Hello. I am new to this horrible diagnosis and still hoping (vainly) that it isn’t true. One of my questions is this- I have been on a strict whole foods diet for 6 years due to another condition called Interstitiall Cystitis. I eat almost NONE of the main trigger foods. No alcohol, aged cheese or meats, etc. The only thing I have is 2 small cups of coffee. I did stop that in the beginning of this struggle on June but did not see any difference at all. I also ocasionally eat plain yogurt.
I will try eliminating caffeine again I suppose. How long does it take for you to be able to distinguish a trigger? I guess I was hoping that since I had no food triggers in my diet already- maybe the diagnosis is wrong? sigh…
I’m going to get myself in trouble here but I think a lot of people look at a MAV diagnosis in the wrong way.
It may turn out to be an inner ear condition that gives you migraines. That would explain the more continuous symptoms people have as apposed to the episodic migraines that can come with it. There seems to be an assumption that it’s migraine making you dizzy. I don’t believe that. It may be the latest medical fashion to think that way but there is absolutely no proof I’m aware of that migraine can make you dizzy constantly. It’s just a rather weak hypothesis. Having lived with this condition for over a year and having eliminated the migraine element I can tell you that despite that success I’m still dizzy and still have tinnitus all the time (though it’s definitely improved.)
If you aren’t getting the episodic migraine then that’s something to be happy about.
Diet control is definitely helpful to try and eliminate the migraine element, but it will not help all your symptoms.
Thanks- could you explain a little more what you mean? I do not get any typical migraine nor have i ever had a bad headache. I start out the day good and then depending on the day my weird visual dizzy feeling gets worse. I feel like I just got off a tilt a whirl on the worst day. Sometimes gets better at night. I am definitly affected by a cumulative amount of motion triggers. I sing at big churches- really cathedrals and after 3 gigs in the church looking up and down from my music to the congregation, I get much worse. it started after a weird virus. Thanks, I am really lost. Any info is helpful.
Don’t believe the virus hypothesis either. The inner ear is a very physical thing with highly sensitive sensors and plumbing. There is a lot that can go wrong cognitively if you get a disturbance in there.
Visual triggers are understandable : the inner ear is inextricably linked to your vision. Your brain combines the two senses and there is even muscle memory connecting the two. Turn your head fast and your eyes will automatically flick to the new direction.
If anything gets disturbed in your inner ear your brain may be able to compensate. But too much disturbance and it will not be able to cope and you will get symptoms. Tiredness could definitely exacerbate that.
Thanks- so are you saying you don’t think this is MAV?
Not exactly. I’m saying that the migraine is not the cause, just one of the significant and debilitating symptoms.
MAV is a diagnosis of exclusion and based on a symptom constellation. I believe some doctors have gone too far and assume its caused by migraine. There is no proof of that. I’m willing to bet that the vast majority of dizziness has to do with the inner ear.
People go to great lengths to control the diet and yet fail to control all the symptoms. This pretty much proves my point.
Thanks.
I suffered for four years going to doctors (ENT’s, even one at the world renowned House Ear Clinic in Los Angeles) and did not find relief. They only focused on inner ear issues related to Menieres Syndrome. The House clinic wanted to do shunt surgery. The results of that surgery are underwhelming, as is watching salt intake or taking a diuretic. I refused the surgery. Finally I went to an Oto-neurologist at UCI medical center and I am in control. I do not get migraine headaches but following the the diagnosis of “migraine without headache” has put me in control. I was getting severe vertigo, nausea, bowel issues, light and motion sensitivity, etc. I began on Nortriptyline while I started the diet. It all worked but it took me a few years to figure out my particular program. I never can drink regular coffee or too much decaf (cumulative). I begin to have vertigo if I am talking a lot in a noisy restaurant and moving my head to much or if I overheat or have overdone on activities without periodic rest. After having been strictly on the diet, I have learned that I can have one ounce of cheese a day, small square of good quality chocolate, one egg every 4 days, 1/2 an orange once a week, etc. But I always avoid coffee, soda, Asian food (with fermented items in it), too much citrus and more than 1 tablespoon of plain yogurt. I have written about my experience at my blog and I hope you get a chance to look at it. Especially, check my Resource section for the information out of John’s Hopkins. If this works for you, like it did for me, then that is what is important. You need a successful plan and that is what this program gives me. I will always have a little tinnitus (which fluctuates) and ear fullness (also fluctuates) from ear damage. But reducing triggers lessens these problems. I can play around with some of the foods listed (small portions occasionally) but never coffee, alcohol large amounts of restricted foods, MSG,or overheating myself. And remember, triggers are cumulative and additive. A little may not affect you but large portions or several days in a row of something might. Every 10 to 14 months I have needed a short course of Nortriptyline, always because I cannot control triggers during the hot months of summer…I will never be carefree but at least I have a plan to control the debilitating vertigo. Good luck to you and I hope you find what is beneficial for you. (vertigotalesandtastes.blogspot.com)
I think you were extremely wise to avoid surgery.