I am in my forties and was diagnosed about the same time as you with Meniere's. I haven't had too many episodes of dizziness with it thank goodness but i do worry for the future as I already have chronic migraines, chronic fatigue and several other problems. I wouldn't be able to have most painkillers so I hope the pain isn't too bad. You are very brave and seem to be quite the pain warrior! Well done for getting through all that and I wish you hope for something to help in the future!
The only reason the gentamicin was painful was because the first doctor who was doing it didn't dilute the medication. If he had just diluted it, it would've been SO much more tolerable. My most recent doctor diluted the medication and the med itself wasn't painful. The doctor can also buffer the gentamicin, which changes the pH of the med. So if you ever need a gentamicin, they should be able to make it less painful than those first 5 I had. If you ever need gentamicin injections, and it doesn't work after the 3rd one, it's time to talk about some other treatment. I wish someone had told me that. But, live and learn I guess! My heart goes out to you that you are living with all these things! I have chronic migraines and chronic fatigue so I truly understand and see you. You sound like a warrior! Thank you so much for your encouragement - it means so much from those who understand like you do! I'm also in my 40's!! :) Sending hugs your way! 💜
@@IncredibleAnyway Ty for your helpful and kind answer! I have noted those things down for my future. We definitely must both be warriors! Wishing you easier days. Hugs xx
My heart goes out to you. Because of my battles with cancer, I know what it’s like to get your hopes up and have them dashed. Sometimes it brings to mind that scene in the movie “Alien”, when the crew members were celebrating. They felt they were in the clear, and suddenly the beast roared out of one fellow’s chest. Nevertheless, hope springs eternal. I’m pulling for you❣️
That is a really great example about Alien. I've never thought of it that way! Hope is so tricky. It is vital for persevering and living. But sometimes it can be hard because hope can be dashed and that is really painful. The good thing is that there is always hope. As you say hope springs eternal. How are you doing? Are you still receiving treatment for the cancer?
I am so happy that I found your channel! I am 20 years old and I have suffered from Meniere's disease since I was 15 ): I feel that I am missing out on a lot. I could not go to university because of it because I am very afraid that if I leave the house I will get a dizzy spell. I no longer leave the house except in extreme necessity. I have panic attacks because of Meniere's disease and I do not know what the final solution is. I only take medication. I hope to live like any normal person and be able to leave the house without fear.
I'm so happy you are here! I hate that you've been dealing with Meniere's for so long. IT is so hard to miss out. I can understand the fear of leaving the house. Do you mind me asking what you take medication-wise? Have you asked your doctor about trying injections in your ear? Thank you so much for sharing your story. You are not alone. IT is rough and so scary to have these attacks. I believe you will get to that point where you can live like others and get out of the house without fear.
Oh gosh, that looks so painful and uncomfortable. I'm so sorry you need to have that done again but I'm praying and wishing all my best blue star wishes that it's a success! 💙 You are such a warrior!
This is why I chose the Vestibular Neurectomy instead of this route. God bless you for showing the trials and tribulations of having a balance disorder.
I *wish* my doctors had given me that option sooner! I asked and asked and kept being told "no" which is so confusing to me. I'm hoping in February when I meet my new neurotologist that he will see how surgery is clearly the next step. I don't know which surgery he will want to do. But, I'm ready for it. Thanks for being an encouragement! I forget - do you have any permanent repercussions from the vestibular neurectomy?
@@IncredibleAnyway yes. Even though the nerves were cut, I still have a failing inner ear. So I still have little to no hearing on that side, tinnitus, and I can turn my head sharp enough to make me uncomfortable for a minute or two. I will never be 100% again per the doctor. I rely on my eyes more and learned techniques in rehab to function. I do miss being able to sit in my recliner and not feel uneasy.
Good evening. I had my first gent injection 2 weeks ago and I’m having a heavy head and oscillopsia, where my eyes bounce with anything that jostles my head. If I slight shaken my head in a “no” direction the whole sight picture move and I can keep focused on an object. Is that something you experienced? Is this a normal reaction? I went for my 2nd injection today and he would not give it due to this issue. Please let me know if this is a normal reaction. I really appreciate it
My recovery from gentamicin was very challenging and the veritgo and imbalance were so much worse at first. I’ve never been told that I had oscillopsia, but I will say that the world was always in movement. I don’t know if it is a normal reaction or not - that would be a good question for your doctor. But I highly recommend askign about vestibular therapy that can be done by a physical therapist. It is SO helpful in recovring from something like this. I did a short video on some vestibular therapy treatments I did after Vestibular Nerve Section. While the exercises can be hard, they help in the long run. I can see why he would wait to give the 2nd getnamicin. Your body probably just needs time to recover. Here is a video I made on my recovery from gentamicin: ua-cam.com/video/QC2tWdA3akQ/v-deo.htmlsi=3mmtzqJxaOX91v_f Here is a video I made on the vestibular therapy: ua-cam.com/video/QC2tWdA3akQ/v-deo.htmlsi=3mmtzqJxaOX91v_f I’m rooting for you. Recovery is rough adn it takes time, but I beleive it will improve for you. It took me at least 6 weeks to be functional again after the first few gentamicin injections I had. I’d also not hesitate to ask your doctor all these questions especially if things dont improve
@@IncredibleAnyway thank you so very much for your response. If I shake my head in the “yes” or “no” movement, or driving in the car, going over bumps, everything is jumpy and out of whack. Even if I do the therapy where you focus on a spot with your eyes and move your head back and forth, the object I’m focused on shifts around. It’s very strange. Could be perfectly normal, but I don’t know anyone to ask these type questions. Thank you for all you do and for your encouragement. Means so much to me and I’m sure many others who suffer from this terrible disease.
