Endolymphatic Hydrops

Roughly 2 ½ months ago I was diagnosed with BPPV, a form of positional vertigo where depending on how your head is positioned, you may feel a slight sensation of spinning for a few seconds.

As it turns out, my BPPV was a pre-cursor to a larger problem that was brewing and yesterday I received a diagnosis of Endolymphatic Hydrops, which is a disorder of the vestibular system of the inner ear.

In a nutshell, people with Endolymphatic Hydrops have abnormal fluctuations in the fluid called endolymph, which fills the hearing and balance structures of the inner ear.

So, this has pretty much knocked me on my butt for the past several weeks, both physically and emotionally. My balance became so un-steady that I was finding it increasingly difficult to under-take daily tasks. Luckily, I have a tremendously supportive family who has come to the rescue, and I live in an area where there are specialists who are well versed in recognizing and stabilizing this type of condition.

My Otolaryngologist/Neurologist is wonderful, as is my Vestibular Rehabilitation Therapist. I mention this because vestibular related problems are often mis-diagnosed by general practitioners. My own doctor initially attributed the problem to being sinus related. If you feel you are having balance issues, seek out an appropriate expert – even if it means visiting a specialist in another city.

So, my prognosis? For now I am on a 10-day course of a steroid to help alleviate the inflammation of my vestibular nerve and acts directly on fluid homeostasis in the inner ear by interacting with glucocorticoid receptors in the ear. I will also be on a diuretic for the next 3 months to help increases the excretion of sodium and chloride from my body.

Hopefully in another week to 10-days I’ll start feeling more back to normal and notice decreasing symptoms of vertigo and tinnitus. If I can stay symptom free for 3-months, we’ll see if I can wean off of the diuretic.

So, you may be wondering why I’m sharing all of this with you. My reasons are two-fold:

1) Reiterating what I said earlier, Vestibular issues are all too often mis-diagnosed. If I stayed the course that my General Practitioner put me on the likelihood of my Endolymphatic Hydrops progressing to Meniere’s disease would be greater and would likely result in hearing loss. As a Certified Fitness Nutrition Coach, I do not take going on a course of steroids lightly. I would like to think that I could control this condition entirely through a holistic approach. With that said, I’m a firm believer that as far as health issues are concerned, a combination of Eastern and Western philosophies need to be considered based on an individuals condition.

2) Due to the Endolymphatic Hydrops I will need to maintain a very low sodium diet (~ 1000 mg/day). This is proving to be more than challenging as you quickly become aware of how sodium laden most pre-packaged foods are. Prior to my diagnoses my daily sodium intake was typically less than 2000 mg/day with the exception of when I would go out to eat. It’s going to be interesting to see how well I can maintain a 1000 mg/day diet, and I will certainly be sharing those trials and tribulations here on CFB. My biggest struggle right now is that I’m finding it hard to eat very low sodium and intake enough calories whereas I can start to gain back some of the weight I’ve lost these past few weeks (approx. 8 lbs). As I begin to figure this all out, I’ll be posting the details.

While Endolymphatic Hydrops is considered a chronic condition, I truly believe that once this initial out-break is controlled, I can significantly reduce my chances of future outbreaks though a proper diet and nutrition program.

So, thanks for hanging in there and continuing to visit CFB throughout this period. I greatly appreciate your continued support and if you suffer from any type of Vestibular disorder, I’d love to hear from you!

Train hard; stay strong; watch the salt.

Peace.

Susan