rocking/swaying dizziness for over 2 months

Ears, nose and throat
1

Hey guys, so this is my story:

My name is Brittany. I'm 28 years old and since the beginning of November I have been experiencing this chronic disabling rocking/swaying dizziness (over 2 months). I had gone on vacation with my friends and sister at the end of October to New York. I had also gotten sick (upper respiratory infection) while in New York and when I came back home I felt this rocking sensation. At first I thought it was just my body getting used to being back on land after being on subways for a whole week and the airplane, but it continued. Then I thought it was because of the virus I had and it had affected my inner ear and it would go away soon, but it persisted.  After about a month of this rocking on a boat sensation, I felt the symptoms get worse as I was beginning to recognize that this was not normal and it is something I need to go to the doctor for.  I ended up going to the ER first as I became so incredibly overwhelmed with how uncomfortable I was feeling over this dizziness and went on state disability as I could no longer work with this condition without getting this treated.  It was affecting me not only physically, but mentally. From there, I saw numerous specialists/doctors: Neurologists, ENTs, Audiologist, Physical medicine dr., Chiropractor, Acupuncturist.  It didn't help that when my dad drove me to my first neurologist appt we ended up in a bad car accident which definitely affected my dizziness and my ability to progress from this condition quicker.  The doctors have performed numerous tests to rule out major illnesses including checking my vitals, performing a ct scan, mri (with and without contrast), audiologist testing for pressure/fluid/hearing loss. They have all come back normal which is great!  I mean I am so incredibly relieved because I was for a while thinking I had a tumor or ms or menieres.

However, the doctors have not officially diagnosed me conclusively. I have had them say it may be vestibular neuritis, MAV/vestibular migraine, mal de debarquement syndrome (which I have read online that people said some doctors think mal de barquement syndrome and MAV are related-not positive on that). I have also read about people with BPPV and PPPD having similar symptoms as I and am uncertain what will work as far as treatment to get rid of this awful dizziness. They said it could be vestibular neuritis because I had a virus when I came back from New york. It could be MAV because I have history of having a migraine (also runs in the family) and I had also started birth control during my trip to New york which apparently migraines can be triggered by hormone level changes. It could be mal de debarquement syndrome because I was on the subways and long airplane ride. It would be a combination of these with also BPPV and PPPD.

My Symptoms:

-swaying/rocking sensation (body and mind) when sitting

-Swaying/rocking sensation gets much worse when I stand up, walk around, am in the dark/have eyes closed, am anxious, or very tired

-when I am extremely anxious/crying/didn't sleep at all because of this condition, my rocking can turn very violent and the symptoms are much worse which can at times make it so difficult for me to stand for long periods of time.

-It feels as if I am walking on a trampoline everywhere I go

-the symptoms fluctuate throughout the day

-the more visual stimuli around the easier it is for me to feel more off balance

-my vision feels like its playing catch up

-I feel unbalanced as if I am slightly drunk and sometimes have to hold onto the walls to guide me especially at night

-I feel as if the symptoms disappear when I am in the car (the car movement in a way cancels out the movement I feel in my head/body-not sure if its because I am focused on driving or what)

-it feels as if my body is a buoy rocking in water and my brain is mush/jello sloshing around in my head. It also feels as if my brain is being pulled in different directions because of the rocking sensation-making it more difficult to focus

-I am more forgetful/having a harder time concentrating/lose train of thought easily

-I am much more anxious/breaking down everyday at some point over this as it is extremely difficult to get throughout the day ignoring the symptoms-its exhausting.

My doctors are encouraging me to do vestibular rehab and then look into medications so that is what I plan on doing right now. I have been doing my own vestibular exercises at home regularly morning and night as well as staying active going on walks everyday (they say even though it feels worse walking and moving so much, I need to keep moving so my brain can learn to compensate and not slow down my progress).  I am in the midst of starting vestibular rehab therapy at the doctor next week and I am hoping they will have something to give me that will help this awful debilitating dizziness disappear.  After that I will look into different medications to see if the symptoms will subside.

