I had the VNG test done on Monday, where they blow hot and cold air in your ear. A few hours after the test on monday, I had one incidence of a roaring low-frequency tinnitus in my ear, accompanied by a sensation that my eardrum was covered in goo. The roar was such that background noise disappeared. It lasted about 15 seconds. It reminded me that this does happen to me from time to time. Its not much of a bother because it goes away so fast. I wondering if this is a "smoking gun" that might define my problem as meniere's. You know that common wisdom, that the grass is always greener on the other side of the fence? Well, the Meniere's side of the fence is looking GORGEOUS compared to the vestibular migraine side of the fence. Look at the treatments you'all are prescribed. Low-sodium diets, diuretics, anti-virals, physical therapy, suppliments. Next to migraine medicines, which are all mid-evil torture elements. Have you ever looked at the list of side effects for the most common migraine medicines? Almost all of them will render you tired and stupid. (And it pisses me off to no end that doctors don't seem to have a problem with the fact that their patients can't THINK on this crap. Its like once you are a patient, especially if you are a female patient, your mental capacities aren't even considered important. Not that my doc is sexist. He was actually very apologetic about the fact that this is what he had to offer me. There's botox, a treatment without the side effects, but the flippin' insurance companies won't cover it until they torture me with older medicines for at least a four months.) I find myself in the bizarre position of hoping that I receive a diagnosis for a challenging, life-long disease. I'm trying a new medicine for migraine right now. I'm trying topamax. (widely nicknamed DOPE-a-max on the internets.) This is day one. My tinnitus is worse. Where my tinnitus is usually so soft I'm not aware of it unless I'm meditating or falling asleep, I can hear it enough to disrupt my thinking now. And I'm cranky. Definitely cranky. (This is going to be interesting once my acupuncture clinic opens and I have to start taking the role of earth-mother alternative practitioner for my patients. lol Oh, the humanity of it all.) I'm pretty sure, having done some reading, that being diagnosed with Meniere's isn't going to make the request that I try topomax go away. Apparently, its all to common to have both disorders. But I'm still very anxious to get those test results.
I had a VNG done a couple months ago too, although it was hot and cold water they used (not air). My results were a 44% deficit in balance function in my bad ear. Meanwhile my hearing was near-normal. I'm a weird one. It was a different neuro-oto (second opinion) that ordered the VNG, and when I talked to my regular guy about the results, I am still not totally clear on whether that huge balance deficit pointed things toward MM or if MAV is still on the table. I am still being treated for both. It was probably coincidence but I also had the worst 3 weeks or so of spells after the test. Ugh. Just finally coming out of that now.
It is my understanding that VNG's and ENG's can sometimes distinguish between vestibular disorders caused by MM, versus those cause by MAV. This is done by looking at nystagmus (eye motion), and the resulting movement pattern or direction. Side to side nystagmus often signals peripheral vestibular lesions (MM), while vertical motion often points to central (MAV) vestibular issues cause by the brain. Of course, it isn't always so simple as the overlap between many MM sufferers and migraine is a large one. I'm sure in some cases, both causes pile on and contribute to vestibular malfunction.
I have both MM and MAV I find food triggers are my biggest problem with MAV if I avoid them I am good, barefoot have you tried restricting you intake of MAV food triggers? also this site might be helpful for you mvertigo.org its the MAV support forum. also attached is Dr Hain flo chart for MAV
If you are having the vertigo symptom, too, the way I determined that I was having vertigo from MAV rather than MM is that after a vertigo episode ended I had energy to go do something, while I understand with MM vertigo folks are wiped out for a day or two afterwards. For me the MAV trigger was eyestrain, once I got new glasses--and learned the Epley maneuver because I was also having vertigo from BPPV--the problem was solved.
my MAV doesn't cause rotational vertigo as MM does it causes me to feel like I'm walking on a boat moving in rough waters, or like I am drunk and imbalanced. Need to hold onto walls and such.
One thing I didn't understand until I did some reading on this site is that its not a one-or-the-other kinda deal. You can have more than one cause diagnosed. So thanks you'all, for that. I got a good reality check from VEDA in my facebook feed this afternoon. http://hearinghealthmatters.org/dizzinessdepot/2014/treatment-ladder-menieres/ Destruction of the ear!!! Suddenly, the grass is withering! ??? Vikki, yes. I've had literally years of elimination diet tests. I don't consume alcohol, sulfates, MSG, and some vinegars. I'm negative for the rest of the migraine triggers. (I can have chocolate!) I came back into my right mind around 2 PM this afternoon. I don't know if I'll be risking another dose topomax. NASTY STUFF! Every bit as bad as the pain/vertigo. I'm still a bit cranky and I want to binge eat, badly.
My problem has been, since day one, that I don't have episodes. I'm sick every day, almost all day. Sometimes I get a few pain-free hours. I never had so much as a single migraine or vertigo spell until one day in October, 5 years ago, then WACK! Down I went, literally. Its so much easier to treat migraines when you have a break between events, so that you can at least guess at the trigger. I'm actually pretty functional right now. I'm very grateful for that. I'm just going through a new round of doctors in the hopes that I might be able to live without pain at all, instead of just doing really well with the pain. BTW, lots of Migraine sufferers feel wiped out by their episodes. It might even be the majority. The strain makes us need a nap.
My MD is referring me onto another MD at Kaiser who had diagnosed another patient as having both MAV and MM. The reason for this is that she cannot be adaptive on a set protocol for AV's even with fluctuating symptoms. I am still on 1 gm valacyclovir 3 times a day (3rd week) and the last few days having a wanging ear, as loud a tinnitus as ever, and heading toward headachy. I feel a bit of soreness in my throat too. Urg The rain has been coming and going here too which may be adding to it. I confess also being stuck in holiday party fun recently too. My energy is very good as are my spirits even with this ear distress, not living in damage control mode 100% of the time is the reason as is the season.
