First acute balance issues: head spins, marshmallow ground, depersonalisation, ear fullness
Number & duration of acute phase(s): Initial bad six months then permanent ear fullness/tinnitus, twice yearly bad week for many years. 8 years ago: onset of chronic migraine, then morph to MAV again, 2 months almost bed ridden in summer 2018.
Any suspicious physical event/trauma leading up to dizziness: Labyrinthitis infection 6 months before when 7 months pregnant, traumatic birth experience and ongoing baby health issues. Worn out/stress
Start of chronic phase: June 1996
Age at chronic onset: 32
Started medication: January 1997 (Serc diagnosed with Menieres)
Stopped medication: April 1997
Number & type of consultants seen to date: 1 Neuro-otologist, 6 ENT’s.
Diagnoses received (one I’m “running with” first): Migraine Variant Balance Disorder, vestibular migraine, CPTSD, Migraine Equivalent, Endolymphatic Hydrops, Menieres Disease
Medications used successfully for MAV: Pizotifen
Failed medications for MAV: very low dose pizotifen, propanalol, very low dose amitriptyline stemetil, serc.
Non-pharmalogical treatment tried which helped: regular sleep pattern, no caffeine, no alcohol (wails!) no clubbing/live music, avoiding over stimulating environments, travelling and smells
Non-pharmalogical treatment tried which didn’t seem to help : Cawthorne- Cooksey exercises. Not sure about vitamins (magnesium and B2)
Dietary triggers identified:alcohol
Any hearing loss in either ear: initially low frequency bilateral hearing loss but stabilised to “normal for age”
Persistent or intermittent tinnitus and character: ear ringing, hitch pitched whine, fluctuates in intensity
Other chronic conditions I’m suffering from: None
Medication I’m taking for other conditions: None
Any personal history of migraines: Terrible migraines started after having meningitis when 21, abated after 4 years. Suspect I had migraine as a child in form of abdominal migraines, motion sickness.
Any family history of migraines:No
Any history of ear problems: No
How did friends, family, and doctors react to your symptoms?: Generally poorly. GP refused to refer me, told me to “find a way to get steam in my ears to clear them” (I kid you not), other GP’s thought I had anxiety. Generally had real difficulty getting GP referrals throughout, have had to pay privately and then get on NHS list. ENT who misdiagnosed Menieres assured me it was NOT “all in my head.” (Thank you) ENT who diagnosed VM said “if I had all the symptoms 24/7 I said I had, I would have committed suicide by now.” Friends couldn’t believe you could be dizzy or have “migraine” 24/7 or that you could live with lab type symptoms long term. Partner sympathetic, extended family call it “my weird ear thing”, not sympathetic or interested. Felt very alone.
(Your current state)
What’s Gone: (what symptoms you had but no longer get)marshmallow ground, painful vomiting migraine headache, spinning vertigo, depersonalisation
What’s Ongoing: (what symptoms you still get)ear ringing and ear fullness. milder left sided hormonal headache, small head spins, general feeling of being off balance, body out of sync. Meds have dampened symptoms but not eliminated fully.
My Worse Day Now: (description of the worst day you get now) Ear ringing,ear fullness, feeling of being slightly off balance, one or two mild head spins, some left sided head pain, fuzzy head, difficulty concentrating, may drop off whilst working on laptop.
(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)
- It all began when …I had a head spin turning around to grab some cups to wash at daughters playgroup. Over the next weeks had more spins and marshmallow ground feeling when out walking. Then developed feeling of ear fullness and tinnitus.Depersonailsation and anxiety started to creep in.
- The first thing I did .Saw GP who said it was caused by earwax- had ears syringed to no effect. Went repeatedly to GP who refused to refer me to specialist. Paid privately to see Consultant ENT, had lots of balance tests, Caloric table test, MRI, hearing test showed bilateral hearing loss at lower frquencies, a little more pronounced on left side. Diagnosed with Menieres, started on Serc (which GP wouldn’t prescribe so had to sell my jewellery and get private prescription), Stemetil to use for a few days if had an acute “attack” and a diuretic, went on low salt , hyper hydration diet. Serc had no effect, came off after 3 months and my symptoms levelled off over the year but some feeling of ear fullness has never gone even on my best days. My hearing didn’t deteriorate at the rate expected with Menieres so the diagnosis was changed to Endolymphatic hydrops. Tried 6 months of Serc this time, no effect. Had another baby and felt really good during pregnancy, so hormonal aspect came into play. I lived fairly normal life with ear fullness and tinnitus fluctuating, menstrual headache and one or two bad weeks each year so hospital discharged me. They said my body had compensated, that I’d have to live with residual symptoms and they’d likely fade but as Serc hadn’t worked there was no other treatment. Consultant was uneasy about Endo diagnosis and said I might have something he had heard about at a US conference called" migraine equivalent."
