A Bit of a Plateau

Something I've noticed while perusing all of the vestibular blogs and patient stories out there on the Internet: all of us considered ourselves to be very busy people before our vestibular illness set in. And just like that, bam, we are completely, utterly incapable of continuing on as before. It has made getting better a frustrating and tedious process.

Over the past couple of weeks, I have felt continually better. I even considered returning to work over the past couple of days. However, I am still astonished with how little energy I have. That is probably the biggest factor in me deciding to not go back to work right now. My energy is precious, and I have it all allotted to my online courses, and my husband and daughter now.  I have absolutely zero left over for anything else. Even though the vertigo is substantially less, the dearth of energy is still there, a big void.

I was reminded of how slow the healing process is from Labrynthitis yesterday and today. The weather changed (got cooler by about 25 degrees), and that has caused a bit of vertigo and dizziness to return. Exhaustion came back as my brain, ears, and eyes speak foreign languages to each other and they try to make sense of it. I did not sleep well night before last, and yesterday was a tough day. The dizziness and exhaustion was pretty significant. The weather change affected me today.

I have very brief bursts of normal-feeling, pre-vestibular energy. I will feel quite normal for a couple of hours, and attempt to go back to my pre-illness lifestyle. Then I will be suddenly hit with bone-numbing exhaustion. So my healing process continues.

Still wobbly, especially turning corners while walking. Turning corners has been a bitch! I tend to wobble like a drunk person as I veer around the doorways at home or aisles at school.

Driving is fine for me. I haven't had much trouble driving in the most recent week or two. No falls to report, either, in the past week and a half.

I still have a bit of trouble with depth perception. When I am reaching into a cupboard for a glass, or for something in a grocery store aisle, I tend to jostle the items around it.

Computers are less of a strain on me than a few weeks ago. I still have some vision problems if I am tired or feeling dizzy. Having new glasses has helped tremendously.

I am still supremely sensitive to loud noises. I used to love heavy metal, but I cannot listen to it right now. I tend to stick with talk radio. Loud music or noises startle me much more than before I got sick with Labrynthitis.

Positive Progress Update

Going into my sixth week of symptoms and my fourth week off of work due to Labrynthitis. It has been a terrible illness and I can't imagine how people function, going for months or years without a correct diagnosis. Again, I commend my first-line medical professionals, specifically the urgent care walk-in clinic doctor and my primary care physician who immediately suspected an inner ear disorder. I was diagnosed about a month after symptoms onset.

The room-spinning vertigo has reduced by about 75%. I typically only get it now in the evenings or when a storm is blowing in. I got an episode this morning when I went to my chiropractor. I laid on the adjustment table and felt like my feet were going to go over my head. It only lasted a few moments. Overall dizziness and off-balance has decreased, I would estimate by about 50%. So pretty significant improvement has happened over the past week. I have stumbled a few times but I have not had a fall since a week or two ago. I have not used my cane in about 5 days.

Other symptoms are still present, such as tinnitus which gets quite severe. I am not certain what exactly makes it worse but it does get bad still. It seems to come and go at random times, but it is still present around 75% of the time.

Neck pain and shoulder pain have improved slightly. I believe that having vertigo caused me to tense up quite severely, which resulted in stiff neck and shoulder muscles. I realized over the past week how tense I have been holding myself upright in a sitting position. Feeling like you're tipping over to one side makes you want to tense up and try to adjust. I have increased my chiropractic visits and am using epsom salt baths to help with muscle stiffness.

Medication-wise, I am not taking anything except anti-anxiety medication. The meclizine did not really help me in any noticeable fashion and I have finished my course of antibiotics and steroids. It is still very stressful to go into a store or drive distances without being anxious of a vertigo attack, which is why taking the anti-anxiety meds help. They also help me sleep. I think being able to sleep well at night has helped me improve.

I have considered resuming my old job, but I am still undecided at this point. I definitely don't want to go back too early and have a relapse of some kind.

My energy is returning, slowly. I had enough energy to go to the chiropractor and then come home and work on a research paper. I then was able to shower, vacuum and do some laundry. Today was the largest amount of housework I have done since I got ill 6 weeks ago.

I have noticed that when I eat a ton of sugar or eat very poorly, my symptoms tend to get worse. I had a pretty average American diet before this and I am slightly overweight, but nothing too serious. I am generally in good health. I don't smoke or drink or use illegal drugs. But we ordered pizza the other night and I don't normally eat pizza. My symptoms were severe afterwards, with lots of tinnitus and dizziness and headache. It seems that if I eat a lot of salt or sugar, my symptoms get worse. If I eat protein and produce regularly, it seems to help.

