Constant Vertigo - Looking for advice

Hey guys

I’ve had constant vertigo for almost 2 years now. Ive never had true spinning vertigo but I am constantly moving inside. It feels like a pendulum or waves in my head. When I walk, I feel like I am swaying. Most vestibular orders can cause this however and I’m aware of that but I thought I would try a MAV forum. After many tests, it would concluded that I had a cyst compressing my cerebellum as well as my 8th nerve. I had that removed over a year ago.

I gradually improved over the course of the year but recently I had a minor setback. I never felt 100% but hovered around 75%. My questions are the following:

  1. Do people who have MAV constantly have symtoms (i.e. they are constantly felt with NO breaks whatsoever).
  2. How can i differentiate if my dizziness was actually caused by the damage done by the cyst between MAV or something else?

I am going back in for another round of PT next week to further progress. My thinking is that this is all caused by the cyst, even though I had a history of migraines. I am confident that these 24/7 symptoms have to do with it mostly. I will occasionally feel like my limbs are disconnected (a propioception issue) but that is common with most vestibular problems. Please let me know your guys thoughts on this and if you think I could be experiencing MAV, even to a minor degree.

Simplest answer: recovery from many procedures seems to involve occasional setbacks, without this indicating anything new, different, additional is wrong. Next-simplest answer, from someone other than a doc who has examined you: if you try the dietary restrictions for a month or so and see no benefit, MAV is unlikely. If you try them and do see a benefit, you may have some MAV or you may simply have improved concurrently without there being any causative association.

— Begin quote from "david shapiro"

Simplest answer: recovery from many procedures seems to involve occasional setbacks, without this indicating anything new, different, additional is wrong. Next-simplest answer, from someone other than a doc who has examined you: if you try the dietary restrictions for a month or so and see no benefit, MAV is unlikely. If you try them and do see a benefit, you may have some MAV or you may simply have improved concurrently without there being any causative association.

— End quote

I havent really noticed any dietary triggers, I have cut out stuff and noticed no difference, but medicine has had some impact. I think the only thing that can cause me spinning is too much coffee, but I think anyone who drinks too much coffee will have some problem.

— Begin quote from "coug"

Hey guys

I’ve had constant vertigo for almost 2 years now. Ive never had true spinning vertigo but I am constantly moving inside. It feels like a pendulum or waves in my head. When I walk, I feel like I am swaying. Most vestibular orders can cause this however and I’m aware of that but I thought I would try a MAV forum. After many tests, it would concluded that I had a cyst compressing my cerebellum as well as my 8th nerve. I had that removed over a year ago.

I gradually improved over the course of the year but recently I had a minor setback. I never felt 100% but hovered around 75%. My questions are the following:

  1. Do people who have MAV constantly have symtoms (i.e. they are constantly felt with NO breaks whatsoever).
  2. How can i differentiate if my dizziness was actually caused by the damage done by the cyst between MAV or something else?

I am going back in for another round of PT next week to further progress. My thinking is that this is all caused by the cyst, even though I had a history of migraines. I am confident that these 24/7 symptoms have to do with it mostly. I will occasionally feel like my limbs are disconnected (a propioception issue) but that is common with most vestibular problems. Please let me know your guys thoughts on this and if you think I could be experiencing MAV, even to a minor degree.

— End quote

I think everyone has different symptoms particular to the person. I’ve had bouts of vertigo that lasted for days with the whole world spinning around me. I couldn’t walk unaided and there was no relief even with eyes closed and not moving. Now my experience has changed and I’m dizzy 24/7. The world no longer spins around me but rather the horizon bounces and I have difficulty focusing on objects if I’m moving - cannot read road signs while a passenger in a car, etc. I stagger when I walk because it feels like the floor has shifted, although I can stand still without swaying, as long as my feet are apart. I cannot do a “heel-toe” line as I would fall over, nor can I walk in the dark without hanging on to something.

