The Vestibular Disorders Support Community
Read our welcome post, user support wiki & visit our member recommended products page

Going Chronic

Relapse doesn’t last forever. Though you may have to make some changes to shift it. I’m lucky. No matter how awful I feel, even after the 10th straight day in bed, I have a comfortable home, a family that loves me, an abiding faith in God and enough experience to know this too shall pass. Compared to sleeping under a bridge, alone, afraid, sick and with the certain knowledge I’ll die that way, I’d say I have a pretty damned good quality of life. Everything else is just a bonus.

Acknowledging the truth doesn’t place restrictions on you. It gives you the freedom to take action.


That’s true like it’s just weird how the relapse happened. I went from walking to not being able to walk on my own or move my head. It was so traumatic. It’s improved but I keep thinking my VM is going to “transform” or something when it really hasn’t in 10 years. It only relapsed since I got sick with ischemic colitis

1 Like

Transform into what? Pull out your deepest fears. Write them down. Go see your specialist and ask about each fear.

Basically turning into more severe dizziness. So I guess vertigo even though when I get more severe I can’t even move my appendages or my head so I’m basically bed bound till it passes but I think vertigo is my biggest fear. Spinning I guess. I’ve felt most sensations chronically

Have you seen your specialist?

I’m going again this Tuesday

Good. That seems a necessary step at this point.

Yesh I went when this first happened again in July and then phone calls but it’s already been 3 months

I’m just wondering the next step

Do you ever take benzos?

Twice for surgery. Otherwise I find them to be a very bad idea.

It’s only now they recommended them for me to start moving after it started to ramp up but just as needed and the lowest dose.

I’m wondering what the next thing could be

For me it was a series of various preventatives and vestibular rehabilitation therapy. VRT won’t work without more stable brain chemistry and the total cessation of any suppressants (meclizine, benzodiazepines). It took about a year to calm it all down but I failed several drugs before and after that. Now it’s CGRP rescue drugs and Botox. Had several quick spins today but not enough to hold me back. I do breathing exercises and then just press on. But it’s not near as debilitating as it used to be. Once or twice a month I get forced to lay down and wait for a rescue drug to work. I think we heal over time and it starts to fade back into the background.

1 Like

That’s how I was before this relapse. I am on Zoloft and topamax and basically got my life back but it took a couple of years. The only time I got really dizzy and have to lay down is around my period.
Then this relapse started and I upped my Zoloft dose and did some of the benzos at a super low dose and tried to move as much as possible
It’s been 3 months but I’m not back to where I was but my baseline was so good

You know MAV takes forever. It’s like recovering from a closed head trauma. You’ll find your footing again.

1 Like

Yeah it took me like 3 years to get a good baseline after starting preventatives so I’m thinking this time around it won’t take that long but it’s not going to take years (I hope lol)

My doctor said my relapse would last at least a month. At least she included the words at least

Be happy you have a doctor with a clue. You will get back to ok again my friend.

I pray I do! Thanks for talking to me :heart:


That’s why we’re here, to love and support each other. :slightly_smiling_face:

1 Like

you should message me
Sometime !

Hi everyone. I was extremely stable except during my period for a long time. I had a major relapse after another medical illness/hospital stay with strong antibiotics. I wrote about this in another post.

Anyways a year later and I’m improved somewhat but still having chronic dizziness. I’m talking all day everyday with minor flare ups.

Does anyone know how to break this cycle?

And don’t tell me you can’t.

Basically if you want something to change you have to change something. You need to go right back to basics. Refresh your memory on all the known preventative measures (diet, sleep hygiene, exercise routine, lifestyle changes in general) and then tighten up wherever you see deficits. Then look to revise your medication. A migraine specialist neurologist told me ‘if the drug you are taking is helping but not enough, add in’. Depending on your drug regime maybe an increase would suffice or, as in my case, just a change to taking the same current preventatives in another form may reduce symptoms and give you a better quality of life.