Firstly, thank you for such a great forum and source of information. I have been vertigo free now (and only just feeling as though I can say that without jinxing it!) for 5 months! Here, as briefly as possible, is how I got through a challenging few years. I think my story is one that is very similar to a few others I've read so I guess this is just a reinforcement of something that might just work for some, here goes: In 2017 I had a few small spin outs, all within a space of 2 weeks, they didn't last long, I had no idea what was causing them, just had a wee lie down and they passed within minutes. This led to a huge vertigo attack. Not knowing what was going on, I was driven home from work, my husband then took me to our GP (we live in a small rural town in New Zealand), my doctor gave me a shot of valium and sent me home, the attack lasted 6 hours. Very sick and very scary. We have two young boys, at the time they were 4 and 6 years (I was a month away from 40 (it's all downhill from there they say!)) - "This can't be happening, I have kids depending on me, I have work, this needs to never happen again!". Besides leaving me with annoying tinnitus, I was symptom free for a whole year. I played squash, did yoga weekly, started training for a marathon (got up to 30kms in training), trying acupuncture and a chiropractor for tinnitus. Early 2019, more attacks, saw an ENT specialist privately in June, MRI, hearing tests, diagnosis - Meniere's disease. Low-sodium diet. More attacks. Betahistine started September 2019 (16mg 3 x daily) - side effects lost weight, horrible brain fog, major anxiety (30 mins drive to and from work, working school hours 9 - 2.30, 4 days a week, design, marketing, photograph, I have a very understanding amazing boss!), felt like I was dragging myself through every day, hoping for the best, tinnitus and ear fullness fluctuating from day to day. Never a clear day, anxious, like tummy curdling anxiousness! Stopped yoga. Stopped skiing. Stopped training. Stopped mountain biking with the kids. GP suggested halving betahistine (8mg 3x) and taking bendroflumethiazide - side effects, eye flickering, movement in my vision! Stopped taking bendroflu after 3 months, February 2020, I also stopped taking a strong B complex as in my last blood test my B12 level was 1400 (standard is between 400 - 600). * I started taking Vit C with Covid looming. April 2020, Covid Lockdown! We high-tailed it to our family bach (beach holiday home, sounds flash but it's really not, we're talking Kiwi style hut by the beach), attacks ramped up, one to two attacks a week! I didn't feel overly stressed, I wasn't stressed about covid, I felt the only stress in my life was this blasted disease, ear pressure and tinnitus! I did have to juggle working from home, kids schooling but not much else. Lockdown at the beach - no complaints there. Over the lockdown I started researching... I came across Piano Joe's website - wow - this sounds good! I read from the forum. JOH regime - great I will try this. Benny Hill Vitamin B5,B6 - I've always taken a strong B for a busy life and thought it worked well. Antivirals, ok it's always an option. In May 2020, I started out on the JOH regime. I also took B5 and B6. Early May I also started on a 2 week course of antivirals (Valacyclovir), and had a few days of good clarity! Mid antivirals I had an appointment with an ENT specialist in the public system, I discussed antivirals with the specialist, she didn't think much about this method of medication for Menieres but was happy if my GP was happy for me to continue. The specialist's advice was to up the dose of betahistine 32mg, 3 times a day!!! (this lasted 8 weeks, I felt horrid and lost 3kg). Meanwhile, my two weeks of antivirals ran out, 4 days later I had the worst vertigo attack - my husband had to help me throughout, it was traumatising to say the least. I immediately called my GP (in tears) and got straight back onto more antivirals, Richard R. Gacek plan: 3 weeks of 3gms a day, 2 weeks of 2gms a day, then continue with 1gm a day, and a monthly kidney and liver function blood test. Things are good, but not "normal". Through this time of research I kept coming back to and re-reading Joes page - Allergy test. Done. Holey moley, can of worms! Top of the list: Sucrose (Table sugar), Alcohol, Candida Albicans, Moulds, All dairy, Sodium sulphite, Caffeine - at the bottom - Citrus (*ascorbic acid!), Wheat, Gluten, yeast etc. I cut out as much sugar as I could, dairy was easy (I love coconut milk/cream), Caffeine was easier than expected, I stopped drinking wine, and had an occasional G&T with diet tonic. Mould - I have always suspected mould! We have leadlight windows and black mould builds up around the lead easily. Gloves, mask, gone was the mould from our home, gone were the indoor plants, the shower was now spotless! Candida - As I gradually started feeling a little better, confidence returning, I decided I wanted to try the antifungals. My GP was weary but willing to let me try. I did 200mg a day for 2 weeks. 1 week in we went down to the bach, I weeded the garden all weekend, exposing myself to mould hidden under the wood-chip covering the garden, thinking "I should be ok, I'm taking antifungals" - BOOM Monday afternoon, spin out! Not bad, but definitely something. No more gardening without a mask for me. I also found surface mould in the bathroom, under the water cylinder (we are in the midst of renovating), around the windows and on the outside of the bach. This could be why my vertigo ramped up over the 6 week lockdown! We have since re-visited and sprayed - good bye mould. I link the anxious tummy to the Vit C, I did suspect Vit C as I had a few anxious attacks after taking a tablet and the allergy test really confirmed my thoughts, I haven't had an anxious tummy since I stopped taking it. It's been 7 weeks since I finished the antifungals and I'm feeling good - I would say about 90% most of the time. The tinnitus is getting less and less. In fact, in my last hearing test there was improvement in the hearing in my left ear! The fullness has mostly gone, some very light fullness occasionally. I've started running, yoga, mountain biking with the kids and even managed a couple of ski days before the season finished. My daily regime is: In the morning before food, 1 x Probiotic, 1 x Garlic, 1gm of Valacyclovir, 10mg Vinopocetine, 1/8 tsp Pine bark (Pycnogenol). At night Garlic and Gingko Biloba. And just this week I've stopped taking betahistine - scary! So thanks again to this forum! Life is getting good again.
Very nice story, thanks for sharing. You are fortunate to have such a wonderful GP, he/she is a keeper.
Great news, Tina! I pray your good health continues. I just wanted to mention, for anyone who reads, that people with a "Citrus" allergy might be allergic to the citric acid and not the ascorbic acid (which is what Vitamin C is). You mention that you are senstive to Vitamin C so perhaps that's the truth for you. However, I for one am super sensitive to citric acid (yet not ascorbic/Vit C). So yes, citrus fruits are obviously out but many other fruits are out as well (such as strawberries & other berries). On top of that (ie. a real sensitivity to citric acid, fresh out of the lemon), interestingly enough, citric acid is a food industry additive to a vast number of foods (read those labels!) and it is actually made by some process that involves extracting it from a mold! So for people (like me) who are also sensitive to mold... this makes it a double whammy. I was doing great for three months and then two weeks ago I had another vertigo attack. I realized after the fact that something I was eating the day prior contained, unbeknownst to me, significant amounts of lemon juice AND added citric acid. Great. But at least I am making a connection between not only the viral component to Meniere's but the food sensitivity/allergy part. Normally consuming lemon juice would cause a cold sore for me (hello Herpes!) but here it caused the vertigo; I'm quite sure of that. Thought I would share in case it helps anyone else.