Thank you SOOOOO much for this information. My vertigo from Meniere's is excruciating, and the psychological effect of never knowing when it will hit is difficult. I too have Right ear MD, and my hearing loss it nearly 90%. Saw my ENT today and ordering MRI, but steroid shots are the next course. I wasn't aware that there were service dogs for this! Thanks for helping me to know I am not alone in this battle.
hiya kelly good to hear about the steroid injections are giving you some kind of relief even if it isn't long term i always try and make the most of my good days which aren't very many right now a week if i'm lucky then i get ear fullness that uneasy feeling you get that you know that anytime you could have an attack again and a build up for a week or 2 till the next attack , i try not to think about it happening but as its so awful it's hard not too its so in your face there's no escape and you have totally no control of how it behaves no matter how hard you try !! glad i came across your channel :) thanks for sharing x
I'm glad you found the other videos where I talk about the steroid injections. hopoe they were helpful .The very first steroid injections I tried didn't help me, so it is always good to remember that even if something doesn't' help you initially, it doesn't mean it won't in the future. It was 9 years between when the first steroid injection didn't help me and the others did. I'm so sorry you don't have many good days. I know exactly what you mean about there is nothing you can do and having no control - all you can do is go for the ride and just endure it and persevere until it is over. You are a warrior and a survivor. You should be so proud of yourself for persevering through what is truly a hellish disease. One of the doctors I talked to believes that Meniere's "burns out" after many years and just ends for some people. So there is a lot of hope in that possibly happening. It hasn't happened to me yet (I was diagnosed i n October 2010), but because of the Gentamicin injections I had, the vertigo the same as it was early on. It has changed- it's hard to describe, but I'm so glad it has. And I just saw a new doctor who put gentamicin in my ear surgically and I've been free of a meniere's attack for 7 weeks since he did that! Truly a miracle. So know that there is hope and keep enjoying the days/hours that are better. Keep up the good fight, Chrissy. You can do this! You aren't alone. Please keep me updated on how you are and let me know if you decide to try any of the treatments (steroid/gentamicin). I'm so glad you reached out and said hello. Cheering you on! Big big hugs to you. Kelly
@@IncredibleAnyway thanks so much for replying to me :) and thanks for giving me hope means a lot xx and yes i will let you know how my telephone calls goes on the 2nd of december i really hope to have a better year next year . wow that's amazing for you that your injections are finally having some relief for you it must be amazing for you i hope to one day have this amazing feeling also but till then the show must go on !!! take care stay strong and hugs back at ya thanks again kelly for your support xx
I'm so sorry that it hurt so badly. I hope it helps considering how painful it was! I had the same experience with my first injection because my first doctor wasn't doing things to lessen the pain. It wasn't until I went to a different doctor that I discovered it didn't have to be so painful! Did you tell your doctor how painful it was? Make sure you do that so they know. I never told my doctor and I wish I had. It's really important that the doctor properly numbs the ear drum with phenobarbital OR EMLA cream. My doctor uses phenobarbital and I like that the best. The most important thing is that they dilute the steroid down before injecting it. If they don't dilute it before injecting it, it will be painful. My first doctor did NOT dilute it (FIRE in my head) and my second doctor DID. Diluting made all the difference. I also said I would never get another steroid injection, but with the right doctor and the right procedure, it was a lot easier. In my experience hearing the heartbeat is normal right after an injection. That should go away. If it doesn't, I'd tell my doctor about it.
Uff your video made me feel hopeless...i hv severe tinitis..also migrains and vertigo returned aftr an year and a half of remission .this time even worse..m a doctor by profession and m so worried wat will i do to earn a living
I'm so sad the video made you feel hopeless. I can understand being concerned about what you will do for a living. Remember every patient is different. Make sure you have a good neuro-otologist. There are treatments. Life may look different from what it looks like for you now, but you can do this. There is so much good in life even with the challenges. I'm rooting for you. You're not alone.
