Hey guys!

I got some good news a few days ago..I finally got a re-referral to another ENT. I have an appointment on thursday.

The dizziness however has been getting worser by the day. Most times when I'm walking..it feels like my feet aren't even touching the ground...its like I'm constantly on a trampoline.

And when I stand or sit still..the feeling of falling is so severe..yesterday I had to throw myself on the floor of a busy department store and even then I didn't feel relief.

It seems...the only time I feel more normal is when I'm in an elevator or on an Escalator.

I feel now like doing anything is hell on earth for me. Now I fear that they will not find out whats wrong with me at this appointment. I fear they might say that because i've seen 2 ENT's..something would have shown up. But since the symptoms have got worse...surely that means there is a problem that is getting worse???? I haven't had hardly any standard tests either.

Sorry guys...I'm just getting so worried now. 5 months of this is really getting to me know.

Hey guys!

I got some good news a few days ago..I finally got a re-referral to another ENT. I have an appointment on thursday.

The dizziness however has been getting worser by the day. Most times when I'm walking..it feels like my feet aren't even touching the ground...its like I'm constantly on a trampoline.

And when I stand or sit still..the feeling of falling is so severe..yesterday I had to throw myself on the floor of a busy department store and even then I didn't feel relief.

It seems...the only time I feel more normal is when I'm in an elevator or on an Escalator.

I feel now like doing anything is hell on earth for me. Now I fear that they will not find out whats wrong with me at this appointment. I fear they might say that because i've seen 2 ENT's..something would have shown up. But since the symptoms have got worse...surely that means there is a problem that is getting worse???? I haven't had hardly any standard tests either.

Sorry guys...I'm just getting so worried now. 5 months of this is really getting to me know.

--------------------------------------------------
Hi GroovyK,

In all this time, did any doctor ever mention "Benign Positiional Vertigo"?
(Look it up)
If you rolll over in bed in a dark room and feel like your head is still spinning
for a few seconds afterward, then this must be ruled out.
There is a painless manipulation which can be done by a skilled ENT which will
moves some debris particles in your inner ear balance canal to a less sensitive area.
It takes a bit of leaning back and rolling over to do this and you will feel better
immediately.

Were you ill with some kind of inner ear infection before this all began, or were you on some apparatus which turned you upside down?

Ron

Hi Ron

BPV was mentioned at the very beginning..but I don't get any spinning sensation.

All my problems started with a series of ear infections. The very last one was viral. I haven't been the same since..and the constant dizziness has gotten terribly worse over the 5 months.

What gets me..is the ENT looks in my ear, does a few tests..mostly neurological (he did test for BPV by pushing me back and watching my eye movements) and that was it. He sent me on my way as if I had to get over it. 2 months later and I'm crippled by the dizziness.

I'm now getting fluid in my ear because I have nasal and ear congestion.

The only other problems I've had with my ears is when I was 4..my E tubes were so blocked I couldn't hear..so I had gromits put in and that cured it.

Thanks for replying Ron

Kelly

Groovik, is there a neuro-otologist in your area?

Mica

I've tried to be referred to one but they said I sould see this ENT first and if that doesn't go well..they will refer me.

Kelly

Hmm that was what they said to me also - its taken me 2 yrs to get to see a neurotologist. Keep being assertive kelly - could u afford it privately? xxx

Hey

I've been told that if my ENT appointment next week doesn't go well...I will be referred straight away.

I could afford to go private..I have already paid out £1000 seeing an ENT and Neurologist because I was getting nowhere.

But I'm gonna see how it goes next week and if I feel I'm getting no answers..I may have to pay out again. but it will be worth it...life is no fun for me...more like hell on earth.

Kelly

Not much to say that's not been said already, but I'm thinking of you and keeping everything crossed that you get your referral to LL and co!

Ann

Thanks Ann. Much appreciated.

