First acute balance issues: April 2015
Number & duration of acute phase(s): One period lasting 5 weeks
Any suspicious physical event/trauma leading up to dizziness: stupidly pointed shower into my ear to clear wax build up, became dizzy 15 minutes afterwards
Start of chronic phase: October 2015
Age at chronic onset: mid 40s
Started medication: April 2016
Stopped medication: October 2017
Number & type of consultants seen to date: 5 (2 ENT’s, 3 Oto-neurologists)
Diagnoses received (one I’m “running with” first): Secondary Hydrops (after suspected PLF), MAV, Hydrops, “Something Central”.
Medications used successfully for MAV: Amitriptyline 20mg nocte
Failed medications for MAV: Propanolol
Non-pharmalogical treatment tried which helped: CBT/Mindfulness, Relaxation therapy. When sleeping : Triple pillow (two for head, one for upper back) so head is up as much as possible without bending neck too much. Resisted lowering head below waist at all times. Drank a lot of Ginger/liquorice tea (latter supposed to be good for inner ear!)
Non-pharmalogical treatment tried which didn’t seem to help :VRT (didn’t do much for me), Magnesium.
Dietary triggers identified: Caffeine!
Any hearing loss in either ear: Yes HF loss in one ear which came on 1 week into chronic phase (prior to that only dizziness and nausea)
Persistent or intermittent tinnitus and character: Persistent hiss in one ear. Was intermittent in opposite ear for a while, but that’s stopped.
Other chronic conditions I’m suffering from: none
Medication I’m taking for other conditions: none
Any personal history of migraines: had one migraine in my entire life before this
Any family history of migraines: none
Any history of ear problems: aside from incident above, very slightly worse HF hearing in one ear all my life (but has never affected anything).
How did friends, family, and doctors react to your symptoms? : gf, (now wife!), didn’t understand my situation for many months and it definitely put a strain on the relationship, but it survived nonetheless. Friends had sympathy, but few understood the seriousness of the condition and a few fell by the wayside.
Symptoms Summary (as at December 2018)
WHAT’S GONE: No more nausea, imbalance, ear pressure, ear pain, extra tinnitus on bending down, significant hearing distortion in loud places, feeling of pressure in ear when driving, vestibular attacks, migraines, brain fog, anxiety, rocking, marshmallow floor, push/pull, vertigo, spinning or attacks of any kind (touch wood!), ear bubbling sensation, significant fluid in middle ear feeling, the intermittent tinnitus in “good ear”, cracking sound from jaw on affected side, migraine brain rumbles/discomfort (usually due to artificial light), head positional discomfort in bed, . All these symptoms are gone! Able to walk through malls and supermarkets with no issues.
WHAT’S ONGOING: Only milder fluctuating tinnitus . I still very occasionally get a small feeling of a little fluid in my middle ear (most days its completely gone). I get an intermittent ear clicking sound. I occasionally feel like I get nystagmus when lying down in bed, I can feel my eye flickering.
MY WORST DAY NOW : Annoying, nagging but low level tinnitus with very very minor unsteadiness.
- April 2015 had a quick shower before going out for lunch, pointed shower into ear to clear some wax having turned down heat and power to minimal levels. Despite this felt uncomfortable. 15 minutes later when walking along street started to feel dizzy. By following morning I was incredible dizzy and imbalanced and very nauseous. What followed was 5 weeks of intense imbalance, nausea and then suddenly … it went!
- no symptoms for 5 months aside from a sensation of fluid in my middle ear every morning
- October 2015 was in meeting at work and suddenly felt very lightheaded and strange as if i’d had a stroke. Became very anxious, went to GP who told me it was probably ‘a virus’.
- Intermittent dizziness went permanent, had marshmallow floor experience when I walked outside, things started to swing left and right in my vision, anxiety worsened.
- Extremely uncomfortable in malls and supermarkets. Strange sensations of one leg being longer or heavier than another when in a place full of artificial light.
- November 2015 started to see specialist who dismissed my ear trauma and told me I had migraine (wasn’t impressed!)
- April 2016 started to be floored in bed with 14 hour attacks every few days. I couldn’t even shut my eyes or I would throw up … had to stare at the wall for hours on end without moving a single muscle. At other times I would lie in bed, stomach churning feeling nauseous for hours on end. Horrific, thought about suicide. Couldn’t look at screens anymore. Despite all this I got out and walked as much as possible, even did housework. Very uncomfortable.
