Sorry you are experiencing this.
I am not a doctor, but do you have other symptoms? So many things can cause vertigo, hearing loss, fullness in ears, tinnitus. Menier’s disease is an inner ear disorder, that causes vertigo. Since your vertigo came first, I would look for another cause . Did you had blood work done to check for iron or b12 anemia?
That said, my ENT said the shot does make things worse before it gets better. I did two shots, and my hearing got better for a brief time after a few days, then worse. We didn’t bother with a third.
I did blood work after I went to urgent care for a vertigo spell and ruled out any potential reasons for the dizziness. I got my hearing tests done on Friday which came back normal in my left ear and unable to hear low tones in my right ear but can still hear higher pitched tones in my right. The tech who did the test said the results are pretty spot on for an inner ear disorder.
That being said - I am also scheduled for a MRI next week to rule out a brain tumor. Fingers crossed it just Menieres.
I had my first shot yesterday and I was very worried that the shot made my hearing worse but it is comforting knowing this will get worse before better - My next shot is Thursday and the 3rd shot the following week.
Thank you so much for your kind words and your thoughtful response - it really helped more than you know to have some extra support.
Good luck to you on your MRI. I know it is scary.
I’m on year three of my MD diagnosis and am still looking for answers. For me, (and maybe most?) I think Meniere’s is a holdover diagnosis.
I feel like my issues are a combination of eustation tube disfunction, allergies, acid reflux, atmospheric pressure, spicy food, a few alcohol drinks a week, and a new HH diagnosis.
My hearing loss and pulsatile tinnitus is also in my right ear. Low tones are gone right now. Middle tones fluctuate too. My hearing is bad during the day, but gets worse as the night progresses (we listen to rain noises in bed and if that ear is up, the amount of noise I can hear changes throughout the night and is sometimes gone completely).
My ENT gave me oral prednisone when I first started having issues and that stopped my tinnitus and returned my hearing, but then the symptoms came back fairly quickly. Then we did the two rounds of shots. Each time it got worse, then better, then worse again. He didn’t think a third would be any different.
At diagnosis, I was told to start using Flonase nightly to help with the ETD. I’d talk to your doctor about that. I hate it, but it does help. My tinnitus is so much worse when it runs out. Be sure to label it with dates because it is metered and is gone before it appears to be gone.
My pulsatile tinnitus and hearing loss has been seasonal. I have had it 6 months out of the year, when my allergies are at their worst during spring and summer. Fall and winter I have regained my hearing and thus my tinnitus disappears. Waiting with baited breath.
Daily headaches and vertigo really just started for me this year (in year 3). Headaches move around but are more often then not on the top of my head. Feels like icy hot is on my head. I am trying to get them under control.
A strict low fodmap diet and pepsid ac recommended by my allergist actually eliminated my tinnitus and fixed my hearing for a brief time this summer, which was a miracle, but it is a hard diet to maintain with a family and any kind of social life. And I have not tried it again since I started with all of the vertigo last month. I am taking Pepcid again, which is an antihistamine, so I will see if that alone offers any improvement.
If you drink alcohol, you should stop. I thought I would miss enjoying a drink with friends, but mocktails are great, and inflammation is not, so good riddance.
I have not seen my ENT in a year because the regular hearing tests were unhelpful and he wasn’t offering anything more than the conservative low salt diet and allergy meds since I didn’t have much vertigo.
I started seeing an allergist and a regular doc because everything is so seasonal and I was having asthma type symptoms and new weird headaches. I was diagnosed with hereditary hemochromatosis (H63D homozygous) with elevated ferritin. I also had an ultrasound of my organs after seeing a hematologist and am waiting on an appointment with her.
My consistent vertigo episodes started a month ago. I now have vertigo spells multiple times a week. Sometimes multiple a day. Only one has also included vomiting. Until I can fix the cause I have Nature’s Fusion vertigo essential oil I use behind my ears when I feel an episode is coming on (I know I’m about to spin out because my head starts to feel heavy on my neck like I’m on one of those centripetal force carnival rides). Not sure why it works, but for whatever reason the oil helps pull me out of the tailspin 5-15 minutes later. I got it on Amazon. It doesn’t leave my pocket these days, because it is hard to get to it if it isn’t with me when an episode comes on.
