Vestibular Neuritis?

Has anyone ever heard of people with vestibular neuritis having triggers that might make their symptoms slightly worse?

Please comment anything you know, any advice would be greatly appreciated! All these vestibular issues are so confusing and can over lap i heard but i just wondered if anyone has actually experienced this or heard about it happening to someone.

Vestibular neuritis is becoming a more controversial diagnosis. I don’t believe it’s possible to prove you’ve had a bout with a virus with current technology. I think they term these episodes now as ‘acute unilateral vestibularopathy’ because you can’t be exactly sure of the cause.

I had suspected VN for 5 weeks but now I believe I had BPPV which resolved spontaneously only to come back with further complications (including migraine) 5 months later and more obvious BPPV symptoms.

BPPV is known to be the most common cause of vertigo so there is some logic to it.

Thank you for your response :slight_smile:

Yes i agree, to be honest i don’t think enough investigation has gone into all these connected vestibular conditions.
I find some of the doctors i meet do a lot of ‘guessing’ of what i have and not a thorough diagnosis because in their defence theres not a whole lot they can do.

Do you mind me asking what your symptoms of vestibular migraine are? And are you on any medicstion for it :slight_smile:

Thanks in advance.

Completely agree. The scanning technology is sadly not high resolution enough so they can only go on your symptoms.

Basically the docs help in the area of symptom management but not much else, unless you have BPPV and it’s really obvious how to resolve it with physical therapy.

My vestibular migraines were horrendous. Symptoms are acute episodes lasting hours of severe motion intolerance, discomfort when closing eyes (i have to keep them open) and a nasty pulsing in my head, nausea on movement. I had to remain still and stare at a fixed point on the ceiling or wall until the migraine goes. These are now eliminated with the help of meds. Thanks goodness! Aside from nausea, migraines are the very worst symptom.

In between these episodes I have fluctuating imbalance, nausea, an occasional ear pressure sensation, intolerance to artificial light which manifests in getting dizzier or eg one leg feeling heavier and tinnitus. I was unable to use computers or watch TV for significant lengths of time without meds when it got bad. At the worst point I got visual hallucinations of the floor moving and a rocking sensation when walking. Nausea is mainly controlled with meds and not had that for months. Artificial light rarely bothers me now. The visual hallucinations are gone. Imbalance has not improved much but was significantly improved with medication to begin with. I am now able to watch TV and use computers comfortably now that I’m on meds. Tinnitus has not generally improved and changes between a hiss and a buzz. You get used to it to some extent. I used to also get an occasional sensation of fluid moving in my ear and at one point a squelching sound when moving my jaw. This no longer happens.

On top of all that I had a lot of anxiety at the beginning which has subsided significantly with habituation, some psychotherapy and the positive results of the medication.

My medication is Amitrityline and I’m on 20mg every night which is a fairly low dose for which I’m very grateful. Sometimes little headaches and migraine aura creep through but all the big migraines have been eliminated. I’ve not had one since April.

Unfortunately it is not.

Do you mind me asking you how old you are? How long you have had migraines and how long have you been on meds? When did you start to see improvement? :slight_smile: I am very interested in it all, i possibly have vm but so far only diagnosed with vn for now. Happy to hear the medication is helping you. Do you have any food triggers? or does this all settle usually with medication

Charlotte

Had one migraine in my life before, 10 years or more ago. I’ve had MAV for about year, on meds for about 5 months. I’m 45 Charlotte.

Italian food sometimes appears to worsen my tinnitus. Dark chocolate may give me migraine rumbles.

I have the occasional coffee which sometimes makes me feel better not worse. I don’t drink alcohol much anymore.

I try to lower my salt intake. I have had pizza with no issues. I don’t stress much about food though. Just common sense.

By far my biggest triggers were motion and moving images But the meds really help that.

One further point, Charlotte. VN is supposed to resolve in about 4-6 weeks and never come back. Funnily enough BPPV has the same prognosis - it can also resolve spontaneously even without any special physio - so how do you tell the difference between the two? Anyones guess in some cases!

Unfortunately for me, it came back (about 5 months later) and brought with it much worse and escalating symptoms. My theory is the BPPV crystals ended up blocking some plumbing and this lead to my hearing issues and chronic imbalance. I’m hoping in time these little devils will dissolve or disintegrate and any blockage(s) will disappear. If you look on this site there is evidence of a lot of people getting better over 2 to 4 years, even after it has become chronic.

To me the BPPV cause is more compelling than a story about viruses getting so deep in the body of healthy individuals. A physical cause makes more sense to me and explains how it becomes so chronic and variable. The latest hypothesis on menieres disease which shares so many of the same symptoms as MAV is that it is caused by plumbing getting blocked by the little Otoconia crystals.

So glad to hear the medications are helping you, i think i may have vm but I’m not so sure.

