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  • Writer's pictureTim Rees

A Drop of My Meniere’s Disease Story

I lay on the piss-soaked floor for hours, the cold tiles oddly refreshing on my temple. This is Meniere's.

Child getting dizzy on a merry-go-round
Image credit: Guillermo Diaz on Unsplash

MENIERE'S DISEASE SWEPT INTO MY LIFE SHORTLY AFTER MOVING TO DUBAI IN 2004.


The only suspect I have was the mandatory hepatitis B vax which I was given twice (2x2) because they lost my paperwork and insisted having twice the dose wasn’t a problem. That’s not a political statement of any kind. Rare side effects can include hearing loss and tinnitus. I’ve included some papers, mainly case studies for you at the end. (1,2,3,4,5) I mention it here in case anyone else had a similar start to their MD journey not to create division. Maybe it had nothing whatsoever to do with it. After about 6 months the dizziness and vertigo stopped and I was left with hearing loss and tinnitus on my right side. I returned to the UK and had all but forgotten about it until it came back with a crunch.


It was 2012 and I was hit as if by an invisible car.


I knew what it was within a millisecond, there’s nothing quite like it, is there? I was parked in a car at the time and had to open the door to throw up on the pavement. A few people came over, I suspect they thought I was drunk, but knew the instant they saw my spectral shade that it was something else entirely. My housemate rescued me, sunlight reflecting from his armour, at least in my mind. Thanks, Nick.


After that things got much worse.


I’ve got a thousand horror stories, but I’ll give you three. The three that float into my memory the most. An early attack pinned me onto a shin-high coffee table. There I was for hours, the staff and clientele not interested in enquiring why I hadn’t moved a muscle for two hours. Essentially in a stress position, my limbs began to go numb.


But to move would be to vomit and I couldn’t face that.


I had managed to call an ambulance and groan the words Meniere’s disease. Of course, this meant they took their time (rightfully, I suppose). Eventually, as their combat boots descended the stairs under which my poor wooden stretcher held me, my head cleared enough allowing me to sit up and talk to them. They told me they had to take me to A&E. I begged them not to. I lived a hundred yards away, although that may as well have been on the moon an hour ago.


The bright lights and loud noises of a casualty department would have been an unendurable punishment.


After a few back-of-the-ambulance tests, they agreed to take me home knowing that there was nothing for me at the hospital, and allowing my pleas to penetrate their job-induced ramparts. I regretted calling the ambulance because I knew they couldn’t do anything. There must have been more important situations for them, but I was frightened and defenceless. At the time I was an 89 kg cross fitter and full-time personal trainer. I could look after myself, but not after the Sword of Damocles had fallen. I was so vulnerable.


Easy pickings in central London.


Soon after, just a few seconds after leaving my flat, that invisible car hit me again. Fittingly, right in the middle of a road. Rather than hitting the deck, I managed the critical few steps towards the pavement to relative safety. But I had no control. I crashed into the railings surrounding my building. For a second, I thought I’d jammed my head between two cold iron bars. I was stuck fast, but realised it was the force inexplicably generated inside my ear like it hid a 100-kilogram gyroscope.


I could only drag my head along the railings, bumping from one space to the next until I reached my door.


I had to keep my eyes shut, so I prayed for muscle memory to help me slide the key into the lock as I’d done a million times before. Then I was staggering up the two or three flights of stairs, hanging from the bannisters like a child pretending to cling to the rigging of a pirate ship. Thankfully, my bed swallowed me whole.


Another time, I found myself in distress in a public toilet.


I lay on the piss-soaked floor for hours, the cold tiles oddly refreshing on my temple. Thankfully people tried the handle a few times, then got bored and found another loo. I called an Uber and got home after losing a whole afternoon’s PT sessions.

The money Meniere’s has cost me makes my heart beat faster.


All the doctors I saw, both NHS and private. All the alternative practitioners I tried. All the missed sessions, all the ruined nights out, all the fatigue, and the forgotten ambitions. The hopes and dreams of a young man without the energy to realise them turned them into stagnant pools of resentment and regret. I was down but not out.


I trudged on.


Studying nutrition at university, I constantly tinkered with my diet, finding food triggers — there were many, some easier to reveal than others — and improving my gut health. I went from multiple attacks daily to none. The dietary stuff was amazing. But why had I suddenly developed all these allergies and this self-harming immune system? What was it that had reawakened this beast from its 7-year slumber?


I couldn’t have predicted my response to Mum’s phone call.


She told me she had stage four pancreatic cancer. The doctor had predicted a few short months to live. I cleared my diary of all appointments, pulled the clutter and stuff from my bedroom and set about creating a clean and chaos-free space. A grown-up’s space. I needed the extra bandwidth to deal with what turned out to be three horrendous months. I realised that physical clutter and materialism can weigh on our minds stealing energy that could be spent on more precious pursuits. In the corner, I replaced boxes of camping gear and motorcycle kit with a large potted plant and then unwittingly over-watered it.


Silently, over many months a fungus set in.