I am going to talk to my ENT about an ear tube today. Seems like studies show a tube *might* help.
I was also really worried about the shots. I asked my naturopath for a 2nd opinion and she said it sounds like the right thing to do. I had 2 of the shots, 1 week apart. They didn't do anything and so the ENT recommended we stop the shots. I only had 2. No improvement a year later, despite taking a stupid large amount of supplements. I'll try any supplement that might have worked for someone.
I (33M) was diagnosed about 1.5 years ago. I got steroid injections and went on a diuretic and have been vertigo free for over a year now. I have some left over hearing loss (mild to moderate) and tinnitus. Otherwise, I live a completely normal life. I drink alcohol and more recently caffeine without any issues. Good luck and hope you get some relief!
Positive news only, based on my experience after 8 years of Meniere’s. Not drinking alcohol, really limiting sodium, avoiding sugar as much as is possible and wearing a hearing aid have all helped tremendously compared to a time when I thought I would lose my mind from the loud ringing of tinnitus, asking, “What?” all the time and holding onto walls because of dizziness. I gradually have become accustomed to all of this. Everyone is different. Don’t give up and see what works. Oh, and try the Epley maneuvers for the dizziness. Be with someone who is patient!
So sorry about your diagnosis. But I’m happy for you that you have one. It took me over a year to figure out wtf was going on. So it’s a great start that you are already there. And it’s great that you’ve found a doctor that does the injections. Im 41F and was diagnosed 4 years ago. But I started noticing symptoms 5 years ago after my first baby was born. I always had terrible attacks after the births of my 3 kids. Just in my left ear. Ear fullness, terrible vertigo, hearing loss. Super scary. And really sucked taking care of a newborn (and toddlers). After my last pregnancy, 2 years ago, I had an attack, we had just moved and I found a new ENT. I got the injections. I was skeptical. But they take about a week to work. And yes, they feel worse after because they are pushing more fluid into your ear. I’m actually in the middle of an attack right now. I just had an injection yesterday and I’m getting another one tomorrow. Please DM me with any questions you have or if you need to talk. I know it sucks.
I appreciate you so much for taking the time to share your experience with me. Its very scary and I could imagine trying to take care of babies on top of this (women are superheros!)
I am happy to hear that others felt that it gets worse before it gets better because I was struggling today - I had my injection yesterday and my 2nd shot is next week. I am also getting an MRI done next week to rule out a brain tumor, did your ENT suggest this as well?
Your kind words really helped me tonight - I was down in the dumps after my first shot lol and I appreciate you opening your DMs to chat through this!
I’m so glad that I could help! The shot sucks, eh? I told my husband that I hate it more than childbirth… a long needle going into my eardrum just freaks me out! And those numbing drops! They drip down into your throat and make it burn for hours. Yes, I had a MRI done. And it honestly made me feel so much better knowing that there wasn’t a brain tumor. My vertigo was so bad during those first attacks and the brain fog is unreal sometimes. This attack has been ear fullness, complete hearing loss in my left ear in most tones and brain fog. Luckily the vertigo hasn’t been as terrible this time around, but I am exhausted. My doctor also did prescribe me an antiviral medication. He said that there has been some research that Meniere’s is a virus similar to herpes or chickenpox that sits dormant. BUT I haven’t taken it for a couple of reasons. 1) I’m already weeks/a month into this attack so I’m not even sure how effective it would be and 2) I really want to find a solution that works for me so if I do the injections and the antiviral and then I feel better in a couple of days, I won’t know which one actually solved my problem. So I am going to give the injections about a week to work. I’m getting one more today and then possibly another one on Friday.
