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Endolymphatic Hydrops

Posted Jun 03 2009 11:08am 2 Comments
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

Comments (2)
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Hi Susan,

 I too have endolymophatic hydrops and have been managing it through diet for the past 7 years.  Diuretics were not much help and just made my blood pressure really low.  Tried Serc and it did not do much to help either.  Overall there doesn't seem to be much out there to assist people in managing the symptoms.

Several times per year I experience flare ups, the latest lasting 8 mths and all mainly due to some stressful event I was experiencing at that time or occasionally overdoing things in the food sense as when the times were good  I could eat fairly normally. Dining out is really awkward at times.

I was told to keep my sodium intake to 200 mg/day so your 1000 is interesting. I did become obsessed with this and decided for many years to consume as little sodium as possible getting the amounts down to under 50mg/day simply by eating rice cakes, vegetables and pasta and rice and relying heavily on my herbs and spices for flavourings.  Only recently this year did someone tell me that consuming levels that low are not good for you as it impacts on electrolytes. So have begun eating more normally and am not around the 200-300 mg/day which is somewhat over what I was advised by my otalyrngologist. We did not seem to get along very well so I have not been back in 6 years and it seems that he cuts you loose once you seem to be managing so have been pretty much on my own with this except for a dietitian and doctor of Chinese Medicine both of whom I began visiting last year. I now though want to see an otalyrngologst so am awaiting an appointment at the Eye and Ear Hospital here in Melbourne

My symptoms are mainly tinnitus and fullness in the right ear with minimal dizziness so I am really lucky.  But have a lost fair bit of hearing from the right ear this year due to tinnitus and am unhappy by this.

I am curious as to whether you have come across anything relating to the effects of sugar. Although my dietitian and the material on the web say not, my otalyrngologist says yes and I have read the personal experiences of people with this disorder who say that sugar does not help their situation and can cause dizziness or exacerbate their symptoms.  It was the last thing I have cut from my diet and I am currently trying to investigate this further as well as looking into other treatments if there are any. I have tried acupuncture and chinese herbs, they have on occasion given some relief to the feeling of fullness but seem to work less as time goes on. My doctor of Chinese Medicine also says don't eat nuts, pasta and so on as they create "phlegm" so there are even less options for food thereby making life even more challenging.

I am glad to hear that you are so positive and have family around you who can help - it was interesting that your GP also thought your symptoms were attributable to sinus problems as mine thought the same thing. If you need some suggestions for dishes I am happy to help and will be interested to read your trials and tribulations with a low sodium diet.

Do stay strong and positive I always feel that when you have made improvement that there is always opportunity for more.

Regards

Shelly 

 

 

Hi there,

I share your trials and tribulations as a patient of EH. It all started for me as an alleged "allergy" from pollen and weed... 18 months ago. I have no dizziness or pain; just a horrible feeling of fullness in the ear and drastically reduced hearing. I tried every single medicine known to man -- antibiotics, steroids and allergy stuff. NOTHING helped. I consulted a half-dozen doctors including ENT guys; no one was able to find what's wrong. Some even tried to sell me a Cochlear Implant! I also have Tinnitus and wear a hearing aid. The other ear is gone; 100% deaf.

If you guys come across any home-based remedy for EH, please let me know. I am now trying some Homoeopathic medicines but they don't seem to help. One doctor suggested I have a mastoidal bone infection and a small surgery will remove the problem permanently. I am exploring that now.

Take care and God Bless!

Sriram Kalaga   drkalaga@aol.com   Joplin, Missouri, USA

 

 

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