I am starting this blog because I have been diagnosed with Labrynthitis, a vestibular disorder. There is not a lot of information on vestibular disorders online, so I decided to start a blog detailing my personal experience with a vestibular disorder, post resources for people with vestibular disorders, and tips and information on this odd group of disorders. I see a lot of discussion forums online filled with people who have a vestibular issue but who cannot find resources or information on our condition.
About me:
My name is Jessica. I am 31 years old. I am married with a 7 year-old daughter. I have been given a preliminary diagnosis of Labrynthitis affecting my right ear, pending further testing which begins next week. I came down with a severe cold and upper respiratory infection about a month ago. I have experienced vertigo and extreme balance challenges over the past four weeks. It has been debilitating. I am currently on unpaid leave from work until I can get a firm diagnosis of my situation. I am unable to drive or walk more than short periods of time without experiencing extreme vertigo and falls. I bought a lightweight cane to assist me in walking since I was falling. Before this, I was active and rode horses, hiked, and was generally a high-functioning person.
I credit my first line doctors with fast-tracking me to the correct diagnosis. After researching Labrynthitis and other vestibular disorders, I saw that many people wait years for a correct diagnosis. I first went to a walk-in urgent care with dizziness. CT scan and blood labs were normal. I was told that I had the signs of an inner ear disorder, and I should see my primary care doctor. I waited a week and saw my PC doctor, who believes me to have an inner ear problem as a result of the cold I had last month. Next week is my first visit to an ENT who specializes in ear disorders.
After a month of debilitating dizziness and vertigo, I have realized that this condition is not going to go away overnight, if ever. I will accept that and move forward if it comes to be that this is a permanent or long-term issue, which it seems to be at this point. I have not resigned yet from my job until I have seen an ENT and find that it is going to be permanent. My regular job is horse-sitting for families in my area. It is a very fun but physical job and I would not be able to safely do that with a vestibular disorder. I am not sure what I will do for a career if it turns out that I cannot resume my previous job. Luckily, I am taking online classes so I am able to continue working towards my degree.
Falling is the biggest risk right now. I have fallen once and fortunately it was on carpet. My new cane saved me from a fall last night when I was walking and talking to my husband and turned my head suddenly and lost my balance. I am not comfortable going back to working in any function until I know what exactly is causing my inner ear problems (Labrynthitis, Meniere's, or whatnot). Labrynthitis is my preliminary diagnosis given to me by my primary care doctor, based on her knowledge.
Following is a list of symptoms I currently experience as a result of my inner ear problems:
- vertigo: the room tilts or spins sometimes. I read that taking medicine for vertigo (i.e., meclizine) can slow recovery from vestibular problems so I do not take anything for the vertigo. I usually just lay down when vertigo happens and try to be in a quiet, dark room. This gets worse when I am tired or when a storm blows in.
- general dizziness: I tend to experience this almost constantly, but especially when I am tired and when the weather is changing.
- nausea: I treat this like I did when I was pregnant with my daughter. White soda, crackers, hard candy.
- fatigue: this is a big one. I am unusually tired and exhausted, and small tasks are very hard to do without resting afterwards.
- vision changes: I have noticed my vision gets blurry just before I experience a bad episode of vertigo or a worse episode of general dizziness. This is a cue to me that I need to have my cane with me or lay down in bed.
- neck pain: I am not sure if this is a cause or effect. I have been getting a really stiff neck over the past month. I do not know if is related to a vestibular problem. I am thinking I am very tense, trying to hold myself up because I always feel as if I am tilting off to one side, so this is causing my muscles in my neck to be over-active.
- anxiety: I have started taking anti-anxiety medications because I do have full blown panic attacks, especially when I am outside of my house. Having recurring vertigo attacks causes me to have extreme anxiety.
- falling over: If I am bumped or trip over something on the floor, I will fall over if I am not using my cane or holding onto something. I have never fallen before I had this condition.
It is not a pleasant disorder to have but I will keep updating on my experience and any insights into navigating this difficult condition.
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