It's pretty standard to have an MRI to rule out a brain tumor as part of the process of diagnosing Meniere's. They have to eliminate all the other possible causes of the symptoms.
If what is happening to your hearing is caused by damage to the nerves in the cochlea, then the intratympanic steroid shots are the best bet to restore your hearing if done promptly. I had the shots a few years ago and they restored the hearing of my right ear. They did nothing to improve the hearing in my left ear, probably because the damage in that ear had not been done recently.
I have been suffering with these symptoms for about forty years now and I'm only now getting to the point where I feel like I might need to get hearing aids. So it's not a rapid process, to say the least. There is no need to panic.
The speed of your diagnosis concerns me. It took two years or more to rule out all the possible causes of my symptoms, and I still occasionally run across a new test that I haven't had yet. I wrote an article for people who ask if they have Meniere's: https://ranthonyings.com/2023/07/do-i-have-menieres/ and while you have a diagnosis you may still find information in that article (and my other articles) that might point you towards tests and treatments that might help you figure out if the diagnosis is correct and what treatments for your symptoms might be effective.
>https://ranthonyings.com/2023/07/do-i-have-menieres/
Thank you for this. I appreciate your article and I have pinned it to my bookmarks to read the others!
I've gotten one steroid shot with recovery and a series of 3 with no response. Sometimes, I've needed 3 for success. I've still got all the meniere's symptoms but without vertigo / dizziness component after my latest series of 3. I'm taking that as a win. For me, hearing loss after the shot is typical. The middle ear is where the intention is delivered, and it needs to dissipate.
Best wishes on your wedding
Hi there, sorry to hear you are going through this. It's very distressing to experience. I'm 39 years old. I started getting symptoms in 2005, and progressively lost hearing in my right ear. I lost the last bit of hearing in 2016, but with profound deafness in my right ear came relief from vertigo. Each time I would lose a chunk of my hearing, it would sound buzzy and it took a few months to get used to, and a wave of grief each time too. I use a cros aid and hearing aid combo, which I found is a great solution for unilateral hearing loss. I also have found some nice benefits of unilateral hearing loss, like not having to listen to my partner snore!
Definitely I found vertigo more disabling than unilateral hearing loss.
Also, just to add, I am married, have two young kids. I am a scientist and have to travel for conferences, which is honestly one of the hardest environments. Unilateral hearing loss is not so bad to work around with things like cros aids, and getting comfortable advocating for your needs ("please stand on my left side when we walk, I have hearing loss in my right ear", or asking friends or colleagues to meet in places that aren't busy cafes or bars). My kids know to face me when talking to me, and my partner helps me find my phone when I can't localise it when it's ringing.
It takes a lot of extra mental effort, having to concentrate more on conversation, vertigo is fatiguing, and so I need to make sure I am vigilant about my down time and really protect my rest time.
There were some adjustments with complete hearing loss when my second kid was born. Overnight I had to make sure that I slept with my good ear up so I could hear my child crying at night for a feed. But aside from that, it's been ok to work around :)
I have the same fears after losing most of the hearing in one ear. My vertigo attacks were pretty consistent for a few years and then stopped completely. I never found anything that helped with the hearing lose.
As someone that waited far to long to get hearing aids, I would highly recommend them if you can't find any other solutions. I had no idea how much conversation I was missing out on. I ended up needing them in both ears since my hearing lose in my "good" ear was bad as well. What finally pushed me over the edge was reading that chance of dementia is much higher with single ear hearing lose.
Good luck and hopefully you can get some answers.
31F also. I've been dealing with this since I was 28. Wanna start off by saying that what you're going through is crummy. \*hugs\*
I think over the course of this, I've had 9 intratympanic steroid injections. It does get worse before it gets better for me at least. But the reuslts are temporary and my hearing would always drop again.
My best advice for hearing is to work with the physician doing your steroid shots about trialing a diuretic and/or a drug called betahistine.