Kelly

Hi Kelly,

Good luck for next week, I know how you feel I have paid out thousands in the past 6 years I have had this and now I cant work anymore dont have the funds to go private anymore. I have my fingers crossed for you that you get some answers real soon, this is no life,

Chris x

Hi Groovyk,

I just wanted to quickly write that my heart goes out to you. I too suffered very badly with just what you describe the 'trampoline walk'. It freaked me out amjorly and I was nigh on convinced that I was seriously ill, how could it just be my ear. I am glad that you are getting to an ENt soon, hopefully they can reasure you and give you a dignaosis. I just wanted to add that the trampoline walk does go away! I do not suffer with that at all any more, so please be reasured. All that was the matter with me was not having fully compensated for labs. I was at one point so bad that even walking a few steps was very difficult and standing still was nigh on impossible unless I could hold onto something for support. Good Luck and do let us know how you get along.

Thanks willsmommy!

I'm so glad yours went away..and I too hope my mine does soon.

As it all started with an viral infection and then I was first told it was labs..I know theres a possibility it might be something similar.

Thanks

Kelly

Not much to say that's not been said already, but I'm thinking of you and keeping everything crossed that you get your referral to LL and co!

Ann

I see this LL mentioned in quite a few posts. I know that folks don't like to mention names but if someone could be so kind and post this info it would be greatly appreciated! :)

Hi John - LL is Prof. Linda Luxon, neuro-otologist at the National Hospital for Neurology and Neurosurgery in London

Ann

I'm not a medical professional and cannot diagnose your problem. But I can tell you my personal experience and make a suggestion based on my experience.

See an allergist.

My world unexpectedly and suddenly went tilt. .
That's the only word for it.
Extremely scary. :dizzy: Words don't adiquately describe it.

Went to the ER and the Dr said "Whats the problem."
I told him I've lost my marbles and my mind has the world spinning and I can't set straight, walk straight, nothing. I was trying to hold onto the wall to stop its spinning while lying in bed.

The ER Dr looked in my ears and told I had not lost my marbles, but they were certainly very swollen. He prescribed over the counter Original Dramine to shrink the swelling and advised me to see an allergist.

The Dramine helped. Took about two weeks of taking Dramamine for my world to return to competely normal balance that first time.

I saw an allergist. My inner ears swell from fumes from man-made fumes and petrolem based products.

That was a couple decades ago.

If I avoid smelling/breathing paint, gas, oil, the fumes in a tire store, tar,ink, perfume, colonge, air freshners, scented soaps, scented fabric softners, scented cleaners, scented candels..all manner of scented items my inner ears do not swell and I have no problem.

Sure it certainly reoccurs everytime I run into the above items.. and I take Original Dramamine and it will solve the problem. Sometimes it takes repeated doses but I can feel it getting better as the inner ears shrink.

If they are not in swollen condition a Dr cannot see anything wrong. Because mine is allergies they do not stay swollen when I have not been around anything I am allergic to. I'm thankful the ER Dr advised me to see the allergist.

Over the years I have gotten sensitive to recognizeing the "beginning" feeling of when the inner ears are beginning to swell and can take a Dramaine (or half a one) to stop it in it's tracks and shrink it to normal. Had to take half a pill yesterday , since I visited a person who had a scented candle going and I could feel the swelling starting.

Just my 2¢ worth.. I suggest seeing an allergist. Hope that helps.

hey snowmelts

What are your symptoms like? i don't get any spinning sensation.

Kelly

Groovyk

I just wanted to send you words of support. I know how difficult it is to feel out of wack and not know what is going on.

Sounds like the virus has not completly cleared, something still acute sounding about it since your ears have fluid. Hopefully this new ENT will find something.

My ears were constantly clogged when this things started and I have to say that acupucnture has done wonders for clearing them up, my ears have actually started to pop after years of not doing so even prior to the LAB, BPPV problem.

Peace in the land of dizzies
Jade :angel:

OH, I glad you don't get the spinning.. it's miserable.
I wouldn't wish it on my worst enemy.

The allergies that cause this for me are classified as Environmental Allergies to man-made fumes and fumes from petrolieum based product.

