Recovery From Gentamicin for Meniere's | How debilitating is it?

[@jlgracegrace]

Hi Kelly, you're so precious and thank you for being available for so many of us. I'm going for 6 PT visits to help my balance. Thankfully my balance isn't very compromised. Just diagnosed with Menieres about 10 months ago. Praying for you for relief from your symptoms and that you'll be vertigo free after surgery. And belated happy birthday too! :)

[@IncredibleAnyway]

Oh thank you for your kind words and your birthday wish!! That means so much to me. I hate you live with Meneire's too. I hope the PT helps you! Let me now how it goes. Thankfully I am now symptom free after my body adjusted to the gentamicin!! YAY! I'm hopeful it lasts until I can get surgery.

[@helenneemeyer1602]

So proud of you! Keep up the faith you are so strong and you are definitely INCREDIBLE ❤

[@IncredibleAnyway]

Thank you! I'm fighting!

[@kylo_null_pointer]

May the strength be with you, warm greetings from Poland!

[@IncredibleAnyway]

Thank you!! I'm so glad you are here. Warm greetings back to you.

[@waynemckenna4048]

Hi Kelly, great videos, most needed for us beginners. I have Meniers now for 38 yrs and just got my 1st Gentamicine injection 16 days ago a still feel no effects of vertigo. He buffered the standard 40 mlg solution to end up with 26.7mgs. strength. and the injection went perfect, I received his service at the Johns Hopkins Hospital in Baltimore,md. he is very renowned in his field of otology, so what do you think about me being over due for any of the effects of the injection, not yet happening? Thanks for your time.Wayne

[@FairyGodpa]

Gosh that's so hard! This was so interesting to learn about though. Wishing you well always!

[@IncredibleAnyway]

Thank you! It is hard, but thankfully a good outcome even if temporary.

[@MsBlackRose]

So proud of you keep your faith and positive thank you for always trying with the contents🧡🧡

[@IncredibleAnyway]

Thank you!!💜💜

[@hersenwikkelspunteu]

Your always soo good at explaning these things. 👍 I hope for and with you that the positive effects of the gentemiacin holds on long enough to get you in with the new doctor. 🤞🕯️ Hugs Marloes❤️

[@IncredibleAnyway]

Thank you - that means a lot that you would say I'm good at explaining things. I try really hard! I'm hoping so too! Hugs!!

[@faraz1231]

Thankyou for sharing.. I have a question...Did you give any thought to endolymphatic decompression before vestibular nerve transection?

[@IncredibleAnyway]

I had had endolymphatic sac decompression in 2011.

[@faraz1231]

@@IncredibleAnyway oh okay... How useful was that if at all?

[@muhammadusama2062]

I am taking betahistine and it has pretty much worked for me.. And despite of having good balance i am afraid to get off of betahistine.. I am reducing the dosages though.. Had my last vertigo attack in May 2022. Since then, no major vertigo, but sometimes get dizzy and off balance which is not too severe... been living with it since 2017.. I hope never to get vertigo attack ever again, 🤧

[@IncredibleAnyway]

THat is wonderful that betahistine worked for you!! I can understand why you are reluctant to get off of it. At least you know that if you get off of it and get more vertigo again, you can go back on it. But I truly hope you never get another attack again! They are horrible.

[@vanessabuckland7372]

I had my second injection 11 days ago. Unfortunately I contracted Covid at one week and have been weak and sleeping a great deal. At first I thought my constant dizziness was a side effect from the covid but realize it’s from the injection! I mean I can’t sit up, walk by myself or even move my head side to side without spinning. I’m absolutely despondent. My question is, what can I do to encourage my healthy ear to perform the correction? Do I need PT? I totally enjoyed your video. It was very helpful. I will share it with my loved ones so they get it.

[@IncredibleAnyway]

I'm sorry I'm late in replying. That is horrible that you got Covid on top of recovering from Gentamicin. How challenging. What you described sounds very typical to recovery from Gentamicin. It takes time for the vestibular system to recover. Yes, vestibular physical therapy can help. Making sure that when you can, you get up and do what you can to give your healthy ear a chance to learn and compensate. How are you doing now?

[@vanessabuckland7372]

@@IncredibleAnyway The same, unfortunately. Today is 3 weeks!!

[@dawooddawood3578]

Hi Kelly I had gentamicin injection 10 days ago, actually I started feeling unbalanced and vertigo so please how much time this symptoms takes to recover 😢

[@IncredibleAnyway]

I'm so sorry my reply is delayed. How are you doing now? It is different from person to person how long it takes to recover. I would say it took me about 4-5 weeks. But it is different person to person. You can ask your doctor about vestibular physical therapy and that can sometimes help with recovery. But it does take time for the brain to learn how to compensate.

[@EmilysLifeOnWheels]

It must be really tough mentally to do this to feel so miserable and be like ohh that means it’s helping my gosh 😮

[@IncredibleAnyway]

Thank you - it is really tough mentally. Thankfully it is temporary, but in teh beginning I certainly wonder - why am I doing this again!?!

[@EmilysLifeOnWheels]

Wow to go from 1- 49% is crazy

[@IncredibleAnyway]

For real.