Overall, a good progress report for week 6 of Labrynthitis.

Best Stretch of Low or No Symptoms in a Month!

Today was a tiny, flickering light on the horizon. I woke up and spent a good portion of the day sans-vertigo and with only a little tinnitus. I did not feel very dizzy or exhausted until the evening set in. I was able to shower (have been using a bath because it is easier for me to sit and bathe than it is to stand in my shower and tip my head around or move around much), blow dry my hair (haven't done that in a month) and even put on a little makeup. My mom picked me up and we went out to eat at our local Cracker Barrel. It was one of the first times I have been at a restaurant in a month since my Labrynthitis set in.

Overall, I was surprised at how much better I felt during the day. The dizziness, tinnitus, neck pain, headache, etc started to set in right around dinnertime. I am not feeling great right now, but mostly, I am hopeful that I start having more days like today.

I briefly considered phoning my boss to see about starting back at work very part-time, but my husband and I agreed I should probably just focus on school right at this point and worry about getting a job once my symptoms go away. We both agree I probably will not be able to return to my old job of working around horses. It has taken just over a month to have 1 partially-good day. I hope to see that increasing, but I do not see myself returning to my old job where reflexes and balance are essential to safety. If these symptoms do persist for several months or longer, I will attempt to find a job very close to my home, one that would require very little driving, and one that would allow me to work in short shifts. At this point, I am not sure what that would be. Florescent lights and computer screens are a big issue to me right now. If I am on the computer too long, I will get dizzy and nauseated. Since my degree is in Education, it would be beneficial to start substitute teaching. I could start doing that one or two days a week, assuming I am feeling better. My husband wants me to put off job-related stress until I am better. No sense applying for a job I can't work at right at this point. I really do not know how some people are working with a vestibular disorder.

I did get my new glasses in yesterday afternoon. I have had trouble finding the correct prescription. This last remake seems to be helpful. I don't feel like my eyes are straining as much as they were. It has definitely been helpful to get my prescription updated. If you are a vestibular patient, I recommend getting an updated eye prescription if you wear glasses or contacts. It is something that has helped me a lot over the past 24 hours.

Celebrating the Small Victories

Other than vertigo/dizziness, one of my primary symptoms is extreme and chronic fatigue. From doing research on other people with vestibular disorders, this does not appear to be uncommon. From what I've read, fatigue is caused because our brains are working hard on simple tasks.

I've been sleeping 10 hours + per night and still feeling drained the next day. This is unusual for me and started when my initial symptoms appeared exactly one month ago. I attribute it to having been sick and having a constant off-balance feeling combined with vertigo. I feel like my brain is working much harder than it normally has to in order to compensate for the misfiring signals coming from my right ear.

That has made functioning very difficult. I can typically accomplish one task outside of the house per day. Today, I was proud of myself for going to a Super Wal-Mart and grocery shopping by myself. Going into a such a large box store with lots florescent lights and lots of people and product is very difficult for me now.

 I have felt dizzy today but not a lot of vertigo, so I felt ok to drive myself. While in Wal-Mart, I accidentally almost ran into an old lady. I am sure she thought I was being rude or not paying attention. It was just that I could not tell how to orient myself turning a corner while pushing a cart for a brief moment. I just stopped and allowed her to go around me. I also knocked some jars around in the spaghetti sauce section because my depth perception is off. But I was proud of myself for driving and shopping by myself. I checked out and loaded the groceries into my car and brought them home and inside and put them away by myself. I then cooked dinner which I have not done in awhile.

While it was a great accomplishment for me to do this today (and being that it was one of the biggest tasks I have undertaken), I am drained now. I have eaten dinner and I am on the couch right now. I have been having episodes of vertigo since I got home and I am quite tired. I do not plan on doing anything else this evening, except for a load of laundry.

I am wondering if weather is playing with my vestibular system as well. It has been storming on and off since last night and tonight the weather is supposed to change pretty drastically. There are tornado warnings about 90 minutes or so from here, and severe thunderstorm warnings closer to me. Obviously, this means the barometric pressure has been changing quite a bit. I have noticed that I am having a lot more neck and shoulder pain this evening, which may be contributing to me not feeling well at the current moment.

The screen is starting to bounce around so I know it's time for me to cut my computer screen time.

