I believe I told of my situation before but heres just a little added portion to it. So far I had a catscan, mri of the brain and inner ear, baer test, and hearing test and everything is normal. Primary doctor thought my lab turned into a sinus infection. ENT thinks im perfectly fine, just something that hit me hard and is taking a while to go away (going on week 8). Gave me a 4 day supply of prednisone. Neurologist gave me balance tests and made me march in place for like 5 minutes with my eyes closed and I happened to move. Now i think anyone would move during a test like this, marching so long in place with your eyes closed but whatever. Right after that he said that he believes there is residual damage to my inner ear and my equilibrium is off. Now my question is wouldnt there be any type of test that would show something that is wrong with my inner ear or is it just diagnosis. Should I be taking any other tests like an ENG because my ENT said he has absolutely no idea whats wrong with me and said I can go for a catscan of my sinuses if I want but no one yet has suggested something like an ENG. My neurologist recently put me on acetazolamide and said this should help, but its not. By the way, did anyone ever hear of this medication or take it in the past?? Also, what was fun and wierd during these past 8 weeks, is that one week my right eye turns beat red and then a few weeks later my left eye turned beat red for a day. Eye doc says it allergy related but never had anything like that in the past, only since i got hit with this virus that caused lab like 8 weeks ago. Just so frustrated because no doctor yet has given me a good diagnosis with evidences to back it up, it feels like they just are making things up that sound right but they are not sure themselves. I still feel horrible, head fullness, pressure in different places (face, middle and on top of head or on the sides) usual travels around, ears just feel filled and clogged with a cracking/clicking noise that once again ENT has no idea what could cause that, and when I hold my nose and blow out to try and unclog my ears i feel like something in each ear moves outward and I feel like I get momentary relief but they just wont pop. Just wondering what tests everyone had done and what they showed. If they actually showed something and the doctor was able to give a good diagnosis with actual supporting evidence or if they just make up diagnosis as to whats wrong with you like they are doing with me. Sorry If I seem frustrated but Ive been out of work for 8 weeks and dont really feel like Im getting better, also dont feel like I can work in the condition that Im in, and got school coming up in like 7 weeks and can only hope that I feel better by then so I can resume normal activities. Also Hope that everyone else is feeling better and best wishes to everyone on this site, this forum has been a big help during the struggle.

Sorry to hear you are still feeling bad. I'm surprised you haven't gotten an ENG test. I would try and get that, because as far as I know, that is the test that can tell you if you have weakness in your ears. You will feel better, it's just a matter of time. Try to get to the bottom of this and figure out what is going on. Good Luck!

Welcome to the club. I think just about everyone on this board has gotten a run around on this. Some have gotten diagnosis, some of us still struggle to find an answer. I'm not so sure if some of the drs. who have given diagnosis are so sure themselves. I did have a lot of pressure in my head and ears when this all started and even though I still have some it isn't quite as bad as when it all started in January. My ears still feel full all the time but the pressure in my head isn't quite as bad. My eyes were very blood shot in the beginning but that has pretty much gone away unless I have a day of crying over this thing all day.

Don't hold your nose and blow out. It can be more damaging to your ears. My ears crackle all the time (has gotten better since the start of this).

Take each day by day.

Take care,
Gloria

Hi There
I was into week 12 when I finally got my Caloric test and ENG test, being in Canada I had a long wait to get it. When I went to the ENT with the results 3 weeks later (this waiting sucks, if I wanted an MRI I would be waiting about 9-12 months right now!) and he said it wil all go away. I said, "what about the results from the tests" and then he opens my chart, and reads and says "Oh, well there was some permenant damage, so that explains it, you may have to deal with this for the rest of your life when you are stressed out" The guy hadn't even read the results before my apt and probably wouldn't have if I didn't prompt him! It was after that when I decided to do some of my own research.
All this to say, get an ENG and a caloric test, it will show you if there has been any damage to the inner ear. IF there has been, then you know you have to do some compensation as the ear won't heal, but your brain will learn to make up for the loss of function. If no damage appears, then you will be dealing with some other disorder like MAV.
Hope this helps!

I agree with Gloria on the holding your nose and blowing out thing. I was doing that constantly in the beginning cause my ears were so plugged up, it hurt really bad. My doctor said that each time you do that, you are opening the eustachian tube and allowing bacteria to go into the inner ear, which can cause infection. I had to break that habit, which was hard. I still unplug them, but I can do it without even opening my mouth, I kind of flex the ear/throat muscles. I also take Sudafed, if I have to.

Hi Dizzy2,

How long have you had this thing? Are your ears still clogged? Mine were very bad the first few months. Did you see or at least see the previews for Mask2 (Son of the Mask)? I felt like the baby when he blows on his finger and his head blows up. Thank God some of the pressure has gone. I still have a little in my head and now my ears feel full.

I hope you find a few smiles in your day!
Gloria

P.S. - I haven't talked to Joy and Jill for awhile. I hope the two of you are showing improvement. Joy you always are so positive...thank you for that. Jill - stay in touch. You remind me so much of myself and how hard this has been emotionally for myself. I think of you often.

Hi Gloria,
I'm doing okay. I've actually had some drama going on in my life, so I haven't even thought about my ears! I think they are much better, except at night. I feel dizzy when I try to fall asleep and have to watch t.v. so I have something to focus on. Being in the dark is what really gets me feeling dizzy. I've been taking the ginko, and I'm not sure if it is what helped me, but I'm going to just keep taking it.

