Big update

Has been a while since I last wrote here. Usually this means either good news, or bad news. In this instance, some good news. There are a lot I've learnt, and I'll try my best to summarise it as best as I can.

As it stands, the last attack I had was in late July. This means I have been in remission for the last 15 or so weeks and here is what I have done differently

• Reduced caffeine consumption
• Reduced Sodium Chloride consumption and subsequently gone back to normal salt
• Absolutely removed as much intake of any Flavour Enhancers, MSG, 621-635, Hydrolysed Vegetable Protein, Yeast extract
• Remove exposure to yeast

Here are some of the experiences as above

• Absolutely one of the worst things you can do if you are an athlete is to have stimulant such as caffeine as a pre-workout or worst, high dose daily caffeine consumer. I found that caffeine masks bodily pain, and causes the person to be chemically imbalanced. There is a huge tendency to overtrain without adequate rest, under eat and push yourself to exhaustion. It also results in the lack of recovery, perhaps through the rejection of nutrients. in one word, this is a huge contributing factor. I now drink one shot of coffee every second day instead of 4-6 shots every day.
• Reducing salt for someone who exercises a lot is dangerous. If I was to put a number to it, I would be able to train around 30% my normal activity, resulting in what I would describe as capitulation of muscle and motor movement ability. Usually the first symptom after a short training session begins with cramps in the limbs, and a lack of co-ordination. Magnesium in this case, does not compensate.
• I would make this my greatest contribution to an attack. And yes, I know, glutamates are extremely abundant, literally anywhere. But for whatever the reason, be it known or not, the chemical or added form triggers either an immediate migraine, or Meniere's symptoms resulting in the ear blockage, and then finally shows up as vertigo when it clears. Calcium glutamate crystals in the middle ear? That is my suspicion.
• Bread yeast seems to make me feel fragile and unwell. Is that an allergy or a catalyst in yielding of histamine?

Lastly, I standby that I still have a strong suspicion that in fact, a very large number of Meniere's cases are a form of Vestibular Migraine and so triggered by the foods we eat, whether it is immediate or not, but I am not medical researcher/doctor.

I hope you are well. Will aim to write back after the summer, where most of my attacks historically has been grouped. 

Vestibular Rehab exercise

Just a really quick update.

There is a silver lining in the whole adaptive and vestibular rehabilitation exercises. For whatever chemicals are released by the brain/medulla to create the vomit response when we have dizzy spells, most sufferers will agree this makes you extremely tired. So tired in fact, you sleep for a good 4-8 hours after an attack.

Well I can tell you being an insomniac, that VRT exercises releases the same kind of chemicals that help you sleep. I've been doing this exercise without stop for the last 3 months, with the exception of 2 days. After every exercise, absolutely destroyed. Yes it is a silver lining but it does help you get some much needed rest that your body is probably asking for.

TMJ Disorders and Meniere's

There are claims going around claiming the effects of TMJ Disorders (the weird joint at the top if your jaw that pops in and out, right next to your ears) and that of Meniere's. I went to consult a holistic dentist recently to discuss the impact of my jaw alignment, and yes it is significantly out. I've also been very consciously trying to relax my jaw muscles - and I am very sure after weeks of training, I am beginning to get somewhere.

I don't sleep particularly well, so I am very conscious at night if I am clenching. Though I can tell there is a strong correlation between stress and late night work, or excitement against grinding and even clenching my teeth - it is a habit I'm starting to break.

One thing I wanted to discuss is statistics posted in pubmed. This pubmed article discusses the aspect of Meniere's against TMJ and Cervical Spine misalignment. If you look at the article, it states that a very large percentage, 24 out of 31 patients had improvements over a 3 year period against symptoms of Meniere's. 

Subsequently, Dr Gacek pubmed study shows a 90% control of Meniere's over 211 patients over 8 years. Let me put it this way. Either those 2 statistics show a cross correlation over the 2 components, or, the way I perceive this is many patients have reached burn-out phase during these 3-8 year periods and are into remission for MD.