My doctor recommended the steroid injection. I’m wondering how painful it is and how long the pain lasted. I’m terrified of a needle penetrating my ear
Steroid injections are a temporary help for Meniere's. It is not a fix as the effects will wear off at some point. The relief lasted 3 months for me, but that varies person to person. The doctor will numb up the ear drum, so you should not feel the needle go through the ear drum at all. You might feel pressure, but not pain. The needle going in should have no pain associated with it whatsoever. I've had a doctor make an incision with a scalpel into my eardrum while i was awake that I did not feel - that is how good the numbing should be. I only had pain with the steroid injection 1 of the 3 times and it was not related to the needle.The doctor thought perhaps it was b/c of the pressure change in my ear. Although it felt like a burning pain just below my outer ear near my jaw & I think it was the medication that did that. That one time, the pain was severe and it lasted for several hours. The other two times I had very little if any pain. I suggest you talk to your doctor about the fears of the pain and the needle as he has seen lots of patients. I would ask him what he uses to numb up the ear and if you will feel the needle go through the ear drum (he should say you shouldn't feel it at all .) He will also be able to your concern about how many ppl experience pain from the injection and how long the relief should last. I'm just one person and it doesn't mean you will respond like I did. For me, this procedure was worth it because I wanted relief from the Meniere's and having severe pain for a few hours in 1 out of 3 injections was worth it for me to have 3 months of no vertigo. Now, the first time I got steroid injections several years ago with a different doctor, the doctor did not dilute the steroid medication and that really burned/was painful - it felt like my ear was on fire and I vowed to never get it again. My current doctor was shocked about what my other doctor had done and said that was inhumane, and persuaded me to try it again and I'm glad I did. You might ask your doctor if he dilutes the steroid so it doesn't burn. What I do during the injection to help myself get through it, is I look at a place on the wall or ceiling during the procedure and focus on that. I repeat to myself a calming phrase and I focus on relaxing my body and especially focus on my breathing. Getting your mind so you aren't focussed on what is happening in your ear can really help you cope and get through it. My doctor talks to me throughout the procedure about hs dogs trying to distract me I hope I answered your questions!. Let me know if you have further questions. I hope the procedure goes well! You can do it!
I do!! 😃 When I first moved back to Kentucky, someone at church saw me in my wheelchair and the gossip going around town was that my mom was in a wheelchair!😎 We look so alike that people assumed I was her because they didn't know I was back in town. 😂
Do you always ride in the back and does the motion of the car bother you in any way. You mentioned you can’t take an oral steroid because of your migraines,why? Love your videos and Ben is such a sweetie. The perfect service dog.
If I need someone to drive me somewhere, I usually ride in the back because the visual stimulation is too much for me in the front. For balance, we rely on our eyes, our ears and our brain. My right ear is diseased balance-wise, so I rely a LOT more on my eyes than the average person. If I'm having a hard day, I feel more secure in the back seat because there is less visual stimulation. Motion affects me in the car: so when the car is moving, I actually feel better. It is when the car stops or when it stop&go repeatedly that is hard for me and the vertigo hits me like a truck. I can't take an oral steroid long term (like weeks and months on end) because it can cause what is called Rebound Headache or Medication Overuse Headache for those who are sensitive to getting Migraines. Two names, but same thing. What that means is that the brain sees the medication so much that it stops responding to the medication and it actually makes the Migraines worse in the long run. This is only true for people with Migraine. My Migraine neurologist is fine with me taking an oral steroid 4 days/month, but no longer. Its the same reason why I have to be careful with other medications like triptans and can only take them 2-3/days a week, because they could put me into rebound/MOH. Does that answer your question? Bene says thank you! He loves to help his Kelly and make his Kelly happy. thank you for your kind words! I hope you are doing well! I tried MANY times to respond to your message about PTSD and YT is being stubborn about not posting my responses, so I'm sneaking it in here. Thank you for sharing! I hate you are triggered so easily. My heart goes out to you. I hate PTSD period! It's awful and it is unfair first of all that we should be exposed to trauma and then second of all that our brains would then respond to that trauma in a way that makes life really challenging. I've been learning some more techniques on how to cope when I'm triggered and Bene is helpful. Nightmares are the worst right now. I'm glad that the information I share is helpful. Sending you a huge hug. Kelly💜
Incredible Anyway Yes. You have been so kind and open about your limitations. It helps those of us that struggle this way, know that we are not alone. Are you frightened to live alone?
Thank you SOOOOO much for this information. My vertigo from Meniere's is excruciating, and the psychological effect of never knowing when it will hit is difficult. I too have Right ear MD, and my hearing loss it nearly 90%. Saw my ENT today and ordering MRI, but steroid shots are the next course. I wasn't aware that there were service dogs for this! Thanks for helping me to know I am not alone in this battle.
