Constant dizziness or episodic?

Specific Illnesses & Conditions VM/MAV
21

Good question guys. I guess mine is episodically constant, if that makes sense? Also, what defines ‘constant?’ 24/7? 50% or more of the day, etc?..
I can make it days, sometimes weeks with nothing but “dizzy spells” that last seconds or minutes. Feels like quick spins, tilting feelings, a wave coming up under my feet, or that freaky elevator sensation. My constant modes usually take up 50-80% of the day, never 24/7 (knock on wood), and the feelings themselves are basically the same as what i just described. Some days I feel like i am on a constantly revolving carousel however.

As others have pointed out, the symptom overlap of these vestibular disorders really blows my mind! Probably why so many of us take so long to get an accurate diagnosis. Many see similarities between Meniere’s and MAV, but I see more overlap between MAV and MDDS. I guess exact labels don’t matter, but getting the right treatment sure as heck does. :roll:

22

Now that you mention it, alternaace, I recall that when I was having daily symptoms they were NOT 24/7 type sypmptoms either. In addition to non-daily dizzy spells (which I would mostly rate as moderate or severe, and which would last a few minutes), I had periods during every day of what I called wobbliness (most people here call it rockiness). I don’t recall ever waking up wobbly - don’t think I ever feared that I’d fall over getting out of bed in the morning or during the night. It was something that was similar to what you describe: often around 50-80% of my day. When I read your “guesstimation” of that range, it struck me that it was just about right for me, too!!

23

Mine has been 24/7 constant, for 3 3/4 years now, punctuated by what I call ‘attempted mini spin attacks’ where a violent vertigo spin feels imminent (these have me instantly reaching out to hold onto something and usually induce an instant panicky feeling, but last only a few seconds or so in most cases).

The 24/7 dizziness was broken by Pizotifen in the early days, and there are signs of it being greatly reduced now by the use of Gabapentin (Neurontin). The ‘mini spin attacks’ have thankfully gone, for the most part (along with the mashmallow, moving floor feelings).
Tony.

24

I have never gotten vertigo, but have been dizzy since January when this all started for me. Actually I wouldn’t even call it dizzy, it’s just a weird feeling, kinda like you feel when you are drunk. Just how you explained it. If I close my eyes I feel normal, but I obviously can’t live life with my eyes shut :lol: I was diagnosed with MAV in March. At first my ENT thought it was Meniere’s, but I decided to go to Boston to see Dr. Rauch and he said its most likely MAV because the “dizzy” off feeling never went away. So ya it is possible.

25

I find it interesting how many different ways people seem to have the dizziness manifest itself. For example, you are saying that you feel fine when you close your eyes. Others say they are fine when they lie down. Yet my symptoms are the MOST noticable when I lie down with my eyes closed!!

I wonder if it has something to do with what part of the brain is being affected by the migraine? Maybe different people are having different parts of their vestibular system affected? I guess maybe this is why the whole problem isn’t fully understood even by neurologists.

I also wonder if that is why so many people respond so much differently to medication. Everyone’s symptoms seem to manifest slightly differently.

26

Good point Jamie. This is yet another reason these vestibular disorders are so difficult to recognize and treat. Everybody’s brains and inner ears are affected so differently from these problems, so treatment truly can’t be anything more than trial and error.
There also seems to be some controversy in regards to constant vertigo and the MAV diagnosis. (i posted something similar under the topic TMS therapy for MDDS btw). Some of the top oto-neurologists, like Dr Cha, suspect MAV is episodic rotational vertigo, while constant disequilibrium means you have MDDS, even if you didn’t go on a journey. Then again, I think I’ve read about some folks who have had constant rotational vertigo for a LONG time; doubt that’s MDDS! Confusing…

27

But what if you have episodic disequlibrium, what is that? I essentially have episodic, triggerable, Mdds that is directly related to migraine. So call it what you will, it is migraine associated disqeulibrium of some sort!

I do agree with you that it seems plausable that some of the people that have the 24/7 symptoms for years might have something beyond MAV going on.

28

Yeah even my dizziness has never been 24/7 except for the time i took Remeron for a month. Horrible drug for me, for many reasons. No matter who the doctor or expert is, I can’t see how they can strictly say that MAV has to be rotational and episodic, no exceptions. If your off balance feelings are episodic, then i don’t see why it couldn’t be MAV.

