Could someone please help

Ears, nose and throat
1

Hi

i've been reading posts here, and I'm a little concerned.  Most you the posts are about people having this dizziness thing and not getting well. This is scaring me a lot.  I was just diagnosed with Vestibular dysfunction, whatever that means.  I had a VNG test and when i got to the air in the ears part they started on the right one and the dizziness was so bad I could not finish it.  

I have had this dizziness since last July 2015, I was doing some exercises and about 2 hours afterward, I had this horrid dizziness and have had it since.  Could someone please help me with the symptoms and possibly tell me what is happening.  My dizziness feels like its going thru my body as well as my head, it feels like im rocking and  swaying, it happens when i'm sitting, standing, walking, laying down, when I walk i feel like i'm walking on marsh mello's and moving up and down, when i lean forward it get bad, when i shower its really bad, sometime i feel like i'm being pushed when i walk, i just recently started to get dizziness that comes with neck pain in the spine and headaches, i have nausea alot so I don't eat so well, i"ve lost about 3 pounds in the last month, I have anxiety and panic attacks, I don't sleep past 5 a.m, i'm constantly worried about this.  

I am suppose to start therapy with the ENT in march, and I was really hoping it would help but from what i'm reading it doesn't.  I haven't tried any meds accept for xanax which sometimes helps and the eNT said to take it when I need to.  I am also hypothyroid and postmenopausal.  

I work full time in an office, I can drive okay, I manage to go to stores but have alot of anxiety about it, because i'm araid something may happen.  I have been seeing a atlast orthogenal chiropractor who is adjusting my neck, but not popping it, its done by a machine that sends vibrations into the neck.  I have seen my GP who says vertigo and anxiety, my neuro did trigger point injections for the neck pain but that messed up my thyroid even more, and he says i have anxiety also.  

Could anyone please tell me what this sounds like.  I know its in the ear because teh air being put in made it so much worse when it was done, thats the only thing keeping me going is that its not a disease process, like heart disease or something.

Any help would be appreciated.

Thank you so much

2

Hi Patty

All the symptons you describe sounds like what i had...vestibular neuritis. Its a virus that attacks the inner ear and the balance nerve. It causes anxiety because you feel as though you've lost control of your own body.

Ive had it twice...it does go away but it takes time. Everyone is different.

I took anti anxiety meds and did vestibular rehab.

Debbie

3

Hi Patty. I have had the same systoms the first time I had it, it lasted 6 months 4 months of which I couldn't work. I recovered by doing the vestibular exercises. I suffered from anxiety as well I think as Debbie says it's common to feel anxious as she says you feel u are no longer in control and at times thoughts are foggy. I have recently had it return after not having it for twelve months. It's probably a virus in the inner ear. I'm not sure about air in the ear no one has ever spoken about his so perhaps your cause is different.

Just make sure you ask lots of questions you want answers to and write them down so you don't forget. Don't be disheartened by feeling no one gets better. Some people do suffer with this for months and years but many recover very quickly after just a few weeks or a month or so and never post on here. I know several people who have suffered with your symtoms for a much shorter period of time.

Take comfort from the support on this forum as it does help to feel u are not alone and that others are feeling like you for however long or brief. I hope you get some answers and help and soon make a recovery. For me the exercises really help but it was a slow process it didn't happen over night. Take care x

4

So I've had what is idiopathic Mal de Debarquement but I wasn't in a boat. I've gotten better little by little each month since July 2014; however it's still there. But I can live life and enjoy life. I do take Effexor (lowest dose) and 20 mg Amitriptyline at night. Both of these have def helped. Exercise is also very beneficial. I can't diagnose you of course but I would encourage you to exercise and eat well, plus find either a med or anything that will take away your anxiety. I use Klonopin or Valium when I travel. Again I live my life and while I'm sometimes annoyed I still have this, it has not stopped me from having fun and enjoying life. Please know you will get better. I do believe in time mine will go away as its at a very low level now.

5

Sorry your having troubles. Hope you get better soon. Can I ask, what is a VNG test and which hospitals department conducted it? My six year old son has had lots of tests with no formal diagnosis. But I don't recall him having air in his ears? Tests to do with ears has only ever been hearing test and shutting his eyes whist standing to see if he's unbalanced. He's due to return to see consultant soon and would like to know more so I can ask it this test would help diagnose him. Thanks Debs.