I suffer so much 🙏🏻😭 it comforts me to know there are others who understand
hiya kelly good to hear about the steroid injections are giving you some kind of relief even if it isn't long term i always try and make the most of my good days which aren't very many right now a week if i'm lucky then i get ear fullness that uneasy feeling you get that you know that anytime you could have an attack again and a build up for a week or 2 till the next attack , i try not to think about it happening but as its so awful it's hard not too its so in your face there's no escape and you have totally no control of how it behaves no matter how hard you try !! glad i came across your channel :) thanks for sharing x
I'm glad you found the other videos where I talk about the steroid injections. hopoe they were helpful .The very first steroid injections I tried didn't help me, so it is always good to remember that even if something doesn't' help you initially, it doesn't mean it won't in the future. It was 9 years between when the first steroid injection didn't help me and the others did. I'm so sorry you don't have many good days. I know exactly what you mean about there is nothing you can do and having no control - all you can do is go for the ride and just endure it and persevere until it is over.
You are a warrior and a survivor. You should be so proud of yourself for persevering through what is truly a hellish disease. One of the doctors I talked to believes that Meniere's "burns out" after many years and just ends for some people. So there is a lot of hope in that possibly happening. It hasn't happened to me yet (I was diagnosed i n October 2010), but because of the Gentamicin injections I had, the vertigo the same as it was early on. It has changed- it's hard to describe, but I'm so glad it has. And I just saw a new doctor who put gentamicin in my ear surgically and I've been free of a meniere's attack for 7 weeks since he did that! Truly a miracle. So know that there is hope and keep enjoying the days/hours that are better. Keep up the good fight, Chrissy. You can do this! You aren't alone.
Please keep me updated on how you are and let me know if you decide to try any of the treatments (steroid/gentamicin). I'm so glad you reached out and said hello. Cheering you on! Big big hugs to you. Kelly
@@IncredibleAnyway thanks so much for replying to me :) and thanks for giving me hope means a lot xx and yes i will let you know how my telephone calls goes on the 2nd of december i really hope to have a better year next year . wow that's amazing for you that your injections are finally having some relief for you it must be amazing for you i hope to one day have this amazing feeling also but till then the show must go on !!! take care stay strong and hugs back at ya thanks again kelly for your support xx
Do you have tinnitus as well?
I have very mild tinnitus.
I had one steroids injection today & it hurt so bad, I never want to do it again. Also for some reason I can hear a heart beat.
I'm so sorry that it hurt so badly. I hope it helps considering how painful it was! I had the same experience with my first injection because my first doctor wasn't doing things to lessen the pain. It wasn't until I went to a different doctor that I discovered it didn't have to be so painful!
Did you tell your doctor how painful it was? Make sure you do that so they know. I never told my doctor and I wish I had.
It's really important that the doctor properly numbs the ear drum with phenobarbital OR EMLA cream. My doctor uses phenobarbital and I like that the best. The most important thing is that they dilute the steroid down before injecting it. If they don't dilute it before injecting it, it will be painful. My first doctor did NOT dilute it (FIRE in my head) and my second doctor DID. Diluting made all the difference. I also said I would never get another steroid injection, but with the right doctor and the right procedure, it was a lot easier.
In my experience hearing the heartbeat is normal right after an injection. That should go away. If it doesn't, I'd tell my doctor about it.
Hey. I wanted to know i you still suffer from constant ear pressure ?? Thanks ?
I do have ear pressure when I have Meniere's attacks. The sensation of ear pressure is considered a symptom of Meniere's disease.
Uff your video made me feel hopeless...i hv severe tinitis..also migrains and vertigo returned aftr an year and a half of remission
.this time even worse..m a doctor by profession and m so worried wat will i do to earn a living
I'm so sad the video made you feel hopeless. I can understand being concerned about what you will do for a living. Remember every patient is different. Make sure you have a good neuro-otologist. There are treatments. Life may look different from what it looks like for you now, but you can do this. There is so much good in life even with the challenges. I'm rooting for you. You're not alone.
