hi,
i am trying desperatley to figure out what i have. i have had a few dizzy spells, nights where i am up motion sick, motionsick feelings during the day, at work where ever that come in waves with hot flashy feelings as if i am going to get a fever, noise sensitivity to some degree. and fluid feelings in ears popping crackling and so. wake up warm, i am always cold! i had an mri, eng,abr,ecog and bloodwork all negative.
the ent i saw said i had an inner ear disturbance but insists lab does not start and stop, and only lasts 6 weeks, i have read otherwise on this board. i have had 12 days with no sick feelings thus far, i am going out of my mind, waiting for it to strike again. the ent also sent me for a ct of the sinuses and i go back in a week. has any one hear had symptoms that came on gradually? he also told me to watch my sodium and caffine, cant figur out why? if my fluid levels were well with in the normal rang. he said allergies can cause this? any one with info on that?
i would greatly appricate any input! i am so over this ordeal! thanks lib

hi,
i am trying desperatley to figure out what i have. i have had a few dizzy spells, nights where i am up motion sick, motionsick feelings during the day, at work where ever that come in waves with hot flashy feelings as if i am going to get a fever, noise sensitivity to some degree. and fluid feelings in ears popping crackling and so. wake up warm, i am always cold! i had an mri, eng,abr,ecog and bloodwork all negative.
the ent i saw said i had an inner ear disturbance but insists lab does not start and stop, and only lasts 6 weeks, i have read otherwise on this board. i have had 12 days with no sick feelings thus far, i am going out of my mind, waiting for it to strike again. the ent also sent me for a ct of the sinuses and i go back in a week. has any one hear had symptoms that came on gradually? he also told me to watch my sodium and caffine, cant figur out why? if my fluid levels were well with in the normal rang. he said allergies can cause this? any one with info on that?
i would greatly appricate any input! i am so over this ordeal! thanks lib

I believe allergies can cause all kinds of things. I was diagnosed with labs at the end of august......it was nasty......they told me it was a 3 month ordeal.....I am at that point now and better. But in the past prior to labs I did have off balance feelings......when my allergies were bad......they swell up the tissues in the nose and the ear tubes are connected. I am at menopause age now and that alone probably makes things worse......hormone fluctuations cause water retention.....they can also cause swelling of blood vessels which may make some pre existing conditions worse. The best thing to do is to get a good checkup.....and it looks like you got that. So don't get scared.....I have lived with allergies for years......and yes they can make you miserable......best thing is to try to control them. I take actifed......and use a steroid spray called rhinocourt aq.......

I believe allergies can cause all kinds of things. I was diagnosed with labs at the end of august......it was nasty......they told me it was a 3 month ordeal.....I am at that point now and better. But in the past prior to labs I did have off balance feelings......when my allergies were bad......they swell up the tissues in the nose and the ear tubes are connected. I am at menopause age now and that alone probably makes things worse......hormone fluctuations cause water retention.....they can also cause swelling of blood vessels which may make some pre existing conditions worse. The best thing to do is to get a good checkup.....and it looks like you got that. So don't get scared.....I have lived with allergies for years......and yes they can make you miserable......best thing is to try to control them. I take actifed......and use a steroid spray called rhinocourt aq.......

the ent gave me allegra but i am afraid to take it because it says it can make you dizzy, not what i want. i have been taking claratin and flonase it is helping with the stuffiness but i am still worried about this inner ear disturbance. who told you it could take 3 months? was it an ent? did you have the same symptoms? thank you so much for the reply!

Hi Lib,
Welcome! I don't know that I should be enthusiastic about saying that, as I am sure you wish you never had to look this up!

I can relate to what you are describing with the exception of the ear popping and crackling. First I'll tell you a brief (sort of a joke, I am long winded!)description of my situation and see if you think it sounds like yours.

