My Labrynthitis Story....

On March 5th I got a severe wave of vertigo hit me and I collapsed. The next day I had stomache issues and nausea/vomiting. Went to the Dr she said was the flu. Dizziness, nausea , vomiting and stomache issues persisted. I went a few days later to ER they said was flu. Went again had blood work done once again they said it was a virus. Kept seeing my Dr nothing helped. At 6 weeks I went to see an ENT hearing tests came back fine he said he didn't know what was wrong see a nuerologist. At 8 weeks I went to the neurologist. Had an MRI came back clear. Ruled out brain tumor, Meneires disease, MS, BPPV and they said they are as sure as one can be with this kinda thing that it is Labryinthitis/Vestibular Neuritis.

So Labs is an inflammation of an inner ear nerve. I had a cold prior to onset. This backed fluid into my inner ear. The fluid inflammed the nerve in my ear. This nerve tells my brain where I am in space (ie. in a boat, on land, in a plane, in a car etc..) Well when inflammed this nerve sends mixed up signals to my brain. This causes dizziness, imbalance, nausea vomiting and visual problem (blurry, bouncy, and takes longer for eyes to catch up to brain). Well the only way for this to go away is your inflammation must subside and your brain must recompensate for the bad signals.I have more Vestibular Neuritis than Labs as with Labs there is hearing loss or hearing changes and so far I have none. There is no medication for this illness. It can take days, weeks, months, or years for it to heal. Every person is different.

It takes away your independence. Especially in the begining. You are afraid to go anywhere alone.I spent the first 5 weeks resting and away from people. I only recently started driving short distances again. Grocery stores are hell. It is a combo of the lighting, the crowds and all the visual stimuli. Feels like I am being attacked as soon as I walk in. Computer screens are really hard too make me nauseous but I wanted to get this done. Anything loud and chaotic is too much. I dont really leave the house much these days I am just not ready yet. You never know when a huge wave of dizziness is going to hit. That is what is most scary so I dont go far from home. It has been 11 months now. I am so physically and emotionally exhausted from this I just want to feel better. If normal is 100% I am functioning at 50-65% somedays (rare) I get 75-80% and on bad days (quite often) it is 25-30%. One thing that can help sometimes (but can take months or years to work) is Vestibular Rehabilitation Therapy. It is exercises that try to rewire your brain to Compensate for the bad signals. Thing like walking and moving your head side to side. The more it makes you dizzy your brain tries to desensitize your nerve to not send out the dizziness when it gets a wrong signal. I have been doing home VRT's for over 6 months now.I have tried out 3 physical therapists that werent trained enough to help and switched my primary care physician. Going for a second opinion right after I hit my 1 year mark. Just hard to have hope sometimes (well for me most of the time). It is also kinda lonely but all I can hope for is to be better by 2 years!!

diminishingmirage1@yahoo.com