Good morning,

I had an appointment with my ENT yesterday. He did hearing test and they were normal. He told me that I don't have an ear thing. I know I have an inner ear thing, I feel the fluid in my ears 24/7. He told me that was impossible,that everybody has fluid in their inner ears and it's impossible to feel. I asked him if it's not an inner ear thing and it's not a brain tumor, what could it be? He said all he is concerned about is that it's not an inner ear thing. I was so frustrated. He also said that it's not normal that someone my age (26) with labyrinthitis would still be sick after 9 weeks.

So now, I'm back thinking I have something serious. I took comfort in thinking I had an inner ear thing since eventually it's supposed to go away and it will not kill me.

I am so discouraged...

sboily:
Did you read my post yesterday about "a bit of a blow"
Please re-read what the replies were back to me. I re-read them again this morning through clear eyes and saw even more things to make it positive. I'm sure someone will direct you to the best person to see in your area.
I understand how you are feeling...{{{{{hug}}}}}

Kathy

Run don't walk away from this doctor. Scant is right, read the advice given under the 'a bit of a blow' thread, find yourself a good neuro otologist, find out what's wrong and set yourself on the road to recovery. To say that vestibular neuritis (or labyrinthitis) shouldn't last beyond a few weeks is, to be frank, nonsense. I have a diagnosis of vestibular neuritis - (lab sort of) from a neuro oto, been ill nine months, I'm in my thirties - Ruth, who was on this board, had it for at least 6 months (can't remember exactly) she's 26. Age is immaterial - bad luck can affect everyone. A friend of hers, similiar age I believe, was sent packing by an ENT after being told she was suffering from anxiety - she pursued it, got the test results and was diagnosed with lab.

Sorry you experienced this but be comforted that you are not alone.

hey sarah

i know how you feel. i was in your shoes about 3 months ago and it sux. i still don't have a firm diognosis but i'm going to demand a MRI as a final diognostic procedure.

everyone is right, you can't sit back and do nothing. doctors won't do the work their supposed to do so you're going to have to do it ourself. keep pushing them and eventually somehting will come up.
Hang in there

Anastasia

Hi sboily, sorry for your horrble experience - your post has actually made me really angry, the ENT you saw sounds totally bl**dy arrogant and uncaring. There is no way on this earth that an inner ear disorder can be totally ruled out from just a hearing test and ear examination. And to dismiss the feelng of fluid in your ears by telling you your inner ear is always full of fluid is nonsense - yes your inner ear is full of fluid but we don't normally feel it, he should have least have tried to find out exactly what you meant - whether your ears feel full, or under pressure for example!!!

Just to repeat what I have said on this board many times, ENT people are not at all experts in this field. I myself was totally misdiagnosed and sent on my way by one after my first referral.

In an earlier post you mentioned having an ENG in September, is this still due to happen? (and if so why did'nt your ENT guy wait for the result before dismissing an inner ear problem?? - sorry, ranting again) Do you know whether you get to see a neuro-otologist at the same time? If not, you need to make sure you get referred to one, they are the specialists in this field and won't send you away telling you they don't care even if the ENG does come back clear!!

Finally, really really really try not to worry about it being something more serious just on basis of what this one (nasty) ent specialist told you. It really does sound like he has jumped to conclusions without the proper evidence to support them, and by telling you he does'nt care he really has just proved his own incompetence!!!.

You need to get your tests and get seen by someone who knows what they're talking about - leave worrying until after that! Good luck Hon xx

Oh yes, forgot to say, nine weeks is by no means a long time to be suffering from this, I'm up to four months now and I'm a relative newbie in this compared to some. Again, use this as proof of his lack of knowledge in this area!

Thanks everyone. I really needed to hear that it was normal to still be sick after 9 weeks. That ENT was so cold and I got the impression he did not know much about vestibular conditions. He seemed very young, I think it was his first year of practice.

To answer a few questions from dizzyblond: yes I have my ENG in September even if the ENT seems to think it's not an inner ear thing!!! Because I told him that I don't see the room spin, he is convinced I don't have an inner ear thing. There are different types of dizziness but apparently he is not aware of that. I will also see a neurologist at the end of October. I asked my GP for a neurotologist but she told me that does not exist in this city.

I will try to remain positive. If my ENG is normal, then what will my problem be? I guess I shouldn't think that far in advance.

Hope everyone is well.

Sarah

Hi Sboily - before I reply may I ask you what your symptoms are? thanks.

Hi I Robertson,

I hope your little baby William is doing well. Congratulations!!!

