I’ve had symptoms for over 8 weeks now. At the start, my symptoms were not pleasant, but they were only a suggestion of what they’ve morphed and progressed into over the last two months. I get worse day by day, with no reprieve. Now I’m in a bottomless pit, with constantly changing and worsening symptoms.
My question is: did anyone spiral down, worsening every day, before hitting a baseline, or getting better? And did any of you start out with a slight rocking vertigo, only to have it morph into violent, nauseating swaying, rocking, dropping vertigo, much worse than what it started out as?
I’d love to hear from you if this describes your journey, because I feel like I’m in the minority, and it makes me think MAV possibly isn’t to blame. It seems as though most people start out bad and stay there, or slowly improve. But not me. It just gets worse and worse.
When it all started my symptoms got worse over 4 or 5 weeks until they started to improve VERY slowly. Then when I relapsed badly last year, I started to go worse every day for a couple of months until I was totally bed bound. I then only started to see small improvements when I began taking nortriptyline. It is really scary when you feel you are going worse and there is nothing you can do to stop it. Just do what you can, rest a lot, eat regular migraine friendly meals/snacks and try to see a good neurologist as soon as possible and hopefully you can get started on a medication to see if that will rein things in x
Thanks, Jem. I’m trying to make productive changes, and I’m more than willing to try anything that people on this site recommend.
I hope you start feeling better soon.
Yes, my symptoms started with the rocking which gradually got worse over a few weeks then the vertigo and balance issues hit until I couldn’t walk on my own and needed support.
Nothing got better until I started meds - Ativan (a benzodiaziapam) prescribed by my GP then low dose Nortriptyline. A couple of months later daily migraine headaches started and things became even worse. Many visits to physios, ENTs, blood tests, a whole range of ear tests, MRI scan, etc and still no diagnosis of what was wrong. I developed panic/anxiety attacks & acute psoriasis from all the stress I was under. This forum saved my sanity! Found a neurologist who could diagnose/treat MAV & now on way to getting things under control.
There are many ways this illness starts for people and not always with a “big bang” so I don’t think you are necessarily in a minority. As Jem says - the way forward is to begin to get some control over your symptoms - read the literature here, follow the diet and lifestyle advice and most importantly find a specialist who can advise and treat MAV.
The ‘pit’ is a lousy place to be and we have all been there and experienced it. We also know how difficult it is to climb out of it and how hard it is to struggle every day and overcome the difficulties of just coping with things like showering, dressing, shopping, etc. etc. It all takes a great deal of effort and willpower. BUT YOU WILL GET BETTER! Keep that as your mantra because we also know that it is possible.
Yep… Getting way worse seems to be the norm I’m afraid. But it’s kinda good because it’s hinting that you’re on the right track… You will get there! x