I only got the spinning the first time (which trerrified me)) and a few times afterwards but not so much.. but that's because now I know to get the heck away from what's causeing it quickly and take a Dramamine.

Kind of hard to describe. First.. my sinus began running.. my nose feels shut and I have to breath through my mouth. I began to feel "vauge" pressure in my ears like my head is filling with cotton or something. I feel the need to open my jaw to make the ears "pop" (like when you go up in an airplane and you feel pressure in your ears) but that doesn't help.. and a wozzy feeling starts..unbalance feeling.. like a drugged feeling.. (My head is filling but its the inner ears swelling that is taking up the extra space). Then it's like things are moving when they are not. For example driving.. you stop yet you are not so sure the car is really firmly stoped. You sense movement that is not physically real. VERY hard to explain.

All that just gets worse and worse and then TILT. Like I said I know enough now to stop the actual TILT.

But I have a memory of that full blown TILT that will never leave. You see I didn't know I had the problem and I actually worked in an environment that caused it and I guess because of the allergy my inner ears were somewhat swollen most days and one day I simply got too over dosed with with the fumes I'm allergic too and went TILT. (I actually changed professions over this)

When the TILT happened I had been in a smelly garage getting my car worked on all day on my day off and then was setting at a table in front of an old ink ribbon typwriter, typing. Suddenly EVERYTHING was moving around me.. like if you were on some carnival ride that keep thorowing you in circles, except its everything else going in the circle and you are in the center. This is impossible to describe. :dizzy: Unbelievable actually. I saw my own hands move around me, the walls, the table.. oh yeah I was screaming..ended up on the floor, which was in motion too! ..there was no "up" and there was no "down".. my sense of balance was competely gone.
Relatives got me to bed. In bed the bed was whirling around and the walls were whirling.. I hung onto the wall and laid there. They placed a cold wet rag on my forehead and eyes, closed eyes and th cold rag helped and I found the nasua in my stomach was better if I did not move my head at all.. so there I was eyes closed under a cold rag and not allowing myself to move my head. Then later relatives took me to the ER. Couldn't drive for two weeks cuz I was very unsure of even walking straight most of that time.

It has never hit so bad again. since I know what's doing it, I smell the scented item or oil, gas, paint and I leave in time. I never pump gas for the car NEVER.

I certainly hope you don't have it, but still seeing an allergist might find your answer if all else doesn't.
Good luck.

Jade

Thanks for your words. I've been thinking that too. But everytime they look in my ears..they say 'nothing there..just fluid'

Snowmelts

my symptoms are

Lightheadedness/spaced out all the time

Marshmallow feet/Trampoline walk - bouncing when I walk

Feeling of falling when I stand still or sit still

The only relief I get is when I'm on an escalator or in an elevator.

Kelly

I have had the dizzies for about 2 years. There are two things that have helped me tremendously. The more salt you consume the more fluid levels get out of whack in your inner ear. Limit your sodium, caffeine and sugar.
The second thing is a thiazide diurectic. This will help regulate the fluid levels.

Flash - have you been diagnosed with menieres?? xxx

BTW I do NOT get these following symptoms.

"Marshmallow feet/Trampoline walk - bouncing when I walk"

"The only relief I get is when I'm on an escalator or in an elevator."


Hope you find an answer.

Well...I'd like to say thank you for everyone's help.

I'm off to the hospital in less than 2 hours and I'm just praying I get some answers.

I will be back online to tell you all how it goes.

Thanks

Kelly

Hi Kelly, how did you get along!

Hey

I'm leaving for the hospital in half an hour. When I get back I will let you know how it went.

Thanks for the concern

Kelly

CrazyLab - I have been told I have Endolemphatic Hydrops. You can have hydrops and not have meneire's but you cannot have meneire's w/o hydrops. At least that is what they tell me. All my troubles started at the dentist office. I was fine until I got a crown put on. Couldn't drive or walk for the longest after that. I will always be suspecious about the dentist visit but everyone says it was just a fluke that a virus attacked my inner ear at that time.

