The Vestibular Migraine Community

Profiles - please participate!


#1

I think it would be useful to all of us to see how people are managing their MAV with meds and diet, etc. I will start - please copy and paste and participate if you would! I hope helps!

First mild symptoms: June 2014
First severe (disabling) symptoms: October 2016
Current diagnosis: MAV, possible secondary ear issue
Symptoms (at their worst): walking on a dock or boat 24/7, brain fog
Challenges: couldn’t drive, take walks, go up stairs, drive, watch TV, use the computer or phone,
Triggers: elevators, chocolate, wine, computer, TV, phone (still searching for food triggers)
Current medications: Effexor 37.5 (morning), klonopin .25 at night, trazadone .5 at night
Current supplements: magnesium 200 mg at night
Side effects (if any): Irritable and aggressive on Effexor, gas and diarrhea on Magnesium
Current diet: Anti-inflammation/ Paleo: no gluten, dairy, wine, chocolate, and all the usual migraine suspects (citrus, pickles, tomatoes, etc.)
Current functionality: 80% (I can drive short distances and walk again) still a bit woozy 24/7, never back to “normal", spacey and inarticulate
Past meds, supplements that weren’t tolerated: Multi-vitamin, Omega-3s, Topamax, other supplements
Current doctors: Steven Rauch, Greg Whitman (Mass Eye and Ear, Boston)


#2

First mild symptoms: Never, but first imbalance episode April 2015 for 5 weeks, but wouldn’t call it mild
First severe (disabling) symptoms: October 2015, worsening for 8 months to full on MAV.
Current diagnosis: MAV, possible unilateral secondary hydrops (second opinion)
Symptoms (at their worst): ground feels completely soft, path before me appears to rock side to side (hallucination), 24/7 anxiety-inducing tinnitus, hours long nausea spells, depression, anxiety, pressure in ear, used to get water squelching like feeling when moved jaw, scary vertigo attacks.
Challenges: couldn’t watch TV or use computer, vertigo attacks left me in bed for 14 hours staring at wall, unable to close eyes or would increase discomfort. After these attacks I’d be especially unsteady for days. Attacks increased in frequency to 1 every two days then died out over many months. Amitriptyline made huge difference to dealing with them.
Additional tough challenge: I’m a jazz pianist and singer and now I find live music very uncomfortable to listen to - I get a lot of distortion especially with loud bass (though i’ve not got any recorded bass loss) and I hardly ever sit and play at the moment. The stress of all this gave me TMJ which is much better after 10 months or so, but knocked out my singing. I really hope my hearing will one day return.
Triggers: motion, TV, computer, sometimes caffeine, VRT!!
Current medications: 20mg Amitriptyline nightly (bl**dy miracle drug!) - about to try and titrate down.
Current supplements: none
Side effects (if any): slow metabolism, bloated feeling, initially dry mouth, initially drowsiness (but a good side effect as helps with sleep despite tinnitus!)
Current diet: almost eliminated alcohol, otherwise normal, have re-introduced caffeine but it may worsen my tinnitus. I initially cut out salt and did a lot of home cooking, partially because I feared I had Menieres, but despite some hearing loss at HF, i’ve not had any significant loss of hearing so this has been ruled out.
Current functionality: 95%, worst remaining symptom tinnitus, balance ok, no longer get vertigo attacks (touch wood!), considering titrating down on Ami. I was always able to cycle & run. Walking was actually the most uncomfortable activity.
Past meds, supplements that weren’t tolerated: Propanolol (ugh, really slowed me down, felt horrible)
Current doctors: UK based balance centre


#3

Here goes - as best I can remember!
I live in South Africa and am currently 68 years old.