Lived fairly normally for next 12 years with mild symptoms and lifestyle adaptations but got more fatigued than others. 10 years ago I developed migraine headaches again that got worse in intensity and frequency. Saw NHS ENT, diagnosed with VM, started a migraine diet and given very low dose of pizotifen (1mg per day), discharged. GP wouldn’t up pizotifen and felt it hadn’t worked. Symptoms abated without treatment.
2 years later I started to have very bad menstrual migraine -given Sumatriptan, worked well for pain but left me feeling like I’d been partying all night and wiped out. Eventually headcahes increased in frequency. I needed too many triptans so was referred to a Neurology headache clinic, given propanalol which made me feel very faint and didn’t help with headaches but specialist kept ramping up dosage until I begged to come off it. Also had 2 lots of Occiptal Nerve Blocks, no effect except to make me more dizzy (apparently this was “impossible”). I also started HTHYH diet. Started on Amitriptyline with GP, headaches abated to 2 menstrual ones a month and I slept better but the dizziness started to creep back. Specialist said that dizziness related to migraine could only happen as part of the prodrome for a short time, so my symptoms were not part of migraine syndrome and said I should go back to ENT. After getting to 30mg on Ami for 6 months, GP told me to taper off and stop. Once I was off Ami, I had 6 blissful months where apart from some mild ear fullness I felt fantastic, like I could breathe and was fully me again.Heaven.
However, the dizziness crept back and in summer 2018 I had the most acute attck ever and was basically almost bed bound for 2 months, lost lots of weight, sometimes had to crawl to the bathroom. GP gave me stemetil (had a really bad reaction to it this time) and Serc (which still did nothing), he said it was due to stress and anxiety and that I should consider taking an Anti depressant and totally refused to refer me to Neuro-otologist. Paid to see Dr S privately, went on pizotifen October 2018, building dose really slowly to 4.5mg( the maximum dose) daily. Now feeling 80% most days, still not quite there and peri menopausal symptoms keep throwing a spanner in the works and irritating my poor beleagured brainstem. Not been a smooth path. I was warned I was difficult to treat as I’ve gone untreated for so many years and that it would be a long road with lots of setbacks.
Start of Journal
Today I …finally got around to filling in my history on this site, over two years since I first posted when I was in a dreadful state and scared silly about taking Pregablin which had been prescribed by my specialist but which my GP didn’t want to prescribe due to issues with its addictiveness and difficulty to come off. I paid to see the specialist again and started on the much more benign pizotifen instead. I’m in my mid fifties and peri menopausal and my symptoms are definitely exacerbated by hormones going crazy. My partner keeps marvelling at how much I’ve improved compared to the wreck that I was two summers ago which is good to hear as I sometimes doubt I’m improving. I felt pretty good in the summer but the past month or so have had worse daily symptoms such as more ear fullness and ear ringing and have had breakthrough left sided headaches. I’m sure the meds are dampening things down but not quite cutting it as much as a few months back in the face of hormonal shifts. I may be adding in Clonidine in the next few weeks and if that fails then Candesartan.
In the early days of dial up internet I used to sometimes visit a US based site for Menieres, Vertigo and Tinnitus (MVT) and was horrified by people who were coping with symptoms decades on as my ENT had assured me that after 3 years or so, that I would look back on it all “like a bad dream.” . So I am always a bit reluctant to post here with setbacks as good news is always more welcome. I remember threads discussing the new concept of “migraine equivalent” which some posters were being diagnosed with in addition to Menieres and around which there was a lot of debate. I think that thankfully, doctors are much better and quicker to diagnose MAV these days and we have Neuro-otologist’s who know what meds to prescribe and at what dosages as prescribing of too low a dosage for too short a time has been a problem for me with GP’s in the past. Hopefully in the next few years as more research is being done into inflammation in the body that some new light will be shed on what is going on with us.
I’d like to thank everyone on this site who has responded to my posts and for just being here. I wish everyone a better, MAV reduced New Year.