A perfect circle. A hidden mould metropolis that fed on the carpet fibres and offered no clue as to its existence. No smell, no seeking filament to further the fungal federation. Nothing but the destruction of my health. Years later, time made up of days battling some symptom or other, I discovered this corrupting circle after knocking the pot with a vacuum. Lifting the terracotta conspirator away, I was presented with a sea of inch-long tentacles. They had eaten all the way through the carpet but were obviously finding sustenance from somewhere.


They had stolen my health, sucking it from me as I slept like a hovering dementor.


Gasping I immediately had a drop attack, my face almost landing slap bang in the circle’s centre. I crawled into bed. A few hours later, I found the strength and gleefully hacked away at the carpet before throwing it away. That week things got better without me having to live like a Shaolin monk. But it had destroyed my gut and turned my immune system into a shivering old man clutching at a bolt action taking potshots at anything and everything that moved.


I was a wreck, physically and mentally.


The only reason why I wasn’t completely destroyed was that I had discovered a diet that worked as long as I stuck with it. Inevitably I went around in circles, but at least I had a weapon so I never lost hope. The diet is Doug Kaufmann’s Phase 1 antifungal diet. Look, it’s not a straightforward jump from a mouldy bedroom to a chronic fungal infection. You don’t catch candida from a plant pot.


But these things can destroy your immune system allowing fungus a foothold from which it launches attacks against you. (8)


Most of this goes on in the gut, the small intestine actually, but the chemicals these mushrooms-like things secrete cause problems far beyond. Perhaps they’re messing with the delicate vestibular system, maybe even setting up shop in the inner ear secreting oxalic acid as fungi do. Oxalic acid binds to calcium, the inner ear being a rich source, forming calcium-oxalate crystals that wobble around like the gyroscope that pinned me to the railings. Maybe when they get too large they plug your hearing by preventing the vibrations of those little bones in the ear — just a thought. A low oxalate diet restored my life-changing hearing loss on the left side (the right was knackered since 2004).


Remember, the gut houses most of the immune system, 70–80%. (6)


Also, neurotransmitter production goes on in large part in the gut. Serotonin, dopamine, acetylcholine, GABA, substance P, and glutamate are constructed there with nutrients from your diet which is why gut problems can affect our moods & motivation so much. (7) It creates a vicious circle, as vicious as that circle in my bedroom but even less visible.


I don’t have attacks anymore and haven’t for years.


No dizziness either. I still have poor hearing, particularly on my right side, but my left ear I control with diet. My tinnitus is always present like some demented bagpipe player with everlasting lungs but it improves slowly the better my diet and lifestyle are. Stress and sleep are prime movers in the severity of the noise.


Anyway, when I started this post I wasn’t expecting to write all this, but as you may be able to tell, I’ve had fun with it.


Don’t lose hope.


REFERENCES:
  1. Biacabe, B., Erminy, M., & Bonfils, P. (1997). A case report of fluctuant sensorineural hearing loss after hepatitis B vaccination. Auris, nasus, larynx, 24(4), 357–360. 10.1016/s0385–8146(97)10013-x

  2. Sood, A. B., O’Keefe, G., Bui, D., & Jain, N. (2019). Vogt-Koyanagi-Harada Disease Associated with Hepatitis B Vaccination. Ocular immunology and inflammation, 27(4), 524–527.10.1080/09273948.2018.1483520

  3. Bonfils, P., Biacabe, B., Potard, G., & Aïdan, D. (1996). Une surdité de perception fluctuante après un vaccin anti-hépatite B [Fluctuant perception hearing loss after hepatitis B vaccine]. Annales d’oto-laryngologie et de chirurgie cervico faciale : bulletin de la Societe d’oto-laryngologie des hopitaux de Paris, 113(6), 359–361.

  4. Orlando, M. P., Masieri, S., Pascarella, M. A., Ciofalo, A., & Filiaci, F. (1997). Sudden hearing loss in childhood consequent to hepatitis B vaccination: a case report. Annals of the New York Academy of Sciences, 830, 319–321. 10.1111/j.1749–6632.1997.tb51903.x

  5. DeJonckere, P. H., & de Surgères, G. G. (2001). Acute tinnitus and permanent audiovestibular damage after hepatitis B vaccination. The international tinnitus journal, 7(1), 59–61.

  6. Wiertsema, S. P., van Bergenhenegouwen, J., Garssen, J., & Knippels, L. M. J. (2021). The Interplay between the Gut Microbiome and the Immune System in the Context of Infectious Diseases throughout Life and the Role of Nutrition in Optimizing Treatment Strategies. Nutrients, 13(3), 886. 10.3390/nu13030886

  7. Chen, Y., Xu, J., & Chen, Y. (2021). Regulation of Neurotransmitters by the Gut Microbiota and Effects on Cognition in Neurological Disorders. Nutrients, 13(6), 2099. 10.3390/nu13062099

  8. Abarca, M. L., Bragulat, M. R., Castella, G., and Cabanes, F. J. (1994). Ochratoxin a production by strains of Aspergillus niger var. niger. Appl. Environ. Microbiol. 60, 2650–2652. doi: 10.1128/aem.60.7.2650–2652.1994

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