[Today is part two of my two-part series on Ménière's Disease. I only became of aware of Ménière's Disease via a dear friend of mine, Jennifer, who had been diagnosed a few years ago. I posed some questions to her and she answered them thoroughly. I believe she tells her story far better than I could. Below are her answers and thoughts on what I posed to her.]
When were you first diagnosed as having Meniere's Disease?
February 2012, about a month prior to me publishing the first issue of [Atlanta Cheer Magazine]. I got the diagnosis, which we had suspected, but just needed confirmed by an ENT (Ear Nose and Throat specialist). They did an audiogram and an ECOG (Electrocorticography) to diagnose me and let me know how much hearing I had lost.
This was after I had gone to EVERY other doctor you could imagine to rule out brain tumor and other conditions that cause similar symptoms. The hearing loss was key. Everything else it could have been, did not include hearing loss. So we were pretty sure it was Meniere's.
I had never heard about Meniere's Disease and never even thought of going to an ENT. I was in deep denial about the hearing loss and ringing/noise in my head. I watched an ABC Family TV series called, "Switch at Birth". In the show there is an actress, Katie Leclerc, who plays a deaf girl, who was accidentally switched at birth. She does such a good job on the show that I looked her up to see if she was deaf in real life. Turns out she has Meniere's Disease.
So naturally, I started doing research and found that [actress and singer] Kristin Chenoweth also has Meniere's Disease. The more I learned, the more EVERYTHING started to make sense.
For nearly 5 years, I just thought I was having eye problems and migraines because of my degenerative eye condition, Keratoconus. Several members of my family have it and from a young age I was told that I, too, would likely have it. So it was no surprise that I was diagnosed with that in my early 20s. I had been prepared for most of my life that I'd go blind one day. In fact, I was already legally blind, by 8th grade, but the disease had not progressed enough at that point for me to need custom fitted contacts that are based on topographical maps of each cornea. I got by wearing regular hard lenses until I was around 22. But I've never be able to see wearing glasses. I need the hard lenses to smooth out my corneas.
All the time I thought my eyes were breaking down, it was just because they were working over time to help do the job of my broken inner ears, in order for me to keep my balance. I finally realized that my dizzy spells were vertigo. It was the final piece of the devastating puzzle that is my health.
So, like I said, I was already prepared to go blind. But I NEVER expected that I would also one day loose my hearing. It was a huge, emotional blow. I had already been through so much medically. I had undiagnosed Lyme Disease from a tick bite when I was 18 years old. Had the red bull's eye rash, the flu-like symptoms for a week after and then I seemed fine until my last year of undergrad. But no one was talking about Lyme back then. So I never went to a doctor. By the time we figured out I had Lyme Disease, I was around 30 and it had done extensive damage to my nervous system and caused quite a few auto immune reactions. It is believed that Meniere's Disease is caused by autoimmune reactions. So this is how my ENT went and I believe I ended up with Meniere's.
So it was this huge slap in the face to learn that I would one day be both deaf and blind. And I really struggled with that fact. I cut myself off from family and friends and just cried nonstop for a good week. But then I asked myself, if this was something I could possibly fight and still do all of the things I had in the works ... the [Atlanta Cheer Magazine] launch in particular.
I asked myself, if I had to give up my eyesight or my hearing, which would I rather give up. The answer was simple... My hearing. I'm an artist, a creative and a very visual person. Sure I'm legally blind, but my doctors in Chicago are wonderful and are able to get me to 20/20, 20/40 (because it fluctuates as my corneas shift). And one day when my Keratoconus is bad enough, I know I can have a corneal transplant. They even have synthetic corneas now, so there is no risk of donor tissue rejection.
So I was like, "Ok, when my eyes go, they can fix that. But there is no cure for Meniere's. I have the more aggressive form that starts in the right ear. By the time I was diagnosed, I already had it in both ears, so I have bilateral Meniere's. I knew it started in the right ear first because the tinnitus and hearing loss in the right ear happened first. Then I started to hear the ringing/noises in my left ear, as well. My ENT confirmed it began in my right ear and told me it was not a matter of if I will go deaf, but when.
In spite of my diagnosis, I moved forward with launching the magazine. Looking back, if I had known just how much this disease would take from me, I may have made a different decision, but I am glad that I moved forward with my plans.
