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Going Chronic

That’s great advice. I think this time around is really traumatic for me because I was doing so well for a long time and now it turned chronic after a relapse I had

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I’m sorry it’s gone chronic. Chronic is a bitch. But that doesn’t mean it can’t be wrestled back under control. Be conscientious of triggers and keeping your thresholds up. Try a new med. Be patient. I’ve tried as many drugs, devices, etc. as anyone here. Have been chronic since 2017 but episodic for at least 20 years before that. Right now, I’m living pretty well with many 95% days. Relapses come and go. They remind us we have to be vigilant and hopeful. You’ll find the level again.

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the relapse was with another medical event/hospital event and ever since then my balance and dizziness is literally all day and night with some moments it’s a lot worse. My anxiety is really high among other things like dissociation so I’m so confused and scared if it’s turning into something else or just my regular VM

Sounds a lot like VM and stress.

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true I feel like I’m constantly waiting for it to turn into spinning but it never fully does Knock on wood. So I’m constantly on edge about that and it’s giving me constantly anxiety

Mine never fully spins.

Oh really in 20 years?

First brain stem aura that sent me to the hospital was in 1998. Grand mal seizure in 2006. First IV migraine cocktail at the ER in 2017. :confused:

In that time I’ve passed out a few times. I’ve had my share of mal de barquement, quick spins, nystagmus and enough dizzy for the rest of my life, but never true rotational vertigo.

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Wow that’s crazy. Same here so far and I’ve had this for 10 years now. But yes the dizziness can be quite intense. I guess it’s possible not to have it? Do you ever get scared it’s going to start?

Nope. It will. I know it will. I just live with it. Let it come and go. Try to remember to be diligent. Why be afraid of something inevitable? Let the wind blow through.

How do you know it will?

20 years with almost four of them chronic have provided me with lots of opportunities to be dizzy and more than a few relapses. I’ve been 24/7 dizzy for months or years and have had times where it passes through like a summer squall. There is no day completely without it. No sense being angry or surprised when the weather changes. Or for that matter worrying about it.

MAV is baked in and incurable. It’s as much a part of me as my eye color. I will relapse again. I will stumble. And I’ll get thru it like I always have. MAV doesn’t define me but it does shape me. It taught me how to dance in the current of my own biochemistry.

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At least you have a good attitude. I’m trying to better mine because I’m having a really hard time the past 3 months with my relapse. It’s possible to get no spinning though?

Yes. Many of us never get true rotational vertigo.

The only thing I have any control over is my attitude - my reaction. So that’s where I put the majority of my effort. I’ve been where you are. Afraid. Despondent. Hopeless. At times suicidal. At some point you just decide to get on with the business of living.

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While I was feeling great for like 10 years I almost forgot I hd this or basically I wanted to forget it existed. Now that it happened again I’m reminded and having a hard time accepting it

Acceptance turns out to be the best survival strategy. Once I finally admitted out loud I had a disability, my life immediately improved because I went from denial, fear and self pity to finding a way to work around and thrive in my reality.

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What’s your definition of disability

A chronic, incurable illness that affects nearly every aspect of your daily life. It might wax and wane but it will always be part of your experience.

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Disability Dictionary definition quite interesting.

‘A physical or mental condition which limits a person’s movements, senses or activities’.

VM/MAV certainly qualifies for that one in my book.

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True but I never used the word disability because the connotation with it and the limitations I feel it places on me. It’s weird because I do feel the limitations now. However when I was in remission which I thought was going to be my life forever lol, I hardly thought about it.
But I didn’t feel disable then. I felt so normal. My fear is having no quality of life and that’s how I feel right now