Hi everyone
I seem to be suffering with a mixture of all 3 conditions which is driving me insane.
Tried the following medications but they haven’t worked:
Prochloperazine (worked initally)
Cyclizine
Amitriptyline
Topirimate
Beta Blocker: propanolol
Brief history:
Migraines all my life
2016 had labrythinitis a few times
2020 lockdown starting playing video games and yoga which turned into a 12hr spinning fit like I have never experienced. I had 2 more of these in the next 6 months but never again.
2020 Summer diagnosed (after seeing Professor Luxon in London and passing all ‘tests’) with Vestibular migraine
Every year I have different symptoms in a form of dizziness/vertigo and my migraines have completely disappeared (bar one or two a year; oh how I wish for those days to be back!).
I’m generally fine for 60% of the time but every now and then I get a severe bout of vertigo which lasts for 24-48hrs but then in the aftermath I often feel terrible for weeks or sometimes longer.
My current situation is also trending more towards menieres (or so my ENT tells me). I have had 3 bouts of very bad tinnittus.
2022 Christmas.
2023 Christmas (which resulted in permanent mild hearing loss) and now April 2025 which has been the worst 3 weeks of my life. I am constantly dizzy when I move too quick/drive for longer than 30mins. Sleep is also repeating what I had back in May/June last year; unable to sleep on my right side; if I fall onto that side then I wake up feeling sick. I am also constantly aching on my upper traps and neck despite seeing a physio and chiropractor recently; very strange.
Most bizzare of all is when I go on holiday I have no symptoms at all… but my life is not stressful: I have the best job in the world so its definitely not ‘stress’ that causes it… perhaps its something to do with Vitamin D?..
Number 1 trigger is sleep; but I am a terrible sleeper; something I am working on.
Anyway just wondered if anyone out there has experienced a similar journey and if they have found any relief? No medication has worked yet but I am back on the vestibular rehab path which (I think) has started to ease the motion sickness feeling but not entirely sure if its the exercises or just the body returning to normal.
My ENT is confused why i have positional vertigo at night and why I only now have tinnitus… very odd
I have given up cheese/caffeine/choc and I dont drink and now started with B2 supplements. But not entirely sure if its worth it..
Help!
Thanks for reading this!
Matt
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Welcome! Absolutely similar journey … (check out my diary accessed from my User Card that you can see clicking my avatar)
It feels like I have … but then again were they migraines?
Yep, that’s how it went for me.
I had this for ages (a couple of years), then it stopped happening and happened once again the night after my dentist started messing with my jaw muscles.
I don’t think you can have Menieres without low frequency hearing loss.
VM/MAV mimics Menieres, so be careful not to mistake one for the other.
PPPD, well, what is that?? Fallout from migraines maybe?
I suspect you have one condition just like me, and naming it three different ways is kind of pointless.
There’s no way you have 3 different vestibular conditions, all of which are rare.
I sort of feel like there is an ENT element to VM/MAV but I’m not sure why.
I get a periodical cracking open of my jaw which feels like stuck together tissue cracking free (and nothing to do with TMJ cartilage issues). That symptom makes me think there is some general inflammation over that area of my face and I wonder if it’s that that causes all the problems including the tinnitus. But how do I make that go away?
This shit is so very weird.
But keep going, I found most of my symptoms disappeared. I only very rarely get vertigo now and the only remaining long term symptom for me is tinnitus.
Sorry to hear that April was so awful for you. Do you have spontaneous vertigo or only positional vertigo? Positional vertigo is easier to manage. I can’t sleep on my right or left side due to the positional vertigo, but I have managed it. I sleep with pillows below my head, and I have small pillows for the sides, so I don’t move my head too much. Sleep is priority, so try to fix that. Of course, the days that I don’t sleep enough (9 hours for me) I feel sick. Magnesium seems to be missing in your list of vitamins. If you take it in the evening, it is supposed to help with sleep. I am not sure about that, but I notice more headaches when I don’t take Magnesium for several days. Have you tried Nortriptyline? It has good reviews, and it saved me (10 mg). I think that at this moment your nervous system needs to be regulated and the only way is with medicine. That is what my doctor explains always. Once you regulate your nervous system, everything improves slowly. I think there is a survey in this site that shows that the majority of people with VM have improved with medicine. It is the number one factor of success. I know it is not easy, but 60% of the time you are fine, which is a good sign, so have faith that you will find a solution.
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Not a very big survey because it’s restricted to those with high Trust Levels and may have sufficiently recovered now not to look at the site much:
https://mvertigo.org/t/poll-what-helped-with-your-recovery-most/23892/3