How are you doing lately? Sounds like there are some improvements. So that is good! Let me know how things are. I hope you are having more good days now.
Take care,
Joy

Hi Gloria,

I think about you often too. I am still having a hard time with this crazy thing. I still cry about it and I know it just makes it worse but I can't help but think this will never go away. I have been suffering for 20 months now and don't know how much more I can take. I'm sorry to sound so down but I am just feed up with the whole thing.

I sure hope you are feeling better. Thank you for thinking about me, you are such a caring person. Please keep me posted on your progress.

Take care,
Jill

That is great Joy....Maybe I shouldn't have stopped the Gingko so soon. Maybe I'll give it a try again. I hope you work out your other problems. I really haven't had any change in the last month and a half except the strange dizzylike feeling I get hasn't been as severe as June 18th (I remember that date because we were away). Maybe that is some progress, BUT IT IS SO DARN SLOW AND HARDLY NOTICEABLE. Take care.

Jill - I am looking into seeing a neurotogist that Xbombshell31x and some of the others suggested on this board. I've had a lot of test done but not some of the specific ear tests (caloric and ENG). It is worth a try to figure out what has happened to me. I don't know if I'll ever find out, but what is the most important to me is getting rid of this thing. ASLme got rid of hers so we have to try to stay positive. I probably spend half of the day crying most days, but the bottom line is we can't do anything about this.

I can't remember if you mentioned this or not, but do you get headaches and do you have any dizziness or is it all just pressure in your head and ears? I have a hard time sometimes as to weather my head hurts or if it is the pressure I'm feeling. I know that it is definitely headaches at other times. Has any of the pressure in your head and ears changed since the start of this. I know that mine isn't quite as bad when it started but I still have full ears and some slight pressure in my head (feels like it is in the middle). Jill, take care of yourself. Please believe me that I know how hard it is and you've been dealing with it twice as long as me. Together we can get through this and I know that one day we will both be full of smiles again. - Gloria

Gloria,

Thank you for the kind words and I know you're right we have to get over this someday! I don't get headaches, just pressure or ear fullness, ear noise (worse when my ear is really full) pain and lightheaded type dizziness. I had a trauma to my ear from a flight and just can't seem to get any answers from any Drs.

I have seen a neurotogist and he told me he has nothing more to offer me in terms of treatment. He seems to think it will pass someday but can't say how long that will be. You take care of yourself too and let me know how you are doing.

Thanks again!
Jill

Hi Gloria,
I'm sorry it is taking so long. I know the fustration and scared feelings that accompany this thing. I really feel like the first time I had this was MUCH worse. I literally felt like I was being swung around. Constantly felt motion sensations and they were very strong. I pretty much didn't do anything for at least three months, and after that I just forced myself to live my life as best as I could.

This time wasn't as bad, but it was back. Which is bad enough. Try taking the ginko if you can. Have you talked to your doctor about taking it? If it can't hurt, it's worth a try. I think it helped me deal with being more focused as well. I'm still taking it and may stop when the bottle is done, or may drop down the dose. I guess you can take it on a daily basis, so I may just continue. Doesn't make me feel bad or anything.

Hang in there. Try not to think about how long it has lasted (but I know that is hard) and take one day at a time. Continue trying to find out what is wrong, you deserve to know. Good luck, and take one day at a time. I'm thinking about you.
Take care,
Joy

:wave:

Hi Jill,

The neurologist was a jerk to me but from my understanding they are differnt than a neurotogist. Supposedly they specialize in dizzy stuff. Mine isn't really vertigo, I wonder if it is what you experience. The pressure lessens when I'm outside and I wonder if it is because I don't notice the tinnitus as much. My tinnitus pretty much stays at the same level all the time. It seems worse at night and in the morning but I think it is because it is so quiet. I had some trauma to my ear because I let that ENT puncture my ear drum to drain it. I wonder if it would have been better to leave the fluid in there. I suppose it could have ruptured on its own.

Have a good night.
Gloria

P.S. - Thanks Joy! Hope you continue to shake this thing.

Gloria,

Mine isn't vertigo either. It's just a lightheaded feeling that I can tell is coming from my right ear. It's funny but I feel less pressure in my ear when I'm outside too. I wonder why that would be?

I also had an ENT puncture my ear drum. When that didn't help he put a tube in it and that did nothing for me either. I often wonder if I would have just left it alone would I be better now.

I have seen 2 neurologists and one of them told me I have serious issues I need to deal with. I think he thought I was making the whole thing up. He said he has seen people alot worse off than I am and they seem to handle it just fine. The other one has been okay but he's the one that said he has nothing more to offer me. I really admire Joy for her ability to remain positive with this horrible thing. I really believe that being positive helps so much with recovery but it's so hard to do.

Take care,
Jill

First of all, thanks for everyones replies once again and hope that everyone is feeling good. I just got a few questions.

1) Is an MRI of the inner ear more specific and show more things than something like an ENG or Caloric test?

2) Also, my pressure seems to be worse when Im outside during the day, not so much when Im outside at night or in the house, or so it seems.

3) Should I stop taking this medication, acetazolamide, if it doesnt seem to be doing anything? I just really wanna try something like sudafed to see if it can help with anything but I dont wanna take it while on prescription meds.