I am new to the forum. I have had a set of symptoms that have been (by exclusion) diagnosed as probable migraine associated vestibulopathy. Does anyone else have the following symptoms:
Extreme susceptibility to motion sickness. Motion sickness symptoms caused by observing any moving objects. I get nausea from watching TV, video, people making hand or head movements, laser pointers, riding in a car, (to a certain extent) driving my car, flashing/flickering lights - most everything except for perhaps sitting still alone in a room. (Even then, I can sense my heart beat shaking my body.)
Associated gastrointestinal symptoms, such as bloating, etc.
I’ve had these symptoms for 17 months. It started suddenly while I was taking a shower and got a small amount of water in my right ear. My eyes were closed and I experienced a momentary whirling sensation. That was it; After that, I have been like this.
Yes, yes, yes!!! I have extreme susceptibility to motion sickness just like you. All the things you mention make me feel very motion sick, plus many more. Flickering lights, TV, moving computer ads, movies, people who move when they talk, etc. I get extremely motion sick in a car and don’t dare be a passenger without taking meclizine beforehand, even for a 1 mile drive. I also suffer from severe eposodic vertigo, lasting up to four hours. People look at me like I am crazy when they hear of the things that make me sick. This feeling is with me just about 24/7. I also suffer from severe eposodic vertigo, lasting up to four hours. Fortunately this part isn’t real frequent.
Though, unlike you, I have had these problems for most of my life with increasing severity. I’m not able to pinpoint a time when they started.
Are your GI symptoms related to the consant motion sick feeling? I also have bloating (and other GI symptoms) but never think of them as related to my m.s. feeling.
What kind of testing have you had done to rule other problems out? Are you taking any medication for this?
The motion sick feeling you describe is a symptom of MAV. I will never forget the relief I felt when I read this a couple of years ago. All my life doctors have shrugged their shoulders when I mention my always feeling of motion sick to them. It wasn’t until I started getting bad vertigo spells and started doing research on the causes when I finally came across articles on MAV (never heard of it before) and read of this as being a symptom.
All of the above except for rotational vertigo… and I haven’t left the house in years. Last time I was in a car (in 2007!) I got sick and walked home, slowly, within the minute.
Why havent you left the house is it the symptoms or anxeity? or both? Thats awful I hate the the thought of being housebound one day .
I hope one day this gets better for you xx
Blondie, don’t take Tranquility’s experience to mean that you too will be housebound. MAV, like all neurological conditions, has a very varied presentation. Tranquility appears to be on the very severe end of the spectrum. I hope he can find something to improve his situation.
Book, I have seen a well-known Dr. at Mass Eyes and Ear (very well known on this board). I didn’t have a lot of tests, but when I pressed him, he felt that my condition is migraine related. I don’t feel that a lot of vestibular testing will help me; quite the contrary.
I have found that low doses of Nortriptyline seems to help a little. I need to experiment with that, since I stopped taking it when it seemed like my heart rate was elevated. In retrospect, I may have jumped the gun.
Why havent you left the house is it the symptoms or anxeity? or both? Thats awful I hate the the thought of being housebound one day .
I hope one day this gets better for you xx
— End quote
A bit of both, but almost exclusively symptoms. The visual motion outside along with walking is too much. Of course, the anxiety doesn’t help.
(Let’s put it this way: if the symptoms were to magically vanish, I don’t see myself having trouble with the anxiety part for more than a few days.)
— Begin quote from “Call_Me_Op”
Blondie, don’t take Tranquility’s experience to mean that you too will be housebound. MAV, like all neurological conditions, has a very varied presentation. Tranquility appears to be on the very severe end of the spectrum. I hope he can find something to improve his situation.
— End quote
Indeed, if you’ve had this for quite a while and it appears more or less stable, I’d say that’s where you ar at.
I hope so Ive had migraines for years but I woke up with vertigo back in september and havent been the same since . My symptoms got better for a few weeks but ive been stable for a few months now no change in symptoms I sure hope it stays that way do you think it will?
Gosh I get so scared when I read about people being housebound (I do hope you improve though) xxx
If I may ask - why haven’t you stepped out of the house - perhaps to get some fresh air - at some point over the past few years?
-Op
— End quote
Well, I have, to take things literally, stepped outside for air and get the mail, but have unfortunately also literally not taken anything that qualifies even as a tiny walk.
The reason is simply that it makes my symptoms worse - the motion sick feeling, mostly.
I have struggled with exactly the kinds of symptoms you are describing. In particular, I have found people who move their heads or hands a lot while talking extremely difficult. Driving is not so bad, but movies where there is a lot of movement, scrolling computer screens, busy places like shopping centres where there is a lot of activity, have all been triggers. I don’t get rotational vertigo.
I have seen A LOT of different specialists and been given every diagnosis under the sun, including that its psychological - which is just plain wrong. Some doctors think it is a type of Meniere’s (as I have tinnitus too), and others think it is MAV. After many years of struggling with it, I have found some things which have helped. I take Lyrica and nortriptyline. I am having allergy treatment at a clinic which specialises in Menieres and allergy. I am on a gluten-free diet (as I found gluten was a trigger when I went on an elimination diet). And I take high doses of antioxidant vitamins. I think all these things have helped along the way - and I am not going to stop any of them, because I don’t want to go back to the horrible experience of being constantly nauseated.
Im starting the Nori tonight , I dont have symptoms half as bad as some on here but my life does get distrupted as I cant do everything I want to do anymore . I really hope the nori is the magic pill fingers crossed xx
Sorry for the delayed reply. It seems like your case is similar to mine. Nortriptyline seems to help a bit but I stopped it due to elevated heart rate and blood pressure. Do you have any side effects from it?