- Specialist called these migraines and told me to take Propanolol … which didn’t work … then Amitriptyline … WHICH DID!
- Ramped up to 20mg and dizziness was more or less in control (but not imbalance, still had lots of that!)
- Daily I would go for very long walks outside along the canal. Initially uncomfortable for first 30 mins I would eventually feel better and realised they were having a really great effect on my anxiety which together with the drugs was ebbing away.
- Attacks stopped for several months until something like November 2016 when I was hit with a big ‘magneto head’ attack. I also started to get spinning attacks. I was very upset because I thought the drugs were protecting me, but they were not doing so completely. (imho drugs don’t prevent vestibular attacks, just the migraines, there’s a distinction)
- Spinning attacks worsened for about 6 months to a year. During one phase I could not lay down without a severe vertigo attack. I nearly threw up each time but somehow managed to prevent myself.
- May 2017 Went on holiday to China, with symptoms still fluctuating. Decided it wasn’t going to ruin my life and that of my wife. I used the hotel gyms … excursions were very good distractions
- September 2017-ish noticed symptoms were improving so decided to back off on Ami. Stopped completely within 1 month. Encouraged by still being able to use computer I persevered.
- May 2018 imbalance started to disappear
- Couple of relapses since … know that I’m not far from losing my balance but its in remission and largely under control
- Tinnitus still haunt me, but many symptoms have gone. Fluid sensations are now very rare
Start of mvertigo journal:
New here, but have been skulking around reading for a little while.
I’m living with a working diagnosis of MAV which came on whilst watching a projector at work. Symptoms started with imbalance and episodes of nausea then progressed to include tinnitus and then vertigo attacks and finally pronounced visual vertigo that made visits to the supermarket very uncomfortable as well as using a computer for any decent length of time. MRI was clear, hearing test shown only minor high frequency loss, though I’ve always had one better ear. Oh and the stress appeared to bring on TMJD. One morning sitting up in bed my right jaw muscle went into spasm and it started to click. Seeing the dentist for that … what a bore. I’ve also had a bit of episodic ear pain and strange sensations of fluid in the ear which tends to clear within a few minutes generally (although i’ve had it last for 24 hours too).
Initially I was on VRT and had Clinical Psychological counselling. The latter was particularly helpful and let me get to grips with my tinnitus which was (and sometimes still is) hard to bear, especially when ‘playing up’. I had a really good remission of the vertigo attacks to begin with without need of any medication. Unfortunately after attempting to return to work the attacks started again.
When I expressed my frustration with my consultant she recommended I perhaps try some medication to control what she believed to be migraines (I feared I had MM).
Started on Propranolol but immediately this started to slow me down and after a week I had scary chest pains so came off it.
My next drug was Amitriptyline, initially 10mg, but the plan was to escalate to 30mg.
The first improvement was sleep - I started to reliably get 8 or 9 hours sleep!
After only 3 days my vertigo attacks stopped and I have been almost 100% free of visual vertigo and fluid in the ear, though sometimes I get a slight pain in the ear. Tinnitus fluctuates in annoyance and generally is worse by bedtime.
I’ve remained on 10mg and have been attack free for nearly a month now, so considering another attempt at returning to work.
However, i’m still feeling slightly dizzy, but its not the same dizziness from before which was sometimes very asymettrical, more a light headedness - is this an effect of the drug? I’m basically about 70% of where I was before I became ill but all of the time and more stable, versus the fluctuating symptoms I had before.
Does this get more pronounced the higher the dose or is it possible I simply am not taking enough to reduce the dizziness?
Is the point at which the visual vertigo goes and the attacks stop a sign that you are taking enough?
More generally, could some of this be TMJD - I read one of the symptoms is dizziness, and interestingly I read that Ami is used to treat TMJD too!
Given my apparent success on a reasonably low dose of this drug, does anyone believe there could be an even better alternative that could eliminate the dizziness altogether?
And finally, has anyone’s T improved once their other symptoms had stabilised? Mine presently is getting more annoying, not less, and more pulsative, particularly later in the day. Hearing doesn’t seem to be degenerating I’m glad to say, but I will get this confirmed formally in a year or two.
Thanks all, and good luck to you all, this is indeed a crazy condition that requires a lot of strength to bear.