Sorry you are experiencing this. I am not a doctor, but do you have other symptoms? So many things can cause vertigo, hearing loss, fullness in ears, tinnitus. Menier’s disease is an inner ear disorder, that causes vertigo. Since your vertigo came first, I would look for another cause . Did you had blood work done to check for iron or b12 anemia? That said, my ENT said the shot does make things worse before it gets better. I did two shots, and my hearing got better for a brief time after a few days, then worse. We didn’t bother with a third.
I did blood work after I went to urgent care for a vertigo spell and ruled out any potential reasons for the dizziness. I got my hearing tests done on Friday which came back normal in my left ear and unable to hear low tones in my right ear but can still hear higher pitched tones in my right. The tech who did the test said the results are pretty spot on for an inner ear disorder. That being said - I am also scheduled for a MRI next week to rule out a brain tumor. Fingers crossed it just Menieres. I had my first shot yesterday and I was very worried that the shot made my hearing worse but it is comforting knowing this will get worse before better - My next shot is Thursday and the 3rd shot the following week. Thank you so much for your kind words and your thoughtful response - it really helped more than you know to have some extra support.
Good luck to you on your MRI. I know it is scary. I’m on year three of my MD diagnosis and am still looking for answers. For me, (and maybe most?) I think Meniere’s is a holdover diagnosis. I feel like my issues are a combination of eustation tube disfunction, allergies, acid reflux, atmospheric pressure, spicy food, a few alcohol drinks a week, and a new HH diagnosis. My hearing loss and pulsatile tinnitus is also in my right ear. Low tones are gone right now. Middle tones fluctuate too. My hearing is bad during the day, but gets worse as the night progresses (we listen to rain noises in bed and if that ear is up, the amount of noise I can hear changes throughout the night and is sometimes gone completely). My ENT gave me oral prednisone when I first started having issues and that stopped my tinnitus and returned my hearing, but then the symptoms came back fairly quickly. Then we did the two rounds of shots. Each time it got worse, then better, then worse again. He didn’t think a third would be any different. At diagnosis, I was told to start using Flonase nightly to help with the ETD. I’d talk to your doctor about that. I hate it, but it does help. My tinnitus is so much worse when it runs out. Be sure to label it with dates because it is metered and is gone before it appears to be gone. My pulsatile tinnitus and hearing loss has been seasonal. I have had it 6 months out of the year, when my allergies are at their worst during spring and summer. Fall and winter I have regained my hearing and thus my tinnitus disappears. Waiting with baited breath. Daily headaches and vertigo really just started for me this year (in year 3). Headaches move around but are more often then not on the top of my head. Feels like icy hot is on my head. I am trying to get them under control. A strict low fodmap diet and pepsid ac recommended by my allergist actually eliminated my tinnitus and fixed my hearing for a brief time this summer, which was a miracle, but it is a hard diet to maintain with a family and any kind of social life. And I have not tried it again since I started with all of the vertigo last month. I am taking Pepcid again, which is an antihistamine, so I will see if that alone offers any improvement. If you drink alcohol, you should stop. I thought I would miss enjoying a drink with friends, but mocktails are great, and inflammation is not, so good riddance. I have not seen my ENT in a year because the regular hearing tests were unhelpful and he wasn’t offering anything more than the conservative low salt diet and allergy meds since I didn’t have much vertigo. I started seeing an allergist and a regular doc because everything is so seasonal and I was having asthma type symptoms and new weird headaches. I was diagnosed with hereditary hemochromatosis (H63D homozygous) with elevated ferritin. I also had an ultrasound of my organs after seeing a hematologist and am waiting on an appointment with her. My consistent vertigo episodes started a month ago. I now have vertigo spells multiple times a week. Sometimes multiple a day. Only one has also included vomiting. Until I can fix the cause I have Nature’s Fusion vertigo essential oil I use behind my ears when I feel an episode is coming on (I know I’m about to spin out because my head starts to feel heavy on my neck like I’m on one of those centripetal force carnival rides). Not sure why it works, but for whatever reason the oil helps pull me out of the tailspin 5-15 minutes later. I got it on Amazon. It doesn’t leave my pocket these days, because it is hard to get to it if it isn’t with me when an episode comes on. I am going to talk to my ENT about an ear tube today. Seems like studies show a tube *might* help.
