USS Vertigo

Hi, friends.  The cold virus I caught two weeks ago triggered a severe relapse into vertigo now going on week three. It’s a long story, but this is my 4th major bout in 7 years, the others each lasting anywhere from 2-3 months to over a year. When this one hit dead on with the cold, it prompted me to look back at my history to see the timing of the prior bouts.  Each was within 4-6 weeks of having been ill with either a cold or the flu.

The first bout in 2010 came after recovering from a chest cold. At the time, my primary doctor brought up labyrinthitis, which is basically swelling and inflammation of the inner ear (the labyrinth) where balance is controlled. I was told there wasn’t anything to do but let it run its course. It eventually went away after about 3 months, as is typical for viral labyrinthitis. I was not given any kind of vestibular rehab to retrain my brain. I went about life for the next couple years, better but still motion sensitive to certain triggers or environments.

The next bout hit in December 2012 about a month after the flu. Naturally, it was stress-inducing to be back in that horrible place. After many ups and downs with different doctors that year, it came to be suspected that vestibular migraine may be the culprit given my complicated symptoms, an MRI showing pinprick lesions that can be caused by migraine, and my past with classic headache migraine and my mother’s history as well. So, I gave up asking for help and felt I had to just deal with it on my own by avoiding triggers. I had one physical therapy session where he said since it was likely neurological there was nothing he could do for me. Quite a let down. So I never went back.

I went through the next few years status quo, not normal, not able to run or bike or swim without risking vertigo, or tolerate certain motion-rich environments, but trying to keep moving anyway.  Had stable periods, and moments of flares, but nothing like the acute bouts are in the first several weeks.

As some of you know, I had another bout over the summer, about 2 months long that more or less subsided by September. Then I had the rash of heart palpitations for the last 7 months, likely from the back to back stress events of the year. Those had finally slowed down almost entirely and I was feeling my old self starting to emerge, when I got sick with this cold and the vertigo hit.  Yes…I have said “Just shoot me now.” many times since.

It prompted me to ask for a new referral for vestibular therapy when I realized there’s a chance this is labyrinthitis and could possibly benefit from seeing a vestibular therapist regularly.  I found one online, who is not near me, and does not take my insurance, but was like an angel on the phone acknowledging all of my symptoms, was pissed at my neurologist for dropping the ball, not happy with the medical management, or lack thereof, I’ve been experiencing.

She is a highly trained, and extensively experienced vestibular therapist who deals with tons of people like me. She specializes in things like vestibular migraine and labyrinthitis.  She’s an action-taker like me.  She actually apologized for not having met me until now, wishing she had been able to see me years ago to prevent this getting to this point.

She administered many tests, and yet still didn’t do a couple that would have involved vigorous head-shaking because it was my first appointment and she didn’t want to send me off the cliff. She did a special test with black-out goggles and was able to detect nystagmus, involuntary eye jerking which is a telltale sign of vestibular disorder, and said, “No wonder you feel so bad!”  It records on video so she can study it and pass it along to other doctors on my case.

She believes I have vestibular migraine and suspected labyrinthitis that kind of flare up and aggravate each other, and/or some other inner ear damage from prior episodes that were not treated properly so that my brain could compensate fully. And so now, if a bad cold or flu, or some other trigger aggravates it, it can decompensate all that my brain had done to fine-tune and recover from the other bouts. So, basically, I need my brain rewired which will take a long time, money, and lots of uncomfortable work.

It is incredibly hard to function when I feel hungover all the time, when the house tilts under my feet, when I feel like I’m adrift on rough seas. Ironically, sitting still and not moving is one of the worst things you can do. The brain needs movement in order to compensate, so staying active is imperative. I’ve been trying to continue driving and walking the lake every morning and doing gentle yoga.  The two things I learned from the prior bouts was to stay moving and to try not to let anxiety kick in or it throws the symptoms through the roof. That’s tricky when the brain’s autonomic response to not knowing where you are in space is to panic and shoot adrenaline through your system, but I’m doing as best I can.

Next, is trying to get back to the ENT for tests to see if they can tell what’s going on in the inner ear. I saw him back during the second bout, but unfortunately the appointment happened during a rare period of about 5 days where symptoms lifted only to come back after the appointment. So he didn’t do any tests. Maybe now that I’m symptomatic he can see me again.

My apologies for not being here much, or reading much as screens, lights, sounds, basically everything bothers my brain. I will try to catch up in time.  Just imagine your worst hangover ever, but waking up that way every day, 24/7.

I know it will ease in time, as I’ve been here before, but I know it can take weeks to months. Hopefully, faster this time, and with help of vestibular therapy perhaps I can eventually work my way back 100% so I can reduce the chances of a random cold throwing me so far back in my progress. I’d really love to have my life back.

Thanks for your understanding and steadfast support!

Love, Em


27 thoughts on “USS Vertigo

  1. Oh, Em… what an ordeal! I sure hope you’re in good hands now and it sounds like you are. One of the worst things that accompanies difficult to diagnose conditions is the ‘throw up your hands mentality’ of some practitioners. But at last it sounds like you have an advocate. Wishing you love, peace and healing my friend! ❤️❤️❤️

    Liked by 1 person

  2. Love you so much, Emily. I really hope it fades as quickly as possible. I’m so sorry you have to go through that. I am extremely sensitive to motion sickness and the older I get the worse it seems to get.

    Truly sympathize with you, Lady 💙

    Liked by 1 person

    1. Thanks so much, Eric. I could never end my own life but can empathize with those with chronic issues like mine, especially neurological, who get to the point where that seems like the only relief. That’s how it feels. But, I’ve stabilized before, I believe I will again in time. It’s a fucking curse and a long road.

      Liked by 1 person

      1. Yes, you are! And I can’t even imagine the strength and courage it takes you, to walk the path where you are. So a little wish and a little prayer – to give you more of what you need to get you through this path.

        Liked by 1 person

  3. Jeeeeeeeeeez, Em. That is horrible. However, I got to know you as an strong woman, so will get through this. Just listen to your body, fight when possible, give in when needed.
    Sending you a big enormous hug! XxX

    Liked by 1 person

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