What sort of PT are you doing? My ENT doc wanted me to do Thai Chi (I cannot yet as I don’t have enough balance), but he also asked me to do Cawthorne-Cooksey exercises to help with the adjustment to the “dizzy condition”. I have been doing these exercises and my balance has been improving… then the question remains, is it because of the exercises, or would it have happened anyway? :?
Cat

Hey thanks for the replies. I am going to be going to the Balance Institute in Los Angeles. My first appointment is next wednesday. @Rebecca-- when you say your symptoms are 24/7, do you mean that they are unchanging?? For me, over the course of the past 2 years, I have slowly gotten better and plateaued around 75%. Now that doesnt seem too typical of mav to me and more like vestibular damage from the cyst but I could be wrong. I feel like with mav it is a general up and down with occasional bad dizziness and a sort of “off balance” feeling other times.

Its hard for me to pin point what is really going on here becasue there could be two things happening. I avoid most migraine triggers and still feel like I do. Usually after I lie down for a little while, my symptoms lessen and its when ive been moving around I get dizzier (this could be another indication of vestibular damage??) What do you guys think?

— Begin quote from "mommyrebecca919"

— Begin quote from "david shapiro"

Simplest answer: recovery from many procedures seems to involve occasional setbacks, without this indicating anything new, different, additional is wrong. Next-simplest answer, from someone other than a doc who has examined you: if you try the dietary restrictions for a month or so and see no benefit, MAV is unlikely. If you try them and do see a benefit, you may have some MAV or you may simply have improved concurrently without there being any causative association.

— End quote

I havent really noticed any dietary triggers, I have cut out stuff and noticed no difference, but medicine has had some impact. I think the only thing that can cause me spinning is too much coffee, but I think anyone who drinks too much coffee will have some problem.

— End quote

I noticed a significant change when I cut out all caffeine, having been a committed chocaholic. But I noticed the greatest change when I cut out not this or that but every bloody thing on the triggers list simultaneously,and had stayed off them all for weeks.

— Begin quote from "DizzyCat"

— Begin quote from "coug"

My ENT doc wanted me to do Thai Chi (I cannot yet as I don’t have enough balance),
Cat

— End quote

— End quote

You might possibly get something out of starting with the hand-arm movements whilst seated. If the dizzies don’t rule it out, you also would be very likely to get something out of performing the hand/arm and leg/knee movements, even if done quite small, whilst standing in place.

— Begin quote from "david shapiro"

— Begin quote from "mommyrebecca919"

— Begin quote from "david shapiro"

Simplest answer: recovery from many procedures seems to involve occasional setbacks, without this indicating anything new, different, additional is wrong. Next-simplest answer, from someone other than a doc who has examined you: if you try the dietary restrictions for a month or so and see no benefit, MAV is unlikely. If you try them and do see a benefit, you may have some MAV or you may simply have improved concurrently without there being any causative association.

— End quote

— End quote

I havent really noticed any dietary triggers, I have cut out stuff and noticed no difference, but medicine has had some impact. I think the only thing that can cause me spinning is too much coffee, but I think anyone who drinks too much coffee will have some problem.

I noticed a significant change when I cut out all caffeine, having been a committed chocaholic. But I noticed the greatest change when I cut out not this or that but every bloody thing on the triggers list simultaneously,and had stayed off them all for weeks.

— End quote

Really? I will need to do this, cutting out every single thing seems so hard and takes a lot of commitment! Its hard because I cook for my family also and know that they like a variety of things. I have the “Heal your headache” book and I am going to have to look at the list in there again.

— Begin quote from "david shapiro"

— Begin quote from "DizzyCat"

— Begin quote from "coug"

My ENT doc wanted me to do Thai Chi (I cannot yet as I don’t have enough balance),
Cat

— End quote

— End quote

You might possibly get something out of starting with the hand-arm movements whilst seated. If the dizzies don’t rule it out, you also would be very likely to get something out of performing the hand/arm and leg/knee movements, even if done quite small, whilst standing in place.

— End quote

You’re right… starting small is the answer. I managed to fall and mess up my knee while walking. Back to weight-lifting while seated, etc., at least until my knee feels better! :oops:
Cat