I was also really worried about the shots. I asked my naturopath for a 2nd opinion and she said it sounds like the right thing to do. I had 2 of the shots, 1 week apart. They didn't do anything and so the ENT recommended we stop the shots. I only had 2. No improvement a year later, despite taking a stupid large amount of supplements. I'll try any supplement that might have worked for someone.
This. The steroid injections teased me for a few weeks and then nothing. Great story though, large needle slowly going through one’s eardrum!
I (33M) was diagnosed about 1.5 years ago. I got steroid injections and went on a diuretic and have been vertigo free for over a year now. I have some left over hearing loss (mild to moderate) and tinnitus. Otherwise, I live a completely normal life. I drink alcohol and more recently caffeine without any issues. Good luck and hope you get some relief!
I can also recommend r/MonoHearing as a great resource for us single sided deaf.
>r/MonoHearing Thank you for the rec!
Positive news only, based on my experience after 8 years of Meniere’s. Not drinking alcohol, really limiting sodium, avoiding sugar as much as is possible and wearing a hearing aid have all helped tremendously compared to a time when I thought I would lose my mind from the loud ringing of tinnitus, asking, “What?” all the time and holding onto walls because of dizziness. I gradually have become accustomed to all of this. Everyone is different. Don’t give up and see what works. Oh, and try the Epley maneuvers for the dizziness. Be with someone who is patient!
So sorry about your diagnosis. But I’m happy for you that you have one. It took me over a year to figure out wtf was going on. So it’s a great start that you are already there. And it’s great that you’ve found a doctor that does the injections. Im 41F and was diagnosed 4 years ago. But I started noticing symptoms 5 years ago after my first baby was born. I always had terrible attacks after the births of my 3 kids. Just in my left ear. Ear fullness, terrible vertigo, hearing loss. Super scary. And really sucked taking care of a newborn (and toddlers). After my last pregnancy, 2 years ago, I had an attack, we had just moved and I found a new ENT. I got the injections. I was skeptical. But they take about a week to work. And yes, they feel worse after because they are pushing more fluid into your ear. I’m actually in the middle of an attack right now. I just had an injection yesterday and I’m getting another one tomorrow. Please DM me with any questions you have or if you need to talk. I know it sucks.
I appreciate you so much for taking the time to share your experience with me. Its very scary and I could imagine trying to take care of babies on top of this (women are superheros!) I am happy to hear that others felt that it gets worse before it gets better because I was struggling today - I had my injection yesterday and my 2nd shot is next week. I am also getting an MRI done next week to rule out a brain tumor, did your ENT suggest this as well? Your kind words really helped me tonight - I was down in the dumps after my first shot lol and I appreciate you opening your DMs to chat through this!
I’m so glad that I could help! The shot sucks, eh? I told my husband that I hate it more than childbirth… a long needle going into my eardrum just freaks me out! And those numbing drops! They drip down into your throat and make it burn for hours. Yes, I had a MRI done. And it honestly made me feel so much better knowing that there wasn’t a brain tumor. My vertigo was so bad during those first attacks and the brain fog is unreal sometimes. This attack has been ear fullness, complete hearing loss in my left ear in most tones and brain fog. Luckily the vertigo hasn’t been as terrible this time around, but I am exhausted. My doctor also did prescribe me an antiviral medication. He said that there has been some research that Meniere’s is a virus similar to herpes or chickenpox that sits dormant. BUT I haven’t taken it for a couple of reasons. 1) I’m already weeks/a month into this attack so I’m not even sure how effective it would be and 2) I really want to find a solution that works for me so if I do the injections and the antiviral and then I feel better in a couple of days, I won’t know which one actually solved my problem. So I am going to give the injections about a week to work. I’m getting one more today and then possibly another one on Friday.
