That's not vertigo

I just want to say I am so grateful for this support group. I feel like some of the experiences shared here are closest to mine than all of the corners of the web I’ve been to and the doctors I have accidentally ended up in arguments with especially about vertigo.

For starters, I’m 41F and occasionally had otitis media as a child. I remember hearing a ring in my ear as “my special tone”. The only thing that remotely comes close to the stories of vertigo I’ve seen as the textbook vertigo was five minutes of me staring at a lock on a gate that was going in circles in 2006. The next year I noticed when I tried to fall asleep sometimes I’d five seconds of feeling like everything was tumbling. But then I’d be fine. In 2018 I noticed the ringing that has always been in both ears much louder, almost like they are if I am about to faint, and the ringing lasted 24 hours. I went to the health clinic and they found nothing. In 2019 I started waking up with a rush of nausea and some disorientation if I woke up.

I had a cold for two days in Nov 2019 and flew on a short flight for Thanksgiving. In early Feb I rolled onto my stomach and felt the tumbling feeling in my head and it felt as if the bed could no longer support. Normally it went away, but I sat up and still felt funny in my head. I started feeling as if I was on a boat and would feel the weight shift from one foot to the other until it made me nauseous. I felt what reminded me of tingling molasses in both legs which seemed to determine which way the movement would be. If they tingled faster, the motion got faster. By motion I meant every minute of the day since that tumbling head I felt like I was moving. I had difficulty staying in a chair because I felt as if I’d fall over. I went to Urgent Care after feeling nauseous and shaking uncontrollably where I was told dehydration and that I had fluid in my ear they could see. I went home with prescribed meclizine and the couch rocked under me when I lay on it. I went to bed that night and it was like a free-floating spin, like I was sleeping in a tornado or going on a luge or roller coaster backwards. I literally felt like I was flying in a spiral or a gyroscope. The walls felt as if they were rolling by me in my spiral and the bed felt like a rotating waterbed or one that I was tied to one of those boards in magic tricks people throw knives at. I woke up vaguely seasick every morning since falling asleep was the only way to not notice the “vertigo” and for some reason I felt every turn, every, and rise of this warpy record motion in my stomach. The movement also speeds up, slows down, intensifies, weakens, but has not gone away in 8 weeks.

Yet, this is what puzzled me: I never saw the walls spin like the episodes of vertigo I’d heard. I’d feel them move in an oscillating manner, taking me with them, but the only time I saw the room swim was when I was dry heaving. I felt more like I was walking on a moving sidewalk and all the floors and chairs look tilted to me. If I sit on furniture I start to feel like I am moving in a loopy spring motion. My feet move in the direction of the motion. I tried a salty meal just to see what that did to this vertigo and felt my stomach spinning all the way around. Shopping is difficult for me as is standing in place because I start to feel the floor rotate and sometimes rooms seem too bright. I notice the vertigo gets worse in any situation that would increase my nausea like a hot room or a greasy meal. I also notice being strongly pushed into the spirals and pulled upwards. Often times the room I am in feels like it is flowing downstream on a river rapids. And sometimes the floor looks like it is swirling and I cut corners from walking straight.

My second Urgent Care visit was a different doctor and said it was ETD. She found a middle ear effusion, and it very well could be that. I will go back to the doctor’s when my state allows us to go again and it is safe. I am not looking for a diagnosis. My doctor has suggested BPPV but vestibular therapy Dix-Hallpike and Epley did not change the level of dizziness for me and my exercises don’t do much and the therapist says I don’t have BPPV. I got an MRI that showed fluid on the mastoid, but when I asked my doctor where it was in my ear she didn’t want to talk about that.

Since we ruled out serious causes my tinnitus has gone from 2 tones, to 5 tones to 7 tones sounding like a dozen TVs parked at railroad crossing with the bells and a drone that sounds like the fluorescent lights are on. I don’t have hearing loss but have a muffled right ear and have to ask myself if any new sound I hear is me or an actual sound. Lately, my stomach has been bothered by revving engines, especially bass playing cars. This morning the room was rotating in slow motion so I opened my eyes and saw it shifting. Working at home has been a real chore because reading on computer screens and sitting for too long tends to make the furniture move.