Hey guys!

I went to the hospital...and it wasn't bad at all.

I saw a proper consultant who thinks there is definately something wrong. He says it might be neurological and ear related but he's not sure. I'm going back to have tests. Finally someone is taking my condition seriously.

I've been given some medication to try and help the symptoms in the mean time. Its a drug they use for menieres and pressure in the ear.

I also got told I might have to have tubes put in my ear to drain out the fluid thats causing pressure.

I feel like things have moved foward a little. I just hope the medication starts to help.

Thanks for your support

Kelly

groovyk,

I hope you are finally on the road to recovery!!

Hi Kelly - be a little careful about SERC - the med you have been prescribed - any vestibular meds can hinder compensation - VRT is the answer - and not medication really. BUT, its up to you - if you want to have a bit of relief from the symptoms - take the medication for a little while. But often when people come off the meds, the symptoms come back. Has VRT been suggested to you?

BTW I DO get the trampoline walk and elevator thing and I have an inner ear damage.

FLASH - how interesting. Ive heard EH can start with a virus like labyrinthitis -how odd about the dentist....

xxx

hi

I was given Betahistine for the vertigo. I was told this was only to get relief until they find out the problem. I was told theres a small chance it might not help..but he seemed positive.

Exercises were mentioned but they said that they would have to find out the exact cause of my dizziness. I took it upon myself to do exercies a month or so ago...but still no improvement.

I guess I'll have to wait and see what comes of the tests.

Kelly

Yes he means relief in the short trm... VRT is the relief in the long term. VRT can take months and I mean months so you would not see improvement in 2 mths. Let us know what happens with the tests.

xxx

Thanks for your help!

I just want to get a diagnosis..so I can concentrate on making it better. And if having mt tubes drained helps the dizziness too..I will definately have that done.

Kelly

Hi,

I just wanted to add that my friend took SERC for years and it was as she described an instant cure. When she took them it was great and when she stopped the symptoms came back again. However 20 years on she is off them and symptom free, Like you said it depends on whats causing your dizzys. VRT only works for some one who has a stable vestibular problem and is to all intents useless for a fluctuating condition. I really hope that the SERC helps, I think it can take a short while to take full effect! Good Luck - oh and it also improves blood flow to the inner ear!

Hi - yeh to second ilia - it does depend on your diagnosis. I am talking in terms of uncompensated labyrinthitis - for this condition vestibular meds are not ideally used - instead VRT - even though as ilia said VRT doesnt help for all - vestibular suppressants merely mask labyrinthitis. I too know someone who's had labyrinhthitis 5 yrs and takes serc contantly. If she misses one dose- back the symptoms come. She infact has not compensated much at all.

xxx

Thanks for your input.

As I said..the doctor gave the medication because my quality of life is zero..I can't go out and every day is a constant struggle. This is only a temporary thing. Once I've been diagnosed then I'll know whether I need VRT or permanent medication. Hopefully I'll get a diagnosis within the next month or so. Fingers crossed.

I know that I'm probably gonna have to have my ears drained at some point. :(

Thanks everyone!

Kelly

Yes thats fine if its temporary. I am just saying really that if you take them for a while or at the beginning of labyrinthitis when central compensation should be taking place, you could hinder things.

I also have middle ear issues as a result of labyrinthitis - they have got much much better but I still get occasional fluid buildup. My ENT wanted to put tubes in also.

Kp smiling xxx

Thanks hun :)

Well I've had this dizziness for 5 months now...so I don't know what to think. I have no idea what it could be. The only other medication I was given at the very beginning was Stemetil, which didn't help..So I stopped taking it.

I've had lots of possible causes over the 5 months...but no testing was done to confirm anything. So hopefully now I will get the diagnosis I'm after.

Thanks for your input!

Kelly

Yep I really hope you find answers too. In the meantime keep smiling - you will recover :) Stay positive.

xxx

Thank you for all your support! I'll keep you updated!

Thanks

Kelly