rocking/swaying dizziness for over 2 months
Posted , 27 users are following.
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
0 likes, 37 replies
Guest britnicher
Posted
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.
lasplaner britnicher
Posted
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
mark51661 lasplaner
Posted
Originally, it was suspected that I suffered from this. Later discovered to be vestibular migraine. This is a great reference site for the condition: https://www.mdds.org.uk/
mark51661 britnicher
Posted
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!
Mmbb10 mark51661
Posted
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?
nancychadd mark51661
Posted
This is very insightful information. I so appreciate your help
Thank you!
mark51661 Mmbb10
Posted
Over the years my brain has become better at dealing with the condition. However, when I fly (and experience bad pressure on decent) it is as if my brain becomes many times more sensitive to the BPPV.
Any further significant vestibular input at this time, results in a vestibular migraine. Eg. windy road, small space, busy environment. The result of this is a 1/10 headache, but significant rocking vertigo for weeks, and other symptoms very close to Mdds.
The key to the issue was to stop the cascading of events. Grommets fixed that problem.
I wonder how many people have been on a boat trip, flown home, and experienced my condition - but been diagnosed with Mdds?
Mmbb10 mark51661
Posted
It worries me that the air pressure on the plane can somehow affect the crystals in the ear causing problems after landing. Unless your situation seems to be more severe than usual..since you needed to get grommets put in.
I haven’t traveled or been on a plane in 2yrs because doing research on vertigo terrified me to even try.
But the last time I had vertigo was February 2017..so it’s been awhile I guess.
I honestly think I just need to get over the fear and fly on a plane eventually and see how i react to it..and just deal with the consequences. I told my boyfriend that maybe we can try to vacation again and I can try to fly sometime next year..it will just be 1.5hr flight..just to see how I can handle it.
mark51661 Mmbb10
Posted
The air pressure is not affecting the crystals, but (somehow) over stimulating my vestibular system, which increases my brains sensitivity to the BPPV
The length of flight has NO affect on my condition. The more pressure in decent, the worse my symptoms shortly after landing.
If I remove pressure on decent from the equation, I have no / very mild issues.
Mmbb10 mark51661
Posted
And this was all in December 2016.
But recently, I noticed that sometimes when I’m going down in an elevator and get off it, it still feels like my body is still going down but that feeling only lasts for a few seconds and it goes away. So I don’t know what that means..If I should be worried about that or not.
mark51661 britnicher
Posted
The feeling in the lift is entirely natural. Even for those who have never suffered vertigo.
Get on the plane, and enjoy your life!
Dana38 britnicher
Posted
Hi all!
So glad I've found this forum.
I have been dealing with this off and on for the past five years.
Taking a shower is difficult. Working on my laptop feels like the is a force that is trying to push me forward. I have the feeling I need to support my head when in the cinema or driving my car. And I do get lots of dizzy feelings like living on a boat. Sometimes when I lie in bed I get a dropping sensation.
Driving my car or being focused on a chore around the house I don't feel it that much anymore.
Going to the toilet in a restaurant or on a plane (especially on a plane) is troublesome. I feel as I am leaning forward. Lights in some shops trigger it or a pattern on a carpet in stores. Somedays I feel like I have been hit by a truck with lots of brainfog.
I get lots of headaches on one side of my head, and sometimes a stiff neck.
Funny thing is I had a really STIFF neck the other week and my vertigo was gone?!?!?
For two days ... hahahahaha
I am an anxious person and am a hypochondriac. And I suffer from tinnitus also.
Just the other day I came across this article about PPPD and this was a real eye-opener for me.
Finally something that sounded exactly what I am experiencing.
ana85762 britnicher
Posted
I have some of your symptoms I know it's horrible my memory is gone out the window ,it all started after taking antibiotics ,did your diziness start after the antibiotics ?? also have you been tested for lyme ?? I don't get why ppl are having so many similar issues lately ...good luck hope you feel better
Ouch1234 britnicher
Posted
Hi
I was just wondering if you were any better or had founds something that helps you. My symptoms are very similar to yours and the Dr can't find anything wrong with me.
ana85762 britnicher
Posted
Were you on antibiotics or ppis ??