6 months after first shot. I’ve had 2 episodes in the last 2 weeks, both at night - a few seconds of rotation, and 30-60 minutes of feeling under threat of vertigo, like strong beats of nystagmus, scared to close my eyes. Gravol and Ativan got me to sleep. I’m trying not to freak out, but I’m disappointed and afraid. Possible triggers - I’m eating healthfully, but with a lot of Buccholz’s no-no foods for migraine prevention over the last 2 months. Crazy weather ups and downs. Pushing myself with exercise, Christmas preparation and guilt, and just signed up to return to art school in January. I’m fighting the thoughts that -the doctor should have given me my labyrinthectomy -I might have to go through more gentamicin and/or laby -it’s not safe for me to return to normal life. My hubby reminded me that his staff member who also has Menieres and had a gent injection- she also gets these more mild attacks, but they are manageable. She seems to live a normal life. I have an appointment to check in with Dr. Hwang in February. I wonder if I should try to get it sooner, or wait and see how it goes over the next month.
PS I also have been freer with salt so maybe that added to the flare up. Also I just heard from a friend who has a wicked headache this weekend. Still, I had hoped that gentamicin would allow me some indiscretions! I’m hoping this is just a blip...
Anne I am so sorry this is happening to you. Do you think if you ask for a laby your doctor would listen? Perhaps do try to get an earlier appointment. Thinking of you!
Anne, it seems like the gent didn't kill off the hair cells completely enough, and they are still giving random signals that your brain can't reconcile and sends out spins instead. I don't think it's about the weather or your diet; neither of those has been a problem for me post-laby. You don't want to settle to live this way any longer. I am really sorry you're having to go through this. Remember that your previous strategies were to have the gent and then either go for another gent injection or have the laby. You seem to be having enough symptoms that those plan-B strategies could be considered. You deserve to live your life fully.
Thanks, Marta and Clare. I will phone tomorrow and just find out if it's possible to get in earlier or not.
Or maybe February is a good timing - if it doesn’t happen again by then, I’d rather not do more gentamicin unless I really need it. Hmmm. And if it does happen some more, then I’ll know more - if they stay in the mini category, then gentamicin. If they turn into whoppers and my hearing loss is worse, then maybe laby. I’ll review my notes to remind myself what the second injection recovery was like. This all sucks, of course - it’s making me second guess my decision to return to art school. Anyway thanks for listening and weighing in !
Anne, that sounds like a good strategy. Folks living in northern latitudes may want to be cautious making big decisions during times of low light when depression and hopelessness color the world. I hope this won't deter you from art school. Learning and creativity offer moments when it's possible to escape the weight of the disease in your mind. May the force be with you!
The winter gloom has got me, so, yes, it’s really hard to decide about art school. I may wait another semester before returning, or just accept that I’m done. There is just so much energy drained from me with ongoing (but mild) oscillopsia. I feel tippy in certain buildings- the art school has nasty lighting, old sick building brick, lots of arty chemicals. I’m 54 and trying to be done with workaholic behaviour. Last night I had another episode of twitchy vision that felt like vertigo coming on - probably weather related. One more day and the daylight will start to get longer! Gotta work my gratitude and optimism hard this time of year!!
... and two more episodes yesterday. The first was at church (a bad vestibular and migraine place for me - funky visual patterns on the carpet, overhead spinning fans with light coming through causing a strobe effect, people moving, loud music, perfume, gets stuffy.) Lessons and Carols Service, so crowded and lots of live music. I felt headachy and a little off. Then while standing during a hymn, I got a quick blast that felt like the beginning of a drop attack- I exclaimed whoa and had to grab the pew in front of me. No actual vertigo after that, just queasy. I took my drugs and went home. Going to bed - it took a long time to sleep because I kept getting brief falling or turning sensations, in spite of Gravol and Ativan. While I’m glad these didn’t turn into a full spin cycle, I’m disappointed. Falling into apathy.
Anne, I feel your pain. It sounds like we had similar church experiences yesterday. I am just as off and gross feeling today, but in the comfort of my own home. I don’t know what gives and I am feeling a massive pity party as well. I pray you have wisdom for your next step, even if that step is waiting longer.
Apathy, like boredom, falls away under its own weight if you pay close attention to its mood, sensations, shape, texture, & associated tentacles—emotional & physical—from a nonjudgmental distance. Which is to say I encourage you to meditate on it. To reframe your perspective of it, as it arises, from the frame of disappointment to the frame of benevolent curiosity. With practice, this method of introspection will prevent you from falling into it, & allow it to fall past you. Oh, oh I do despise funky carpet patterns. Merry Christmas to you, Anne, & to everyone!
I am sorry to hear you are going through this Anne. I am glad your next appointment is sooner. Stay strong and Merry Christmas
Mini-update. I saw Dr. Hwang in January. At that point, I hadn't had anymore visitations from the beast. I tried to describe what I experience, but she couldn't really help clarify if gentamycin would help. She was willing to shoot me up, but I just got a gut-feeling/anxiety not to do it. So we left it. I've had one or two more mini-vertigo - usually middle of the night after salt indiscretions combined with barometric pressure changes. I'm only aware of it for a few minutes. It's a veeeery slow spin, nothing like what I had before. My day-to-day balance is still funky, with some oscillopsia with walking and chewing crunchy things. I think that doing my vestibular rehab exercises/physio helps. After walking, when I stop, sometimes I feel like I'm one of those flat escalators in an airport. One silver lining of this pandemic time... I don't have to brave! No grocery stores or meetings in nasty buildings! I don't have as much exposure to industrial flourescent lights, which make me feel tilty. Visiting people over Zoom or Facetime is ok, though I'll get tired and dysequilibrated if I'm on the computer too long.
Hi all I’m about the same as that last post. I thought I hadn’t posted since December! Ha! I haven’t forgotten all of you (but I’d like to forget Menieres - if only that were possible!)
Hi Anne , so nice to hear you. I am glad to hear you are not feeling worse and that there have been no more proper vertigo attacks. Physio does help and I am glad you gave it a go. Are you back to normal in Canada in terms of lockdown? we are somewhat going back to normal and it’s going to be a journey. All the best to you
Hello All it’s been 1 1/2 years since my 2 gentamicin shots. My balance sucks, and I walk kind of hunched and wobbly. But I was mostly free... certainly free from the wicked puke inducing vertigos. I’ve had a few momentary “whoop” sensations, but more recently a couple of 20-30 seconds of actual vertigo. Shit!! And then a few hours of just feeling like I’m on a rough boat ride. This seems to happen during Chinooks - unseasonably warm weather, and when snow is just starting. The rotation is clockwise, so I think that means it’s still coming from my bad right ear. I’ll phone Dr. Hwang tomorrow... it may take awhile to get in for another shot, with Covid overwhelming our medical system here in Alberta.
Well ok then - she’s seeing me this Friday! I guess I’ll just go ahead with gentamicin #3. Hopefully the balance recovery is not as hellish as the first time.