I have read several posts on this site that for some people, after their “chronic” MAV sets in they can improve over time, albeit slowly, by what it seems like sheer force of will (?) and can even get to a decent state (without meds), only to have a sudden worsening of symptoms. it also appears that during this time, many do not realize they are dealing with MAV and perhaps this “second worsening” leads them to their diagnosis of MAV.
Does anyone know why this might be the case? Is there a logical/scientific or a proposed hypothesis on why this is? How does a brain heal over the period of weeks to months then as if a switch has flipped, suddenly “lose” all the improvements it has made - and possibly even get worse than before?
I’m thinking the state of research and knowledge is just too early in the process to answer that question. MAV waxes and wanes. Think in terms of relapse and remission.
I’ve had PCOS my whole life and suspect MAV was the element supplying the dizzies these last 25 years. I’ve had acute episodes followed by periods of lesser symptoms. I’ve never been whatever normal is, not even as a kid. Personally, I suspect a metabolic component that has something to do with various hormone levels.
I’m unmedicated now and much of the time I’m at 70-80% with portions of the day when I forget MAV and others where it’s sitting on top of me.
My diagnosis of MAV came after an acute episode 16 years after the first acute episode that landed me in the ER. I’ve been there twice with MAV related brainstem migraines. Once when I was 28 and again at 44. In between, MAV waxed and waned then went up front and center chronic.
I think in some of these cases it may not be predominately migraine, could be an actual vestibular issue like vestibular neuritis or ____. Even in the predominately migraine case, I can’t say I’ve seen many people “lose” all improvements and get worse than before. Most often when people regress, they bounce back quicker than before because they KNOW what they got and they are more capable of doing the necessary things to get better. It’s different for everybody though.
In my case I don’t appear to be having any violent setbacks. It’s just a very slow gradual healing.
Really? Can you point then]m out to me please. Some example maybe. Starting/changing/titrating up on preventatives will cause further upset often and MAV just waxes n wanes of its own volition but I’m having trouble imagining this. Untreated MAV tends to worsen over time (mine most certainly did) and sometimes it can be episodic with completely clear periods between (again, mine did for over a decade) maybe that’s what it was. Since being active on here most particularly I’d say very few people, all of whom were obviously suffering or they wouldn’t have got here in the first place, get better by sheer willpower or good luck or either Migraine Diet and Trigger Avoidance alone. They need meds.
I wouldn’t imagine it does. I think variations are due to changes in the driving force behind the condition which is not the brain but is whatever caused the condition in the first place. The brain has just been pushed too far into hypersensitivity and flips over into an unstable state as a result of the root cause. That root cause could be some chemical imbalance (caused perhaps by hormones), trauma (whiplash, damage to an ear whatever) or for many the migraine or should I say the driver behind the migraine. I suspect you are asking this because of your mother’s case and as she appears much like me in many respects I’d say much like me her root cause is hormones, and when/if they choose to make peace with her body and brain, her MAV will settle. Just MHO. As @ander454 so rightly says there’s no quick flip of a switch.
Very very very slow indeed. Watching paint dry is lightning by comparison. Helen
hi! I’m sorry I read probably 2~3 posts but I can’t find them except one. I don’t know how to cut and paste nicely like you have but I copy paste an excerpt below. This one is from a poster named: JEM Aug 2012 titled Do I have MAV. I have read other posts like this (?) where it seems like people improve after 1st major insult but then down the line worsen again. I don’t know if what I am asking make sense tho (?).
My dizzy nightmare started in April 2009. Out of the blue I woke up feeling off balance, strange, tired. Tried to continue working etc but things got worse and panic attacks set in. Over the next few weeks and months visited loads of different GP’s, then ENT’s who did not know what was wrong. All tests (bloods, urine, MRI brain scan and vestibular testing) came back normal. Finally after 9 months saw a neurologist who confirmed my own self-researched diagnosis of vestibular disorder, probably VN. Was referred to local NHS hospital for some VRT/physio and then a Chronic Fatigue course due to my severe tiredness. By this point (one year in) I had given up my job and was suffering from severe neck pain/aching, fatigue and chronic disequilibrium.
