Pretty upset after seeing ENT today about diagnoses

Ears, nose and throat
1

Hi

I wonder if any of you have gone thru this.  I saw the ENT about 2 months ago and did the VNG test, well I got thru most of the test and when it got to the end where they put the air into each ear, my dizziness got so bad they stopped the test and I had only done one ear, well tried to do that ear.  So after this he started me on VRT, which I've been doing for about 3 weeks.  Well I went to see the ENT today and I wanted to know exactly what the diagnoses was, and he started going thru my chart and said well, you couldn't finish the VNG so we can't tell if it the inner ear, but since your having headache with dizziness I want to start you on topamax, and if it works then we will no its vestibular migraine.  If not then I suppose he'll try another med if I can't take the topamax.  So I basically left there with no real reason why the dizzy rocking/swaying crap is happening.  I asked him about the other symptoms of lightheadness, headaches, falling and leaning sensations, anxiety, feeling like i"m walking on marshmello's, floor moving and bouncing, floating feeling, feeling like i'm on a boat when I'm sitting, standing, walking, laying down, feel like i'm being pushed forward when i'm walking, if all this was normal for vestibular, he said yes.  

So my question remains, what do I have and what is causing it?  I'm curious about this VNG test, are suppose to have dizziness when they do it, if so. then what does that tell them, if your not dizzy what does that tell them.  

I'm starting to think all this dizzy crap, is exactly that, they have no idea, so they try all this medication and the VRT in the hopes that something gets better.  How in the heck are you suppose to find out what this is.  If anyone can explain, please do.  I am so mad right now, because he is treating me but has no reason for what is happening.  I understand I couldn't finish the test, but I would think if I got dizzy within 30 seconds then that must tell them something.

Please if anyone can help I would be so grateful.

THanks

2

Is this a duplicate post as I have responeded,on one already the same??

3

Hi Patty

The VNG test basically identifies how the ears are working together or cooperating with each other. For example I think my right ear is 8% better than left ear or my left ear is 8% weaker than my right, depending on how you look at it. Anything less than 10% is within acceptable limits.

Its not a particularly nice test and it will make you dizzy. My doctor played word games with me to help keep my mind off the dizziness. It did to some extent but the dizziness didn't last long. I just gripped the sides of the bed.

Every symptom you described above I have had myself and its what happens when your balance system has been compromised or damaged. The messages sent to your brain are mismatched hence why you are all over the place. It was probably caused by an infection or virus or you could be experiencing silent migraines without the typical migraine headaches.

My GP didn't initially throw drugs at me so if yours is, take them as it sounds like he wants to go through a process off illimination but bare in mind you wont know if they have worked or not for at least few weeks.

VRT is designed to encourage dizziness. You keep doing the exercises that make you feel dizzy until they no longer make you feel dizzy. 

Like you I was very angry too, I thought my GPs and consultants were bloody useless but sorry patty it is what it is and you will get better. 

Take care

 

4

Hi Patty

You have the same symptoms i had.....sounds like vestibular neuritis to me. If you have no hearing loss then its vestibular neuritis and if you do, then its labyrinthitis.

The air and/or water test is supposed to make you dizzy. Its when you arent dizzy that there is damage to your inner ear.

It takes time for this to go away. I had VN twice. The first time it lasted 2 years and the second time it lasted 4 months. Vestibular rehab is the only thing that helped me.

Debbie

5

Yes you're right there Darren..however,all i can say is the adage of "keep,doing them Until they no longer  make you dizzy' doesnt work for all. As i,discovered,because no amount of repetitions, months on end etc etc made one  iota of change for me..  I really think that they need to tailor VRT more for each person, as one size doesnt fit all,but they all seem to use the same ones for everyone, and the only difference is the amount of reps and intensity.

6

HI Debbie

Thank you for responding.  I haven't really looking at VN, because i was told it was vestibular dysfunction, now could be MAV, it makes no sense. But I will look at the VN info.

Do you know about the VNG test?  I am curious since I got dizzy in the right ear but could't do the left, what does it mean if you get dizzy?  There has to be some reason for it.  If you don't get dizzy it means you have inner ear damage, so if you get dizzy does it mean you have no damage?  I honestly am so cunfused by this, what exactly does this test tell them?  If you have any info I would sure love to hear it about it.  

You said you had the same symptoms as mine.  I have to tell you this constant rocking/swaying stuff is for the birds.  I seem to have more when i"m moving around.  But my anxiety gets me, so I get scared to stand up for long and move.  But I do it anyway.  I go to work everyday, and its stressful so that doesn't help much.  Did you notice you had it worse at certain parts of the day?  Mine seems to be at night, I think its the stress all day make it worse. Did you have anxiety with it, mine is worse in the morning, cuz I worry about how I'm going to feel all day.  