Its hard for me to admit, but I'm at my worst after a party. Nothing makes my symptoms worse. I think its the noise, plus the different foods. (I don't drink.) Mostly the noise. Why do people need to talk so loud? I'm thinking of having some of those fancy earplugs made so that I can wear one in my bad ear at parties, and in both ears at concerts and such. So that I can enjoy these activities without getting such awful hangovers the next day. The VNG test results came back for me and the doctor said that they were all "normal" until I pressed him for actual numbers. Then he admitted that they were off, but under the level that they consider clinically significant. So, basically, I'm on my own for now. If I do have Meniere's, I'll have to wait for the symptoms to get worse before western medicine will help me, and frankly, I'm OK with that. I'd rather use my herbs and diet. I just feel lonely. And I wanted a diagnosis that I could use to help people understand the challenges that I face in my day-to-day life. When I tell people that I get vestibular migraines, people don't get it. They think I have a headache and need to lay down in a dark room. If I layed down in a dark room everytime I had a headache, I'd be inside everyday, almost all day for the last 5 years! I feel the fool for even asking for help from western doctors again. But in the end, I'm no worse off than I was before I went down this road. Well, I spent a good deal of money, and that sucks, but my health is pretty much the same. I'm very grateful to be as functional as I am, and to be in a profession that allows me to keep working through all of this.
Have you tried seeing an NeuroOtologist? They should be more familiar with Meniere's and such than regular ENT's etc.
Plus I am wondering which is related to my question on another thread, could the antivirals and MAV meds affected the outcome of your VNG?
I do a ton of stuff on my own that is affecting my disorder positively. I'm as sure as one can be that these pro-active things I've been doing affected the test results. I responded really strongly to being on a low-sodium diet and I really think the pine bark is good stuff. I also do a lot of yoga and exercising, vertigo be damned, and that's got to amount to vestibular therapy. I was SO upset at first. I never imagined that the tests would come up with nothing! I just wanted to know what kind of dysfunction I had, not if I had dysfunction. But as I calmed down, I realized that the test results were simply affirming that I'm doing a good job with the natural remedies. And that's a good thing. My neurologist is trying to get me cleared to try botox therapy for my migraine aspect. I've been seeing them off and on for 5 years now. I am not a fan of their discipline. Masochists, every one of them. lol...kinda. The one I'm working with now is a migraine expert. He's personable and he listens, but really, science knows jack-shit about the nervous system. We don't understand the brain. We don't have treatments that actually address the cause of neurological stuff because we are still guessing in the dark when it comes to neurology. At least, as an acupuncturist, I know that what I'm doing isn't science-based. And at least acupuncture makes you feel nice, even when it doesn't work.
In March of this year (9 Mos ago) I experienced a few short episodes of what I would describe as a head rush. As the weeks progressed, so did my symptoms. The few short rushes became many rushes coming about every minute. They eventually turned into hours long drunk like episodes. After all the testing (ear, hearing, vng, blood, mri, some kind of electrode) my oto - neurologist came back with MAV with Menieres complex. I didn't have the obligatory hearing loss for full menieres. I went on short term disability as my symptoms got too bad for work. Major brain fog to the point of aphasia. Then my ear started ringing on and off and getting the full feeling. the fuller it felt the worse I felt. The worse the feeling. Nothing spinned. Felt more like waves bursting through the middle of my brain and leaking down the sides. I believed it was menieres but also felt I could feel it on my brain. In February and March in an attempt to get healthy I started taking supplement and probiotic right before the symptoms started. Also had started jogging a little bit. Also have dental problem. Not work done but infection and periodontal disease. I've read these forums for awhile now. Never joined. I haven't felt well in a long time and was dealing with the depression of living incomplete for the rest of my life. Eventually felt better enough after SD no caffiene, no chocolate, and verapamil to return to work. Maybe I still will be sick but something awesome happened last night. A customer of mine (I work at Verizon for now until they fire me because I've become dead weight) offered a free massage. I haven't had one in ages. She started on the side of my good ear. My bad ear was going crazy making horrible vibrations and sounds with every syllable she spoke. She eventually moved to my left (bad side) and someway through the very deep and bruise inducing massage my ear heard her clearly. Very clearly. More clear than I can remember. This morning I got out of bed and about 30 mins after I realized I hadn't felt "dizzy" once. That's wasn't the biggest deal though. Dizzy or not I have felt it there, hanging on, ready to strike. Like an itch I cant scratch. My brain always felt a little energized. Like vibrational. Before the Dr I actually though I was having miniature seizures because of people explaining aura. Today, I had none of it. I felt completely healed today. I tested with a short cup of decaf and still felt nothing. I enjoyed a hot chocolate later and still felt nothing. It's been 24 hrs and I just feel normal for the first time since march. I don't know how long this will last but I'm definitely getting another deep tissue massage and I'll ride this wave however far it will take me.
That's great for you Booklover. Fingers crossed that you have found an answer. A comment about menieres and MAV. I had both but you can never be sure, it's so confusing. David Buchholz of " Heal your Headache" maintains that menieres is MAV. I believe that my menieres has gone because my left ear hearing has almost disappeared, I have about 10% function in that ear. I still have MAV but never suffer because I avoid all my triggers, which are caffeine, msg alcohol and anything high in tyramine. I believe it's really worthwhile to know through trial and error what your threshold is with triggers as that can also be confusing. What might not be a trigger one day could be a trigger on another day because of your accumulation of triggers at any one time. The trick is knowing what level your threshold is. I think that we can get complacent about triggers and convince ourselves that a certain item of food or drink is not a trigger when really it is or it may be.