How do you know if the gentamicin has worked?

Saera
Re: lack of data on your drops protocol. I guess you could look at the low dose outcomes, especially Dr. hains’ info, since you had the 40 mg shot to start. You just had bonus!

And even with studies saying eg 80-93% success... I don’t know if I’ll be in the 93 or the 7. You know?

It’s a drag that only time will tell. But I’m glad we have these treatments available, and are in the system getting it done!!

 

Day 15. I spent nearly 4 hours chatting with a few friends, catching up and enjoying lunch together. I drove both ways. I had a couple of zaps of tilt feelings - sitting, head turned left. And whoozy off balance feeling if I stood for a few minutes.

Just had a meditation and nap. Will also take it easy for the rest of the day! Maybe a short walk and get doing my vestibular exercises again.

 

Day 17 after second gentamicin.

Moderately off balance yesterday. Have been neglecting my walks, yoga, Physiotherapy. Just not too motivated.

Felt a bit of nystagmus and slow vertigo with eyes closed when I woke up. Had another 1-2 second mini vertigo while standing in the kitchen.

Looking at my notes from the first gentamicin, today may be the bottoming out day. Hopefully things will start improving again now. And I’m hoping that these mini-vertigos are the gentamicin, not Menieres breaking through.

 

PS. I had Hubby (family doctor) look in my ear. The eardrum has a little redness and thickness to it, but the hole is healed up.

Yesterday morning it gave me a brief zap of sound and pain, like when the doctor put the freezing on it. So, not sure what that was about.

 

We are definitely on the same page, Saera! Your post sounds like the inside of my head. Even our doctors... Hwang and Huang! For real?

The timing of vertigo attack free does sound hoped, for both of us, that it’s working. Maybe doing your shot + drops = 2 low dose shots. So maybe you also have 93% chance of it working.

I did a bit of my vestibular rehab yesterday. As Onedayatatime says, it’s time to get serious.

Kind of queasy/headache on a 25 minute walk last night. Took a nibble of Ativan before bed. Now I just feel hungover! And wobbly, eyes not keeping up with my head movement if I go too fast.

More family stress to deal with. Will try to take it easy.

 

3 weeks since Gentamicin shot #2.

Exhausted. Trying to rest, but I get a little of the counterclockwise movement and nystagmus with my eyes closed.

It’s such a long tedious road - sometimes I forget that I’m still in the Gent Zone!! - but I must be getting close to the turnaround point again! So I’m cheering myself on. Balancing act between keep moving, and take it easy.

And remind myself that:
1. It was waaaaaay shittier at the 3 week mark first time around and
2. The fact that I’m feeling it means it’s working and hopefully I’ll keep being attack free.

 

Day 23. Momentary double vision when I woke up. A bit hunched over, feeling for walls sometimes as I walk around the house. Hopefully I’ll be ok to drive the short distance for a very overdue lab appointment.

Saera
Hugs! Praying for wisdom for you and your doctor, and your fiancé! And peace with whatever your decision is today.

 

3 1/2 weeks.

The morning double vision is gone. Wobbly walking, but I’m doing vestibular exercises. No cane. Practiced music with the team last night - tolerating the sound (in ear sound system).