven’t even gone out with my friends cause I’m unsure how I’m going to feel.
I feel at my wits end and helpless like I won’t be normal. People see I’m laughing and “managing” but I don’t feel like me. I’m not even bringing in money now to support my own self and my own place. This feeling is very scary.
I feel for all of you with this issue and would like us all to be in the success story section to know we can overcome.