Vestibular Neuritis- any recovery stories?

How are you doing? I have had VN for 4 months (today). Here is what I have found:

For recovery, after I completed the two months of physical therpy exercises (and did them at home), I platueued. Then I was left with the typical symptoms (dizzy, anxiety, depression, nausea, etc.). I experiemented with how to deal with them.  I have made a lot of improvments just with two minor things that I highly suggest to you:

1) Do all your normal activities (even if they make you feel unwell).

2) Use your mind to calm the symptoms. 

I found that every time I feel a symptom, I just say in my mind "Hello. There you are. Its ok. I see you. Its ok."  Sometimes my mind wants to say things like "Oh no! Here comes a symptom! Then I am going to feel sick!...etc.". I will just take a breath and if I have to, LOUDLY (in my mind and not outloud) just say "No. The symptom is not the problem. The symptom has no power".

Then, I give my self strengh statements. I say "I am able. I am capable. I will continue with my activity until I fall over. The symptom does not mean anything."

The great thing is, I never actually do fall over!

I accept that my body works different now. Its kind of a fun challange for me and my body to figure out how to cooperate withe one another! How much can I challenge it?!

I do crossfit. Do I do it well? No. I wobble when I do lunges. I go to my sons sports games. Do I get nausea? Yes. So I just quietly go throw up and go back to the game and watch. Do I get really really tired? Yes. I just accept that and take a nap.

Thus, listen to your body, but dont judge the symptoms or feelings. Its all in the zen of how you think about the experience. A symptom does not have to be bad, its only bad if you think its bad. A symptom can just be a way of saying "Ok, slow down a bit here". You and your body are a team. Your body is crooked, it wants your help. It does not want you to be mad at it, or to  hate it, or be fearful of it.

With intentional mind thoughts that calmly accept your symptoms, you cant get rid of the symptoms, but in most all circumstances, you can take away their ability to cause distress.

When your body has a symptom, mentally give it a hug and say "Its ok, I see you feel dizzy. Thats ok." embrace your dizzy. It will then relax and run its course.

If you are mad at your dizzy, it will get larger and larger.

So, go give a big hug to your fabulous self today!

Thanks for checking in with me. I am about 95% normal now.  During VRT I made an appt. with the Chicago Dizziness Center which is a practice of Otoneurologists that specialize in Dizziness and Balance issues ONLY. I went through a series of tests all with goggles on.  I finally received a 100% diagnosis which was Vestibular Neuritis and also bilateral BPPV (BPPV in both ears). They suggested I see their PT because they specialize only in Dizziness and Balance and do not offer any time of Physical Therapy.  At this point I had been doing VRT for 3 months and I still had dizziness in crowds and moving my head from side to side. So I took them up on their offer. After all my test results came back their PT stated that according to the test results I no longer have VN but the dizziness that I'm still feeling is caused by the BPPV that was not full cleared up. The PT was able to tell from the way my eyes were moving and by my symptoms that the crystals were in the posterior canal and the epley maneuver would not fix that type of BPPV. He also stated that doing the epley maneuver a couple of times would not get the crystals back in the rightful place. I would have to do 3 sets of specialized home excercises 2x's a day for a week and go back for an eval. He informed me that it would get worse before it got better. and that's exactly what happened. When I went back in for an evaluation I noticed that I had not been dizzy for the past 2 days at all!!!! He told me to not do any excerices for a week so get my brain back to normal since it was overcompensating for such a long time.  I have had some dizziness but I've been doing everything so I think its my brain getting use to doing everything as I normally would. But I havent had a full day of dizziness since I've done the at home excercises. He really knew what he was talking about. I'm going to go back in for a final evaluation to be "discharged". It's so important to find the right Dr. because as the specialist said if your are not 100% correctly diagnosed any excercises are pretty much a shot in the dark.  I would hate for people to go through this for months withough realizing that they still have BPPV. I couldnt tell I still had BPPV because it wasn't that room spinning vertigo. Which is what the PT told me that it doesnt have to be room spinning for it to be vertigo. It just meant I had a few crystals and that the symptoms when the crystals are in the posterior canal are not room spinning its just feeling a little off,  like your in a dream or a haze. Which is what I had I felt like a cloudy haze and like a dream.  I no longer feel like that and I feel almost 100%. Thanks god this is almost over.

No, they were not. It was the log roll for the lateral canal. You can look it up online.