I write this (I know it’s long, but social isolation brings it out of me), but I just want to know if this is vertigo? I am not going to venture into Meniere’s until more time goes by and the full picture is revealed…or not. Because I get monthly migraines my arm chair diagnosis is possible MAV though the vertigo is 24/7 not episodic, but I have been told it is a cold and it will go away on its own. I know some of these things take 3 months to clear up; I just grow impatient. I suggested labyrinthitis and my doctor didn’t blink an eye and said ENT’s don’t even want to be bothered with patients unless they’ve had something going on at least 8 weeks. Most people think this is all my in my head and this is not vertigo because I’m not vomiting (never have in my adult life), I don’t see walls spinning even though I feel as though they are when my eyes are closed. And when my eyes are closed, the spinning can get very fast and I start feeling air blowing out my right ear. I also get warm and my heart speeds up.

Anyway, thanks for reading. All I want to hear is that I am believed and this is not “just all in my head” because I don’t know how I could possibly create something so uncontrollable.

Hi and welcome.

Vertigo is a false sensation of movement. It can be external is spinning walks or internal as in your sensation things are moving when your eyes are closed. Medics generally refer to it as being objective or subjective btw. Although some consultants do insist on the spinning walks kind as being diagnostic of MAV many others do not. The wall spinning external type is the more likely to cause vomiting or that is my experience. Helen

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Your symptoms and onset seem very similar to mine. Do we have MAV? Whatever its called, we have something going on and we can do something about it.

Vertigo and the symptoms we associate with MAV or Vestibular Migraine are all subjective, meaning that its YOUR brain doing something that is causing you to experience what you are experiencing. Not to say that you may have some condition with some other part of your body that your brain is now interpreting as “vertigo.” Your experience is real, whatever we call it. Getting to the cause can help with managing symptoms and possibly fixing the cause. All we can do is keep looking for answers by following various lines of inquiry. Try different interventions and see how they work for you. Life is an experiment, so practice good scientific method and explore all kinds of possible solutions, but keep it safe and get help as much as possible. Ask questions.

I’m currently onto the line of inquiry of how the brain creates a sense of motion, proprioreception, and then which physical rehab exercises I can do to keep my brain trained accordingly. Balance, movement, physical exercise, conscious balancing, wide angle perception, etc. Miranda Esmond-White has an exercise program called Essentrics on PBS and dvd that is good exercise. Also looking at Tai Chi as a rehab therapy. For me, something is clearly wrong with my brain, and as a addiction rehab counsellor, the brain is the bit that needs training. I use Integral Recovery practices for that which works well as a platform for brain training. I have also found the Heal Your Headache book to be spot on for me.

Your experience is very real, it is “in your head” and keep working on it, and be hopeful. Get support. You are not alone in this adventure.

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Hello and welcome

You are in the right place for help and support! I have been through a similar process - I think getting a correct diagnoses and getting the right medication is essential . Your experience resonates with me - I was told I had labyrinthitis (I didn’t, but I am not saying that you haven’t as it can cause many nasty symptoms similar to MAV and can take awhile to clear up) and ear crystals which I also didn’t have.
I also have tinnitus - only since this all started back in 2018 - the vertigo and dizziness have gone but the tinnitus hasn’t - hopefully it will go eventually, however, I seem to have got used to it.
I was helped by a neuro-otologist (neurotolgist in the USA) - I have recorded my experience in my personal diary - Jan’s MVBD /MAV Escapade, but basically was diagnosed with MVBD - migraine variant balance disorder.
As @Alderspruce has said your experience is very real so keep trying to get a diagnosis - I know this is hard at the moment now that we are all in lockdown, but keep going! Jan

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