First Symptoms: ‘dizzy spells’ around 1968/9 at about age 20. several Dr’s - no diagnosis.
Diagnosed: around 1080/1. During an episode a GP diagnosed ‘true vertigo’ and referred me to a local ENT who was considered an ‘expert in the field’ and diagnosed Menieres in the left ear. By this time tinnitus had set in and I had considerable hearing loss in that ear.
Operation: Immediately…‘to preserve remaining hearing in the ear…???’ - no improvement in vertigo. Hearing loss described as ‘socially deaf’.
Prescribed: Stugeron, an antihistamine, which did nothing, and stemetil when nausea was a problem. Gave up (added) salt.
During this time, the episodes came out of no-where - vertigo lasting from half an hour to several hours, with nausea if really severe attack. The only option was to sit (sometimes better), or lie staring at a spot without moving at all. Closing eyes was usually worse. In between ‘attacks’ I was fully functional - only the fear of the next (embarrassing) happening in public! (small town - staggering in public would lead to rumours! :wink:) The ‘episodes’/groups of attacks lasted for months on end - then would disappear…till the next time. There being no ‘google’, I was briefly part of a Meniere’s group by snailmail :smiley:, where I heard about caffeine - and swapped my ever present cups of tea for water, which took away a sometimes ‘just slightly off’ feeling.
Eventually it seemed to sort of burn out, only surfacing occasionally for a day /week or so here and there …and I thought I was pretty much free! Even indulged a cup of coffee a day and a little salt occasionally, for several years - no problem!

Return: December 2015 - Worst Episode ever!! Full day of vomiting, diarrhea, extreme vertigo, sweating, splitting headache…Apart from the headache, still Menieres symptoms, just worse. Tapered off over time and seemed to disappear. My Medical and Homeopathic qualified Dr.was little help except to prescribe stemetil, which I have found helpful if taken at the first sign of actual nausea. ENT specializing in BPV was no help except to rule that out.
Remission: for about 3 months, during which time I underwent 2 cataract ops and got new glasses - just in case…
RE- surfaced: In a totally different form! Started having ‘earthquake’ events - feeling as though the earth beneath my feet was hurling me up and off balance - disrupted vision,total loss of balance lasting between 10 and 30 seconds. Felt tired, off balance ‘un-real’, slightly nauseous, just plain awful! - all the time. I defined my days as ‘functional’ or totally out of it! During research - found that these symptoms matched MAV (which I’d never heard of) …and this forum. From my Meniere’s research, I had been trying to identify triggers, but somehow this forum helped me to understand the concept better.
Triggers: for me seem to include: Weather (pressure) changes, computer, tablet, phone screens (strangely not really TV - unless flashing or fast panning), vibration, Loud noises (certain ranges, maybe??), Flourescent and energy saver lights, caffeine INCLUDING chocolate! :cry:
Current supplements: Magnesium, grape seed extract, Vit B complex, Ginko Biloba, Feverfew, Tissue salts: Mag phos and a combination for ‘coughs’ ( which seems to control my previous, long standing slight post nasal drip). Bryonia (homeopathic - for vertigo made worse by movement). If nausea threatens, a stemetil, - if a ‘bad’ headache threatens, a single codeine seems to stop it developing.
Current Status:…Controlled??? …or in remission?? I still get the odd fleeting ‘greying out’ sensation, and of course the tinnitus is ever present, and fluctuates. (mostly I hardly notice it any more) I am ever aware that the ailment is not ‘gone’ - but at present I’d say around 98% good!
Notes: I have no official MAV diagnosis, not participating Doctor.
My ‘supplement’ regime is of my own devising, through trial and error. I am aware that Homeopathy/natural meds are often declared useless - I don’t care, just as long as I feel better!
Despite stress being a factor for most people, I have to say that I have gone through the most stressful phases of my life symptom free. However, I do find that the actual symptoms cause stress and anxiety!!
I have avoided the ‘drug’ route (apart from the fact that they have never been suggested to me!) mostly because I tend to react badly to even relatively mild - even over-the-counter - meds! So far, I have not experienced this from ‘natural’ products*
Genetic factors??? Just to mention - my late Dad started with Menieres around the time I was diagnosed (he would have been a little younger than I am now. ) His attacks got more severe with time, whilst mine eased off. At the time, our shared ENT assured me that his was a different cause, as it was hardening of the arteries, although he offered no cause for mine! Wish I could speak to that ENT again now - I have questions about things he said that I did not question at the time!!.
My mother used to always speak about getting a ‘thunder headache’ when a storm was approaching…not a migraine, just a pressure headache. I mention these things as it might help others tie things together…as it seem the medical profession generally is still not really able to.