A year ago in December I had a freaky vertigo attack in the middle of the night out of nowhere. I mean shocking, hold on for dear life, I'm on the scrambler type of thing. I have several attacks like that during the night, and after each one, had to go to the bathroom, in sweats, hot flashes, nausea, you name it, and in the morning went to the emergency room. I was diagnosed with viral labyrinthitis and sent home on Meclizine. After a week I made a complete recovery (now this doesn't sound like your story, but it's relevant to mine which you will understand in a moment).

I was normal for 6 month but in June started feeling a subtle sick to my stomach feeling (yet ironically, eating seemed to sooth me a bit). Over the next few weeks it progressed to a buzzyheaded sensation then disconnectedness, nauseous when watching tv or the computer, overly tired, really sensitive to motion, tinnitus (ear ringing), and general motion sickness, even when I wasn't in motion. Then the vertigo started becoming apparent, but it wasn't as traumatic or debilitating as my attack in December. These feelings were constant and persisted at a high level for two months, and then started to break up a little, giving me fleeting moments of clarity. Then it was hours, then days of manageable symptoms for periods of time, with relapses back to the bad symptoms. That brings me to my current state which is about 60% of the time manageable and 40% of the time unpleasant. So I must confess that although very slow, there has been improvement.

I have had all the same tests you listed, but my ECoG and ENG were abnormal. However, you should know that the ENG only tests a portion of your vestibular system, you can still have damage, but they can't measure it as it's inaccessable. And the ECoG is falible, if you do an internet search you can read all about the pros and cons of that test. It's primarily used to diagnose Meniere's disease (which you can also do a search on and read all about it). Mine was abnormal which gave my ENT cause to believe I had the disease. However, I was referred to a neuro-otologist who disagrees with her diagnosis based on my symptoms and how they come on. My latest diagnosis is vestibular damage brought on by labyrinthitis and possibly vestibular neuronitis (also considered a viral situation of much speculation) (also a chance that MAV is playing into my troubles, but that is up for debate). My ENT explained that in many cases when they can't find a cause they blame it on a virus, and that's where vestibular neuronitis comes in.

You are right about the 6 week duration for Labyrinthitis. I was also told that that is the usual maximum duration (and I think it was text book for me back in December), and I have read this timeline on mulitiple sites on the internet as well. However, I think the point where labyrinthitis becomes a drawn out episode is when damage is done. Then it's a matter of having your brain learn to compensate for the damage which is permanant. My Neuro-otologist says many patients recover quite well, but it's hard to say for certain how each patient will fare. It's a wait and see game.

So, there is still a mystery about what started in June and why, but the doctor doesn't seem to be all that concerned with giving it an exact label. He is just convinced that I have damage for some reason, and I am now going through the process of trying to cope with it.

Ok, enough about me, there are a few things you might find helpful, Meniere's disease is a condition that comes and goes. Do a web search and you will find a list of typical symptoms and a description (in brief the typical symptoms are dizziness or vertigo, tinnitus, ear pressure and hearing loss which can initially be only during attacks, and can also be in such a tone loss that you don't notice). A lot of times it's diagnosed after you display a pattern, and can take a while to determine. (My ENT still thinks I will end up having it, but I am not listening to her anymore, I am going with my specialist!) But I also know that once you have vestibular damage you can have periods of feeling well and then back to the lousy stuff again, so it's a tough one to define for certain. A word of caution, a lot of general physicians like to overdiagnose Meniere's. If someone tells you you have it, you should ask for a referral to a neuro-otologist to be certain. That leads me to the no salt and no caffeine issue. A person with Meniere's is generally given a low salt diet that also includes restricting caffeine. The idea being that the fluid in your inner ear is not being managed properly, and you have an excess which causes the destruction of the vestibular system and the dizziness symtoms. Reducing the fluid by use of diuretics and salt reduction are possible ways to stop or reduce attacks. (I know all this because Meniere's was my initial diagnosis and I did my homework.) I took the diuretics and felt awful not better, which also helped convince me and my neuro-oto that I didn't have Meniere's.

In any case, you might want to try to get a referral to a neuro-otologist because I, along with many others on this site haven't been all that impressed with our ENT's. They are just not specialized enough.

Ok, told you I was long winded, hope that gives you a little info. Keep us posted on what you find out.
Julianne

Hi Lib

..."ent i saw said i had an inner ear disturbance but insists lab does not start and stop, and only lasts 6 weeks"....

Well many who have "Lab" here would disagree with that---in fact many of the Doc's who have an interest in this area and are located at the "Centers of Excellence" in this area---would also---while some---of the medical articles still talk about six weeks, etc....most of the current research shows---can last for many, many months(even years) after the beginning of it---which, in an of it self is very difficult to always pin down---below is a web site that just about covers it all:

http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html

(preapproved by Mod 1)

And this web site covers "compensation" which is how the brain/equilibrium center handles the vestibular injury(and that is what Lab is):

http://www-personal.umich.edu/~boismier/Compensa.htm

(preapproved by Mod 1)

I think you will find them interesting---and find your self better prepared to deal with your ENT---it is not at all unusual for most(I like to say all) ENT's to open their cook books and go to the/their original recipe---for this condition---which most here will tell you/and attest to---is dated.

:cool:

hi,
thank you both for your replys, i feel better after joining in, i have been reading the boards for months and finally figured out how to get on.
the ironic thing that has also happened is my friend was just diagnosed with mieniers(sp) she just had the tests done on fri at the same office i had mine on monday. i cant understand how all my tests came back normal.
here is how mine came about, labor day weekend, did not feel good and had a sinus infection, was up all night nauseated(thought it was the taco bell) went on antibiotics. a few days later i felt like i was going up in flames, i never ran a fever just very warm for a few minutes, a few days later i caught a cold that went a good 2 weeks, a week later i has 3 dizzy spells, one being very weird but i cant say vertigo, they were pretty quick but very scary.from there on out it was motionsickness and just feeling creepy, i was up all night nov 13 motionsick again. scince then i have only had one mild motion sick feeling but occasionally a dropping feeling, when i lay down.
when i asked the ent if i had hydrops he said " you have symptoms of hydrops your tests were normal" what do i make of that? he also told me people get dizzy and it goes away, and he thought i was getting better.
i have read on all the inner ear disorders and i dont really match any of them. i have a hard time believing that allergies could have done all this, i am not sure.i go back in a week and see him again, ct films and all.
thank you again for your replys, and help. it is greatly appricated!

Hi again Lib,

Interesting story, I have heard that Labyrinthitis can come on the coat tails of another virus such as a cold. (There is a theory that the actual Labyrinthitis virus is related to the same virus that causes cold sores)

How long has this been going on for you? My symptoms also don't fit any specific ailment either, so I can relate to that frustration. As far as the Meniere's tests, I have read and been told that even if you have a negative ECoG, you may still end up with a Meniere's diagnosis, it's not that great of a test. I hope you don't end up with Meniere's but I guess I am just saying that the docs can't rely of the tests alone to make that call, it has more to do with a pattern of symptoms according to my doctor, and the ECoG is used to put the final touches on the cake so to speak, if they suspect it, it's more of a confirmation of a suspicion.

Sounds like good news that you are having a lot of good days lately. I live with that edge all the time, "am I going to stay fairly well this time or am I going to have another bout?" so I can relate as can many here, I am certain. But everytime I do go back to feeling lousy I have to remind myself that this will pass, and I will get another "break".

Let us know how you are doing. Good luck.
Julianne

hi,
well 12 days good but then..... i woke up last night again hot and fevered feeling, as i try to sleep i feel like i am falling backwards, dropping kinda. i feel like i have fluid in my ear and the last few mornings i have been running a low grade fever. i also wonder about the tests i had, he said they were all normal, would one then suspect a virus?
thank you for all your helpful info.....do people just recover from this? as the ent said " some people get dizzy, then it goes away"