I had quick correspondent with Dr Daniel Brown of Sydney University, who by the way, is really helpful with advice (thanks Dr Brown, I hope you do well). He pointed out the dangers of following pubmed articles, which I have been warned before by my R&D friends, especially with regards to Meniere's treatment. As he was intending to begin a double blind study on Anti-virals for Meniere's patients - which for whatever reason didn't fly - he did state that he estimates that 40% of MD sufferers would benefit from taking Anti-virals.

Without confirming the reasons for his conclusion, I can only speculate he must strongly agree with the findings of various prior Dr's on dissection cadavers of Meniere's patients - there is strong suggestion that various viral proteins, including those of HSV-1 is observed in the Vestibular ganglia of the patient. The question is, why does it flare up from time to time, creating this inflammatory mess we have to deal with whilst others are dormant?

Will you take Anti-Virals such as Valtrex for the rest of your life to control Meniere's flare up?  

VOR gaze exercises

Yet another attack on Jauary 2nd, this time enough to land me in hospital with difficulties with breathing, and an abnormal ECG. I guess I must have gotten into shock. Long story short - I decided if this is going to be the rest of my days, I might as well retrain my brain get used to it. So I decided a different approach is required.

You may recall on an older post, I talked about neuroplasticity and rewiring of the brain. I decided to research how dancers and ice skaters can spin round and round and resume a technical balancy move, where most lay persons would fall over. So it turns out this is a trick with 2 parts to it. 

The first part is the trick achieved through spotting. Thanks to various people who have helped me out, I'm now practising this technique, and with a surprising realisation. I can spin one way without creating nystagmus, but another way results in immediate nystagmus after just one revolution. So it is likely I have a problem with the left side of my ear. This pairs well with my tendency to have blocked ears on the left side. Anyhow, I was able to use the spot to override the involuntary nystagmus, if only just!

The second part of this trick, is telling the mind, specifically the cerebral cortex, that I am not sick, that the world isn't falling apart. This part I do through mindfulness, together after the spinning exercises. It does help me understand the common feeling of impending doom when the spins take over, and the anxiety/panic attack overwhelms. 

There are 2 forms of exercises that I am trying. 

VOR Gaze exercise

The first is the simple VOR gaze exercise. So apparently there is a reflex which connects closely to the eye[1]. There are 2 dimension to this problem, the vertical and the horizontal plane. For me, it is clearly the horizontal plane which contributes to my vertigo. You should definitely pay attention to your nystagmus next time it happens so you can see. Anyway, the exercises aims to disconnect and override this tendency of your eyes to follow become enslaved to this reflex, and allow the cerebellum to control your gaze. 

[3]I started off firstly with my thumb in front of me, then constantly moving my head side to side, one cycle every second for a minute. I found this really hard to do at first. After 20 seconds I felt nauseas and my eyes hurt. However, this is a good time to sit quietly and watch the sensations and emotions happening in the head - try and remain calm and watch, and reiterate that this is not impending doom, everything is under control. 

It didn't take long before I am now moving my head and thumb in opposing directions, fairly quickly, and not have the feeling of motion sickness. Best of all, it's only been a week since I started the exercises.

Spin and spot

This is especially difficult for me. I pick an object on the wall and spin, basically in one direction and then spot the same object again. Then I spin the opposing direction and repeat the same. This is the second stage exercise and I'm only achieving one revolution so far, and already experiencing nystagmus. However, the trick is to stare at that one object no matter how difficult - overcoming the nystagmus.

This has the same effect, but much much more violent than the VOR gaze exercise above. I want to thank my friends (who I cannot name to protect their privacy) who have given me some insights into these techniques. 

I hope I can achieve a point where, I can override all nystagmus on command - and be able to retrain my cerebral cortex against sending motion sickness signals that are so debilitating, even, in the next attack. Although I prefer not to have another attack anytime soon. Will update if this brings success.

1. http://www.neuroanatomy.wisc.edu/virtualbrain/BrainStem/13VNAN.html
2. http://neuroscience.uth.tmc.edu/s3/chapter08.html
3. https://www.youtube.com/watch?v=nnGSQbDMMgA