Just wondering if this has been others experience. I haven’t had this very long. I am scared it will get worse.
It almost definitely gets better for most … but not everyone is lucky enough to be able to come off meds afaia
However, it seems that it can get worse for a year or more.
@GetBetter posted a good summary on ‘trajectories’, here:
Hi. Mine is the worst it has ever been unfortunately, but I have been under a lot of stress and have different health conditions. I think my dizziness is caused by several factors. I have had attacks of vertigo for nearly 30 years, but have gone years between attacks. I have always had very bad headaches and migraines with aura. The vertigo became chronic in February 2017 but I was only diagnosed with MAV in March 2017 by a consultant Otologist and ent surgeon. I am now on a low dose of a betablocker. I have got neck issues too which doesn’t help.Get some riboflavin 5 phosphate,the active B2 and magnesium. You shouldn’t worry about it if you can as anxiety makes it worse. R.
I’d say don’t waste valuable energy worry about the future and things over which you have no control. Live in the ‘here and now’, and concentrate exclusively on finding a treatment, most probably a medically prescribed preventation drug that gives you some quality of life by controlling your symptoms as much as possible. Get to understand the condition, try to challenge it/meet it head-on and fight not to let it scare you. You could compare MAV to an aggressive dog. Show it you are afraid of it and it will really scare you.
As for your question - does MAV get worse the longer you have it, personally I’d have to say yes, definitely, as long as it remains untreated. Mine did most certainly. However, you aren’t me. I know nothing of the course of your condition. In some women MAV seems to follow certain discernible patterns which would appear to be hormone related so may give some indication of possible progression. For most it’s a question of ‘wait ‘n see’. Helen
Vivling, like you, I’m scared it’ll get worse, scared to lose the things I’m still able to do, scared to lose my autonomy, the ability to look after my son… I think it’s a normal fear when you have a long illness. But as others write, I try to live in the present, coping day to day. Weirdly enough I’ve also learned to trust that even if things get really bad, I’ll still be ok, still find a solution… before becoming ill with this illness I used to see myself as dependent, I used to worry maybe even more. Now I’ve learned I can be resourceful, I would never have thought I would be able to live through constant dizzies and manage to look after myself and my son. Maybe what I’m trying to say is that even if things get worse for a while, you’ll be surprised that you’ll still cope and be ok. But yeah, completely understand your fear, very normal, getting ill with MAV I think is a traumatic experience and you’re bound to have some anxiety coming in the aftermath…
I agree, I think this is the key point
I wonder where I fall with that trajectory since I was getting relatively better and less dizzy issues from initial of June 2017 to Mar 2018, then I had the antibiotic in the beginning of Mar 2018 and it then messed with my right ear… and now here I am… still having issues day to day but not entirely bad but progress is being made without medication.
Getting a diagnosis, and commencing some sort of treatment is the only way forwards. That’s really how I ended up with mvertigo.org in the first place. I don’t do social media. I’ve never even looked at FB or any of the others. Avoid them like the plague. Then I started having these peculiar vertigo attacks episodically over a decade, then they got worse, more severe and then in 2014 they became chronic 24/7 and I really needed to sort them but nobody could provide me with any sensible answers until I myself strumbled on the term ‘neurotologist’ , and went and found one and got some sort of diagnosis. Then I got to thinking I’m not unique, others must have similar problems and once I was feeling bit better, I ended up here trying to help others fumble their way through the maze that is VM/MAV and pressing them to find relief by seeking treatment. Helen
Short answer…unmedicated chronic MAV does get worse over time as i learnt from my experience. The sooner you treat with meds the better chances of recovery. The last statement is from Dr.S.
How many times I’ve thought that. And, of course, I’m convinced if it’s seen, recognized, diagnosed, and treated before it goes chronic, whilst it’s still capable of resetting itself, it must be so much more likely to respond, and quicker for sure. Helen
I got lucky i was put on predisone(steroid) for presumed vestibular neuritis and coincidentally it worked for MAV completely and symptoms vanished. It returned a month later on a day when i had 3 cafe lattes and it is here to stay. Only if i had known it was MAV and migraine diet i could have been careful and averted a chronic relapse !
It sure would have been nice to have had a proper diagnosis. When I first started getting symptoms lasting a few hours each day I told my doctor. She literally told me I was simply dehydrated. Like I couldn’t figure out if I was thirsty on my own. Then the chronic dizziness started about 2 weeks later. I had 2 normal days a month and a half later. Then I ate some pizza and the next day WHOA major symptom return. Been like that ever since. Was told labyrinthitis by the ENT. Nope. I guess I probably need the dang meds.
It;s amazing the claptrap one gets fed. Mind younI’ve read you can be dehydrated without knowing it and once you feel thirsty, it’s ‘too late’ - to avert the migraine presumably they mean. I wonder about dehydration/hydration. I’m not saying it isn’t a good thing but I remember the days before everybody carried bottled water everywhere, and we seemed to have survived.
Certainly would. I waited twelve years for one, and then it was only ‘probable’ MAV. Often it’s a question your symptoms haven’t ticked all the boxes. Then many doctors don’t know MAV exists. Not even in 2019! Helen
You’re right of course that we can be dehydrated without knowing it really. I was just a bit annoyed that that was all the effort they put into analyzing my symptoms. Dizziness = just drink more water!!! Oh great!! Anyways. I’m sorry you had to suffer so long before a diagnosis. That must have been quite nerve wracking not knowing what the problem was.
Yep, many doctors wouldn’t get good marks for effort on their school reports from me either and I wouldn’t repeat some of the negative comments I’ve had on here. That certainly would be bad for morale. MAV isn’t life threatening so most just don’t rate it. No doubt they have no idea of the long term impact it has on life. I was lucky with the development of my MAV in a way It came on gradually over long period. I accepted it was just something called ‘BPPV’ for many years and there was no treatment available. I could forget it completely between acute attacks (no symptoms ever lingered-on between) so I didn’t find it ‘nerve wracking;. Not until it went chronic then I did research and made inroads into recovery eventually getting diagnosis and treatment. Helen
My symptoms started when I was 7 with a bout of vertigo & motion sickness. Then by my teens I was having constant vertigo 24/7 for a month straight, causing me to be bed ridden at least once a year. Fast forward, I’m now in my mid 20’s, I have 24/7 dizziness and seemingly random vertigo spells. Getting the right diagnosis is half the battle. Keep your head up, or on a pillow. That’s needed sometimes too.
4 posts were merged into an existing topic: New Migraine drug out this week - 'Aimovig' - #25 by GetBetter - CGRP antagonists - mvertigo.org vestibular disorders support forum
I’ve never understood why migraine would benefit from keeping the head elevated … the brain has no positional sense in itself without the ears (and eyes). So what’s with that? …
That was a joke on positivity, good question though!
That wasn’t an ear comment, it was a chin up motivational comment.
When migraine is playing the fiddle with my trigeminal nerve and making my nose run, I find head up is more pleasant than drowning in snot.