Sorry this has been so long - but it has been a long journey!


#4

First mild symptoms: Never mild. No indication until it hit.
First severe (disabling) symptoms: August 26,2012 Violent vertigo lasting approx. 4 days. very slowly lifted over the next 9 months. It felt like permanent motion sickness.
Current diagnosis: MAV, possibly PLF. (i have a positive fistula test)
Symptoms (at their worst): soft floor, spinning, visual vertigo, severe motion intolerance, pressure sensitive, ear fullness, laying on left ear makes me super sick (not BPPV) yelling makes me sick.
Challenges: at worst, i couldn’t watch tv, track movement, walk especially in low lighting, move around much at all, drive or hear noise.
Triggers: movement, noise, visual stimulation, shopping, stress,
Current medications: none
Current supplements: magnesium 200 mg, B2, Multi vitamin, ginger supplement.
Side effects (if any): none.
Current diet: I avoid chocolate, deli meat, and caffeine.
Current functionality: 70% (I can drive short distances and walk again) I feel much worst with “activity” or moving around too much.
Past meds, supplements that weren’t tolerated: none
Current doctors: Dr. Rauch, Dr. Priesol (Mass Eye and Ear, Boston) + Dr. Lee


#5

First mild symptoms: April 20, 2011- Severe back pain following 8 hrs in an office chair at the computer. Next day went to a restaurant after work and got sound & movement sensitive, felt off balance, nauseated, and disoriented. Dizziness only happened at work for awhile after that, but gradually invaded the rest of my life.

First severe (disabling) symptoms: August 3, 2015- woke up to a morning thunderstorm and rolled over from my left side to my right side and had severe vertigo for 4 hrs. Could not move my head or get out of bed. (not BPPV, tested multiple times before and after this incident) Have not been the same since. Was able to go out, drive, and go to restaurants again around the holidays of 2015 but became apartment bound in January 2016 to current

Current diagnosis: Originally MAV, or maybe now Persistent Postural Perceptive Dizziness and/or both

Symptoms (at their worst): Feeling of being pulled straight down (or pushed on head from above) to the ground, 24/7 off balance and slanted feeling, episodes of visual vertigo lasting weeks, neck pain triggering dizziness, motion sickness feeling when not in motion, twitching episodes of just head and neck or whole body while seated and worse lying down, rocking feeling especially in the shower and in front of a mirror, leg weakness; intermittent eye pain; intermittent blurred vision; rare headaches most seem neck tension related

Challenges: standing and walking around the apartment without feeling slanted to one side, cannot walk outside apartment without assistance or even walk long distances, computer usage (especially text) is hard, walking down long hallways or flat-ish surfaces like sidewalks, cannot drive or work, cannot stand for long periods of time, have trouble sitting up in a chair without a headrest, haven’t been able to lay on left side for over a year, many more

Triggers: turning my head/neck left, right, up or down; walking on flat-ish surfaces like sidewalks or hallways; getting out of breath from exertion; bending over or reaching up; computer screens text and scrolling, fluorescent lights; shopping malls; any stores; grocery store isles; restaurants; looking at patterns on walls or floors; crinkling paper or plastics; loud continuous noises; lying down to sleep even slightly propped up; lying on left side; neck pain; elevators (the worst!); riding in a car; catching motion in the corner of my eye; taking a shower; many more :cry:

Current medications: 0.5 mg Xanax 2x/day, 100 mg Gabapentin 1x/day

Current supplements: Multi-vitamin

Side effects (if any): Occasional inter dosing withdraw/anxiety from Xanax, none others unless I try to increase the dose of either of the above

Current diet: normal, only food triggers are fried foods, some types of french fries, and iced tea. (I also avoid acidic and heartburn causing foods but not for MAV) I already don’t drink alcohol, coffee, soda, or any tea that’s not herbal and decaf

Current functionality: 20%. I’m apartment bound without assistance, cannot work or drive, cannot do any house work/cleaning, cannot go to stores or restaurants. I mainly make it out for doctors appointments or super important family functions which usually involves me taking extra Xanax to make it through

Past meds/supplements not tolerated: Verapamil, Topamax, Nortriptyline, Amitriptyline (after 3 tries too! I still may try again), Propranolol, Remeron, Migravent supplement (prob the butterbur in it), Lexapro- verdict still out

Past meds that were given a long trial and did not ease dizziness: Zoloft, Prozac (helped a little with sound and light sensitivity only)

Current doctors: evaluated once at John’s Hopkins Vestibular Clinic, currently followed by Dr. Griffin not with JHU


#6

@daniielle02 I noticed you’re on a ginger supplement. Have you noticed that helping you any? Do you have any side effects from it?