I am only 22 with no history of migraines so i am really surprised if i have vm so young however i know it is not impossible. my symptoms are all over the place and its hard to keep track of them even when i keep a diary but i do have a couple of small food triggers, hence why i think vm however i have heard some people say that vm and vn over lap sometimes.

What do you mean you do not stress much about food? As in you don’t eat much? or it has never been a trigger for you :slight_smile:

i am very sensitive to medication, is Ami a good one to start on or is it quite a hard drug to be on with plenty of side effects etc.

Amitriptyline is first line defence. Most experts prescribe this one first and see how you go, although different neuro’s have their own favourites.

Food: I eat mostly what I like but try to be healthy, I rarely worry about food triggers.

You are very young to get this, I’m so sorry. I know how tough it can be. Know that also because you are young you probably have a better chance for your brain to compensate than people hit by this that are older.

I personally think that most normal people would get migraines if their inner ear were to get upset like this, so don’t worry you are getting a migraine from it, its perfectly normal reaction for your brain to get upset. Our poor brains struggling to process all this noise it is creating! :slight_smile: .

The fantastic Dr. Hain has a great flowchart for trying different meds:

http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

He also has a great guide on medication for vestibular problems, the key is basically reducing your motion intolerance which knocks out nausea and the major migraine trigger (and I believe the rocking sensation, visual hallucinations/visual vertigo, improves artificial light tolerance, computer/TV use):

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Also check out crazymeds for more on some of the antidepressants that get used (e.g. Ami, Nori, Effexor etc.):

http://crazymeds.us

So is that what you started on and it has been working for you? :slight_smile: that’s great!

Yes i am very young to have this, safe to say it really has taken a toll on me but im trying to push through it. I wonder if our brains can ever go into remission by themselves without medication? It would take longer obviousyl but what do you think?

I will take a look at the links shortly! :slight_smile:

How do i reduce my motion intolerance? do i just keep pushing myself each week to be in uncomfortable situations etc and then eventually my brain will adapt and learn or?

Thanks for chatting with me about this, i am new to it all and quite frankly scared…

Hey guys, I’m 99.9% sure what caused my chronic MAV (and probably true of most of us) was vestibular neuritis. A virus comes out, damages the trigeminal nerve, and you have to deal with that. Dietary triggers for me are ones that dilate (i.e. expand the blood vessels). My blood vessels and nerves are already inflamed do to the damage caused them by the virus attack so that is why it hurts way more than it should and causes other symptoms by eating tyramine. Hence why light flicker and other things make my nerves overly sensitive. I’m doing pretty well (almost 100% most days if I am careful) if I remember to take all my supplements:
400mg CoQ10
400mg B2
800 Magnesium Glycinate

Feverfew has also been helpful. GNC brand.

Good luck and I’m here with you guys-I too have this and now how crappy it is. But if I hadn’t had it, I wouldn’t have also gone on the life path I am on, and I met the love of my life and am determined to live a life more outside if possible-so I’m grateful for that. You just have to take the best you can from it once you are feeling a bit better. Gabapentin though I still do recall fondly even though I’m off it. It was nicely sedating when you have this condition. But I wasn’t myself so I went off it.

Best
Liv

PS The only virus that can come “back out” is chickenpox virus that goes dormant on your trigeminal nerve after you get it as a kid and can spring out if you are overly stressed or not eating enough Vitamin D or something… I have no idea. That’s my theory about MAV I’m just praying that my bout with it a second time (Ramsay Hunt without the rash if you will…) has made me more immune to that virus from coming out a 3rd time. I really couldn’t deal with that. But I suppose there are worse things out there…So I try to be positive. :slight_smile:

It may well be there are other causes of MAV…

I’m pretty certain mine is not viral in nature though because it’s so variable and I often have the sensation of fluid dripping/moving in my bad ear (which I originally thought was in my middle ear but now I’m not so sure). I also get BPPV like positional spins occasionally which is a hallmark of crystal issues. Lastly I fully compensated several times and imbalance went away only to come back months, weeks or days later. I don’t believe that could have been repeated attacks from the virus. It’s supposed to be a lightning strike like one off event. Debris shifting around doing mischief is a more compelling hypothesis imho.

I guess we may never know.

In any case, I believe we agree that migraines are being triggered by an upset brain dealing with the fallout of whatever has harmed or is impeding the function of the inner ear, and some people are more susceptible to migraines being triggered than others.

And in any case the symptom management is apparently the same. Lifestyle, diet, meds and/or supplements. On that we can surely all agree …

I have a friend with vestibular problems that are more like Meniere’s in character and he thinks it viral since it comes back repeatedly but for us MAV-ers I don’t know. I too think it could be chemicals in the brain that get off balance. But yes the remedies I think we can agree on entirely! haha

Hurry up technology!!! :slight_smile: