Matt, I sincerely sympathise - this is the nature of the beast unfortunately. Mine got very much worse before getting better. Even whilst on Ami I had one of the worse attacks of my entire experience. Consider discussing upping your dose with your doctor for a bit but it can’t change the fundamentals and its best imho to keep to as low a dose as possible to minimise side effects and maximise the chance of compensation.
Thanks. I’m glad it’s not a unique experience to get worse before better. I think one of the most frustrating things about MAV is how little is understood. I learnt more from migraine books and articles than my own doctors.
I have VRT exercises to do but I think it would be useless right now.
Matt I’ll be very surprised if MAV isn’t an inner ear condition. See one of my recent threads about the controversy. There are simply too many peripheral ear symptoms to ignore this strong possibility. In my case my problems started with ear trauma. I eventually developed the identical symptom spectrum as MAV.
Migraine books will only get you so far in understanding what is really going on (and it’s even possible the reverse is true - migraines are mainly caused by misbehaving ears).
It’s interesting you say that as I’ve had trouble with my ears as a child but almost no history of migraine. Only my grandfather got any migraines in family history too
I also started as a general imbalance for months and before I got migraine symptoms the best ENT told me flatly I’ve got damage in my left ear somehow but their tests and imaging aren’t good enough to find it. I know the vestibular system is very complex but it honestly shocks me how far neurology and ENT seems behind other medical disciplines when it comes to balance at least.
Let’s not over exaggerate ‘damage’. They say this but in reality it could be something tiny throwing out the pressure regulation. In my case its a partially healed fistula I’m pretty sure. If there was loads of damage i’d not have any good days … and sometimes I can be 99% (without meds) (only to be 60% the very next day and back to 90% two days later). MAV shares the same spectrum of symptoms with a condition known as Secondary Hydrops. The treatment protocols are the same, except some people with SEH use diuretics. I’ve yet to ask my ENT if that’s worth trying.
Totally agree with you Matt - its quite shocking the state of ear medicine. And when they don’t know stuff they just make names up for the symptom ‘spectrum’. BPPV for example - probably nothing to do with crystals at all, but instead probably a leakage issue, which is positional due to CSF pressure being greater in certain positions. Yet to be determined.
In their defence they have only recently started to be able to see inside the thick bone with hi-res MRI. They have only just been able to use MRI to detect Hydrops in the ear. Cone beam CT scanners are now really good and hi-res but they don’t detect soft tissue (so have to combine a view from both). CT gives you a dose of radiation though so are used sparingly and only if necessary.
Give it 30 years and things should be totally different - but then once they have the telemetry they will need to think up new strategies and treatments and then be able to trial those before roll-out - don’t hold your breath.
Hi Matt not alone. I’m into 7 months and have gotten worse as well. Sorry to hear that someone else has the 24/7 dizziness. It has never let up on me either. I wake up every morning thinking hoping today it will be better.
Background mine started off ear fullness vertigo room spin out and chronic dizziness. Then headaches started about 3 months into it. Hey who wouldn’t have headaches if your dizzy can’t look at people or walk steady. I’m married to a doctor so I’ve had all the tests cabinets full of pills herbals treatments etc… life diet changes. I’m typing here unsteady and can’t believe I got hit by an invisible truck.
Keep searching on the site maybe something will take the edge off. Out of all the meds I tried I ended up taking lunesta at night because I couldn’t settle and the side effects to some meds was insomnia.
During the day I can barely make dinner for my large family. I can’t look at computer screen to long it’s motion sickness really.
You will find something that will help and you’ve got to keep trying.
With 6 different doctors no one has agreed on what’s going on. I’ve heard dehydrated, claustrophobic, anxiety, meniere, MAV, virus…etc. The doctors know that you will try different meds and change doctors.
I’ll pray for you Matt
I’ve seen 4 doctors … 3 of them didn’t make sense … 4th one did. All private. They pick up around £200 each visit … its a racket. This area is begging for better technology. It will come.
If you read some accounts of people going through all kinds of invasive and not-so-invasive surgery and getting revisions done, I hate to THINK of the cost?!
Thank you for the kind words. I hope you get better soon also.
You too. This is real life a lot of people have a burden that they carry. I can’t carry all this on my own I have to give it over in faith to not a doctor or person or study or pills.
I wore an ear plug on my bad ear slightly in all day yesterday. The dizziness drunk woozy feeling fell down 50% couldn’t believe it. I read someone else tried that here and it worked for them.
I liked the nortrypline but not the tight tension squeeze in my face jaw. Let us know how it holds us.
I’ll keep praying
The cost in the states add up as well. It’s the mystery condition that they label so the can bill it. A code for this a code for that and extract as much from insurance companies as possible.
They have flow charts how to treat people with dizziness as you have probably seen. It gets them coming back trying this or that.
It’s been a blessing though reading people’s reviews and the real life patient stories. Internet has changed medicine.
Yes it definitely has. It has exposed the lack of progress it’s made too.
Take a look at this paper. It shows that ear surgery is far from a reliable long standing solution. These poor patients!:
That’s good you found something to help. I’ve upped nortriptyline to 30mg today but it seems to have provoked my vertigo a bit.
Vertigo is by far worst symptom I get and mines only mild. Can’t seem to find any ideas on making it better expect valium
Vertigo is now my worst enemy because it messes up my balance for at least a day or two. Vertigo is something physical going on. You can only reduce the sensation by dulling the brain with meds. But the root cause of the vertigo has to be addressed for it to truly go away and for balance to permanently improve. I’m considering surgery as seem to have reached a point where I’m no longer improving. But perhaps I’m just being impatient. I’ll give it a few more months in any case.
Have you ever tried VRT? What’s your balance like on a good day?
VRT is next to pointless as ‘MAV’ is an unstable lesion. Your brain would easily compensate within 5 weeks if the lesion was stable and with just normal activity.
You can definitely compensate to some extent but I believe VRT is pointless. Just get out for lots of walks. This is what I did and despite my days of imbalance I’m no longer ‘dizzy’ or ‘walking on marshmallows’ (and this without medication)
My balance on a good day is now 99% verging on 100%. The issue is I get good days maybe 20% of the time.
I see. It must be frustrating to be so close to being better and still get vertigo. I have been worried my balance would be bad long term and be hard to fix so I’m glad it seems like when people recover their balance seems to return with it.
Yep. Long-term balance will definitely improve. Dizzies have gone for me. Tinnitus shows periods of improvement. It’s all down to endolymph volume imho as I believe MAV is simply secondary hydrops.
I’ve upped nortriptyline to 35 and noticed it helps visual rocking but my brains pretty sore and angry. I’ve got sensitive ears and vision. Other than that I just keep getting worse. I’m not sure why but Ive gone from going on walks daily and being able to function around 80% to spending my day between a chair and bed in the last three months. I’m feeling pretty scared to be honest.
Matt you will get relapses and sometimes they don’t show any kind of trend or pattern. You will climb out EVERY time though. And when you do be sure to go for walks and get your vestibular system working again.
For me it got very much worse before it got better.
Mine stared after pregnancy. Did you have vertigo before your baby?