I am so desperate to cure whatever is causing this horrible rocking dizziness. I have also been trying to do different maneuvers for BPPV just in case if that is part of the problem but have had no success with it going away...If anyone has any advice or has anything similar to what I am experiencing please message me. I appreciate any suggestions on any more tests I could run to get a more definitive diagnosis, any vestibular specialists you guys recommend me seeing through kaiser or out of kaiser, any techniques, supplements, medications. Any helpful information would be greatly appreciated. Thank you and I will pray that you all are soon on your way to full recovery.

-B

2

Hi Brittany,

All I can say is it doesn't sound at all like BPPV (which I've now had three times) so doing BPPV exercises won't help. They won't actually harm you either, but they'll make you feel worse in the immediate aftermath, and you don't really need that right now. The one to avoid in particular is the Epley manoeuvre, which should only be performed by, or under the supervision of, an expert practitioner.

It does sound much more like mal de débarquement to me, though I'm not a doctor. I'm glad to hear that you're under medical supervision, and hope you'll soon be feeling better.

3

I'm like you ENT came a vestibular exercise to do . Stand on the spot with your feet together with your eyes opened looking straight head count to30 then do the same with your eyes closed then repeat it standing on a cushion do this twice a day in the morning and evening it will help you to stop you swaying x

4

I have imblance and vetigo issues, but these all started when i run in to indigestion problem and later found i have gastritis and gallstones and my b12 was very low. Do you have any other health issues like IBS,Gastritis,low functioning gb or gallstones?

5

Hi Brit I have ALL of your symptoms! It’s been a month since I took a flight to Fla. That’s when it all started. I do have negative pressure in one of my ears and doctors are trying steroids but I’m so afraid of staying stuck like this. How are you feeling now???

6

I have all of your symptoms as well.  I am curious to hear how the rehab is going and if you tried any medications???   I think mine started with a virus and I do believe hormones are part of it.  I have been living with this for years and it is very hard as most doctors don't have a real solution.

7

Hi Britnicher,

I have your symptoms, additional i have another thing, tight pressure sensation under the bridge of my nose linking to the top

But different is that i did not take any cruise or flight, it just happen one morning when i woke up, previously i get frequent nightmares maybe of tension in life and i had a knock on my forehead,  but after the knock, it was ok for a few days without any problem, until the 5 day in the morning 

I done ear balance hearing test, nothing wrong with inner ear balance, Chiropractor no use, done MRI now waiting result, for now Neuro doctor gave me a nerve medicine, he suggest i suffer from post trauma something like affect nerve, been 2 weeks but no use, still have the swaying heavy and light boat feeling

But sounds like PPPD for me, but i not sure the doctor here know about it 

I am from Singapore

You may contact me

Anyone else in this forum, can contact me also, i think it would be good for people in the same boat to support each other

Alan 36 Male

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

8

Hi,

Do you have gastric reflux, or feel tight under the bridge of your nose

Alan 

Singapore 

9

Hi,

I have your symptoms and i know how it feels

Another additional is that i feel a tight sensation under the bridge of my nose

I been to ENT hearing test nothing wrong with inner ear balance, Chiropractor no use, done MRI now still wait result but Neuro doctor gave me a nerve medicine, he say probably some post trauma thing

I woke up with this problem one morning, had a knock on head but for 4 days everything was fine, until woke up the 5th day in morning, i used to have nightmare of falling down and anxiety prior to this 

Please reach me at +6593809412 or anyone can reach me, it would be good for people with same problem to support each other

Alan Singapore

10

Forget to add i think maybe is PPPD, but not sure doctor here know this or not

Can reach me at +6593809412 Whatapps would be good 

Alan Singapore

11

i have gastric reflux and i get lof of burping and reflux back to throat.

12

Hi

Not sure if you still check on here . Would be great to know what happened to you . Did it go or are you still suffering 

Ellie

13

britnicher,

I feel your pain. My doctors are always surprised when I tell them that driving is surprisingly not bothersome. In addition to the movement seeming to cancel out what I'm feeling (like you explained), I feel safe because the head rest gives me support, the seat belt holds me on place. Also, I feel stable because I have the car door on one side and the console on the other. I have a lot of pressure and "heavy head" feeling, asking with the rocking sensation. One doc diagnosed me with PPPD, for which treatment includes anti-anxiety meds, vestibular rehab (which aggravated my vertigo), and psychotherapy to manage anxiety. My situation (including now being unemployed) has increased my anxiety. I stopped treatment and now feel even worse than I did a few months ago.