What doctors have you seen and how have they helped or hindered your progress?
Doctors aren't much help. There is no cure. There is no meaningful research being done for Meniere's. They just try things to see if it helps... Most of the time, it doesn't. The doctor just kind of looks at you with sad eyes as they tell you there isn't a cure and they don't even really for sure know what causes it, but the most commonly accepted medical opinion is that it is an autoimmune reaction to some of medical condition. So in my case, they think it was the Lyme Disease.
The number one hindrance to having Meniere's is that NO ONE fully gets what you are going through unless they too, have Meniere's. I have to STILL constantly remind [my family] that if they are not looking at me, WITH MY CONTACTS IN, in good lighting, I may not hear or understand what they are saying to me because I lip read. I've been unable to learn a lot of sign language because watching someone sign, makes me dizzy and can set off an awful round of vertigo and potentially go into a full blown attack.
Each attack is the same, but a little different. I start to get dizzy, I feel the onset of the brain fog, I start getting confused, the tinnitus is worse and my hearing can completely drop out in one or both ears. I get nauseous and I can't tell you how many times I've had to swallow my own puke when I'm in public to avoid embarrassing myself when vertigo kicks in. I usually start to sweat profusely as the attack sets in and I'm just completely out of it. But I've been able to fake wellness through many minor attacks and keep going at cheer events and in my everyday life. But when the REALLY bad attacks come, I can't do anything, but lie in bed until it passes.
The worst attacks are when the Meniere's attack triggers a migraine. Also, a migraine can trigger an attack. A Meniere's attack with migraine is the most brutal. I feel like I'm being stabbed repeatedly in the ears and back of my head. For those I try to ride it out at home. But there have been about three occasions in which I had to seek medical attention in the ER to get relief.
I also have what is known as drop attacks. I will just lose my balance all of a sudden and bam, I'm on the floor. These happen less often now that I am on proper medication.
However, I have become quite the recluse because I fear leaving the house. In the last year, I have started to experience hyperacusis, in which normal everyday sounds are amplified and distorted to the point it causing me to have physical pain in my ears.
I'm also afraid to leave the house... I'm afraid to leave the upstairs of our house some days... because I have overwhelming anxiety that no matter if I've taken my medication or not, an attack could happen. It is the unpredictability of this disease that causes my anxiety. I never know how I'm going to wake up. And if I wake up and if I'm having a good day, all it takes is stress, a loud noise or looking at a weird pattern to bring on an attack.
So my social life is dead. I don't want to make plans with friends and then have to cancel last minute because an attack hit me or worse yet, I have an attack while with a friend and they freak out and don't know what is wrong with me or how to help. Because there isn't a lot of awareness for the disease, simply saying, "I have Meniere's Disease," is not enough. And when you are in a bad attack, you aren't thinking clearly and it is hard to communicate to others what is wrong.
Having Guinness [a standard poodle] as my service dog has helped me regain some of my independence. I am now no longer afraid to be at home by myself. On good days, I know I can take him with me to grocery shop and he will warn me that I am going to have an attack a good 60-90 minutes prior, so I have time to get home and lie down in the safety of my bed. Also, if I get a little dizzy, he balances me and keeps me from falling. If I do fall, he will stand guard over my body and bark until some comes to assist me. He is also trained to help me get up, if I am able. On very wobbly days, Guinness is trained to help me up and down stairs. He can also alert me to sounds I may not hear, like the doorbell or a police siren. But even with Guinness by my side, I still experience anxiety.
The anxiety has led to some depression. But I try not to dwell on what I can no longer do, but instead I focus on all of the amazing things I can still do.
Also, I never thought going deaf would be so loud. The tinnitus (ringing/noise) in my ears is the LOUDEST thing in the room, ALWAYS. So not only do I have hearing loss, I have to also try to hear through the noise. And each ear has it's own sound. They are NEVER synced up to be the same. So for example I can have a high pitched whine ringing in my right ear and a totally different tone or noise in my left ear. It is so loud that it often wakes me up and keeps me from being able to fall asleep. I've found that turning on an audio book helps with me being able to sleep when the tinnitus is especially brutal. The tinnitus also just drives me nuts and can make me feel on edge. Then I'm snappy and rude, when I really don't mean to be. But no one can hear what's I'm experiencing with the tinnitus, sound distortions, etc, so they just think I'm being bitchy for no reason.
