If you can handle reading on your phone or computer... here’s a review of the different approaches to gentamicin injections. Their overall conclusion is that it doesn’t matter too much which schedule/dosing you do. Systematic review of intratympanic gentamicin in Meniere's disease - Database of Abstracts of Reviews of Effects (DARE): Quality-assessed Reviews - NCBI Bookshelf But if you are uneasy about using the gentamicin at home, or think it’s just adding to the side effects (maybe contributing to the slow vertigo?) then search for dr. Hains’ stuff, which says you are fine having had the injection in the office. For more google deep diving, google: Intratympanic gentamicin. If you stumble across any info about the vestibular compensation after gentamicin, let us know!
I recorded my meeting with the doctor. I’m going to listen to it and see if I can pinpoint why she chose this route. Once I gather that information and look at the links your provided I’ll update!!
Okay. So listening to her and I converse gave me a clearer understanding of why she chose this low dose daily perfusion. We are not trying to save my shitty hearing we are trying to maintain a low but constant level of gentamicin to destroy the hair cells that are sending the wonky messages to my brain. The goal is to avoid a laby by doing this instead but if a laby happens I may recover quicker due to the ablation done by the perfusion at home. I will know it is working when my attacks stop or slow down and I find it harder to balance. Then I focus on rehab. So far that’s the plan. Sound familiar?
Sounds familiar (the expected reaction to gent) and makes sense (her plan and reasoning)! That’s reassuring that your doctor is sharing her thinking. Fingers crossed for you!
Well today I’m out cutting down two huge eyesore bushes that I can’t stand in front of our new home we just bought end of May. Doing my drops and not feeling the effects yet but alas it is only day 4 really so I am getting chores done that I won’t be able to do easily while recovering. How are you?? Did you post any updates on your thread?
Just updated it! Thanks for asking! Doing ok. Moments of ...?happiness? Wth is that? Off to dr Hwang today at 1:15. To gentamicin again, or not, will be the question.
Sounds like you are on the right track to me. Day 6 or 7 was when I started feeling very light headed. Good luck and yes get your work done while feeling good .
Today is day 4 of drops. 5 since injection. Nothing yet but LOUD tinnitus and very tired feeling. We shall see what the day brings.
Today is Thursday. Officially one week out from the injection and 5 full days of drops. Definitely feeling some imbalance and wonky feelings. At times some nausea. Not spinning but like a slow dizziness that if I’m still is almost imperceptible. The more I move or turn my head, the more ick I feel. I assume this is the gentamicin doing its job. As well as tHe tinnitus getting louder as it’s killing my hearing too. Made it to my sons playoffs games. Held onto my fiancé the whole time and had MAJOR anxiety throughout but stayed the course and even got some pictures. Tonight is another game and my stepson has a tournament this weekend. Hoping I can make it all. Even with some help. I am trying to keep moving and not give too far in to the iciness I feel. Whether it’s vertigo or the gentamicin working, I want to try and keep pushing through. Here’s my adorable son playing ball just because I’m so glad I could go see him play. And they won!
Sounds like the gent is doing its thing! It’s weird to be saying, hurrah, I feel terrible! Be kind to yourself especially these next couple of weeks. If you miss some of the kids’ games now, remember it’s for the good cause of achieving freedom soon. Your brain will need lots of rest as it starts to adjust to life without that one balance centre so don’t push too hard right now.
You are doing great and yes by your description the gent is kicking in. As Anne said get plenty of rest especially after being out and about. Keep on keeping on!
Thank you. Right now I’m laying in bed for a bit. I have a game to try and attend tonight so I’m resting up in the meantime. This is VERY hard for me as I’m usually always on the go. I do think I’ll need some rehab. Anne T where did you get your ideas for “training” for vestibular rehab? I can’t get in for a couple weeks yet and I wonder if I shouldn’t start now even while still doing drops for one more week?
Search vestibular rehab or Physiotherapy threads on this forum. The House Ear Clinic website has a video with a doctor teaching the moves. I’ll post the exercises I was shown.
I posted them on the thread "Vestibular Rehab". I think it's ok to start them now, even just to learn them. My physio doesn't want to see me until I'm over the second gentamicin injection effects. A lot of the initial compensation will happen naturally. They can help us fine tune any left-over balance issues. When I was bottoming out with the gent effects, he encouraged me (over the phone) to take my medications to cope with the nausea, take it easy for a few days, don't try to catch up on everything as soon as I felt a little better. That really helped. I only needed them for a couple of days, and then a few more nights. I'm glad I already knew some mindfulness meditation skills. It might be helpful to have some guided meditation app or something to help with coping with not being able to be busy. You may or may not tolerate much TV but Netflix helped pass the time. I kept a little journal of the symptoms, meds needed, and what I could or couldn't do, my response to activities and the rehab exercises. That really helped to see when things were improving. Also, a couple of days, I panicked, thinking I'd gotten worse again - but then I saw that those were always after I'd stopped a medication, so I could still count that as an improvement.
Super helpful. I just tried a few. And the side to side movements and bending over to lick something up is super hard for me. Never was before so this must be the gentamicin. Omg I’m happy I feel like crap. Hahahahaha!! I’ll work on them slowly and take my breaks knowing I still have a full week of drops to go. I’m going to check out that thread now.
Woop woop I think I’m starting to ride the gent boat ride again too! Eyes a little jumpy and slow to focus, kitchen table rocking a bit. We will batten down the hatches together.
I have baseball tonight but will wear glasses and bring a cool cloth and cover my eyes like horse blinders to focus on what I can and not try to do too much. Super queasy today and uneasy. Small Valium and some zofran before ball as well. Then home to bed!
I a dolly owners the gentamicin. If I lay still in bed and don’t move I feel pretty darn good. Start moving around and I’m sea sick! 6 more days of drops then I will see what’s next. I’d like to KNOW it’s done it’s job before starting rehab full force and venturing out with confidence and not my buddy anxiety.