My symptoms are as follows:
- pressure + fluid in ears
- headaches
- extremely tired eyes, they feel about to pop out
I sometimes get twitches
- dizzy /foggy 24/7, I feel disconnected
- feel about to faint or have a seizure
- Sometimes I walk and it feels like the floor is moving
- sometimes neck + back pain


Are you doing any better? I read that things were difficult after your delivery. It must be difficult to go through this with 3 young children.

Thanks

Sarah

I'm a little leary about young doctors myself. When I first had a panic attack my, now former, doctor wasn't sure what it was, when I told him I thought it might be anxiety attacks, he gave me a script for Xanax.

He told me vertigo should only last a week. HA!!

When I got my blook work 2 years ago, he said cholesterol of 275 was a little high. When I switched doctors (an older one) and the new doc found out my cholesterol was 275, he immediately put me on a restricted diet and encourage exercise.

So, I think you misgivings about a young doctor are on target.

Sarah

Yep---as the lady said in the above post "run don't walk" away from that turkey


---not only is he full of "it" but he does not give a big rat's a-- about you---dump him...he is bad news.

Not sure what the options are in Canada...but... get the ENG done on sked----and I see from your post that a Neuro-oto-logist is not available in Ottawa------that may be true but think I would do a search anyway---just to be sure.......


However a Neurologist would be better then nothing....went back through your posts a short way---did you have a MRI or CT done???


You said what the "turkey ENT" thought it was(really was not)---but looking at the symptoms you posted----what does your "GP" think it is??

Hi Subs,

Yes, I had a CT scan done in July and all was normal, youpi! My GP thinks that I initially had a labyrinthitis which caused me anxiety/depression. Now she thinks the anxiety is making this last longer because as far as she knows a labyrinthitis only lasts 5 to 6 days.

I think I know how to recognize which symptoms are anxiety and which are labyrinthitis. I know the anxiety is not helping but I also know that I have been dizzy for 9 weeks now.

I wish a doctor could tell me what you have all been saying on this board: the damage from the labyrinthitis can't be repaired, the brain has to readjust and it takes time, weeks or months.... But the experts I saw don't seem to know or believe that.

thanks again.

sarah

Oh Subs, I forgot to ask. I know that you're not a doctor but you seem to have a lot of knowledge. From what I desccribed above, do you think it could be an inner ear thing?

Good on the "CT"!


...."do you think it could be an inner ear thing?"....

Yes think that maybe so....


......"labyrinthitis only lasts 5 to 6 days.".....


Not so----unless she is talking about the acute phase---where there is constant vertigo/dizziness---and you spend most of your time in bed and throwing up---every medical article I have read says---after the initial acute period----six to 10 weeks---for most and for the rest of us.....longer....because....in those cases....the thinking is------the infection damages the 8th nerve(VN)-----which then causes BPPV----in the majority----for that small group(about 5-10%) it is longer(like many months).....but the nerve regenerates to some extent----and compensation kicks in----and as far as the person is concerned----they feel---cured---but there prob still a little nerve damage---but it is being masked by the compensation. Also, not everyone gets a severe case---some are quite mild---and age can play a role.....in it all.


.."she thinks the anxiety is making this last longer.... I know how to recognize which symptoms are anxiety and which are labyrinthitis.".....


Think you have read this---but you might want to refresh your memory....on the anxiety section...and the length of time.....etc......

http://www.pneuro.com/publications/dizzy/index.html


Also---I think I would print out the form located on the Univ. of Penn's Balance Center Web Site located here(scroll down to "click on form":


http://pennhealth.com/hup/balance/appts2.html

It was created by Nuero-oto-logist's---fill it out and take it with you to the Nuerologist---it will force you to be specific.....and give you some insight....into what the Nuerologist will be asking...

Hi Sboily - well if it is any concilation your symptoms are pretty like mine and probably like most inner ear suffers here. Firstly lab's is not something that you can see by looking in the ear nor does every-one suffer any hearing loss. So your doc does sound a little inexperienced to say the least. As for the acute phase of Lab's lasting 5 or 6 days - if only!!!!! I had that for 9 weeks no exageration. I am still stuck with the sensation on imbalance and the dear old dizzies - likewise the faint thing that you describe. I think that anxiety does exagerate the symptoms and can intensify them but they sure as heck don't cause them. I can talk from experience as I had awful anxiety after the birth of my 2nd baby and believe you me vertigo etc etc was not any of the symptoms. Go back to your doc and ask for a referal to another ENT doc - you are entitled to a 2nd opinion. Take heart form the fact that your CT scan was clear - I do think (speaking form experience) that doc's often then think well its not life threatening so you gotta get on with it. I often think that I know more about inner ear symptoms etc and likely causes than my GP...LOL. Good Luck - Let me know ho wyou are getting on.