Over the last 2 years I took things easy, not working, doing daily VRT exercises, eating healthy, no alcohol and avoiding pushing myself or getting stressed. I have continued to have chronic symptoms although the last year I felt them less intensely and was gradually doing a bit more, hoping that over time things would eventually get to a point where the symptoms wouldn’t bother me too much and I could live a fairly normalish life. Things have been a bit up and down with some days better than others for no apparent reason. The last 5 months or so were probably the best I have felt, although definitely not symptom-free. However, since the start of July 2012 and now August (now 3 years 4 months in) I have been feeling worse again. Not just a slight blip but significantly more dizzy with some horrible spinning feelings which I felt sometimes during the first year. They have occurred about 5 times in the last 2 months randomly but I don’t think it’s BPPV as it isn’t triggered by head positions and I can do a self-epley maneuver without any effect. Over this period of worsening symptoms, my chronic neck pain has really increased and I have felt more spaced out, woozy headed and another thing I have noticed (which occurred at the beginning of it all) is that I keep needing to wee lots. I only mention it because frequent urination I have read can be indicative of migraine.
Thanks for your response. Maybe this disease is so confusing it is hard to tease out if patient has other vestibular issues and migraine issues and they are manifesting themselves in different manner? Furthermore, it appears that each of these issues have an up and down nature so I guess it is hard to figure out which is acting up.
Even after doing much research I guess I’m still very ignorant when it comes to these issues. I feel like when my mom’s symptom went chronic (after what we think was due to a BPPV (?) episode), over the course of MONTHS, while we were trying to figure out what this was (initial diagnosis was depression and anxiety as with many pple), she slowly improved with gentle excersizes, eating right, keeping her schedule literally exactly the same every day (literally) and taking few supplements. Then one day she woke up and literally felt worse than when this initially went chronic. She has NO idea why, NO changes happened, literally woke up one day and all the progress was lost. This is SO bizarre to me and I believe I read few posts where others have had similar type of experience (?) so I was curious if there was an explanation for this. In the end this lead us to aggressively pursue a diagnosis and ultimately found out this may be MAV or some migraine.
I pray there will be more interest/research in this area soon!
So very sorry to have put you to that much trouble. Cut n paste - you should just ask. Not struggle. If you’d just given me the poster’s name and a date I could have looked it up myself. Sorry but thanks anyway. Much depends on how you read it but this extract to me seems typical, she had symptoms, even got a diagnosis, then she seems to have altered her lifestyle to reduce triggers, stress etc and things drifted along nicely for a while then gradually symptoms flared up and got stronger with the passage of time. That’s pretty typical. She wasn’t symptom free between. She mentions her stiff neck gradually worsening, a sign sign of existing vestibular condition. I’ve always found the worse my neck is, the more symptomatic. I cannot see that it was ‘sudden’. I find the progression perfectly natural. Read my diary. I was much like that myself. It happens.
Btw, I know I’m a great one to talk, but if you spend your time trying to make sense of every nuance of MAV, you’ll probably drive yourself crazy. Overall, uncontrolled MAV gets worse down the line. That’s why we take the meds.
I can understand she has no idea why but you cannot state that no changes happened. Nothing can alter without some change taking place. I think that’s a fundamental law of the Universe. What you mean is she/you didn’t notice any obvious change. Because of her age I’d say some change occurred to her hormones/chemical level in her brain. Something we cannot see.
As I see it nothing was lost. Something just decreased the tolerance level of hypersensitivity and her symptoms became more intense. A ‘blip’ occurred as the VRT body always used to tell me. Please don’t beat yourself up about it. It’s nothing anybody has done wrong. Infuriating as it seems. Helen