#7

First Symptoms: ‘dizzy spells’ I had these as a minor, vague memories of going dizzy at primary school and being collect by my mum, this only happened a handful of times. Symptom free at Secondary School and sixth form. The next episode was when I was 18, same thing, sudden on-set bout of vertigo that made me vomit but once i was empty and washed out enough to sleep the symptoms disappeared while i was sleeping. Symptom free at University and in my first couple of jobs. Relapse at around 23, doing a job I hated sat in front of a computer screen in a sales driven environment. This time the symptoms were recurring, I’d zone out, suffer tinnitus and then go dizzy all of a sudden. These bouts last several months and I pursued medical diagnosis which after all sorts of scans and tests led to the diagnosis of MAV. Tried beta blockers which didn’t seem to do much and prochloroperazine (or something like that) which was used to try and alleviate the nausea. After changing jobs for a more physical role this went into remission for several years again.

More recently (I’m now 35 with a young family) I have had a couple of late summer bouts of dizziness. One bout (early 30’s) was quite regular over a period of months and led me back to the drs. I have had very little success with medication and didn’t find it stopped my symptoms. It seems to go away of its own accord. It does linger around leaving me feeling under the weather for long periods (often so long you forget what normality feels like) but I haven’t been full on dizzy now for around a year.

Tinnitus has been a big issue for me, by my early 30’s I was suffering substantial hearing loss and the tinnitus was getting louder. I now where hearing aids which I find really helps on both fronts, with them in the tinnitus is much quieter and they obviously help me hear more as well. They have really changed my life in all honesty. I now have the hidden ear ones, my first pair were the old school type that were highly visible and made me quite self conscious. After 2 years I went back to my audiologist and she changed them for the hidden ear ones I have now (Phonak Nathos Micro or something similar) these really have been a revelation.

Triggers: STRESS is clearly a huge factor, I’ve tried dropping caffeine intake, alcohol and various foods but not found much correlation in this. I tend to eat as I please (although I try and have a healthyish diet in general) and I no longer avoid caffeine or alcohol. I once had to travel to Ireland for a wedding (Irish weddings being notoriously boozy) and I had been feeling very rough in the build up and almost opted not to go. In the end the wedding party was on a sort of purpose built site with cottages for accommodation very near the venue. I decided to go, at worst I could just wobble off to bed. I was very on edge, scared to embarrass myself in front of my wife’s friends if I went dizzy. Against my better judgment I had joined in with the wedding toast and had a glass of fizz, then a pint of Guinness followed and I think I just completely relaxed and unwound. I took a full part in that wedding thereafter (which like a lot of Irish weddings was a three day affair) and miraculously coming home from that I finally felt well again, everyone else in our party was all hungover, I felt better than I had done in months, I’d kind of conquered my fears I think.

Current supplements: Magnesium Bisglycinate tablets 500mg twice a day after food. I read somewhere that magnesium was good for people with headaches so I ordered some. It might have just coincided with a period where I am symptom free but I’ll carry on taking it as it makes me feel like I am doing something to try and beat my MAV.

Notes: I suffered a head trauma when I was a toddler, this has been noted on all my medical histories as a possible cause

Genetic factors: My mother has migraine with Aura so there is a possible genetic link

Sorry this is quite long, It’s been a kind of cathartic experience writing all this down for a group of people who understand it and are dealing with similar problems of their own.

Light at the end of the tunnel - I know MAV brings me feelings of gloom, it makes you wonder if you will ever feel normal again. I seem to get this in periodic episodes of differing severity and length. If you are in a dark period feeling unwell and unhappy, please know that it can all change very quickly. As quickly as it comes it can go. Don’t let it beat you down, seek the positives in the small things you manage to do and keep on trying to do those things as I am a great believer that it all seems much worse when you shut yourself away from your real life.