29

Just from all the reading I’ve done online, books, first hand experience here, everyone seems different. Some get true vertigo, some dizziness, some constant disequilibrium, some not.

How do you get a diagnosis of MDDS? How is it different from MAV? The symptoms of that fit me like a glove, but they also overlap MAV symptoms, so I don’t know how you could get a diagnosis of that if you have migraines and MAV? It’s confusing to me. it fits my daughter too; she got hit with her disequilibrium, vertigo, and migraine after a boat trip a few years back. She was horribly ill for 6 months after getting off the boat. Her neuro says it’s definitely migraine. She responds very well to Periactin and Maxalt.

I recently did an experiment and got in my pool. I floated and moved around and felt okay until I got out. Immediate sea sickness/sea legs/dizzy/vertigo/nausea etc. I have also been feeling better moving in the car or even getting up and moving when I feel dizzy. It’s when I stop and my brain tells me I’m still moving is my issue. Anything involving repetitive motion is a big issue for me. I’m okay doing it but when I stop, my body thinks it’s still moving and I get horrible vertigo. Worst example was trying to use a treadmill for a few minutes a few years ago. NEVER AGAIN! Does anyone have anything like that?

30

@Shelley, YES! I have all of those problems! I want to say the biggest red flag for MDDS is that you feel better in motion. I have both MAV and MDDS and they somehow can overlap in my opinion.

@Jamie, I feel worse laying down with my eyes closed too, like I’m in plane turbulence. I feel best moving and in the car.

My rockiness is 24/7 constant. I’m thankful I have not had a true MAV attack on top of this mess.

31

— Begin quote from “ilovesalem”

@Shelley, YES! I have all of those problems! I want to say the biggest red flag for MDDS is that you feel better in motion. I have both MAV and MDDS and they somehow can overlap in my opinion.

@Jamie, I feel worse laying down with my eyes closed too, like I’m in plane turbulence. I feel best moving and in the car.

My rockiness is 24/7 constant. I’m thankful I have not had a true MAV attack on top of this mess.

— End quote

ilovesalem - that is really interesting as I have always believed that I have a mixture of mdds and mav… there has been 2-3 occasions in the past where I have been on a 6 hour long ferry journey and ive had the rocking sensation lasting weeks which is most certainly MDDS.

However this time it was not triggered by a ferry or plane journey.

The strange thing about mine and your symptoms is, i feel fine when i am lying down, in a dark room or on the sofa watching TV. I also feel fine when in motion, on a bike, in a car, on the train etc… but I feel absolutely terrible when standing up, or walking. How odd is that !?

32

I have positional vertigo. I get it every time I move and especially when I’m lying down. I can’t function in the dark. As soon as it’s dim or dark lighting, I spin. Same when I close my eyes. I’m a lot worse when I’m just sitting or lying still, I can feel the movement but it’s not bad every day like that, it varies a lot with my monthly cycle, the weather, what I eat (lot of different triggers). If I go out and have to ride in the car, use the pool, or something like that, I’m usually still “moving” and very queasy for hours afterwards.

33

— Begin quote from “ilovesalem”

I want to say the biggest red flag for MDDS is that you feel better in motion.

— End quote

I’m not sure that is true. When I am symptomatic, my symptoms are very much like MDDS and I absolutely feel better in motion. For example, if I’m in a car, my symptoms are almost unnoticable. But I clearly don’t have MDDS because my symptoms are easily and regularly triggerable and episodic. Before the medication I could easily and consistently trigger episodes (and could also nearly 100% avoid them if I very carefully managed my exposure to artificial light–i.e. constant wearing of sunglasses and no computer use, no flourescent lighting etc. etc.)

My understanding is that MDDS can’t be managed that way. I believe the fact that I could essentially bring on or avoid MDDS symptoms at will indicates it wasn’t MDDS at all. So it seems to me that the only logical explanation is that the MAV symptoms can essentially mimmick MDDS in some people.

34

— Begin quote from “JamieH”

— Begin quote from “ilovesalem”

I want to say the biggest red flag for MDDS is that you feel better in motion.