6

Videonystagmography (VNG)

VNG testing is considered the new standard for testing inner ear functions over Electronystagmography (ENG), because VNG measures the movements of the eyes directly through infrared cameras, instead of measuring the mastoid muscles around the eyes with electrodes like the previous ENG version. VNG testing is more accurate, more consistent, and more comfortable for the patient. By having the patient more comfortable and relaxed, consistent and accurate test results are more easily achieved.VNG testing is used to determine if a vestibular (inner ear) disease may be causing a balance or dizziness problem, and is one of the only tests available today that can decipher between a unilateral (one ear) and bilateral (both ears) vestibular loss. VNG testing is a series of tests designed to document a persons ability to follow visual objects with their eyes and how well the eyes respond to information from the vestibular system.

This test also addresses the functionality of each ear and if a vestibular deficit may be the cause of a dizziness or balance problem. To monitor the movements of the eyes, infrared goggles are placed around the eyes to record eye movements during testing. VNG testing is non-invasive, and only minor discomfort is felt by the patients during testing as a result of wearing goggles.

There are 4 main parts to a VNG test:

1. Occular Mobility 

You will be asked to have your eyes follow objects that jump from place to place, stand still, or move smoothly. The technician will be looking for any slowness or inaccuracies in your ability to follow visual targets. This may indicate a central or neurological problem, or possibly a problem in the pathway connecting the vestibular system to the brain.

2. Optokinetic Nystagmus

You will be asked to view a large, continuously moving visual image to see if your eyes can appropriately track these movements. Like the occular mobility tests, the technician will be looking for any slowness or inaccuracies in your ability to follow visual targets. This may indicate a central or neurological problem, or possibly a problem in the pathway connecting the vestibular system to the brain.

3. Positional Nystagmus 

The technician will move your head and body into various positions to make sure that there are no inappropriate eye movements (nystagmus), when your head is in different positions. This test is looking at your inner ear system and the condition of the endolymph fluid in your semi-circular canals. The technician is verifying that small calcium carbonate particles called otoconia are not suspended in the fluid and causing a disturbance to the flow of the fluid.

4. Caloric Testing 

The technician will stimulate both of your inner ears (one at a time) with warm and then cold air. They will be monitoring the movements of your eyes using goggles to make sure that both of your ears can sense this stimulation. This test will confirm that your vestibular system for each ear is working and responding to stimulation. This test in the only test available that can decipher between a unilateral and bilateral loss.

Not sure if this is administered to someone as young as 6, though.  But, as you can see it is the standard for diagnosis of inner ear deficiency.

7

Thanks for this really informative information. I will check with consultant if this is available to my son. The part about head movement ticks a box for me as I believe he has these dizzy spells when his head is down, e.g at school desk working, eating or playing with toys. Even walking you put your head down. The only consistent thing when he has dizziness is his head is tilted down. I will definitely be pushing for this test. Thanks again for your reply.

8

Patty, it is scary isn't it and I share your concerns. I had my first bout nearly three years ago. I awoke, felt dizzy and then was so violently ill I stayed in the loo for over 5 hours until there was absolutely nothing left to bring up, but that didn't stop my stomach from trying for two more hours. I couldn't walk and had to crawl to the front door to open all locks and rang for an ambulance. Luckily we have an excellent service in Australia (my 23 year old son and his girlfriend are both paramedics) and the local ambulance got to me within minutes. Having a year of emergency medical training myself (a dangerous thing having a little knowledge), I thought the worst and imagined that I had had a stroke. The lovely female in the response team quickly told me that I was the third patient that week that had presented with identical symptoms and that it was a vertigo related issue. Half an hour drive to Geelong Hospital and I was quickly entered into the ER and given a needle for motion sickness as they too believed that it was an inner ear vertigo issue, no doubt reported to them by my Ambo friends. Three days later I was released into the wild again with the prognosis that all would be well within a fortnight and that I had been suffering from Vestibulat neuritis (VN), latin for inflamation of the inner ear nervous system. Walking was exactly as you described Patty and in fact for a week I couldn't walk unaided, but the symptoms abated and lo and behold two weeks later I felt cured, Thanks be to God!. Almost two years to the day later, I was having a morning coffee and suddenly thought OMG, I'm going to be sick. Got home just in time and spent a couple of hours yet again in the loo and you guessed it, the bloody VN was back and rampant. No ambulance this time as I knew what it was and I stayed in bed for the next three days to enable my bedroom ceiling to slow itself down enough for me to make something to eat as I had had nothing, nor felt the need for any sustenance over that period. The vomitting stops after a few hours on both occasions and does not return, just the woozy feeling and occasional lurches to the right when walking; at times embarrassing. That was last July and still exists with little hope now of abating to the cured stage as I had enjoyed before. I handle this by walking for several hours each day to keep me fit in MIND and body for you see the anxiety comes from the worry of not knowing, not from the disease in my opinion as I don't worry about it any more and therefore the anxiety disappeared; message to you, try not to worry. So, I too look to our many friends who are unfortunate to share our symptoms in the hope that one day, there will be a cure, I'm still waiting and your letter is so very typical, I am saddened to say. Prognosis? Well from my studies it requires a retraining of the brain that receives the signals from the inner ear. It would appear that the illness may be virus related and virus's have the abilty to wreak havoc with our immune systems and in my case just wiped out most of the neuro-connections to the brain related to balance etc, especially in low lighting situations. To retrain the brain I walk over ten kilometres daily and try to look in the middle distance ahead which sometimes means that I trip over things in my immediate path if I don't see them; once again embarrassing. I can promise you though that if you do this on the lawns of your neighborhood or as I do, on the sand of the beaches, then you won't hurt yourself and things will improve. I found the alternative was the exercises that Physio's recommend but this just brought on the nausia, so I stopped and stuck to my walking. It has now been 8 months since my last attack and I don't kid myself that it is ever going to go away, I'm sorry Patty, this is me now not necessarily your case I stress, so management rather than cure is my immediate and daily wish and most people don't know I have the illness. Avoid walking in the dark at all costs as the limited info that is being sent to your brain is adversely affected and you won't know if you are up or down but please, don't be any more anxious than you have to be, work hard at rehabilitation knowing that you will improve and I pray, that you will get over it. Sorry this has been so long, but hopefully it helps. Fond regards, Jonathon