For me...this is not healing so fast, and I have found it difficult to find the right DR. to explain what to expect over time. In the meantime, the more important issue is I look normal and I do not abstain from any activity, regardless of how it will make me feel or how I feel before hand. I have found sometimes I feel poorly, then, for example, I waddle on over to tennis and end up feeling better. Other times I feel fine, shovel snow, come in feeling like I am floating off into outter space and taking a 1 hour power nap.  So really, not much improvement overall with how my body is. My mind is still getting more clever at dealing with it tough! If I cant change the symptoms, all I can do is change what they mean to my thoughts and my actions!

I guesss, the less I care about it and accept the symptoms it as my new buddies, the less they bother me.  I think one thing that I experienced that I dont see people talk about (maybe it was just my experience) is that It was hard to get over the hump of "looking like a sick person".

Because this is an invisible thing, it was so originally so distressing to know I was feeling so odd-- but everyone could see nothing wrong with me.  I did not like feeling so stange and that people could not see it. If I had a missing leg, people would know my handicap and understand why walking is a problem. As you know, with dizzy issues, you look pretty fine, so people cant understand what the heck your problem is! Walk faster! Quit saying you are so sick!? What...are you a weak whiner...or what?

So, originally, to try to communicate that I was not well,  I would let show how I was feeling with my face, or my body language (i.e. I woulld look tired when I felt tired)... I have since figured out that part of taking away its power was also in not even LOOKING tired.

I am still mastering this new skill! But, what I do is test myself at Crossfit. I go to workout and everytime I feel weak or dizzy, or tired, I take a second to make sure I do not let it show. This sounds like a ridiculous plan, but its been very useful in giving me calm and sucking away any anxiety. When you do this, noone will know you dont feel well and yes, you may look a wee tiny bit dizzy, or drunk, or odd. But ask  yourself, can I take this dizzy walk and make it look normal AND LOVE IT? Most of the time, with concentration, I can.  Its kind of like PRETENDING you are better. I dont know why it helps, but it does. I no longer get any symphothy nods or inquiries about how I am feeling, but then again, why would I want that? 

My ultimate goal is to present my crooked self to the world, and have it feel beautiful, normal and my own. I dont want people to ask me how I am. I want them to see I am maybe a bit odd sometimes, but to FEEL that I am so in love with the way my body works, that they know I am great!  I am crooked and GREAT!

Now...if I could just find a DR to explain this dorky issue to me better !!!

I asked my ENT if they were related (the BPPV and the "oscillopsia - things take a second to catch up, which makes me feel unbalanced) and he said no! Only that they were both both inner-ear conditions (altho his associate said he thought my disequalibrium was a central/brain problem) but the MRI showed NOT a brain problem. My neurologist got angry about this, that he referred me back to her. Now I think the answer is that I have posterior canal problems as you described!! I alos have downbeat nystagmus, as well as rotational nystagmus when I move my head, mostly to the left.

You mentioned unbalanced feeling/walking on a cloud/tipsy/veering/lightheadedness I think. I have those! Was this all due to the posterior BPPV?

You mentioned lateral canals... is this the same as posterior canals? I know there are 3... I think they were assuming it was the more-common anterior canal that had the loose crystals. THIS may be a MAJOR breakthough for me! Thanks so much. Your thoughts?

Vestibular Neuritis Symptoms - Feeling "Drunk" like. Sometimes I thought I was almost slurring my words but I wasnt, When I would walk I would veer to the right. Nyastagmus. Felt like in a haze or dream

BPPV - (anterior canal)When I would lay on my right, left, look up, look down the room would spin. (lateral Canal) I felt like I was in a haze or in a dream. When I would move my head quickly left to right and look behind me I would get dizzy. Lateral BPPV doesnt cause the room spinning vertigo that the Anterior canal BPPV does. 

You mentioned posterier canals. What are those symptoms? I definitely have room spinning, but also the unsteady, veering, drunk feeling, with objects not staying where they are supposed to be when I move my head. They lag behind. I will read your other replies too.

I am still a little shaken up!

I seem to have a history of symptoms similar to yours (it's been more than 8 months now). Some sort of a combination of right side VN (hypofunction) and on top of it was diagosed with AC-BPPV at some point. The spinning episodes have stopped after the Epley fixed AC-BPPV, however, like you, I remain with dizziness (of all sorts) that intensifies with moving my head both laterally and up-down.

Question: do you remember how did your PT test for lateral canal BPPV? Did s/he use goggles or any special devises? What was the test?

I had gone back to PT asking him to test me again for (any canal) BPPV and it was negative. And yet...I wonder if I am not in a similar situation to yours, with a few loose chrystals that continue to cause havoc.

Thank you!