@@IncredibleAnyway I feel like I have been making slow improvements, but today I have felt like my bouncy vision when moving or walking, is back to square one. Did you have setback days or days you just didn’t feel like you were still moving forward? I’m only on week 3 after my gent injection, so maybe I’m rushing things. I’m able to walk, my vision just seems very off when walking or in a bouncy vehicle…shaking my head yes or no, I cannot focus on anything because the whole picture through my eyes moves. Is this normal from your experience? Thanks for everything.
I’m so sorry - UA-cam doesn’t let me know when I have a reply to my comment replies, so I didnt’ see this til I was lookign through my comments in detail just now. I hate I didn’t get your comments sooner. How are you doing now? What you described seemed normal to my experience. It is a very rough recovery and much much slower than I had anticipated - many many weeks. I also experienced feeling like I was improving and then having a set backs. You are doing such a great job - persevering so well through such a rough recovery. WEll done in doing the vestibular therapy exercises. That will help you in the long run adn. Please update me if you have a chance. Continuing to root for you!
@@IncredibleAnyway thank you so much for your response. I’m basically the same. Bouncy Vision and heavy head feeling is still there. I’m now 5 weeks post injection so I figured I’d be showing some signs that I’m going in the right direction, unfortunately it’s doesn’t feel that way. Head movements still make my head feel like it’s heavy and wants to fall. My eyes still have the weird bounce and can’t keep a focus on a spot while doing the vestibular exercises. I’m a bit discouraged, I won’t lie. It’s like I’ve traded one dreadful thing for another. I’m still hopeful and prayerful for a recovery, I would just think I’d have made some sort of progress this far along. Thank you again for you kind words and encouragement not only in word but also in the way you live and remain positive…thanks again
Hi kily I have meniers since 2011 .now I used to live whit tinnitus and my hearin it’s very down…I don’t have to much attacks vertigo like before but I have lost hearing.what I should do pls to get my hearing better ??
Hearing loss from Meniere's disease is permanent. However, you can go to your doctor who will refer you to an audiologist and they can get you hearing aids and support.
Hi Kelly - I could just SEE ur pain omg but we Gals💪💪are made of strong stuff right? Btw I'm not a "dog person" but ur Service Dog is adorabile... waiting patiently with his Do Not Distract ribbon - c🙋🏻♀️u later
Good question. I have unilateral Meniere's, so it only affects one ear and it is the same ear every time because only one ear is diseased. My right ear is my affected/diseased ear. There are people who have bilateral Meniere's meaning that they have two affected/diseased ears.
No. I had gentamicin injected 9 times and never lost hearing. I have a video on gentamicin and hearing loss here: ua-cam.com/video/WRpFzUIeHrE/v-deo.htmlsi=FpZ6Fn81wAJZEnOI
I'm sorry you have bad vertigo. It really depends on what the cause of the vertigo is. The cause determines the treatment. Have you seen a doctor about the vertigo? What do they say?
It is possible to have only one Gentamicin injection and for the Meniere's vertigo to be over. You only get another gentamicin injection when the previous one stops working (the vertigo comes back). Usually, if the vertigo is not gone after 3 gentamicin injections, they will consider a different type of treatment.
The gentamicin treatment can be very helpful for people who have Meniere's disease. Usually doctors will start with other treatments first though like diuretics, a low sodium diet, steroid injections ect.
I am in my forties and was diagnosed about the same time as you with Meniere's. I haven't had too many episodes of dizziness with it thank goodness but i do worry for the future as I already have chronic migraines, chronic fatigue and several other problems. I wouldn't be able to have most painkillers so I hope the pain isn't too bad. You are very brave and seem to be quite the pain warrior! Well done for getting through all that and I wish you hope for something to help in the future!
