Status Up-Date: Still Well!

I've had a few requests lately for an up-date on my health since starting the Stephen Spring Treatment Protocol (SSTP*).  As of June 11, 2015, I will have been on the treatment for exactly 21 months.

The first 3 months of this treatment were significant only for faster than usual cycling between my usual episodes.  Symptoms during this time were otherwise the same as they had been in the years before I started this, which included severe brain fog, frequent intense disequilibrium, chronic intense fatigue, roaring tinnitus, and vertigo or near-vertigo depending on my limited response to various treatments I had tried up to that point (IT dex, IT gent, antivirals, and allergy shots to name a few).

Between months 3 and 6, I began to notice periods of feeling well which lasted weeks rather than the usual few days.  Symptoms during my episodes were also becoming less intense and shorter.  Amazingly, the episodes started resolving without the occurrence of vertigo or near-vertigo attacks.  That was a first-ever after almost 5 years of vertigo or near-vertigo punctuating my attacks.

During this time, my hearing also improved significantly.  To better illustrate what I mean, my speech discrimination had been consistently declining and hovered between 55%-65% between January 2011 and October 2012.  In January, 2013 it had fallen to 20%!  It had crept back up to 40% a couple of months later and again hovered there.  I started this treatment in September, 2013 and one month later I happened to have a hearing test scheduled and found the results of the speech discrim then were 75% .  Three months later they bounced up to 95%, a level I had not had since the first months after diagnosis in 2009.  Today I still use my hearing aid because in real world settings the tinnitus interferes with my speech discrim.  I would guess that currently, if I had a professional audiogram, that my speech discrim would probably be consistently greater than 80-85%.  I want to say that not everyone I have spoken to on this treatment has had nearly the improvements in hearing that I have had.  I don't know why, but it seems most people are not reporting such drastic hearing improvements.  Though some have observed more conservative improvement.

By the 6th month of treatment, I had developed a whole new symptom which were these short, intense bursts of dizziness.  They were not preceded by aural pressure, changes in tinnitus, brain fog, or generalized fatigue as my dizziness and vertigo had been before.  They would just happen out of the blue maybe 3 to 6 times per day.  Once I realized they would not turn into full-blown vertigo episodes, I learned to live with them  The best explanation for these was they were probably a result of the changing shape of my endolymphatic sac and the resetting of the valve of Bast.  By about the 9th month, they disappeared as quickly as they started.

One year into treatment, I continued to have longer periods, maybe 4-6 weeks, of feeling 95% normal.  These would be sandwiched between symptoms of increased tinnitus, mild-ish brain fog, and fatigue lasting 12-72 hours.  As of now, I would say this is pretty much where I remain.

Today I continue to take the vaccine, albeit at a lower dose in the last few months to see if I can sustain the effects.  I work 20-30 hours per week and am able to do all the things I did before Meniere's without fear of an attack.  I make plans and am able to keep them.  Even when I am experiencing symptoms, they are not so severe that I cannot carry out whatever it is I need to do that day.  Yes, some days are still a little rough, but NOTHING like they used to be.

Overall, I don't take any of this for granted.  I don't believe I am cured, only that this treatment has perhaps corrected, or rehabilitated, my immune system enough to minimize the effects that Meniere's disease has on me.

*SSTP is not for everyone.  It requires commitment, dedication, and for some people a leap of faith.  Also, each person's circumstances, length and extent of disease are unique, so the treatment course may vary from person to person.  Some may require additional medical intervention with prescription medications prescribed by their physician.  I neither encourage nor discourage others from seeking more information about it.  It is a deeply personal decision that should be made with the support of your family and your physician.  It is probably wise to attempt to exhaust all conventional treatments and to consider just how disabling your symptoms are for you.  On the other hand, it would seem reasonable to believe that earlier intervention might mean better, more durable results.  Until there can be large, well-designed studies, we won't know the answers to many questions.  While I am happy to answer general questions, it is best to reach out directly to Stephen Spring at stephen_spring@me.com for specific details of the treatment and to determine if it is right for you.

Alcohol and Immune Suppression

Jessica Tyrrell, PhD, et al, published a study recently linking Meniere's disease with immune dysfunction.  This idea has been on my radar now for the past three years and there is quite a bit of literature out there to support this conclusion if you know what you're looking for.

Based on what I have learned, I don't want to imply that the answer is as simple as "boosting" our immune system through diet and lifestyle changes promoted on the Web.  Not that these things can hurt and, in fact, for some people, and in the early stages of the disease, they might be enough to tilt the immune system just enough to keep symptoms at bay for a while.  However, I can't emphasize enough the complexity of the underlying cause(s) of this immune dysfunction which is thought to lead to Meniere's symptoms and progression.  That being said, why not take some steps to avoid further compromising immune function?  One of the things that can be done to this end is minimize or avoid alcohol consumption.

This is sad news for many of us, myself included.  I do enjoy my red wine and before Meniere's disease,  I used to enjoy a whole lot more of it.  I quit drinking for the first three years after I was diagnosed and while that didn't seem to make any difference in my symptoms at the time, when I did reintroduce the occasional drink I found it often correlated with an uptick in my symptoms for the next few days.

The article entitled Influence of Alcohol and Gender on Immune Response, published by the NIH's National Institute on Alcohol Abuse and Alcoholism,  provides an excellent explanation of how alcohol, in any amount, can compromise immunity.  As a bonus, it provides a basic primer explaining how the immune system works.  It is a long read, but well worth it if you're just becoming familiar with the idea that Meniere's disease is one of immune dysregulation.

For those who are following my progress on the Stephen Spring Treatment Protocol, I continue to feel very, very well.  Quite normal actually.  My hearing is excellent, perhaps only a little lingering loss in the high frequencies as a result of the three gent injections I had several years ago.  For the past several weeks, my only symptoms have been soft, humming tinnitus with only a momentary buzz here and there and a few thirty-second mini-spins most days which are unrelated to any other symptoms, as compared to before when I had a host of symptoms that went along with mini-spins and vertigo.  I am able to just push through these without having to stop what I am doing.  They feel like a burst of nystagmus (eye-darting) in my right eye.  It starts off fast and slows down gradually, then passes.  My energy level and mental clarity remain very good.  I am only requiring 7 hours of sleep each night.  And still no more chronic sore throat.