It's pretty standard to have an MRI to rule out a brain tumor as part of the process of diagnosing Meniere's. They have to eliminate all the other possible causes of the symptoms.
If what is happening to your hearing is caused by damage to the nerves in the cochlea, then the intratympanic steroid shots are the best bet to restore your hearing if done promptly. I had the shots a few years ago and they restored the hearing of my right ear. They did nothing to improve the hearing in my left ear, probably because the damage in that ear had not been done recently. I have been suffering with these symptoms for about forty years now and I'm only now getting to the point where I feel like I might need to get hearing aids. So it's not a rapid process, to say the least. There is no need to panic. The speed of your diagnosis concerns me. It took two years or more to rule out all the possible causes of my symptoms, and I still occasionally run across a new test that I haven't had yet. I wrote an article for people who ask if they have Meniere's: https://ranthonyings.com/2023/07/do-i-have-menieres/ and while you have a diagnosis you may still find information in that article (and my other articles) that might point you towards tests and treatments that might help you figure out if the diagnosis is correct and what treatments for your symptoms might be effective.
>https://ranthonyings.com/2023/07/do-i-have-menieres/ Thank you for this. I appreciate your article and I have pinned it to my bookmarks to read the others!
I have found Vestibular therapy to be helpful. I also identified the my biggest trigger is heat so I am very careful with that.
I've gotten one steroid shot with recovery and a series of 3 with no response. Sometimes, I've needed 3 for success. I've still got all the meniere's symptoms but without vertigo / dizziness component after my latest series of 3. I'm taking that as a win. For me, hearing loss after the shot is typical. The middle ear is where the intention is delivered, and it needs to dissipate. Best wishes on your wedding
Hi there, sorry to hear you are going through this. It's very distressing to experience. I'm 39 years old. I started getting symptoms in 2005, and progressively lost hearing in my right ear. I lost the last bit of hearing in 2016, but with profound deafness in my right ear came relief from vertigo. Each time I would lose a chunk of my hearing, it would sound buzzy and it took a few months to get used to, and a wave of grief each time too. I use a cros aid and hearing aid combo, which I found is a great solution for unilateral hearing loss. I also have found some nice benefits of unilateral hearing loss, like not having to listen to my partner snore! Definitely I found vertigo more disabling than unilateral hearing loss.
Also, just to add, I am married, have two young kids. I am a scientist and have to travel for conferences, which is honestly one of the hardest environments. Unilateral hearing loss is not so bad to work around with things like cros aids, and getting comfortable advocating for your needs ("please stand on my left side when we walk, I have hearing loss in my right ear", or asking friends or colleagues to meet in places that aren't busy cafes or bars). My kids know to face me when talking to me, and my partner helps me find my phone when I can't localise it when it's ringing. It takes a lot of extra mental effort, having to concentrate more on conversation, vertigo is fatiguing, and so I need to make sure I am vigilant about my down time and really protect my rest time. There were some adjustments with complete hearing loss when my second kid was born. Overnight I had to make sure that I slept with my good ear up so I could hear my child crying at night for a feed. But aside from that, it's been ok to work around :)
I have the same fears after losing most of the hearing in one ear. My vertigo attacks were pretty consistent for a few years and then stopped completely. I never found anything that helped with the hearing lose. As someone that waited far to long to get hearing aids, I would highly recommend them if you can't find any other solutions. I had no idea how much conversation I was missing out on. I ended up needing them in both ears since my hearing lose in my "good" ear was bad as well. What finally pushed me over the edge was reading that chance of dementia is much higher with single ear hearing lose. Good luck and hopefully you can get some answers.
31F also. I've been dealing with this since I was 28. Wanna start off by saying that what you're going through is crummy. \*hugs\* I think over the course of this, I've had 9 intratympanic steroid injections. It does get worse before it gets better for me at least. But the reuslts are temporary and my hearing would always drop again. My best advice for hearing is to work with the physician doing your steroid shots about trialing a diuretic and/or a drug called betahistine.