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Old 03-23-2013, 08:20 PM   #1
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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.


SOME THINGS THAT HELPED ME WITH VIRAL LABRYNTHITIS:

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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Old 03-25-2013, 06:37 PM   #2
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Thank you for such a positive post! I am in week 5. I am much better than my first few weeks but I feel like progress is slowing down. Not stopping, just slowing down. I am also counting my blessings bc I have read on these boards how many have had worse symptoms than I. I was interested in your comment about watching TV. Were you always able to watch TV? I still struggle with visual and audio stimulation. I did not watch TV at all! I give it a try a bit but it makes me feel motion sick or gives me a headache.

My other question is did you have a nystagmus with yours? Wondering if you had headaches during the compensation process? (eg. When you tried to read, watch TV, drive, etc)

Thanks again for your post it is nice to hear from someone whom posts their experience from beginning to almost end!

 
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Old 03-29-2013, 07:56 PM   #3
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Smile Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Hi there!

I'm sorry to hear about your labrynthitis - but happy to learn my post made you feel better. If you can tell you have improved - hang on to that!

Re: TV. No - in the first week, I was a write-off with focusing on TV, computer, reading, etc. I was able to do these things the 2nd week, but not for long periods of time - as any neck motion really bothered my dizziness which really bothered my eyes. I'd say by week 3, it was much improved. Though, even for a few weeks afterward, especially when walking around (in a mall, etc) - that my eyes felt 'tired' or dazed - like I wasn't all there.

I did not have nystagmus with this labrynthitis - but I DID have nystagmus with vertigo 2 years ago. The nystagmus was triggered only when I lay on my right side and was extremely nauseating. Do you have nystagmus? Is it only on one side? Have you tried the Epley?

I don't particularly recall headaches (but I feel that would be a normal symptom what with all your brain is trying to compensate for) - but I DID get extremely fatigued, which is not like me at all. Especially after doing the brain exercises, etc.

Please keep us posted on your progress! Stay positive - you'll get there. One important thing my ENT told me is that some days, it can feel like you took a few steps backwards..it sort of 'roller coasters' at times - from feeling good to feeling bad. I also felt that progress seemed to slow after the initial symptoms. I think because the first symptoms are SO BAD, you can really pinpoint when you feel better. The rest of the symptoms are not as debilitating so they feel slllooowwww.

But keep reminding yourself of the baby steps of progress! Wishing you a good recovery.

Nat.


Quote:
Originally Posted by Madsamjo View Post
Thank you for such a positive post! I am in week 5. I am much better than my first few weeks but I feel like progress is slowing down. Not stopping, just slowing down. I am also counting my blessings bc I have read on these boards how many have had worse symptoms than I. I was interested in your comment about watching TV. Were you always able to watch TV? I still struggle with visual and audio stimulation. I did not watch TV at all! I give it a try a bit but it makes me feel motion sick or gives me a headache.

My other question is did you have a nystagmus with yours? Wondering if you had headaches during the compensation process? (eg. When you tried to read, watch TV, drive, etc)

Thanks again for your post it is nice to hear from someone whom posts their experience from beginning to almost end!

Last edited by Natsplat; 03-29-2013 at 07:59 PM.

 
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Old 05-04-2013, 05:14 PM   #4
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Thumbs up Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Thanks Natsplat for that encouraging post.

I had an inner ear problem last year, June 2012 til Oct 2012. It started w/ a short but intense and terrible vertigo attack when I was playing w/ my cat on the bed (sort of rolling around). Thankfully I didn't have another vertigo attack but I had all the other symptoms for the entire 4 months--the nausea, dizziness upon all sorts of movements, brain fog, enhaustion..I also had lack of sex drive, depression, anxiety, etc. (all normal in this situation!)

I wanted to see a PT about being tested for BPPV but I feared the Epley so much because I had read it was absolute hell to get through. Finally in Oct I did go to a PT and she did a whole bunch of maneuvers to test my ear canals, etc and amazingly, nothing --not a single one, not even the Epley done on both sides--caused any dizziness!! So she could not make a diagnosis and basically left me saying "live your life, to get your brain to recompensate."

But the amazing thing is that after that visit, all my symptoms were GONE!!