First ENT Visit

I visited an ENT doctor today who specializes in ear disorders. He is keeping my initial diagnosis of Labrynthitis. He performed multiple exams and I then took a hearing test. After the hearing test, a monitoring device was put on my head like a headband. They put in a type of ear bud into each ear and it emitted a strange, deep-toned noise that made my ears hurt. They said it measured the amount of fluid and pressure in each ear. The test came back normal. I had slightly reduced hearing in my right ear, but the ENT said it was nothing to worry about and it ruled out something more serious like Meniere's Disease.

My ENT doctor also observed me walking up and down a hallway and noted that I drifted off to the right every time. Based on my symptoms and test results, my ENT believes I have Labrynthitis in my right ear. They also performed the Epley maneuver, which was inconclusive in my case.

I had a feeling my right ear was the culprit because the horizon tends to tilt right when I have an episode of vertigo, and I tend to drift to the right when walking. I have also fallen or lost my balance off to the right.

The ENT doctor diagnosed me with Labrynthitis of the right ear based on the following:

- sudden onset of symptoms. I was fine and the next minute I was not. This is a classic symptom of Labrynthitis.
- severe, spinning vertigo symptoms that lasted 10 days and have lessened *slightly* over time.
- sensation of rocking side to side.
- the upper respiratory infection I experienced about 3 weeks ago.
- I presented with some sinus issues. He asked me if I experienced sinus infections. I have not experienced them to my knowledge but he said my sinuses were slightly inflamed.
- my tendency to drift to the right side.
- my description of the horizon tilting to the right, and feeling off-balance primarily on my right side.

The estimated recovery time for Labrynthitis is an average of 4 months. He said since I was already one month into it, I have approximately 3 months left. I should start to feel slightly better every few weeks. He mentioned it could take a little longer to feel completely back to normal, and said fatigue and feeling very slow and off-balance is very normal and expected. The doctor recommended I modify my activities. Specifically, I am most likely not going to be able to continue my job working with horses. I am looking at another 3 months of not being able to do my job at least, so I let my employers know that this is going to be an extended time off, and they will probably find someone to replace me. This is disheartening but not unexpected. I am also not to drive if I am experiencing vertigo or intense dizziness.

I am looking at having to most likely find a new career. I really don't feel like I've improved enough over the last month to be looking at a total recovery in just another 12 weeks, especially to work in the equine field where I am tossing around haybales, riding, going up and down ladders and narrow staircases in barns, etc. The ENT also noted that my recovery has been slower than normal. I am very glad I decided to take college classes online. That means I can continue working towards my degree at home. That is another post.

I did nearly fall in the doctor's office when a nurse almost bumped me in a hallway. She was coming out of a patient room and I was looking down at the floor while I carefully walked as I was having a bit of vertigo. It surprised me and I stumbled. She and the doctor helped steady me, along with my cane. I have decided to keep using my cane as it has become pretty valuable in helping me prevent falls.

I have been referred to vestibular rehabilitation. The rehab place is supposed to call me in the next
day or so to set up my appointments. I was told that they will do further balance testing and teach me exercises to improve my posture and exercises to help my brain compensate for a faulty right ear.

I credit the first doctor I saw (an urgent care doctor at a walk-in clinic who said it was likely an "inner ear something") as well as my primary care doctor (who suspected Labrynthitis and immediately referred me to an ENT specializing in ear disorders) with a quick diagnosis. Most patient stories I have read online have taken months to get a diagnosis or even a referral to an ENT. I am very glad I was able to skip months or years and get a diagnosis in slightly less than 4 weeks. Granted, my diagnosis could change if things to not get better by the mid-December mark. But still, my doctors saved me years of wondering. Even if I get a different, modified diagnosis, I know it is a vestibular disorder and that is somewhat comforting to know what is.

The Prospect of a Lengthy Illness

While researching my own vestibular disorder (Labrynthitis), I have had to face the fact that I might be facing a long-term illness. I am lucky in regards to the experiences of other vestibular sufferers. I was diagnosed pretty quickly with a vestibular disorder, whereas a lot of people have to wait months and/or years for a diagnosis. I am still waiting for my ENT appointment day after tomorrow where I hope to either get a confirmation of my diagnosis, or a correct diagnosis. Labrynthitis is a "best guess" given by an urgent care doctor who recognized my symptoms of vertigo and balance issues, and ruled out other causes. Back to the prospect of facing a long-term illness.

From what my doctors have told me, inner ear disorders can stretch out over several months or several years. In my case, I had a severe upper respiratory infection, and my inner ear was most likely damaged or at least inflamed. Will my inner ear heal and the vertigo and dizziness go away? Going into my fifth week of symptoms, I am becoming less optimistic. I am going into the second week of unpaid leave from my job. I simply cannot do the physical things right now that I could do only 6 weeks ago. It is a pretty depressing thing right now for me. Luckily, I had decided to take online classes to finish my degree so I would have more time for my family. If I had not done this, I most certainly would have had to withdraw from my classes. So I focus right now on getting good grades.