#8

No side effects At all. I don’t think it helps with dizziness


#9

@daniielle02 okay thanks! I’ve been thinking about trying it to soothe my stomach (and I heard ginger root esp can potentially help with motion sickness and dizziness) at least.


#10

It is also often recommended for nausea - don’t know about dizziness…???


#11

First mild symptoms: it did not start mild.
First severe symptoms: I was 9 months pregnant in September 2005. I was in a store looking at greeting cards. There were bright fluorescent lights above. All of the sudden I felt like everything was spinning and I started vomiting. I became “dead weight” and a couple of nice people took me to my house. The neighbors took me to the hospital. They thought that it was labor with constant vomiting. At the hospital they called it BPPV. I had several episodes every couple of months after this episode. Every time I felt like everything is spinning and within a few minutes I would start vomiting for hours. I started seeing an ENT who called this BPPV and I found that I have hearing loss.
Symptoms (at their worst): fast forward to 2013. I had several months of weekly episodes of severe dizziness and vomiting. It would take me a couple of days to feel normal and then I would get another episode. I took several months of Leave Without Pay from work and I stayed mostly in bed. By then I have already flown to see Dr. Hains in Chicago and he diagnosed me as having MAV and Meniere’s.
Last year I had several episodes of sudden hearing loss. Over a few days my hearing woud get significantly worse. Audiology exams would show more than 30 decibels of hearing loss. I was given high doses of prednisone for 10 days.
Challenges: lifting my head up, bending down, afraid of driving (what if an episode starts then), taking care of my children, cannot take a boat ride, avoid high floors, edges, malls, etc.
Triggers: I had full blown episodes after drinking wine, eating blue cheese, eating cake with yeast while it was still warm, being under bright lights (at stores).
Current medication: valium occasionally but I hate taking medication. If I feel like I am about to get an episode I’ll take Valium.
Supplements: I have taken migravent. I have been going to a vestibular physical therapist weekly. She helped me in 2013 after months of feeling disabled. I am not sure if it is still helpful but I am afraid that if I stop seeing her it will all come back.
Diet: avoiding wine, blue cheese, nuts.
Current functionality: hearing loss is getting progressively worse, tinnutitis is worse. I have a hearing aid. Still dizzy but I have not had a major episode with vomiting since 2014.
Past meds: I tried different medications but everything made my dizziness worse. The doctors said that I need to give it more time (I would try for 2 weeks). There is a compound medication for Meniere’s that I tolerate.
Current doctors: Dr. Carey at Johns Hopkins


#12

First mild symptoms: 30 years ago
First severe November, 2013
Current diagnosis: MAV, possible Meniere’s.
Symptoms (at their worst): severe vertigo, vomiting, 24/7 dizziness
Challenges: driving, loud noises, flashing lights, balance
Triggers: changes in weather, chocolate, yeast, some cheese, stress
Current medications: 30 mg Nortriptyline at night. Ativan if vertigo gets bad
Current supplements magnesium, D3, B2, multi vitamin
Side effects (if any): Constipation and a few heart palpitations.
Current diet: avoid caffeine, alcohol, most Heal Your Headache recommended foods.
Current functionality: 80 percent most days. Never normal
Past medsvitamin, L-lysine, monolaurin, Paxil, and Zoloft.
Current doctors: Dr Gramprie, University of MI’