I still don't know if it's because somehow she 'shook something loose' or whether it was all in my head or what..all I know is I was 100% back to normal after that and was thankful every single day because I knew it could come back at any time..

And on April 30, 2013, it did. ( I woke up to a dizzy/vertigo attack which put me in panic mode and I felt miserable that first day.

Subsequent days have been better as I've mostly managed to keep the full blown dizzy attacks away, but I feel nauseus off and on all day and get little mini dizzy/woozy spells all the time depending on how I'm moving, where my eyes are looking, etc. The fatigue and depression are back, and just the general malaise, as well as slight intermittant tinnitus (not sure which ear).

So it's only been about 5 days in..but I keep telling myself I just can't go another 4 months and lose my whole summer like I did last year..!!! So on Mon I'm calling the PT so I can find out if this is BPPV (this time?) and if she can help and if not then i will keep doing VRT exercises (which I'm already doing now).

I'm trying to stay positive but today has been a rough day where I spent a good part of it feeling all alone and moping and useless. I can ride my bike (as I could last time I had this) so I ride every day and I feel fine wheN I ride but as soon as the ride is over I"m back to feeling like ****. I know my version of this is nowhere near as bad as so many poor souls get it and for that I am so thankful. But this illness is so terrible on so many levels, not the least of which is, as you say, people don't get it...they think we are making it up because we "look fine"!! So it's a very lonely illness and very isolating and debilitating and causes so much anxiety and depression.

I also fear I will lose my new lover since this illness makes sex practically impossible, and that also adds to the anxiety, depression, and self loathing that this brings!

So I was very happy to read your post; even though I have lived through a 4 month bout of this before and know it can eventually go away, I just haven't been able to stand the idea of going through this again...so I needed that pep talk. Thank you for that!

 
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Old 05-04-2013, 05:18 PM   #5
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Question Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Natsplat, I forgot to ask...when did you start doing the VRT exercises? How many times a day did you do them, and what exercises did you do?

I'm hoping that by doing them right from the onset, that I will shorten the length of time I have this, this time around...

 
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Old 07-27-2013, 12:22 PM   #6
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Natsplat:
Thank you so, so much for your message! I had suffered with Vestibular Neuritis for about 2 months when I came across your post. Your words comforted me and gave me hope to stay positive. I printed our your post, highlighted parts, and re-read it often. About another 1.5 months later, I was 95% back to normal, so my recovery ended up taking 3.5 months total, which is just what you had written (about it taking 3-4 months). I'm still around 98% back to normal (the only symptoms being sometimes a slight eye strain feeling, due to feeling visually overwhelmed), but this is minor and is nothing compared to how it was before. Those were dark days before...

I think what really helped me was sleeping on the side I had been avoiding (due to that side making things worse). I persisted and forced myself to do it, even though it made things worse for about 2-3 weeks, and I kept up my Vest Rehab exercises, and took probiotics and it all seemed to fade away over time. It happens so slowly and you almost can't tell.

I want to write a proper write up of my experience, but I kept putting it off, so I figure I'll just write this now, for you and others to see and work on a better one later.

I read somewhere about someone losing hope because most people here seem to take 12 months to get better, but I think the reality is that there are a lot of people who get better after just 3-4 months, but it's just that you never see them post anymore because now they are cured and back to living daily life again.

I wish all of you the best in your recoveries. And thanks again, Natsplat!

 
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Old 08-09-2013, 03:27 PM   #7
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Natsplat,

Your words of encouragement mean a great deal to me as I'm generally a pessimistic person. I have been suffering from VL for about 5 weeks now and have mostly overcome the 'dizziness phase' thank god, however fatigue, headaches, tinnitus, and my worst symptom, brain fog, persist. I fear my tinnitus will be permenant as it is quite loud. I also wonder when this lousy brain fog will lift. I am starting graduate school next week and am nervous about hoe this brain fog will affect my concentration. Later in the day, the brain fog combines with a constant dull headache as well as the fatigue and I must give in and take a nap. I think its good to see positivity on this board because there is always so much fear mongering going on around here. I guess my question is how long did the brain fog stick around for all of you?

