I’ll probably merge this into my Personal Diary, but thought it deserved a post of it’s own for now.
SPOILER: It’s a kind of success post.
Three years today my vestibular trouble started … I got dizzy 15 minutes after pointing a shower into my ear in an attempt to clear some wax … to say that was a stupid thing to do is an understatement(!)
I suffered an acute spell of 5 weeks of imbalance and nausea after which the entire issue appeared to clear up (apart from a feeling of fluid in my ear as I got up every morning.)
I was delighted and my hearing had been normal the whole time. I thought I’d dodged a bullet.
5 months later, whilst sitting in a meeting at work, I was hit with a sudden, shocking feeling of lightheadedness as if a switch had gone off in my head.
What followed was a fluctuating mess of all the MAV symptoms we know and love (), although the migraines only started a few months later, and I started Ami.
About 1.5 years into this hell I started to detect improvement.
Now, I’m overall 3 years in from the first incident (and about 2.5 years from the start of the chronic period).
I’ve made huge progress, I’d say I’m about 80-90% and 100% med and supplement free now and here’s the summary:
WHAT’S GONE: No more nausea, ear pressure, ear pain, extra tinnitus on bending down, significant hearing distortion in loud places, feeling of pressure in ear when driving, vestibular attacks, migraines, anxiety, rocking, marshmallow floor, push/pull, vertigo, spinning or attacks of any kind (touch wood!), migraine brain rumbles/discomfort (usually due to artificial light), head positional discomfort in bed, . All these symptoms are gone! Able to walk through malls and supermarkets with no issues.
WHAT’S ONGOING: Only milder fluctuating tinnitus and some very mild lightheadedness/imbalance that usually catches up with me by evening. I still get a feeling of a little fluid in my middle ear every morning or at night if I get up for bathroom (a short burst like the ‘sound of the sea’ ), but its much less than it was, a slight muffling of hearing at night and sometimes a feeling something is dripping in my ear.
MY WORST DAY NOW: Annoying, nagging but low level tinnitus, a feeling of ‘off’ or a very subtle non-specific mild imbalance.
I can use the computer and watch TV without issue. Artificial lights don’t bother me anymore.
DIET: I have completely stopped any special diet. I am considering lowering salt though. I have one coffee a day
IMPORTANT FACTORS I BELIEVE HAVE HELPED RECOVERY (so far): stopped using headphones for music, careful when bending over, careful to avoid loud noise, keep head up in bed, drink lots of herbal tea (usually ginger & liquorice), minimise alcohol, get out as much as possible and don’t restrict activity, have been out on walks even when when feeling totally rubbish, TIME!, low stress levels (very important to get a grip of anxiety and stress imho) = OPTIMISM! (“This too shall pass!”). DISTRACTION = do something MEANINGFUL! (one of which for me was taking over the running of mvertigo )
I still get frustrated and slightly depressed with the condition at times and I am still not satisfied with the progress, but progress I definitely HAVE made! I look forward to more!!
I hope this gives people hope that things can SIGNIFICANTLY improve! Thanks for listening!
NB Finally must say I’m very grateful for this community and always impressed with the empathy, civility and kindness demonstrated every day on this board. It’s an absolute honour to run this website.
NB#2 I know that I’m relatively lucky and some people have suffered from this dreadful syndrome with worse symptoms for much much longer. My heart goes out to you … and I dearly hope you find your path to recovery.
NB#3 Now I know that at this point many people at this stage of recovery post this kind of thing in the ‘Success’ thread then seem to leave mvertigo. I don’t have that option … so I’ll be here to update you about my progress in the coming year In any case I don’t feel like the full success I want to be yet … here’s hoping I can achieve higher highs! (and that you do too! )