— End quote

I’m not sure that is true. When I am symptomatic, my symptoms are very much like MDDS and I absolutely feel better in motion. For example, if I’m in a car, my symptoms are almost unnoticable. But I clearly don’t have MDDS because my symptoms are easily and regularly triggerable and episodic. Before the medication I could easily and consistently trigger episodes (and could also nearly 100% avoid them if I very carefully managed my exposure to artificial light–i.e. constant wearing of sunglasses and no computer use, no flourescent lighting etc. etc.)

My understanding is that MDDS can’t be managed that way. I believe the fact that I could essentially bring on or avoid MDDS symptoms at will indicates it wasn’t MDDS at all. So it seems to me that the only logical explanation is that the MAV symptoms can essentially mimmick MDDS in some people.

— End quote

Hi Jamie,

That is not the case for me. I am not able to trigger episodes. I am constantly unbalanced with feelings of disequilibrium no matter what the situation. dark or light. I have even had a 2 week break with all of this, where I was not submitted to artificial lights or computer use and nothing changed.

Does that mean in my case it might actually be MDDS?

35

I am absolutely not an expert at MDDS so I don’t know exactly what makes a case of MDDS. I just know that in general the fact that mine WAS triggerable and episodic ruled it out. If I actually had MDDS I wouldn’t be able to get it to come and go at will like that.

The fact that your symptoms are not that way doesn’t mean that you DO have MDDS, but it certainly might mean that it shouldn’t be ruled out and you should at least look into it. However I believe MDDS tends to get worse when people are lying down, not better, so that would seem to rule you out.

mddsfoundation.org/mdds_comp … ptoms.html

36

Mine is there all the time but absolutely gets worse with triggers and varies like clockwork to my monthly cycle. I went out yesterday feeling sick and the car ride made me worse not better. I get times when I’m in the car where I feel like I’m hurtling through space 200 miles an hour while the car is moving and then when it stops I still feel that way and if I try to get out and walk, everything bounces, spins, and my body goes flying forward. It was a Valium kind of day yesterday.

I can see what you mean now about the symptoms overlapping, but with MdDS being there all the time, MAV could also be there all the time but with some people like me, if you have things that trigger it, it can get worse and then get a little better, wax and wane if that makes sense. It says also that MdDS symptoms can vary in severity but it’s not known why, maybe different stress levels.

Examples of things that make mine worse are fluorescent lights, computer, certain migraine trigger foods, being overheated, not getting enough sleep, movement like being in the car or a busy store etc.

It says that the DX is made after all other reasons for it are eliminated, so when my doctor’s found out I did have migraine/MAV, that’s probably why they never even considered this.

Here is some info that I copied and pasted from MdDs foundation site. I think the symptoms NOT typically seen is helping in comparing because I have all of them.

— Begin quote from ____

Symptoms most frequently reported are:

        Persistent sensation of motion such as:

            Rocking

            Bobbing

            Swaying

            Tumbling

        Imbalance

        Ataxia - a staggering gait

        Fatigue

        Difficulty concentrating

        Disequilibrium

             Symptoms less frequently reported include:

        Sensitivity to light (i.e.,  fluorescent, strobe, flashing)

        Dizziness

        Headaches             

        Migraine headaches             

        Intolerance of busy patterns             

        Loss of self-confidence

        Nausea

        Confusion             

        Memory loss

        Ear pain and/or fullness

        Anxiety

        Depression

Symptoms not typically associated with MdDS include:

        Rotational or spinning vertigo

        Double vision             

        Bouncing vision             

        Nystagmus

        Sound sensitivity

        Tinnitus

        Hearing loss

Symptoms can vary in intensity from day to day and even throughout the day. Many times, the reason for these changes cannot be clearly identified. Many report increased symptoms toward the end of the day. This is most likely caused by an increase in stress and fatigue. Although common triggers have not been clinically identified, some report increased symptoms with stress, fatigue, illness, dark rooms, bright lights, busy patterns, shopping in malls and grocery stores, and walking in crowds. For many, the symptoms decrease over time, but not always.

Additionally, some sufferers have experienced recurrence of symptoms triggered by events such as subsequent cruises, air travel, upper respiratory infections and other motion experiences such as elevator rides, etc.

PLEASE NOTE: Many of these symptoms can be experienced by those with other inner ear disorders. This is why MdDS is usually diagnosed after eliminating other disorders and by patient history that may include a recent cruise, boat, car or plane ride or other motion experience.

— End quote