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Endolymphatic Hydrops - Meneire's Update

Posted Aug 29 2012 8:28am
I didn't plan on posting again until I was back from vacation, but I've received so many emails recently at inquiring about my health, that I decided to post a brief update and publically answer some of the questions being asked.

The folks who email about this are typically those who have received a recent diagnosis of Endolymphatic Hydrops or Meneire's Disease . For most of these individuals, it may have taken years to be correctly diagnosed and at the point of diagnosis, they're often at a low-point health wise.

I was very lucky in that my diagnosis came within 2-months of the onset of symptoms and 3 years and 3 months after my initial diagnosis, I'm doing pretty well! There are flare ups (one in May and one currently), but I am able to lead a relatively normal day-to-day.

Specific answers to questions I have received recently
- What are your symptoms? Some are the typical symptoms including ear fullness, vertigo and tinnitus. Other symptoms I have include ear pain, seasickness and BPPV.

- Do you take any medications to control your condition? Yes. I take a diuretic daily (25 mg) and started taking Acyclovir which is an anti-viral roughly 3-months after my initial diagnosis.

- Do you feel the medications help? I have no idea, but I feel pretty well most of the time so I don't see a reason to stop taking them right now. I will start a Primal diet in a couple of weeks which may further help reduce inflammation in my body. Once I have a better understanding on how this diet is impacting certain things, I may start to ween myself off some of my medications.

- Do you follow a special diet? Yes. I keep my sodium intake to ~ 1200 mg/day. When I first became ill I kept it as low as 600 mg/day and slowly increased it over time. I limit my caffeine intake as well as alcohol. While I was never a big "sweets" eater, I have found that when I do indulge in the occasional treat that sugar is a trigger for my symptoms. As such I limit that even more than I did prior.

- Are you able to shop in a supermarket? This may seem like a silly question to those of you who are not suffering from a vestibular disorder, but to someone who is, a supermarket can be your worse nightmare. My answer to this question is yes. However, when I first became ill it was extremely difficult. I'd be holding on to my sister (who was taking me food shopping) for dear life. It's extremely important to get in to a Vestibular Therapy program. I found Vestibular Therapy to be invaluable and when I have flare ups, I will go for several sessions to help get my system re-set.

- Are you able to exercise? Yes! The best thing you can do for yourself is to keep yourself moving. I cannot exert myself at the same level that I did before becoming ill, but I can absolutely get in a solid workout at the gym, and I'm even back to running short distances. Obviously, you need to listen to your body, and to your doctor. Because Endolymphatic Hydrops - Meneire's is a vestibular disorder, your balance is not going to be the same as it was pre-illness. When I first started getting back in to the gym I stuck with machine based workouts on machines where I would be in a sitting position. Machines are perfect as they were developed for rehab patients.

- Do you have any hearing loss? Not yet. I have my hearing checked 2 - 3 times per year and I'm due for a check-up in September. Keep in mind that not everyone with this condition suffers from hearing loss. My diagnosis right now is actually Atypical Endolymphatic Hydrops because I do not suffer from this symptom.

- Am I ever going to get better? I have most definitely gotten better since my initial diagnosis. For me it was giving my vestibular system time to 'recover' from my initial attack and being pro-active in my recovery. What I mean by this is that I was diligent with both my diet and Vestibular rehab when I first became ill, and remain so to this day.

When I feel symptoms coming on I'll do vestibular rehab exercises at home, and make appointments with my therapist as necessary.

The condition can vary greatly person to person, but the protocol for recovery is the same.

I'm a firm believer that Meneire's is an inflammation based disease, and look for ways to reduce inflammation in my body. This includes ongoing diet modifications, exercise, massage, and I'm trying my hand at meditation.

I hope some of this information helps and leaves those of you finding your way to this posting with a positive outlook. Very few people make it through life without some type of struggle. It's how we handle these struggles that ultimately defines us.


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