Guilt

I am struggling with feeling quite guilty right now. My husband has suddenly become the sole income for our family. He has taken everything in stride and is working overtime shifts to help compensate for my loss of income. He has been very good to me, and I am so grateful I have him as a husband. I went from being an active, busy person to wobbly, exhausted and unsure in a matter of weeks. I haven't worn makeup or bothered to dress nicely since my first onset of symptoms almost 5 weeks ago. Bone-numbing fatigue sets in after small tasks, so dressing up or doing my hair is not a priority. He combed mats out of my long hair the other night because I have been too tired to do anything other than bathe and eat. I only drive short distances when I am having a good day, which is every now and again. I rely on my husband or my mom for rides since there is no public transportation where we live. I am almost completely reliant on my husband now, which makes me feel like a drain on him. I am not contributed to our finances, which makes me feel even guiltier. My husband is optimistic, thinking I will recover sooner than I think, and he has been 100% supportive. I know how lucky I am to have that. I also feel guilty for not being as "fun" a mom as I used to be. Fortunately, my 7 year-old daughter is very easy-going and loves to read, play video games, or watch movies. 

Depression

I will be totally honest on this blog. I have been quite depressed recently. Feeling dizzy, nauseous and tired all the time, day after ,day, wears on you and I have only been doing this a few weeks. I can't imagine someone having this type of disorder for years. The thought of it makes me even more depressed. The fact that I am very dependent now on people for rides to the grocery store is extremely hard for me as I am very independent person. The fact that I cannot put my dogs in the car and go hiking, or take my daughter cool places without lengthy planning is very difficult. Being unable to work and facing the prospect that I will no longer be able to participate in my lifelong love of horseback riding is quite hard for me. My job revolved around horses. I am simply too unsteady to be around them. If I were to ride and fall off, or stumble and scare one of the horses...the consequences could be dire, not just for me but for others. My only other job experience is in the restaurant industry. I could not work around grills or stoves, or carry tray when I am falling over at random times throughout the day. Thankfully, I am able to work on my online classes towards my degree. 

Adapting

I like to think I am a practical person. For a little over a month now, I have been ill and walking can be a challenge when I am having a lot of dizziness or vertigo. I have adapted somewhat to my symptoms. I bought a lightweight, aluminum cane off ebay last week. It does give me more confidence when I am walking, especially when I feeling dizzier than normal. I am a little embarrassed to use it out in public; I know that is just my ego coming into play. In the next few days, I would like to take my dogs for a walk around the neighborhood. Having my cane with me will definitely help me feel more confident. It has also kept me from falling at least once the other day.

Daily Goals

Since I am so exhausted, I have been setting goals for myself. For 5 weeks, it was eat and bathe. Now it is eat, bathe, brush my hair, do one thing around the house like a load of laundry or dishes, stand outside for a few minutes without my cane. Get the mail without my cane if I am feeling up to it. Go somewhere at least once a week, even if it means getting a ride from someone. Do one thing for my appearance, like wax my eyebrows or paint my toenails. I typically feel worse in the evenings and the dizziness will tend to get more intense, so I plan to have my goals done by around 7 pm. Then I relax for awhile and don't do anything the rest of the night. This is working pretty well for me. Today, my mom is taking me to the grocery store. I am feeling dizzier today than I have in awhile, so I will be using my cane in the grocery store for the first time. 

9/11/16

On today, 9/11, we remember the sacrifices made by our countrymen on those ill-fated flights, in the Twin Towers, and all the first responders who bravely died trying to save them. May we never forget.

Resources for Vestibular Patients

If you have a vestibular disorder and have not being to VEDA's site, here's a link. VEDA stands for Vestibular Disorder Association, and they have a ton of resources for patients and doctors. You can search for vestibular specialists in your area. It is the most informative website I have come across when researching my own vestibular disorder (Labrynthitis). Here is a link to VEDA's Facebook page.

Here is a Youtube video of a talk given by Sue Hickey, a patient with a chronic vestibular disorder.  I found this talk she gave in 2013 to a group of nursing students to be incredibly comforting to me, as I could see someone talk about what I am currently experiencing. Sue has also written a book about her experience, called Finding Balance. I haven't purchased her book yet, but it is on my list of books to buy. It is always nice to know you are not crazy and you are not alone in coping with a vestibular disorder.

Welcome to Vestibular Girl

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.