At the end of my tether
Hello there. I’ve been reading some of the posts on this forum and I think I’ve found what I’ve been looking for - a place where I can find support from people who understand what I’m living with. Apologies if this initial post is long.
I’ve been living with vertigo on and off since 2013, and for the first few years it followed a pattern. I’d have a few attacks over the course of a couple of months, see an ENT specialist, go through the usual tests, not really get a clear diagnosis but then the vertigo would gradually disappear anyway. A couple of years later I’d go through exactly the same thing.
In 2016 I saw a vestibular physio. She set me some exercises which worked for a few days but then I actually started to get worse. After a few visits she suggested I go back to the ENT as she felt she couldn’t help me. I asked my GP to refer me to a different ENT specialist as I’d found the first one pretty useless. So I was sent to see THE specialist in my city. He did the usual Hallpike test and said that my reaction to it was one of the most violent he’d ever seen. He said that the only option was the Omniax chair, but that he’d understand perfectly if I couldn’t face it. Just as well, because there’s NO WAY I’d do that!
As previously, my vertigo then disappeared and I thought maybe I’d finally beaten it. But no, at the beginning of this year it came back with a vengeance. Unlike the previous times, it’s been pretty constant now for 5 months. I went back to the ENT guy and he’s now given me a diagnosis of Meniere’s with hydrops. To be honest, I was pretty spaced out when I saw him (I get terrible brain fog), but from what I can make out, this seems to be Meniere’s without all the tinnitus/hearing loss symptoms, ie just the vertigo. He’s prescribed a drug (Sibelium) which I gather isn’t available in the US because of the dangerous side effects (I should have mentioned that I’m Australian). I’ve been on that for a few weeks now, and while my vertigo has improved quite a bit, it’s still there - that horrible feeling that it’s lurking in the background. Also I’ve continued to have attacks every few days.
I’ve been banned from driving, which is inconvenient, but to be honest I wouldn’t feel safe driving. It’s now 2 months since I last drove. I was walking everywhere (miles and miles), but then I had an attack when I was out walking and so since then I’ve been pretty much housebound.
I feel like my life is over, and like this is never going to get better or be explained. The diagnosis of Meniere’s doesn’t really sit well with me - I’m not convinced by it, and I think it was a bit of a stab in the dark by my specialist. I go back to see him in 10 days, and I’m not sure I know what I should be saying to him. I honestly think I’ve/we’ve tried everything, and I think he’s running out of ideas.
Apologies again for the long post,