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Discussion in 'Your Living Room' started by AnneT, May 16, 2019.
Anne hoping you’re feeling well and hanging in there after shot #2!!!
Went to church this morning. Music was very loud, even too loud for Hubby. Flickering lights from light coming through ceiling fans. Thought I was doing ok. Standing Chatting with a friend after, and suddenly felt like I was being pitched forward. We sat, and then I had a 1 second clockwise vertigo. I’m scared it’s the Menieres breaking through, but hoping it’s just gentamicin #2 taking care of business.
I guess I still need to be careful of triggery places, resist the temptation to just jump back in full force, for now.
I’ve also got my weird clicking noise in my right ear - not fluid crackling, but what I think of as kind of a nerve induced clicking. Haven’t had that in awhile.
Anne, it’s also very loud at my church...music is almost like a rock concert. I put cotton in my ears before I leave the house and it works really well... the only bad part is I can hear myself sing.
Anne.... I get clocking in my ear. Like my Eustachian tube is opening and closing. Haven’t had that since they put the tube in my ear for my drops.
I’m guessing the quick vertigo was probably gentamicin kicking in and even if it was Menieres at least is was quick. That’s maybe sign that you are on the right path ?
I was contemplating your wanting a VNG after gentamicin to validate whether it’s done it’s job or not. And I read that a simple “head thrust test” is a better and very good indicator. Have you heard this? I think I was a Dr. Hain article but by now I’ve read so much I can hardly keep any of the information straight.
Update when you feel better. Hugs.
Hith'rto I pose, seemingly illuminous!
Yes Hubby and I will invest in discrete ear plugs, and use what we’ve got for now! I do want to save my good left ear.
I feel wonkier this morning, so let’s say it’s the gentamicin! But yes, if it was Menieres, that’s a drag, but 2 seconds is better than 2 hours.
I changed my mind on the VNG. I saw a study that showed imperfect correlation between the VNG (after gentamicin) and likelihood of vertigo returning. Dr. H did some fast head turn maneuver on me last time, and said “oh yeah” which I interpreted to mean “yes the gentamicin did it’s thing”.
Our walking lovechild of Shakespeare and Einstein! Thank you for your entertaining shares - glimpses into an awesome mind!
Yes the HEAD THRUST! That’s supposed to be a great indicator of it’s working or not. That’s what I want my doctor to do!!!
One week since the second shot. (About 7 weeks since first gentamicin.)
Lying on my stomach with head facing left or right gives a subtle counterclockwise spin. Able to drive but Felt pretty gross at the grocery store- mini tilt, walking down the aisles challenging. Getting more off balance and jumpier eyes as the day progresses.
If I can still drive tomorrow the priority will be to stock up on knitting supplies! Gotta be ready for lockdown! Hopefully my last.
I can relate!! I have been cross stitching. Still can’t so stores but I did manage to fish a little on the shore with my kiddo.
Bunker down my friend and I KNOW this will be your last. This is it for you!!
Grocery stores are just about the worst! Kudos to you for surviving the experience.
As someone who had laby surgery, which has an immediate before-and-after effect, I find myself holding breath while reading your and Saera's posts through your gentamicin experience. It's great that you are not having to deal with surgical and anesthesia recovery and haven't taken on the extra risk of a more invasive procedure. At the same time, I read your posts questioning whether 'the beast has been slayed' and want to urge you to just keep walking on those coals -- you will get through and be better for it, even if you don't know exactly when the turning moment occurs. May the force be with you.
Thank you. I wonder the same thing. I’m trying to be positive and trust. Three weeks of gentamicin seems extreme but she says you can’t overdo it. I guess I have to trust for now.
Right now I just want to speed it up. Tired of feeling off. But I also know surgery would have me feeling the same.
I pray this beast is killed after this. I’m sure Anne feels similar. Worn out.
Thanks for checking in on us! Cautious optimism... hopeful that this will make life more manageable, but aware that if the attacks break through, that it’ll be surgery time.
I’m impatient too! I had a couple good weeks, but now that Gent 2 is kicking in - bit of nystagmus with eyes closed, but nauseated with activity - I want the better times again. But hey, it’s summer, so at least I can get outside. And this is still better than having random vertigo attacks... I have to remind myself of how bad that was, and be glad we are on the journey to freedom from it, whether the gentamicin works, or if we have to go surgical... we are on the right path.
May the force be with us indeed! Patience young Padawan.
Or, as Brene Brown says, embrace the suck.
Hoping you’re feeling well!! ❤️
More off balance. I’ve had a couple of one second tilts, that felt like the beginning of a vertigo attack. They are always when my neck is bent over reading etc. That freaks me out, that maybe the gentamicin isn’t fully working.
Fighting anxiety and depression. Gotta get into some routine, which is tough with Menieres and gentamicin! Fake it till I make it, I guess.
I can relate soooooo much to this. How about knitting? Did you get supplies?? I’ve been cross stitching.
If we were close we could walk together!
Ah wouldn’t that be lovely Saera?! Where do you live? Maybe on my travels sometime we can meet up. I almost got to meet Marta of England... next time we visit Hubby’s family there I will do it!
Knitting - doing lots. I wound up sending away for some supplies from Amazon. I’ve used my driving to get to my 12-step meetings - they help ground me.
AnneT: "They are always when my neck is bent over reading etc." Agree. There is something about bowing my head to look at my phone, then looking up, that makes me dizzy for a bit. The head is so bitchy. The rest of the body says, "We're fine down here. What the hell is the problem up there?!"
I am in Minnesota. The land of 8 million lakes. Which has become my new addiction. Fishing that is!
I would love to meet any of you. I know not one other person with menieres except on the interwebs.
Yes. Head movements for me are hard still. In any direction really. Have to go pretty slow. Yesterday tried to move at normal speed forgetting my situation and almost fell over. Lol!
Minnesota. I’ll let you know if we ever are road tripping there!
That’s a good sign, I think, that you are forgetting about your balance sometimes!
Today is 2 weeks since my second gentamicin shot. Things are a worse again compared to yesterday (the world wobbles with walking, oscillopsia while chewing, a bit nauseated) but nowhere as bad as 2 weeks after the first injection. My hearing seemed to be lower a few days ago, but then was better yesterday.
I had about 6 momentary clockwise vertigos in church yesterday, so I left early. Too much strobe effect flickering lights.
I did that in the sporting goods store yesterday. I swear stores may forever be my enemy!