Glad to hear you are getting some medical support. Your symptoms sound a lot like mine just after surgery. Thankfully they kept me in hospital for 4 days to get through the worst of it. That slow spin -- it wasn't the kind of vertigo as before, but I couldn't move without feeling nauseous. On Day 2 the physio came to see me and wanted me to move from bed to chair. As soon as I sat up in the bed I barfed all over him. He didn't push me after that. On Day 3 I was able to get up and take a shower by myself, and the spinning had stopped. I've had no spins since, but imbalance was a big challenge. I used a hiking stick for a while and avoided visually distracting places like the grocery store. Walking in open spaces was a bobble-head experience, but I made sure to do it every day, trying to focus on the bouncy horizon. The meds they sent me home with on Day 4 were compazine, lorazepam, and zofran. I don't think I took the compazine at all post-hospital, but the lorazepam and zofran were necessary for the car ride. Zofran remained an occasional friend for a week or two, then ghosted it. I didn't drive for a month -- partly because we agreed my daughter would take the car to keep it out of temptation. Anne, I hope your current misery signals the end of those pesky hair cells and you can shift into recovery mode very soon.
Last night was much more comfortable on Ativan and gravol. There are strange mini-adjustments: The spin is fairly constant, but I’ll occasionally find a still spot, even for a few moments (looking straight ahead, slightly down to the right). Reading, painting, and writing - spin for a bit, then focus stays ok until I stop what I’m doing and the surrounding spins. Or, Once I’ve been eyes open for awhile, when I close my eyes, the spin is more intense; once it’s calmed, then opening eyes gives the more intense spin. I really appreciate the shared experiences here. It helps so much. Clare, I’m thinking I got a pretty good dose of gent (she put in extra because I swallowed, but I didn’t feel any go down my throat at the time) so I may indeed be closer to high dose gent, or a chemical laby. (And good for you for puking on an overly pushy physio! Ha!)
After nap today, I had double vision for awhile. Lying on my back, partly propped up seems to be the most comfortable for my brain. Lying on my side (even if my head and neck are in straight alignment) increases the spin. And yet... maybe it’s just the drugs, good sleep, rest, and minimized screen time, I feel like today was slightly better than yesterday. Fingers crossed. Cautious optimism.
Day 18. Good sleep with a small dose of Ativan. Despondent to find the world still doing its slow spin, faster when I look down or to the sides. Bouncing drunk gait, hanging onto walls. But no double vision so far this morning. It’s one week since this slow vertigo started. It was at its worst Days 15-17. I walked with a cane outside for less than 5 minutes yesterday. Took fewer meds, and tolerated tv for longer before nausea hit. I’m hoping this is the starting point of my rehab. Do you think I need to just get moving, in a very paced and careful way, in spite of this background vertigo? I think so. Oh the tedium. Grateful for this place, mindfulness meditation skills, CBT, prayer and prayer warriors, supportive hubby, a cat who adores my slow pace.
Yes Anne I do think you need to get moving as much as possible. It will make the difference and speed up your brain adjusting to the gent shot. The bouncing gait is totally normal and will only get better but you have to walk. Walk a few times a day if possible. You got this!
In spite of on-going vertigo, nausea and occasional double vision... I walk a little with the cane, do a little knitting or painting, wander the garden, do small bits of house tasks. When the nausea or vertigo increase, I stop, find a still point, and let it settle as much as possible without drugs. Looking at scholarly articles is just freaking me out. To go through all this, and knowing those little troublesome cells might grow back... even years later... knowing a laby is there but being withheld until I jump (stumble) through this hoop.... Mood. Thanks for listening.
Things are improving!! 3 short walks and a bit of gardening yesterday. This morning, I tolerated being in a passenger in a car, a long loud church service, and can now look forward and to the right without much spin or nausea.
So happy to see this, I am keeping up to date with your progress as I am considering Low Dose Gent in the future, I am especially pleased for you to see you are feeling better. How are other symptoms such as Fullness and Tinnitus?
Hubby looked at my eardrum again - still inflamed, but less so. We may be flying to Vancouver on Wednesday if I feel up to it. I wasn’t given any flying/no flying guidelines. Angela I’ve had the Menieres fullness for about 10 years. It felt different after the shot, just strange having fluid in there working it’s way out. My tinnitus has been loud this last hellish year, and did seem even louder, or a different quality, the first post-gent days. That’s calmed down now, probably to pre—gent levels.
For what it’s worth... I found a study that showed VNG results post gentamicin aren’t necessarily predictive of whether you’ll be vertigo free or not. That is, some who appeared to have 0% vestibular function still had vertigo; and some with apparent residual function on VNG were clinically vertigo free. So I guess I won’t bother begging for a VNG. I’ll move forward, assuming my attacks are cured. If they recur, then I’ll seek laby. (Haha... sounds like a lonely hearts club ad... “SWF seeks Laby for vertigo free walks on the beach”)
Although now that I think about it, which I probably shouldn't have, "Laby" is often used as an acronym for Labrador, which is even nastier.
About 4 weeks post-gentamicin. My worst days were around 2 weeks after the injection. Improvements since then - can walk not bent over, a bit faster, for about 30 minutes with a couple slight nausea breaks. Oscillopsia decreasing, but still present in car and walking. I can read without nausea. Only very occasional short double vision. I’m off the benzodiazepines, Gravol/meclizine, Epival and Diamox. Conversation, while I enjoy it, leaves me exhausted. I’ve had no vertigo attacks, but this bizarre new positional vertigo (mild compared to Menieres style) is still hanging around in upon wakening. I’ve only found brief reference to it happening post gentamicin in one of Hains’ articles. I wish I could understand it. The stress of being away from home, supporting my dad while old mom is in hospital, and adult son struggling emotionally back home... not helping. Anyway, that’s me for now.
Anne - have you tried sleeping propped up a little bit? I wonder if you sleep not completely flat, if that would help.
Hi joney and Marta I was sleeping propped up, and trying to stay straight. I’d eased out of doing that, but that’s a good idea - I’ll go back to that for awhile.
5 weeks. No vertigo attacks. Balance and energy improving. Weird positional vertigo very mild, mostly just when I wake up, Epley still helps. Enjoying time at the family cabin - very rugged coastal area, so it’s awesome for natural vestibular rehab! And quiet. Caught a perch this morning but he was too beautiful so I let him go. Grateful for all your shared info and support. Still undecided whether to push for 2nd gentamicin or not on Monday, but not stressed.
Nice, Anne! If your costal abode is located significantly lower in altitude than that of your primary crash pad, anticipate a possible & brief spike in aural fullness when you arrive home. Or vice versa when concerning elevation, descension, & ascension.