#13

First mild symptoms: Feb 2017
First severe (disabling) symptoms: May 2017
Current diagnosis: Migraine Variant Balance Disorder
Symptoms (at their worst): spinning & falling sensation, visual disturbances, photophobia, weird headaches
Challenges: couldn’t walk more than 2 minutes, couldn’t go in sunlight, couldn’t sleep, couldn’t hear well (tinnitus), couldn’t drive, work or even cook etc, horrible reaction to TV or flourescent lights
Triggers: stress, travel, caffeine, alcohol, insomnia, etc - don’t know about foods.
Current medications: Pizotifen 2mg
Current supplements: magnesium, CoQ10, B2, B12, feverfew, D, etc
Side effects (if any): Pizotifen - constant low level tiredness, lack of motivation, HUNGRY
Current diet: no gluten, dairy, wine, chocolate, and all the usual migraine suspects (citrus, pickles, tomatoes, etc.)
Current functionality: 60% (I can drive reasonable distances on a good day, walk half an hour, sometimes ride a bike again, swim a short while, work from home and do some meetings but not at normal level, still woozy 24/7, never back to “normal", often spacey and inarticulate, lack focus and motivation
Past meds, supplements that weren’t tolerated: Amatriptyline - horrible effect on me
Current doctors: Dr Surenthiran (Medway Balance Centre, UK)


#14

Update: Thought I would just put this here to avoid re-telling my story!
Hoping it will give others hope to report that, although I don’t believe there is a ‘cure’ for me, I am currently on about 99% normal life, (at least for the past week or so) and am feeling good.
For the past several months I have been feeling increasingly better, with just a bit of that ‘off-balance’/ fuzzy feeling, usually later in the afternoons. This seemed to pass once I had finished with supper and sat down for a bit. With no glucose-related or blood pressure problems, I’m thinking maybe just a day of moving around was catching up??? There were the odd 'earthquake event (usually tying in with a drop in atmospheric pressure) with the rest of the day in ‘hang-over’ mode, but on the whole manageable.
Triggers remain much the same: Drop in atmospheric pressure, too much screen time - particularly on a small devise i.e. phone, vibration and certain lights. I seem to be fine with limited brewed coffee, a bit of chocolate and the occasional drink… I eat regular, prepared from scratch, meals and keep well hydrated, and try to avoid or limit bending ‘head below waist’.
Supplements: I still take the Magnesium, grape seed, Vit B and Ginko, as well as the tissue salts which seems to keep my nose clear, although I was never aware of any sinus problems per se.!!
I still feel that my problem stems either from a genetic disposition and/or damage of some sort to the function of the ear./neuron pathways to the brain?? …possibly as a result of the surgery way back then…before laser etc??? I must also add that this past week we experienced a sharp drop in pressure - and yet I was fine!! :relaxed: (probably should not be saying that!!!..)
I would just like to thank everyone on this forum for all the help and support this past year - it has been such a help to be able to communicate with others who understand!!! Not planning to leave, and will still continue to pop in - although my computer does not seem to like the site!!
Hoping many of you will also have encouraging news sooner rather than later!!


#15

That is so good to hear Beth, long, long may it last. X


#16

First mild symptoms: Not mild. First came on after/with an acute case of sinusitis. About 6/7 years ago.
First severe (disabling) symptoms: On and off since then.
Current diagnosis: MAV,
Symptoms (at their worst): “Seasickness” that can last for days/even weeks at worst, though not been that long for a while. Also vertigo from looking up or down, nausea.
Challenges: Found work very difficult. Used to power through more but have had more time off sick in recent years.
Triggers: Stress, tiredness, too much sleep, looking up or down sometimes.
Current medications: Topiramate, Lamotrigine, Diazepam. Possibly going to start Duloxetine (though GP said to hold off on that one even though I have it).
Current supplements: None.
Side effects (if any): Sore ears, agitation (not sure if from meds), waking up a lot in the night, strange dreams. Less appetite.
Current diet: Soft foods lol, just had a crown stuck back in…again!! I do not stick to any particular diet to combat MAV.
Current functionality: Working shorter shifts as recommended by Health and Well being doctor. Some days are better than others. Not sure what percentage I would give myself.
Past meds, supplements that weren’t tolerated: Some of these may have been tolerated if I had started them slower and built up the dose slowly. Amitriptyline (facial numbness, fast heart rate and ear discomfort), Ethosuximide (facial numbness), Pizotifen (was worried about weight gain, didn’t give this one a fair go), Venlafaxine, Propranolol (just didn’t like the way it made me feel), Zonisamide, Topiramate (at too high a dose), Citalopram (just didn’t seem to help with anxiety, made me more agitated, but may have helped with dizziness).
Current doctors: GP, local ENT consultant and Neurologist.