Hi Rachel,
Hello and welcome from me. I have almost identical symptoms to you which started for me in September 2018 with two bouts of BPPV. At the time I didnāt know what was going on but because they were isolated incidents I thought nothing of it (just an off dizzy moment) and just ploughed on two months later when I had vestibular neuritis. I had severe vertigo for about a week and although that eventually lessened, it did not completely disappear. [Later down the road, I had several Epley Manoeuvres performed which apparently resolved the BPPV but I continued to have all manner of weird and wonderful sensations despite this.]
More than 12 weeks later, I was still feeling āoffā and had also developed pins and needles, head pressure, an increase in tinnitus and sensations that the floor was somehow moving all the time. I was convinced I had a brain tumour, MSā¦you name it. Subsequent tests, including an MRI, all came back normal. Whilst this was reassuring, I became incredibly anxious and depressed trying to understand what was happening to me and why I wasnāt getting any better. My GP blamed it all on āhealth anxietyā and that just took me to a very bad place with some incredibly dark thoughts. It was finding this site in the Autumn of 2019 that literally saved me and started me on my own road to research and recovery. I have posted a fuller explanation of what happened to me in my personal diary (Allysonās Diary - A Date with the Unexpected), which I am due to update shortly. Feel free to have a read if you havenāt already. Apologies it is a little long.
Once Iād worked out that others were suffering with similar symptoms and that it wasnāt anxiety causing my condition (rather the other way around), I saved up to see a private audiologist who diagnosed migraine associated vertigo and possible Posistent Postural Perceptual Dizziness (PPPD) which I had no idea about and had to do lots of research. I also saw an NHS neurologist (after a 50 week waiting list) who dismissed migraine associated vertigo and said it was all PPPD! When I asked him if this could be hormone related (Iām 49 and have just entered peri-menopause), he said āmost definitely notā (?!). [I would add here that I have personally dismissed the PPPD diagnosis purely because the majority of my symptoms do not correlate with this.]
What I have quickly learned from this experience is that there are very few health professionals out there that know the full ins and outs regarding migraine associated vertigo and the enormous impact it can have on oneās daily life. Sometimes it takes a little while to find that one person who āgets itā and that, for me, was the private audiologist but they are out there and there is always hope. I appreciate the current situation has put a hold on most things for now but would echo the advice from others of pushing your GP for a neuro-otologist/neurologist once this crisis situation has ended.
In trying to help myself, I have looked at my stress levels, diet and alternative therapies as a way of moving forward. All of my situation followed huge life changing events that caused stress beyond what my body was capable of and it just so coincided with me entering peri-menopause. I donāt think diet affects me as much as other people here but Iām careful to reduce salt and caffeine where possible. Iām also very med sensitive so all Iām taking currently is 10mg of Amitriptyline which is too low a dose to do much but does ensure I sleep a bit better and I can tolerate this. I have also tried Sumatriptans which did nothing for me and actually made me feel quite unwell. Medication is a bit of trial and error but most people find something that helps. Hopefully when you get to see a neuro-otologist they will be able to advise. My alternative therapy of personal choice is acupuncture. I was halfway through a second block of several sessions, which I definitely believe has helped with the head pressure, before that got cancelled due to Covid-19. Iām hoping to resume these as soon as restrictions safely allow.
Some 16 months later, I still have daily baseline symptoms and a ramping up of those symptoms at certain times in the month. This pretty much leads me to believe one of my triggers is definitely hormone based. Others triggers for me are seasonal allergies, stress and lack of sleep. Keeping a diary and working out what your triggers are is a good first step. I have also been continually researching the various aspects of migraine associated vertigo and also spontaneous Mal de Debarkement Syndrome which, in my case, I strongly suspect I have a bit of both - working and feeding on each other. The latter syndrome fits in with my fluctuating hormones as well as feeling better with exposure to movement when the majority of my symptoms take a back seat (pun intended)!. This is just purely my own theories but I am 95% confident now about what is going on and Iām still working on how best to tackle it. I admit to continously suffering anxiety and having many an āoffā day in terms of symptoms and my own mental health but Iām learning now to surf the waves rather than getting drowned by them. Gaining confidence and knowledge about what is going on has been a game changer and having so much support and advice from people here on this site has been the icing on the cake!
Hang on in there and believe you will find a way through - because you will!