I will continue the VRT, I hope as my head gets used to it, it will not continue to cause dizziness for days.  Did you notice when you would start increasing the VRT, did the dizziness last for hours after the first increase?  Did it go on for days as it slowly settled down?  Sorry to ask so much I think it helps me to know this is all normal.  I thought the dizziness would only happen while doing the exercise itself, but it goes on for hours and days with each increase.

Well thanks for any help and advice you may have.  Hope you doing well and not in the dizzy caos.

Patty

7

Hello patty. I can relate to what your going thru with your symptoms. I too have been to an ENT last summer and that same test was done on me and it made me very dizzy and after it was done I was told my vestibular function was normal. I do have hearing loss and ringing in both my ears but since the test was fine he referred me to see a neurologist which I did and had a brain MRI done which was normal so I don't know what to do anymore. I have an appt Friday to see an otolaryngologist which is a specialist cause I still believe something is going on with my ears.

How do u manage at work with the dizziness ? Do you have a sit down job ?

8

Hi Patty,

You maybe getting a bit confused. A vestibular dysfunction simply means something in not functioning properly, It's a symptom, not the cause.

The cause could be:

VN - Vestibular Neuronitis

Labs - Labyrynthitis

MAV - Migraine Associated Vertigo

These all cause a vestibular dysfunction.

The VNG test they want to do on you is to check whether or not your ear gubbins which are responsible for balance are working properly. or is one ear doing all the work.

Anxiety is path for the course with this. As horrible as it is, it's perfectly normal, it's just your body's way of protecting you, over protective I would add but perfectly normal.

Both stress and anxiety will exasaperate your dizziness and that is perfectly normal.

Getting dizzy and anxious while standing up is also path for the course. Its horrible but it does get easier. Did you know that standing on the spot is one of the hardest things we do. To keep us anchored, we use our eyes, our balance gubbins (in the ears), our muscles. These things all work together to keep us steady. Now if one of these are comprimised, its a no wonder we're swaying all over the place.

Walking is a nightmare too, I was always swerving off to the right but that'll fix itself in time too.

Our brains are clever things and they just need to recallobrate but it just takes time.

Try not to stress, its not worth it, the only thing that will thrive on it is your anxiety.

I hope you don't mind be jumping in but I have experienced everything that you've described and I promise you, you will feel better. It just takes time.

9

Interestingly Michele when I last went to ENT my vestibular function was also normal, so that left me just one thing to explore and that was MAV or Silent Migraines. After a bit of research Proproponal kept coming up as a migraine preventative and I told my GP that's what I wanted and after taking it for about a year or so, I've never felt better.

Good luck with your appointment :-)

10

I personally never gave VRT 100% becuase I never liked it. I bet if I do the exercises now, I'll be dizzy. I'd rather not thankyou ...lol but you are right Gill they should be tailored, rightly or wrongly I always felt a bit palmed off.

11

HI well when they did the V N G on me it was water that make me dizzy but i finich the test after 2 hour of testing, they find NOTING .but i am dizzy 24.7

 

12

T Y for the info .

13

HI Darren

Thank you so much for explaining things.  I knew the vestibular dysfunction couldn't be a diagnoses, but a put of one of the disorders.  But since I couldn't finish the test, they can't tell me much.  I have noticed one thing about all this, all of the things they do to try to fix it are the same, VRT and meds and time.  So I guess it doesn't much matter what its called.

But anxiety is awful with this.  One day I same okay, and then the next its panic city.  It makes no since.  I have had GAD since 1999, when my thyroid stopped working and I was having anxiety then until finally some doc listened and was able to help me.  The anxiety stopped once I got the meds right.  Then again when the peri meno started in 2008, got that handled, I had dizziness then also and going back thru my records it was the same, rocking/swaying thing, but not as bad and that time I was told it was BPPV and had an eply and did bradt dorf exercises and ti went away.  But this has taken over my life.  Its been going on for 9 months and i"m so tired of it.  I think what I hate most is, its always there in some form, whether it be rocking feeling all day, now I'm having falling sensations, or can't look up and down while working coz it make me feel like I'm moving side to side, or the headache that I get, its not like a full headache,its like one where you feel it coming but it nevers goes full pain, it lives in the top and front of the head, causes the dizzines to be worse, have head pressure with it at times, also neck pain and tension, sometime nausea and at time my vision is kind of a grey like smokey thing, so maybe thats why the ENT wanted to give me topamax, he said could be migaine vertigo,  but I have it daily, is that normal for MAV.  

I won't be trying the topamax, it has some really bad reviews and has so many horrible side effects.  

I thank you so much for the info you gave me and I do hope this gets better.  Right now after doing the VRT with the therapist on tuesday and having first the dizziness so bad that night I could hardly get around, then I had it some yesterday and the falling sensation started again last night and still this morning, it makes me not want to continue thre VRt,but I will it will just be slower so I don't have dizziness for days on end.  I thought it would only be during the exercises, but apparently it goes on after and for days.

Thanks tho for all your info.

Patty