Hi Everyone,

Does anyone know anything at all about a trauma to the inner ear? I have been suffering over two years after a flight I took.

I am still dizzy everyday and some days my ear feels like it is swollen and full of fluid. I have terrible pain deep in my ear, down the side if my face and neck. I am at the end of my rope with this and wonder if it will ever get better.

I'm sure I posted this question before but I am desparate for help and encouragement. Will this ever go away?

Thank you for listening and I appreciate and suggestions. I hope everyone is feeling well.

Jill

Hi Jill,
So sorry to hear about the horrible condition you have been dealing with for so long!! I have had a year of dizziness and disequilibrium - I can't even imagine what it would be like to have the ear pain on top of it! Sigh....

What are your health care providers telling you? What tests have you had, and what's your diagnosis at this point? Have you seen specialists and had the routine inner ear tests? Have you been referred to VRT? Offered meds of any sort?

Though I can't speak in regards to the pain, I certainly can relate to the misery that comes with always feeling dizzy - it just makes life SO HARD!!!!! May this coming year be the year that you begin to see a positive change in your condition! Isn't it the most comforting thing to know that this is a place where other people completely understand what we're dealing with? There is something wonderful about knowing you aren't walking through the difficult times of life by yourself. Even when surrounded by friends and family, what we know is that they can't begin to imagine how hard this stuff is!

Take care ~ Robin

Hi Robin,

Thank you for your reply. I do not have a diagnosis yet after two years. I've had lots of tests including MRI, CATScan and ECOG Test. I am going to the Balance Clinic next week to have more testing.

I've tried lots of different medication, fluid pills, prednisone, nortriptlyene and currently taking Verapimil. So far I've had no relief. Every Dr. I see looks at me like I'm crazy when I tell them all my symptoms. I just want some relief from this and after two years I'm beginning to wonder if it will ever leave. Is it possible to have to live like this forever? I don't think I could do it.

Sorry for the negative post but I am feeling really sad about this today. Thanks again for your reply and I hope you are feeling well.

Take Care,
Jill

Jill,

Hugs, Hugs, Hugs.

Remeber I know how you are feeling especially the burning pain. The good news is mine has slowed down some and I only get it once in a while so that can go away as I am proof of it and yes the doctors can never tell me what causes it.

I really sympathsize with you with the dizziness as mine only started subsiding after a year over the month of December. I don't get it hardly at all and my vision has improved greatly too so to still be dealing with it my heart breaks for you. Remeber it can go away as I never thought I'd get better but it seems little by little I am getting better.

As for the head pain and pressure in my head and ears and the tinnitus, I know exactly how you feel. I don't know if this next thing will help you at all but remember I have it in both ears at least it seems to only be in one ear for you. I know that it still bothers you, but try and look at it on a brighter side as it seems to only be your one ear.

I had an episode of depression and anxiety this morning but managed to pull myself out of it. It is very hard to do but if you can get control of that it really does help with your symptoms versus your mood.

Try and remain calm as you are going to a balance center soon and they should be able to run some more test to get a better handle on your situation. It wasn't until I went to a balance/dizzy center did I get more support and understanding so I think you will feel a little better going there. Don't get discouraged if they don't answer you right away. Give them some time to run a few of the inner ear/balance tests as you really haven't had any of that done yet.

I can honestly say that my symptoms only seemed to start to improve after VRT and the klonepin which has an effect of slowing the vestibular system down some. I only take a small doseage so it isn't enough to hinder compensation from the dizziness. You should get some vrt at the balance center you are going to. And remember I had no actual balance issues just felt off and lots of brainfog (cottony feeling in my head with all the head and ear pain).

Remember also that Howard on the boards had that meniere's test with a positive reading like yourself and he has been improving a lot.

Good luck on your appointment and if you need to talk feel free to post again. I always feel better talking to someone on these boards as we all can relate to each other.

Just to make you smile......... :jester:

Gloria

Jill

Your condition sounds v much like mal de debarquement syndrome (MDDS) - it isnt caused by trauma from the flight as such - but a failure for the brain/inner ear to compensate to flat land after prolonged motion. Do a search for this - there are support groups for it...

cl x

Hi Gloria,

Thank you so much. I really needed something to make me smile today. This stuff just gets so old and really takes its toll on us. You sound a lot better and I am really glad to hear that!

Your right, I need to be thankful that it is in only one ear and not both. It's so hard for me to remain positive and be thankful for the progress I've made. I think for me and probably all of us its the uncertainty of what it really is and when it will go away.

So you still get the pressure and tinnitus in both ears? Is that everyday? Did your Dr. ever tell you what causes that? I still get the pressure but it still fluctuates, some days its really bad and the the next day not so bad.

My thyroid is finally under control and I really thought that was the cause of all my problems but I guess I was wrong. I'm thankful for that too because it made me so tired.

Thanks again for your support and I hope you are 100% real soon.

Take Care,
Jill

Jill,

Never thought of CL's suggestion but she has a good point. It usually happens to people on boats but why not a plane same concept.

Good suggestion CL - Gloria

CL,

Thank you so much. I never thought about that but it sure is a possibility. I hope you are feeling well and thanks again for the suggestion. I will look into it.

Take Care,
Jill

Jill,

I still get the pressure but the pressure in my ears is different than the I'd say the first 8 months. It felt like something was shoved in my ears or like i blew my nose a million times really hard and was 24/7 then slowly it went away and now it is like pressure deep inside my ears or head and fluctuates daily and sometimes even hourly. I get a lot of pressure in my head too and even still have daily headaches but I can honestly say that over the last month or two the severity of the headache on most days and nothing like a year ago. The tinnitus has never changed in intensity and is still quite loud (every once in a while, it doesn't seem as bad, but that has only been lately).

Like you said, I have improved at a snail's pace and not near full recovery yet, but I think we do get discouraged because of how long we suffer and because we really don't know or understand the cause.

Keep your chin up. Don't give into it. I know how hard it is, but I do know that there is a difference between me telling you not to give into it than someone like your husband telling you that because I am experiencing it first hand. Does that make sense what I'm trying to say to you? Take each minute by minute and try and do something nice for yourself.

Hope you have a better day tomorrow. - Gloria

Thats ok!

It can happen after plane flights too but not sure about the ear pain etc.... But worth mentioning to your specialist. Where are you based? Clxx :D

Hi CL,

I'm in Grand Rapids, MI. We have a Balance Center here that is fairly new. I sure hope they are able to help. I've been to many Drs. and most think its anxiety but I never had anxiety until this happened.

Jill

HI Jill,

Just wanted to say I'm so sorry you're feeling down, been there, am there right now with a relapse. I have definitely been in that place where I'd been ill for a long, long time and thought there was no way I could recover and I did. Yes, I've relapsed, but I did get better and so it follows I can again, and I am eternally grateful for the time I've spent well. I am sure you will and can get relief, it's often a matter of time and obviously a helpful specialist to give a helping hand is never a bad thing.

I really hope that the balance centre helps you. If they don't you could always travel to one of th centres of excellence for balance disorders with the big specialists in the field. It always saddens me to see them hand out these nonsense anxiety diagnoses, how hell they think anxiety causes the symptoms you're describing I don't know.

Hang in there Jill, when you're in the thick of it, it always feels like it will never go but it can,

best,

Hi hbep,

Thank you so much for the encouraging words. You are so kind! I remember you were the 1st one to reply to my very first post here. I feel bad that you are not feeling well and I sure hope you feel better real soon. I'm sure you will because you have a very positive attitude. How long did it take for you to feel better the first time around with this stuff?

Thanks again and I hope this passes for you real soon.
Jill