Menieres has ruled my week this week.
I’ve just realised that’s a first. I’ve named my condition in this blog. It’s not a word I like.
I think I naively hoped that if I wrote about my determination to overcome M, I’d somehow be able to will it out of existence … but unfortunately not. So far this week I’ve had two vertigo attacks, two wipe out days of chronic dizziness and I’ve had to request a leave of absence from my volunteering job.
One word of advice – hope beyond hope that you don’t develop a condition that the medical profession is completely flummoxed by.
No one really knows what M is, how it starts or even how to deal with it.
Most of the treatments available are pretty blunt tools. The only drug certified by NICE for M increases the blood flow to the ear. But us M sufferers don’t have a problem with reduced blood flow, we’ve got an inflammation in our inner ear.
Want to learn how to live with your tinnitus? Go on a mindfulness course. I’m not dissing it. It’s amazing that it’s available on the NHS but the fact is it’s a course to help you to try and perceive this noise in your ear as a friend rather than a foe. It helped me a little. But it can never be a cure.
Want to stop your vertigo? Doctors can inject your ear with a drug called gentamicin but it will probably destroy your hearing too. Fa la flipping la. Talk about Russian roulette.
This week Rhys and I sat talking late into the night. We were trying to decide whether it was worth my while having another injection of dextamethasone (a steroid) through my ear drum. It causes a vicious and deeply unpleasant spin when it first goes in. The first injection had a positive impact on my hearing and tinnitus. The second did nothing. Both times I felt shit for several days afterwards. In the end we decided it had to be worth a punt so I’ve had injection number three today.
If you’d have asked me three years ago whether I’d willingly have a surgical procedure with no clue as to whether it would work or not, I’d have laughed.
In the early days I researched the hell out of the condition, convinced I could find a cure. I have tried so many things and, because I’m a glass half full kind of person, I hope each time that my new discovery will crack it.
So far I’ve tried:
- Medication: Betahistine
- Diet change: Drastically reducing my daily salt intake.
- Dental treatment: A night-time gum shield at a cost of £600 after my internet research suggested that my symptoms were really caused by tempero-mandibular joint dysfunction. Incorrect!
- A pot pourri of various supplements including some only available in the States, which American friends have had to order on my behalf. They include Pyclogenol, Lysine, bioflavonoids, Magnesium, vitamin B2, gingko biloga. And many more whose names I’ve quite frankly forgotten.
- Medication: Propanalol to treat the migraines associated with M
- Diet change: Removed all migraine triggers from my diet including chocolate (yes my beloved constant companion chocolate), milk, cheese, red wine, citrus fruit, Chinese food
- Herbs: A herbalist recommended I try St Johns Wort (an anti-inflammatory apparently) and a collection of odd sounding herbs in a tincture (including dandelion I think). But these seemed to be make me more rather than less dizzy.
- Injections of the steroid Dextamethasone through my ear drum
- Diet change: Gluten free
- Diet change: Sugar free
- Exercise change: No more long runs. At one point intense exercise seemed to be triggering my symptoms.
And the impact? If I’m brutally honest, I’m not convinced any of the above have really made a difference. But some I continue with because I’m wary of what might happen if I don’t.
This week I spoke to a nutritional therapist who also has M. She claims that by controlling her diet she is now living symptom free. My jaw dropped when she told me she has no hearing loss and no tinnitus. She also claimed that one of her patients was house bound when she started treating her and is now back at work.
This information has really messed with my head.
As the list above may attest, this journey has led me down lots of dead ends. I’ve lived off false hope so many times and I’ve discovered that it’s risky for my mental health … when you allow yourself to hope, the resulting low when the next treatment doesn’t work, is crushing.
But I’m addicted to hope. If you don’t have hope what else is there? So I’m going to chuck some more cash at the problem, employ the nutritional therapist, abstain from gluten, dairy, sugar and alcohol for the next month and see where it gets me.
BRING IT ON!