I hope you get answers and treatment. I don't wish my situation one anyone.

14

Yes Alan, i am rints. I do have rocking dizziness, acid reflux and severe tightness on my nasal bridge for many months. Do u have that too ? What can be the cause.

15

Hi Rints,

My humble opinion for myself is that the acid reflux is the anxiety that aggravate it, i used to have mild gastric reflux

Now i managed to tame down the anxiety and the acid reflux is better, i can drink a coffee a day not on an empty stomach now

For the tightness at the nasal bridge, i am not sure, still want to know

Regards

Alan Singapore  

16

I have had all of this since April.

Had sinus prob in Jan, Feb had flu exposure and was on Tamiflu

An MRA picked up bilateral siniusitis. Took Antibiotics and seemed to clear up and now I am back to square 1.

Every test including lyme and thyroid seems normal. Dr. Suggested Vestibular theraphy as well, if does not clear up.

Is there a light at end of tunnel?? Super frustrated because I refuse to believe it came out of no where. 

17

Hi,

Could I just to entertain the possibility that your symptoms could be due to a little known disorder called "MdDS", or Mal de Debarquement Syndrome. You get it usually after a long plane flight or ocean cruise, as your body adpats to it, but doesn't adapt back. It's not life-threatening, but it is also hard to treat and diagnose. Indeed, many tests are normal in patients with MdDs. There are experimental treatments however, that work quite well (50%+ success rate), and certain medications also help you cope with the symptoms. Usually, the symptoms go away after a while, but they may be annoying and stick around. The defining "factor" of MdDS, seen as though the tests are normal, is that you feel fine while in passive motion, such as in a car or plane. This is something that you experience. 

I really do hope there is a cure for this, because it has affected many people's lives. However, we have never been closer, and I wouldn't feel so optimistic even 5 years ago, but the research on this strengthens.

-lasplaner

18

I suffered something similar, which would occur most times after flying. I attribute the condition to a cascading number of events leading to vestibular migraine.

1. I have a positional form of vertigo, triggered by certain neck positions.

2. Busy environments narrow areas and bad neck increase the symptoms.

Over the years my brain has become better at dealing with the problem. However, after landing, either my brain becomes a lot more sensitive to the condition, or cannot deal with it as effectively. This is especially the case if I cannot equalise properly, and pressure builds up on final decent.

Once I have landed, my vestibular system is very stimulated, and further stimulation then cascades into a vestibular migraine. This lasts weeks and weeks, and my symptoms very close to yours.

Firstly, if you feel the symptoms increasing immediately look at the horizon.

If you feel a wave of extreme lethargy, lie down until it passes. 

If the situation is worse when you close your eyes, (1 less reference), have a fan next to your bed, aim it at your head and train your brain to use the 'wind' as a reference.

Stress makes the situation a lot worse!

Avoid caffeine, and too much alcohol.

If this is the case, prior to flying:-

1.  Be well hydrated

2.  No Caffeine

3.  Clear your airways

After landing:-

1. No caffeine for 48 hours

2. Avoid closed in spaces eg. shower cubicle

3. Avoid any form of significant vestibular input

In my case, this was still not enough. I have had grommets inserted, and are back to healthy, and happy flying. I still have the under-lying condition, but by removing pressure from the equation stops the cascading of events. Good luck!

19

“1. I have a positional form of vertigo, triggered by certain neck positions”

Does that mean you have BPPV...crystals in your inner ear are moving around due to moving your neck in certain positions? Or is it unrelated to BPPV? Is it just part of the vestibular migraine that you have?

20

Wow!  This sounds so similar to me, it is crazy. It actually adds comfort to know that others have this as well.  Sometimes you think it is all in your mind.... but it is not.

This is very insightful information.  I so appreciate your help

Thank you!