The only reason the gentamicin was painful was because the first doctor who was doing it didn't dilute the medication. If he had just diluted it, it would've been SO much more tolerable. My most recent doctor diluted the medication and the med itself wasn't painful. The doctor can also buffer the gentamicin, which changes the pH of the med. So if you ever need a gentamicin, they should be able to make it less painful than those first 5 I had.
If you ever need gentamicin injections, and it doesn't work after the 3rd one, it's time to talk about some other treatment. I wish someone had told me that. But, live and learn I guess!
My heart goes out to you that you are living with all these things! I have chronic migraines and chronic fatigue so I truly understand and see you. You sound like a warrior! Thank you so much for your encouragement - it means so much from those who understand like you do! I'm also in my 40's!! :) Sending hugs your way! 💜
@@IncredibleAnyway Ty for your helpful and kind answer! I have noted those things down for my future. We definitely must both be warriors! Wishing you easier days. Hugs xx
My heart goes out to you. Because of my battles with cancer, I know what it’s like to get your hopes up and have them dashed. Sometimes it brings to mind that scene in the movie “Alien”, when the crew members were celebrating. They felt they were in the clear, and suddenly the beast roared out of one fellow’s chest. Nevertheless, hope springs eternal. I’m pulling for you❣️
That is a really great example about Alien. I've never thought of it that way! Hope is so tricky. It is vital for persevering and living. But sometimes it can be hard because hope can be dashed and that is really painful. The good thing is that there is always hope. As you say hope springs eternal.
How are you doing? Are you still receiving treatment for the cancer?
I am so happy that I found your channel! I am 20 years old and I have suffered from Meniere's disease since I was 15 ): I feel that I am missing out on a lot. I could not go to university because of it because I am very afraid that if I leave the house I will get a dizzy spell. I no longer leave the house except in extreme necessity. I have panic attacks because of Meniere's disease and I do not know what the final solution is. I only take medication. I hope to live like any normal person and be able to leave the house without fear.
I'm so happy you are here! I hate that you've been dealing with Meniere's for so long. IT is so hard to miss out. I can understand the fear of leaving the house. Do you mind me asking what you take medication-wise? Have you asked your doctor about trying injections in your ear? Thank you so much for sharing your story. You are not alone. IT is rough and so scary to have these attacks. I believe you will get to that point where you can live like others and get out of the house without fear.
Oh gosh, that looks so painful and uncomfortable. I'm so sorry you need to have that done again but I'm praying and wishing all my best blue star wishes that it's a success! 💙 You are such a warrior!
Thank you so much!! I hope so too. Your words mean the world!
This is why I chose the Vestibular Neurectomy instead of this route. God bless you for showing the trials and tribulations of having a balance disorder.
I *wish* my doctors had given me that option sooner! I asked and asked and kept being told "no" which is so confusing to me. I'm hoping in February when I meet my new neurotologist that he will see how surgery is clearly the next step. I don't know which surgery he will want to do. But, I'm ready for it. Thanks for being an encouragement!
I forget - do you have any permanent repercussions from the vestibular neurectomy?
@@IncredibleAnyway yes. Even though the nerves were cut, I still have a failing inner ear. So I still have little to no hearing on that side, tinnitus, and I can turn my head sharp enough to make me uncomfortable for a minute or two. I will never be 100% again per the doctor. I rely on my eyes more and learned techniques in rehab to function. I do miss being able to sit in my recliner and not feel uneasy.
Hi kelly did you have tinitus?
I have very mild tinnitus but it is as a result of surgery, not Meniere’s although it is a very common Meniere’s symptom.
Good evening. I had my first gent injection 2 weeks ago and I’m having a heavy head and oscillopsia, where my eyes bounce with anything that jostles my head. If I slight shaken my head in a “no” direction the whole sight picture move and I can keep focused on an object. Is that something you experienced? Is this a normal reaction? I went for my 2nd injection today and he would not give it due to this issue. Please let me know if this is a normal reaction. I really appreciate it
My recovery from gentamicin was very challenging and the veritgo and imbalance were so much worse at first. I’ve never been told that I had oscillopsia, but I will say that the world was always in movement. I don’t know if it is a normal reaction or not - that would be a good question for your doctor. But I highly recommend askign about vestibular therapy that can be done by a physical therapist. It is SO helpful in recovring from something like this. I did a short video on some vestibular therapy treatments I did after Vestibular Nerve Section. While the exercises can be hard, they help in the long run. I can see why he would wait to give the 2nd getnamicin. Your body probably just needs time to recover. Here is a video I made on my recovery from gentamicin: ua-cam.com/video/QC2tWdA3akQ/v-deo.htmlsi=3mmtzqJxaOX91v_f Here is a video I made on the vestibular therapy: ua-cam.com/video/QC2tWdA3akQ/v-deo.htmlsi=3mmtzqJxaOX91v_f I’m rooting for you. Recovery is rough adn it takes time, but I beleive it will improve for you. It took me at least 6 weeks to be functional again after the first few gentamicin injections I had. I’d also not hesitate to ask your doctor all these questions especially if things dont improve
@@IncredibleAnyway thank you so very much for your response. If I shake my head in the “yes” or “no” movement, or driving in the car, going over bumps, everything is jumpy and out of whack. Even if I do the therapy where you focus on a spot with your eyes and move your head back and forth, the object I’m focused on shifts around. It’s very strange. Could be perfectly normal, but I don’t know anyone to ask these type questions. Thank you for all you do and for your encouragement. Means so much to me and I’m sure many others who suffer from this terrible disease.
