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My experience with Viral Labrynthitis: STAY POSITIVE!

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Old 03-23-2013, 09:20 PM   #1
Join Date: Feb 2013
Location: Montreal
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My experience with Viral Labrynthitis: STAY POSITIVE!

Hi - I just wanted to stop by and share my experience with Viral Labrynthitis!

First of all, you're probably reading this because you've got VL or dizziness and you're googling your symptoms and losing your ever-lovin' mind and creating your Bucket List and convincing yourself of all kinds of morose and scary diagnoses. Stop it! Breathe! Focus! GAH!

This is kind of long, so if you are pressed for time - what I REALLY want you to read are my "Things that Helped Me" section down below. I'm not a doctor or someone trying to sell magic cure-all pills, but I would like to share what I think worked for me, personally - in case it can help someone else. Here's the guts of my personal story.

I'm sitting here on a Saturday night, writing to strangers on the innernets, because I want to provide a bit of positivity and optimism to those who are suffering now. A lot of the time, we come to message boards like this one because we are searching for people who have the same problems as ourselves - and it's good to create connections like that to know we aren't alone. But I think it's also important to take the time and share positive stories too!

Please remember, for the majority of people with VL - they get better in a relatively short time frame. They get back to their normal lives. Three months ago, I was in a bad place with this diagnosis - and I am now MUCH improved! I am operating at 99.99% normal and you will too (please don't be discouraged. I did enough worrying and consulting "Dr. Google" in the early days for all of us!)

Background: I am an active, healthy 37 year old woman (I do have some genetic hearing loss and tinnitus, which maybe predisposes me to inner ear things? * I had vertigo with nystagmus 2 years ago for about 2 days - I did the Epley at home, and it worked for me!*)

WHEN THE LABRYNTHITIS STARTED: January 3rd, 2013: I woke up incredibly dizzy. The room was dancing all around. I would like to mention that I had no head cold, no flu - it was a sudden onset. What is interesting, is I had a very stressful life-changing conversation the night before! I really believe this is what brought it on - that the virus was already hanging out in my body, but the stress made everything haywire and blammo! Inner ear seemed a nice cozy place to move into for a while. I have read it as a possible factor but haven't seen many personal stories about stress-induced VL, (it usually accompanies a cold or flu) - so I wanted to share this.

WEEK 1: Awwwwwful. Every head movement made me want to upchuck. Felt like my brain took about 2 second to catch up with the rest of my head. Nauseated. Way off balance. Couldn't focus on anything. My dizziness was such that I was bumping into walls, hanging onto things for balance, nauseated to the hilt. Like a hangover without all the fun stuff that typically precedes it. In short - it really sucked. I felt like a human Roomba!

WEEK 2: A big ol' self-pitying mess. Saw my doctor who wondered if I have Meniere's. Referred me to ENT for 3 weeks later (he is the one who eventually diagnosed me with VL) . My doc gave me a prescription for Serc and said if it got worse to call her. The Serc was good, but I didn't use it all that much - I really wanted to 'feel' my symptoms to know if they were changing or not. Was still extremely dizzy - but not as bad as Week 1. I completely cut out caffeine and alcohol. Started ramping up my diet and drinking lots of water. At this point, I still had no idea what was wrong with me, but because i could see a tiny improvement and things weren't getting worse, I pressed on.

WEEK 3: EXHAUSTED. Forced myself to walk down the street to the grocery store and felt like I was going to collapse (and I am a pretty active person). Still dizzy but getting better VERY MARGINALLY every few days. In the immediate walk aftermath, I felt awful - but then realized that the walk actually made me feel a little improvement by the next day.

WEEK 4: Felt brave enough to try and work out. Had to stop after about 10 minutes because I was exhausted, dizzy and felt like crap - it felt like all my brain insides were bouncing off the walls of my skull. But the next day -juuust a little better. At the height of my VL, I was typically exhausted at the end of every day. I think because my brain was trying so hard to sort itself out ALL. DAY. LONG.

I am now at about 3 months. And like I said, my life is 99.9% back to normal. The past 2 weeks have been more like - I function normally and then a verrrry slight barely there dizziness pops in to say hello. As opposed to being aware of it constantly and trying to push through it every day.


1. Stay positive!

2. Cut out caffeine and alcohol and drink lots of water. I started making a smoothie (fruit, spinach, probiotic yogurt) every morning and haven't missed one since.

3. Rest when you need to. Nap when you need to - if you can. Watch the entire boxset of 6 Feet Under (guilty!) because you physically can't do anything but lie on the couch in your own filth. Heh. You know what I mean though. Don't feel bad about putting yourself first. Might as well try to escape into someone else's storyline for a couple of hours every day. Stress management, baby.

4. Take a few moments out of every day to practice some Cawthorne Cooksey exercises. You need to re-train your brain that dizzy is not normal and that it better learn how to compensate again. You might feel awful after doing them. But you need to experience that ickiness so your brain knows what to do with it. I am convinced that the CC exercises really helped me - as did some very light exercising to just get the blood moving and the brain learning to balance correctly again. Do even LESS than what you think you can handle - it will still make a difference. Don't run a marathon or benchpress a bus. (Probably don't try to do that second one, ever.)

5. Don't focus on what sucks - focus on the changes for the better that you have noticed, however small! Write them down! When you're feeling sorry for yourself you can at least say - I feel like crap on a cracker, but I am better than last week when I wanted to barf while bending to tie my shoes. My ENT said recovering from VL takes people (usually) 3-4 months. I'm *hoping* mine will be totally gone soon, too!

6. Sleep however you want. This was huge for me. Because I woke up on my right side with the onset of the dizziness, I was terrified to sleep on my side for WEEKS because I was terrified to wake up like that again. I slept almost in a propped up position (because I know this is helpful for vertigo after you do the Epley) - or flat on my back. My ENT said - NOOOO - you need to sleep however you want. If you lie on your side and it makes you dizzy, stay there til it passes, because your brain needs to learn to compensate. In other words, it can't solve the problem if you are always avoiding the problem! And he was right. It felt absolutely delicious to go back to sidesleeping after so long.

6. Keep in mind (and I'm sure you've noticed) that it's hard for other people to understand what you're going through when you 'look' fine (omg, I even had a friend say, "I think it'd be kinda fun to be dizzy!". Evidently, she was. In the figurative sense). But listen - don't be discouraged - there are SO MANY PEOPLE who get it! Someone reading these boards knows how you are feeling right now! VL 'looks' invisible, but to the sufferer, it can be nauseating, tiring, even debilitating - and a very slow healing process. You think you'll never feel better. Have hope that you will. But more than that - don't grumble/cry/rage your way through it. Sure, allow yourself those moments but PLEASE - be proactive in whatever small way you can toward getting better. Because I said so! (and did so).

I'm still healing, myself. But I like to think I'm evidence that you can too. Here's to good health for all of you!

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