Hi,
I have been suffering for almost 2 years now and it is truly debilitating.
I have dizziness (not spinning dizzy, off balance dizzy) I get very bad attacks, but what i struggle with the most is the aftermath.
I have questions for all you fellow sufferers:
What are your attacks like
What are you signs that a attack is coming
How bad/ long does the aftermath "hangover" last for.
Have you found anything (not talking about medication) that helps ease the aftermath.
Looking forward reading your responses, i truly think this condition should be more known by people and doctors.
It may be vestibular migraines. I am also spaced out or off balance.
Hi. I don't usually get symptoms of an attack happening it just happens. The aftermath is horrible and can last a few days to couple wks.! I got a rehabilitation programme from the audiology department at hospital which is simple head excersie which helped a lot. Could be worth seeing your doctor about!
I sympathize with you. These dizzy times are horrible. They usually come on without warning but once they do I am positive that anxiety kicks in and makes the symptoms even more intolerable. It is like a vicious cycle. Good luck
Hello, Emmy although I have bad vartigo from Lyme disease I did have something else before back when I was 14 and it had something to do with low blood count basically when I stood up I got dizzy and everything went dark for a few seconds the first time I experienced it I was in shock however later I had a blood test done and it revealed that my blood levels were very low not sure if white cells, red cells or blood in general as I was 14 however it got better but it never went away later on (5 years later) I learned that it was blood pressure a year after that I learned that the condition was called Hypotension. I suggest you look into your blood pressure as it can be the cause of your dizziness it's probably a common cause as well.
Hi Emmy
Your right this is an awful disorder and with all the people that seem to have it, there should be answers.
When I get hit with a bad day or attack, I ususally don't have any real warning, I will get tired and more irratable (if thats possible) and get a fast kind of dizzy feeling in my head that lasts about 15-30 minutes then the headache will start and then it usually last 2-3 days. The residule for those days is a floating kind of feeling and some bobbing up and down esp when sitting.
I don't know if you take meds, but I don't not on a daily basis, I've found all I can do is rest and stay as calm as i can and wait it out, at night I usually put ice gel packs on my neck to help the neck and head aches.
I know that when the attackes hit, I get upset which makes it much worse, so I'm trying to stay calm now and hoping it won't last so long.
I seem to get bad attacks about every couple of weeks, but have daily sensations of floating, bobbing, leaning not so much in my head but through my entire body.
I have MAV and slight MDDS so my ent tells me, and I do VRT every day a couple of times a day and it seems to help. I hope you feel better and can find some relief.
Hi Emmy, I am headed for 5 years constant off balance dizzy (except when lying quiet in bed in dark). I have never found medication to work, I drink more ginger. My left canals are kaput, I do not get attacks, its permanent, we are all different.
I have to watch for hypotension (drink more water and salt) and fainting. all the best
I have a constant spaced out/ drunk feeling - is this something you're familiar with ?
Yup all the time. That is how I describe it to people. I feel a little drunk. Go to Facebook and find groups there for us. It is filled with people like us.
how is your posture? I ask because many of us have bad forward head posture which is bad for our neck muscles. Look up SCM muslce issues and you will see how you can make your neck better, that is if your neck is also an issue.
Hi, what's is MDDS?
I honestly feel there isn't enough support or knowledge.iut there for people.
I am about to start a new batch of meds, trail and error 
I will try ice packs next time it happens.
Do you get issues with your speech? Also how do you cope with working.
I am.going to reduce my salt intake, just taking baby steps at the moment as I have out on a good four stone since getting Ill. Originally it was the illness, morning able to exercise and sugar cravings but now it is just comfert eating. Trying to put that right as well as reducing salt to see if it helps.
Thank goodness I do not have issues with fainting, stay safe.
Emily
I often wonder if that could be the problem because I think my posture is terrible. I am always slumped even when I sleep I feel like me head is tucked in my shoulders
Hey DB, Are you a mets fan becuase you live in NY?
Just to clarify,
I am taking medicine but it is trail and error and about to start taking some new stuff so cross fingers.
I have kept a diary of my recent attacks and found the following.
Warning sign - I have noticed that I start to stutter and can't get my words out well, it's only mild but enough for me to notice. This normally indicates something is going to happen. Also the big indicator is the complete inability to walk in a straight line. Alot.like gravity is pillinge.to the left.or right no matter what I do.
-Attack - any movement makes. me.feel ill
That's how it all started for me for a few months I felt this way then unfortunately it got alot worse. I felt like this all the time but with attacks when the feeling dramaticly increased.
I do work with someone who has the same condition, he has never has a attack but always feels spaced out and dizzy. He has put it down to stress/anxiety as his trigger
I have been thinking it could be neck related / I'm having vng testing ect with an ENT next week. If I turn my head a certain way my neck 'snaps' sort of thing - it feels to travel up the back of my head sometimes.
The rehab exercises helped me alot, especially with day to day dizziness. I had a major issue with the blinds at work and patterns on the carpet. I can now deal with them.
I have come along way since it first began...easy to forget when I get so ill.
I am. glad you said the after effect can last a few weeks.for you to. Do u get sugar cravings during this time at all?
Have you been diagnosed ?
Hi
MDDS is Mal de debarkment syndrome, it happens usually after a cruise but can happen spontaneously. I think the reason my ENT thinks this is because of the rocking/swaying sensation i had when this all started. it went on for about 11 months feeling like that, but the VRT has helped. Now I have the floating and bobbing sensations, The entire mess is just awful.
The gel ice packs do help if you have neck pain and upper shoulder aches. Also I use aspercreme on the neck and shoulders, it relieves the pain and helps the headaches.