Just so you all know,

Anxiety can very much cause dizzy and off balance feelings constantly. Take it from me and thousands of others. It also can give you feelings of your ears being full, pressure in the head, no energy and a lot more. I had an ENG done a CT scan had my ears check numerous times thinking my ears were fouled up and nobody came up with anything. And still I'll feel stuff in my right ear specifically.

I belive very much that the initial infection causes anxiety and that can make your symptoms much worse and last a long time due to the fact that your brain has now picked up the habit of looking for nothing but feeling faint or dizzy or off balance and therefore has become sensitized. When you're to that point all you have to do is think dizzy and guess what you got it.

Remember this....."Anxiety is the great mimcker." It can mimck many things this being one especially after having an initial infection that caused anxiety and so the cycle begins. Anxiety can produce feelings of having a heart attack, numbness, tingling, various pains all over the body, insomnia , depression, fatigue, etc.

Well I just wanted to throw my thoughts and ezperiences in there whether they're taken well or not. Anxiety comes in different degrees therefore causing different symptoms according to the degree.
---Fighter---

Hi Fighter,

I don't disagree that anxiety can cause all of the things you have described. (Although I am sceptical about anxiety causing full ears 24/7) I also think that an inner ear disorder is bound to cause anxiety, and read 'Hope and Help for your Nerves' early on to try and deal with the anxiety part of it. I do, however, think that although the two conditions can sound similiar, IMO, having researched it at one point, there are a lot of subtle differences btwn the type of symptoms caused by anxiety and those caused by an inner ear disorder. Unfortunately too many specialists don't recognise these subtle differences and don't even bother to look for them with a proper consultation and the right tests, just tell people who have an inner ear disorder that they suffering from anxiety, causing needless suffering as they have the wrong diagnosis and no (or incorrect) treatment and truck loads of, ironically, anxiety. I speak as one of those people who was dismissed by an ENT, only to find out months later, that my gut instinct that I had an inner ear disorder was 100% correct.

Hi Fighter - thought I would add my tuppence worth in - I do agree that anxiety can cause lots of very unpleasant sensations - I have suffered from that in the past - so I can relate to becoming 'sensatised' to the sensations - I would say that is like me to a degree at the minute. I am constantly on the alert for signs of the sensations of being off balance and dizzy. However as I have anxiety in the past the previous dizzies felt different and were accompanied by a feeling of fear or impending worry. This is deffinately different. I can feel dizzy or off balance evn when it is the last thing on my mind - I can be absorbed in something else and bam I feel awful - or I can turn my head and wham I feel severly wobbly and walking too. Did you think that yours was anxiety driven following an ear problem and if so how did you get better? I am just interested.

I robert,
Yes I do belive it's anxiety driven by an initial infection. And I am not completely better. I do however notice that when my anxiety is lowest so is my off balance feelings. Although I believe I am sensitized to a point that even when I don't feel the anxiety fisthand I think I still subconsciously still am on the lookout for these sensations. I've had days where I feel pretty good and then it'll hit me out of nowhere and that is exactly how anxiety and panic can work too. you might feel great and all of a sudden for no apparent reason you have an attack. or you feel some symptoms. I can tell you that it is a negative habit that's been created because somewhere in the back of my mind I'm still aware and looking all the time. and a lot of times that's all it takes.

I did have something very similar to this 4 years ago not quite to this degree, but it wasn't until I unlearned my negative thinking patterns that it went away. Your mind is really powerful!! Now it could be an inner ear thing, but it also might just be all in your mind at this point and your mind doesnt know the difference yet.

There's also a lady in the anxiety board that has had problems with this due to anxiety for 13 years.

Trust me I want everyone of you to come out on top including me. I wouldn't wish this on my worst enemy. But also the more you're convinced it's something else or it's this? or that? That is an anxious and a scattered mind doesn't have the energy to heal things in a timely manner.

I'm still working on all this myself. But I feel like I know way too much information on all this to a point it always gives my mind something to worry about. Almost a curse. anyway God Bless and good luck. I'm happy to continue writing. My email is gqutah1@yahoo.com ---Eric---

Hi Fighter - i replied under the other thread - catch you there.

Sboliy - hope you are ok