My doctor recommended the steroid injection. I’m wondering how painful it is and how long the pain lasted. I’m terrified of a needle penetrating my ear
Steroid injections are a temporary help for Meniere's. It is not a fix as the effects will wear off at some point. The relief lasted 3 months for me, but that varies person to person. The doctor will numb up the ear drum, so you should not feel the needle go through the ear drum at all. You might feel pressure, but not pain. The needle going in should have no pain associated with it whatsoever. I've had a doctor make an incision with a scalpel into my eardrum while i was awake that I did not feel - that is how good the numbing should be. I only had pain with the steroid injection 1 of the 3 times and it was not related to the needle.The doctor thought perhaps it was b/c of the pressure change in my ear. Although it felt like a burning pain just below my outer ear near my jaw & I think it was the medication that did that. That one time, the pain was severe and it lasted for several hours. The other two times I had very little if any pain.
I suggest you talk to your doctor about the fears of the pain and the needle as he has seen lots of patients. I would ask him what he uses to numb up the ear and if you will feel the needle go through the ear drum (he should say you shouldn't feel it at all .) He will also be able to your concern about how many ppl experience pain from the injection and how long the relief should last. I'm just one person and it doesn't mean you will respond like I did.
For me, this procedure was worth it because I wanted relief from the Meniere's and having severe pain for a few hours in 1 out of 3 injections was worth it for me to have 3 months of no vertigo. Now, the first time I got steroid injections several years ago with a different doctor, the doctor did not dilute the steroid medication and that really burned/was painful - it felt like my ear was on fire and I vowed to never get it again. My current doctor was shocked about what my other doctor had done and said that was inhumane, and persuaded me to try it again and I'm glad I did. You might ask your doctor if he dilutes the steroid so it doesn't burn.
What I do during the injection to help myself get through it, is I look at a place on the wall or ceiling during the procedure and focus on that. I repeat to myself a calming phrase and I focus on relaxing my body and especially focus on my breathing. Getting your mind so you aren't focussed on what is happening in your ear can really help you cope and get through it. My doctor talks to me throughout the procedure about hs dogs trying to distract me
I hope I answered your questions!. Let me know if you have further questions. I hope the procedure goes well! You can do it!
You look just like your mom😊
I do!! 😃 When I first moved back to Kentucky, someone at church saw me in my wheelchair and the gossip going around town was that my mom was in a wheelchair!😎 We look so alike that people assumed I was her because they didn't know I was back in town. 😂
Do you always ride in the back and does the motion of the car bother you in any way.
You mentioned you can’t take an oral steroid because of your migraines,why?
Love your videos and Ben is such a sweetie. The perfect service dog.
If I need someone to drive me somewhere, I usually ride in the back because the visual stimulation is too much for me in the front. For balance, we rely on our eyes, our ears and our brain. My right ear is diseased balance-wise, so I rely a LOT more on my eyes than the average person. If I'm having a hard day, I feel more secure in the back seat because there is less visual stimulation. Motion affects me in the car: so when the car is moving, I actually feel better. It is when the car stops or when it stop&go repeatedly that is hard for me and the vertigo hits me like a truck.
I can't take an oral steroid long term (like weeks and months on end) because it can cause what is called Rebound Headache or Medication Overuse Headache for those who are sensitive to getting Migraines. Two names, but same thing. What that means is that the brain sees the medication so much that it stops responding to the medication and it actually makes the Migraines worse in the long run. This is only true for people with Migraine. My Migraine neurologist is fine with me taking an oral steroid 4 days/month, but no longer. Its the same reason why I have to be careful with other medications like triptans and can only take them 2-3/days a week, because they could put me into rebound/MOH. Does that answer your question?
Bene says thank you! He loves to help his Kelly and make his Kelly happy. thank you for your kind words!
I hope you are doing well! I tried MANY times to respond to your message about PTSD and YT is being stubborn about not posting my responses, so I'm sneaking it in here. Thank you for sharing! I hate you are triggered so easily. My heart goes out to you. I hate PTSD period! It's awful and it is unfair first of all that we should be exposed to trauma and then second of all that our brains would then respond to that trauma in a way that makes life really challenging. I've been learning some more techniques on how to cope when I'm triggered and Bene is helpful. Nightmares are the worst right now. I'm glad that the information I share is helpful. Sending you a huge hug. Kelly💜
Incredible Anyway
Yes. You have been so kind and open about your limitations. It helps those of us that struggle this way, know that we are not alone.
Are you frightened to live alone?