Thanks, Pete

 
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Old 08-09-2013, 08:52 PM   #8
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Pete,
The Brain Fog was very bad for me, especially around times of stress. I had to learn new duties at work and it was so hard to keep up. I don't know how I survived those days, but I did. I believe my brain fog even turned into "derealization", which to me was possibly the worst symptom of all, because you go through your day feeling as though everything is a dream and fake, and yet you try to act normal so no one at work/school finds out; it's a living nightmare. Anyway, the derealization mercifully only lasted about 4 weeks for me and the brain fog lasted about 4 months total. The fog started lifting for me around the end of May and I feel like I'm 90% back to full cognitive levels (at my worst, I felt about a 50%; and boy did it give me newfound compassion for the less intelligent among us). I could tell I was getting better when I started to correct/remember things that my coworkers didn't, because during the worst of it, it was like being groggy all the time and I had to rely on them to remember things for me and to tell me what to do at points.

Horrible, but I made it through it and you will to. I clearly remember surfing the net looking for answers and fearing that I would be this way for years, but it very likely will get better with time. Right about week 6 is when I started to panic and developed anxiety and depression, because I thought "I should be better by now!". Just try your best to relax and do healthy things for your body and mind.

Last edited by curemode; 08-09-2013 at 08:56 PM. Reason: spelling

 
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Old 08-10-2013, 03:26 AM   #9
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Curemode, thanks for the response. I feel so alone because when I tell family and friends that I have brain fog, they just roll their eyes and dont really understand that it is a real issue. I find the fatigue an issue as well because when combined with the brain fog, it makes it difficult to care about doing simple everyday things like going grocery shopping or doing laundry. Also, had you experienced any tinnitus with your VN? Mine seems to be getting worse and is starting to really bother me.

Thanks again, Pete

 
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Old 08-11-2013, 02:37 AM   #10
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Pete, no problem. Ask me anything you want. I want to try to help others that have this.

I don't think I had true tinnitus. I heard ringing about 6-7 times in my affected ear, but it only lasted for a minute each time. I took a hearing test (engram I think it was called; I forget) and they said I had normal hearing. This was at about Week 6.

I did however have ear pain, headaches, nausea, throat pain, etc. I kept track on my symptoms on a spreadsheet, rating each from 1-10, in order to try to build the positivity by celebrating even small improvements. Over time, all symptoms got better... but it did take almost 4 months in all.

There's a youtube video of a guy with VL and had tinnitus and he looks very depressed, understandably, but he posted an update that all his symptoms are now gone too. It just took a while. Take care.

 
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Old 08-11-2013, 12:05 PM   #11
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Pete, no problem. Ask me anything you want. I want to try to help others that have this.

I don't think I had true tinnitus. I heard ringing about 6-7 times in my affected ear, but it only lasted for about 30 seconds each time. It wasn't loud. I took a hearing test (engram I think it was called; I forget) and they said I had normal hearing. This was at about Week 6.

I did however have ear pain, headaches, nausea, throat pain, etc. I kept track on my symptoms on a spreadsheet, rating each from 1-10, in order to try to build the positivity by celebrating even small improvements. Over time, all symptoms got better... but it did take almost 4 months in all.

Last edited by curemode; 08-11-2013 at 12:21 PM.

 
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Old 08-11-2013, 12:08 PM   #12
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Sorry, double post

Last edited by curemode; 08-11-2013 at 12:12 PM.

 
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Old 08-11-2013, 03:01 PM   #13
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Although I had been diagnosed with VL about 6 weeks back, im starting to think more and more that it was a wrong diagnosis because im now starting to have visual disturbances along with my tinnitus, brain fog, and dizziness. I have a sensitivity to light, blurred vision, increased number of floaters, visual snow, and sparks in my vision. May be time to see a neurologist but thanks for your support.

Pete

 
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Old 05-27-2014, 07:14 PM   #14
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

I'd like to apologize to all who commented on my thread! Seems i didn't know I was getting messages - I'm sorry! But I'm so happy to know I could make a difference for some. Just popping in to wish you all well - and hoping you are all dizzy free and back to normal. Have a wonderful summer!

 
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Old 07-13-2014, 07:53 AM   #15
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Re: My experience with Viral Labrynthitis: STAY POSITIVE!

Has it ever come back or are you still back to normal? Thanks for your story. I read it every once in a while. I am at 5 weeks....think I am doing good and then I have a bad day

 
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