9

Hi Jon thank you for sharing your experiences and feelings. It means a lot. Glad to hear you are facing it so positively. I just wanted to thank you and wish you well. Claire

10

Wow what a clear and explanation thank you so much for sharing

11

Hi Patty - your symptoms are also identical to mine and I have migraine associated vertigo or MAV.  I am light and sound sensitive.  My ears feel full from time to time, ears hurt, cheek and jaw can hurt.  Neck hurts and goes stiff and creaky and cracky.  Head feels pressurised, I get the traditional migraine from time to time which is the splitting headache, pain in eye, pain in back of head.  Scalp tender.  My eyes also are jumpy in stores.  They used to be jumpy when I was driving but thats gone now.  The dizziness is there more of the time.  Its not spinning, its more like youre wearing he wrong glasses.  I used to have the marshmallow effect wen walking but thats gone too now.  Ive been pushing myself to keep going,  I found going to bed made me worse unless I really have to.  Very very tired but thats improved too.  Def got brain fog.  Thought I had dementia coming on but neuro said this is normal.  Now I cant remember if I said ive had 9 diff meds.  None would get rid of the dizziness.  Now onto botox.  Ive got two neuros, one regular who diagnosed me andthe other who is headache /migraine specialist.  I have had migraines all my life but this dizziness just added itself to them and hasnt stopped.  Mine is something wrong with the brain stem thats switched on and wont switch off.

12

Hi

Thanks for replying. You said you have the same symptoms, your dizziness is it most if the day? Does it feel like your swaying? When you have the headache and neck pain do you have dizziness at the same time? Mine starts with bad dizziness then the head and neck hurt. How long does the head pain last? I have it all day when it starts and nothing stops it, also the swaying feeling is there. Do you have dizziness when sitting, standing and walking? I feel frustrated with it and anxious. I always think the worst like maybe it's something worse, guess that's the health anxiety working. How odten do you get the headaches? I have it every week for at least 2 days. I'm also menopausal I don't know if that makes it worse, but the ent says it vestibular dysfunction, I'm not sure what that means. He mentioned MAV at the beginning the said something else. What are you doing about it? Thanks for your help.

13

Hi - yes at the moment my dizziness is most of the day but it had improved to just evening then I got a virus/cold thing for past 8 weeks which has made it worse.  Either that or my botox has worn off (which it has).  Yes I still have the dizziness with the headache and neck pain.  Head pain lasts about 2-3 hours provided I have taken an ibuprofen.  It I dont it would last much much longer.  Yes I have dizziness when standing and walking.  If youve had an MRI scan it wont be anything worse.  Go on facebook to MAV support.  We are all dizzy on there all the time.  Its a lot more common than you think.  I get the headaches with triggers really, lying in bed too late, going on a diet, using the PC or iphone too much.  Going into big stores, fluorescent lighting.  Ive had a hyst 10 years ago, but Ive had hot flushes since then till now.  But then again a lot of people have hot flushes with MAV.  Vestibular dysfunction is problem with your ears/eyes etc., which I think is just a loose term to cover a lot of things.  Ive tried about 9 different meds.  None of them got rid of the dizziness which is my main problem.  I can deal with the headaches.  This started just one day from nothing and is quite typical as you will see from the MAV support group on facebook.  Its a really good website and loads of us will answer your questions.