So after several months of waiting, I finally went to see a neurologist last Friday and described to him my history of how this all started for me last November with vestibular neuritis. As I explained to him, I have numerous symptoms that could quite conceivably cross with a multitude of conditions (BPPV, MAV, PPPD) and listed the following things that are really causing an issue for me, these being:-
24/7 feelings of dizziness and vertigo (spongy floor feeling, rocking sensations included)
tinnitus - high frequency and constant in both ears
ear pain - sharp stabbling pains in the ear, pressure drop sensations (i.e. hearing briefly cuts out)
visual intolerance - mainly to the computer, TV (on occasions), busy visual environments
head pressure - never painful but above the ears and on both sides of the head
pins and needles in legs and sometimes down the side of my face, numbness in arms
vertigo as soon as I go to sleep (like trying to lie down and sleep on a flying carpet!)
increased anxiety, panic attacks, palpitations and chronic stress
I also told him that I’d had a normal MRI scan and that I’d been to see an audiologist who, after carrying out a series of tests, concluded that my hearing was normal but calorics showed abnormally high responses in both ears. Apparently this ‘hyperactivity’ is deemed consistent, although not strictly diagnostic, of migraine-associated dizziness. [At the time this made a lot of sense given some of the additional symptoms like head pressure, ear pain, etc. accompanying my 24/7 dizziness and vertigo, which is my main problem.]
Having explained all of this and then been put through a series of neurological tests (thankfully all ok), the neurologist put ALL of my symptoms purely down to PPPD. So this immediately confused me because I have read and researched quite a bit about PPPD and symptoms such as head pressure, pins and needles, vertigo and ear pain don’t appear to be listed. Rather PPPD appears to have much more interaction as regards visual intolerance (the only bit that I fit into) and non-vertiginous dizziness, if I understand correctly. More worryingly, I have seen a couple of articles where PPPD has almost been referenced as a category that you get put into when doctors accept you have a dizzy problem but don’t actually know what’s wrong. Has anyone else heard this? I questioned what the neurologist said and also added into the mix my age (I’m 48) and that I believed hormone fluctuations were at play (I understand this is another possible driving force behind MAV)…but he still didn’t buy it. Medication wise, he has increased my Ami dose from 10mg to 20mg and then to raise it again to 30mg after two weeks. Apparently this is a good med for PPPD.
At the risk of rambling on, I’ll cut straight to the chase and say I’ve reached a crossroads. Do I just accept that I have these weird and random symptoms or do I plough on and continue to seek an answer to the confusion and what is behind my own particular set of circumstances? I’m always tending to the latter because I guess my anxious brain wants some kind of closure by having an answer. With it, I’ve got a chance to heal but without it, I’ve just got health anxiety chasing me down and ruining my life. Each new sensation of vertigo just ramps up the stress and keeps me stuck in fight or flight. I’m basically going round in circles and have definitely hit an all time low. I’m no longer enjoying life or having fun but then I look at my husband and my son and realise they are the reason I keep going. It must be awful for them having a wife and mum that up until a year ago was happy and the life and soul of the party and has now been reduced to a quivering wreck that fears each and every moment. I think as I’ve said before, I hardly know myself these days.
I desperately do need some kind of counselling with regards to vestibular related anxiety but don’t even know where to turn. The neurologist I saw last week agreed but could not think of anywhere in the UK that could offer vestibular help specifically. Again, if anyone has any ideas I would be incredibly grateful. I’ve yet to find anything through research on the internet but perhaps I’m not looking in the right place.
Apologies this is so long but life is a real struggle. I spend many a day in tears, trapped in a kind of stasis with no way out and that, all by itself, is very frightening. I’m praying I’ll find a way out soon.