@@IncredibleAnyway I feel like I have been making slow improvements, but today I have felt like my bouncy vision when moving or walking, is back to square one. Did you have setback days or days you just didn’t feel like you were still moving forward? I’m only on week 3 after my gent injection, so maybe I’m rushing things. I’m able to walk, my vision just seems very off when walking or in a bouncy vehicle…shaking my head yes or no, I cannot focus on anything because the whole picture through my eyes moves. Is this normal from your experience? Thanks for everything.
I’m so sorry - UA-cam doesn’t let me know when I have a reply to my comment replies, so I didnt’ see this til I was lookign through my comments in detail just now. I hate I didn’t get your comments sooner. How are you doing now? What you described seemed normal to my experience. It is a very rough recovery and much much slower than I had anticipated - many many weeks. I also experienced feeling like I was improving and then having a set backs. You are doing such a great job - persevering so well through such a rough recovery. WEll done in doing the vestibular therapy exercises. That will help you in the long run adn. Please update me if you have a chance. Continuing to root for you!
@@IncredibleAnyway thank you so much for your response. I’m basically the same. Bouncy Vision and heavy head feeling is still there. I’m now 5 weeks post injection so I figured I’d be showing some signs that I’m going in the right direction, unfortunately it’s doesn’t feel that way. Head movements still make my head feel like it’s heavy and wants to fall. My eyes still have the weird bounce and can’t keep a focus on a spot while doing the vestibular exercises. I’m a bit discouraged, I won’t lie. It’s like I’ve traded one dreadful thing for another. I’m still hopeful and prayerful for a recovery, I would just think I’d have made some sort of progress this far along. Thank you again for you kind words and encouragement not only in word but also in the way you live and remain positive…thanks again
Hi kily I have meniers since 2011 .now I used to live whit tinnitus and my hearin it’s very down…I don’t have to much attacks vertigo like before but I have lost hearing.what I should do pls to get my hearing better ??
Hearing loss from Meniere's disease is permanent. However, you can go to your doctor who will refer you to an audiologist and they can get you hearing aids and support.
Just the shift of technology change in this video!! The iPhones moving up!! ❤❤😅
Right? So wild!
Hi Kelly - I could just SEE ur pain omg but we Gals💪💪are made of strong stuff right? Btw I'm not a "dog person" but ur Service Dog is adorabile... waiting patiently with his Do Not Distract ribbon - c🙋🏻♀️u later
We are made of the toughest stuff! Thank you for what you said about Service Dog Bene. He is so sweet. Hope you are doing well!
Do you ever switch ears ?? Or is it always the same side / ear 👂 each time ??
Good question. I have unilateral Meniere's, so it only affects one ear and it is the same ear every time because only one ear is diseased. My right ear is my affected/diseased ear. There are people who have bilateral Meniere's meaning that they have two affected/diseased ears.
Did you lose any of the hearing from this procedure?
No. I had gentamicin injected 9 times and never lost hearing. I have a video on gentamicin and hearing loss here: ua-cam.com/video/WRpFzUIeHrE/v-deo.htmlsi=FpZ6Fn81wAJZEnOI
Hi Kelly i have bad vertigo for almost 4months now ..what can i do too easy it
I'm sorry you have bad vertigo. It really depends on what the cause of the vertigo is. The cause determines the treatment. Have you seen a doctor about the vertigo? What do they say?
How many gentamicin injections you took and how often you been taking them were they once a week or one every two weeks
It is possible to have only one Gentamicin injection and for the Meniere's vertigo to be over. You only get another gentamicin injection when the previous one stops working (the vertigo comes back). Usually, if the vertigo is not gone after 3 gentamicin injections, they will consider a different type of treatment.
And does that treatment help or not
The gentamicin treatment can be very helpful for people who have Meniere's disease. Usually doctors will start with other treatments first though like diuretics, a low sodium diet, steroid injections ect.
❤❤❤
Hi, i am suffering from miniere. Now taking betahistine. But now suggested me gentamicin injection. I m worried what will happen
What are your worries about the gentamicin? How can I help?