[@marcuswhy]

Thanks for sharing. Do you mind sharing what dose your shots were if you got 9 of them. I just got my first one which was 40mg/ml. My doctor said he only does this for about 50% of patients and the other 50% he does a second shot. Never had to do a third shot. 9 seems a lot unless they were low dose?

[@IncredibleAnyway]

What your doctor said is extremely common. Usually people get significant relief in 1-3 injections and are done with Meniere's vertigo. It is highly unusual to need more. I don't remember the concentration of the first 5. The last 4 that I got were high dose and my neurotologist cut a hole in my eardrum, directly inserted high dose gentamicin and also a dissolvable styrofoam type material to delay the release so that the ear is affected longer by the gentamicin. I have a video here that describes this process: kzbin.info/www/bejne/gmSxeWecbc99fZY Problem for me was that I'm one of the rare people whose inner ear hair cells grow back. The gentamicin's goal is to kill those hair cells adn stop the vertigo. But, mine grew back, which is why we kept having to do the gentamicin. Gentamicin would kill the hair cells, they would grow bakc and then I'd need gentamicin again. Eventually, we stopped the gentamicin treatment and I had the Vestibular Nerve Section (brain surgery for Meniere's): kzbin.info/www/bejne/hn2aloKHmKijbNE Best of luck to you that the gentamicin helps soon and very soon.

[@marcuswhy]

@@IncredibleAnyway Thank you so much for replying. Wow, you don't met many people that got the Vestibular Nerve Section. You must have had an awful time with it all:( Did it work? Are you vertigo free now?

[@IncredibleAnyway]

Yes it is very rare for anyone to have VNS - that is why we did so many gentamicin injections - to ensure it was in fact the nerve cells growing back. My vestibular testing also backed this up. I wish the gentamicin had worked so I didn't hvae to get the VNS. I documented my entire journey with Vestibular Nerve Section here on YT if you are interested. The playlist is here: kzbin.info/aero/PLTGnpduSk6I2cOsSv96EGOa1mCegJ7vVG The video of the day I had the surgery is here: kzbin.info/www/bejne/Z2fPZWWiert2npo I do not have vertigo attacks from Meniere's at all anymore which is thrilling. I do have dizziness and imbalance in certain situations that my brain has not yet learned how to compensate for or perhaps will not. This is from the VNS itself.

[@roopabuggana4183]

Hi Kelly! Was it a low dose gentamicin that you were administered… I took a low dose one two days ago, have been having disequilibrium since then… waiting for it to subside…😟

[@IncredibleAnyway]

The time I was discussing in this video, it was definitely high dose of gentamicin. I hope that the disequilibrium evens out for you soon. Hope it gets rid of your vertigo too!

[@roopabuggana4183]

@@IncredibleAnyway Thank you

[@Sarainvt]

Hi! Just discovered your channel. I’m having an injection in September. I only have 20% vestibular function now… Do you think because I already have lost so much that the injection might be a little easier for me with post injection symptoms?

[@IncredibleAnyway]

Do you mean: do I think that if you get another (2nd) gentamicin injection, it might be easier for you with post-injection symptoms? I think it is possible. Your brain will still be dealing with the loss of that 20% you have left, so it will still be challenging. But it might not be ask challenging as losing the 80% that you did. Let me know how it goes if you decide to get a 2nd one.

[@JanitaGutierrez]

Just found you from your NDPH video how is that going ??? I been suffering with daily headaches since July of last year 😢

[@IncredibleAnyway]

I'm so sorry you have daily headaches. Such a tough things. My NDPH is the same -thank you for asking! Have you found a doctor or a treatment that helps you?

[@shrabonirainy0397]

Hi ... I have been diagnosed with Meniere's And had inj gentamicin twice ..once in 2022 and again this September 2024 .. but this time after taking the injection I am having the adverse effect, i am feeling imbalanced and cannot concentrate in anything... it has already been two months.. please help me regarding this

[@IncredibleAnyway]

It is normal to have a reaction where a person is more dizzy and imbalanced after gentamicin. And the recovery can vary person to person. That said, I'd imagine that after a couple months, these symptoms would be improving. If it isn't improving, I would call your doctor and talk to them about or make an appointment.

[@shrabonirainy0397]

​@@IncredibleAnywayokhy.. thank you so much....

[@nicplanet7764]

Does your hearing and tinnitus continue to decline following gentamicin?

[@IncredibleAnyway]

With Meniere's, yes, hearing continues to decline no matter what the treatment. I don't know that tinnitus would get worse. Hearing can be affected by Gentamicin but only those hwo are genetically predisposed to have hearing loss from Gentamicin (4% of the population).

[@skldmatriz]

Hi Kelly, i am at 7 days since since my first gentamicin injection, but still i can't feel any imbalance symptoms. How many days did it take you before feeling some effects ? i am worried it didnt work

[@IncredibleAnyway]

I am SO sorry I couldnt' get back with you sooner. I have been very ill and then had surgery and couldn't look at my comments til now. Sometimes it took 10-14 days for the gentamicin to kick in for me. Sometimes as short as 4 days. Have you experienced any symptoms yet?

[@VernonRhem]

I had a bad baisl gamg stroke cant hear out one ear and eye is off to bad balance spining all the time

[@IncredibleAnyway]

Oh wow. That is rough. Thank you for sharing. I'm sorry to hear that you are off balance and spinning. I'm rooting for you. Please know you are not alone.