I've also figured out that your inner ear is a part of how your body copes with stress and found research to support this. I started to notice that as the disease progresses, I can't handle stress the way I used to. Have you ever had a huge shock and then felt a little dizzy right after? That's your inner ear helping your body cope with the stress. So I have to avoid stress, which is NOT easy when you work in the cheerleading industry with a bunch big personalities that thrive on conflict. I have to tell [my husband] Sebastian all the time to change his tone of voice because it can often send stress signals to my body and then an attack happens like clockwork.
As you can imagine, it has been difficult for a type A person like me to have to learn to not stress out and just go with the flow. It's still a work in progress. Having the children do homeschooling is hugely stressful, but I know it's what they need right now to have the opportunity to go after their dreams. So the kids and I finally have a working understanding that homeschool time is a drama-free zone. Do what you need to get done for the day, do your chores and absolutely DO NOT FIGHT WITH EACH OTHER. We have a funny sign on the wall to remind them of this that says, "Save the drama for a llama," and it has this freaky looking llama on it that the children find hilarious.
Also, if it's too hot, I have an attack. If my ears get too cold, I have an attack. Basically, I have to maintain a 72 degree environment to be completely comfortable. This gives me another reason to be afraid to leave the house because I can't control the weather or temperature at places.
I see my ENT rarely. There isn't much he can do to alleviate my symptoms, unless I get to the point in which I can't deal with the tinnitus anymore and then there is a procedure they can do that will just kill the damaged nerves in the inner ear and will leave me completely deaf. I mostly follow up on a regular basis with my primary care physician to make sure my dosage is still working.
I mean there are a lot of other procedures I can try... But from what I can tell by talking to others with Meniere's there is no proven solution that works and sometimes these procedures make your condition worse.
What symptoms/physical issues have you had to deal with?
Vertigo, Brain Fog, Tinnitus, Hearing Loss, Anxiety, Depression, Drop Attacks, Chronic Migraines, Loss of Independence, Loss of Control in My Daily Life (the disease throws up road blocks often and I have to adjust my plans)
The BIGGEST and most heart wrenching thing I deal with is the lack of understanding from others. I don't "look sick". Meniere's is an invisible disease. And when I'm in an attack, I just don't have much control over how I react to it. [Following an argument with my mother] on Christmas Eve [...] because of her lack of understanding, although I've told her over and over what this disease has taken away from me and how it affects my daily like, Mom just does not get it. Long story short, we no longer are on speaking terms. That was a huge blow. The one person who is suppose to love, support and be willing to take the time understand what you are going through, opted to just think I am lazy and a bitch, rather than see the manifestation of the disease and what it does to me.
I've also lost a lot of friends. I found out pretty quick who my real friends were when my illness got worse. They couldn't understand or cope with it and so I had to say good-bye to them to remove unneeded and potentially dangerous [stress and drama] to my condition.
I can't just pick up the phone and call my friends because some voices I just can't hear. Voice with more base I can hear better. But when people call me, they get peeved when I text back, "Hey, I'm pretty deaf today, call Sebastian and he can interpret for me or tell me in a text/FB Messenger.
Social situations are very stressful and awkward because I miss anything anyone says if they turn away or I was looking at something else and didn't hear them say something to me. It's embarrassing. Makes me feel like a spazz.
With each attack, more damage is done to my ears and I lose a little more of my hearing.
I can no longer ride roller coasters. And broadcast TV is difficult for me to watch because the volume and rapid change of tone in the commercial breaks freak my brain out.
I'm also exhausted most of the time because my brain is working overtime to interpret the confusing signals sent by my ears. It also takes a lot of concentration to lip read and anxiety is an energy sucker.
Also, it is beginning to be hard for me to hear/understand new music. Stuff I've heard before, my brain fills in and remembers and I can hear fine. I REALLY love music, so this has been a tough one. In addition, I usually cannot hear/follow a movie at the movie theater any longer. They have the closed caption glasses, but the text running across made me dizzy, so FAIL. Again, another thing I love gone because of this damn disease.
How have you dealt with/managed those symptoms?
I take Valium (5 mg) three times a day with my meals, preferably at the same time each day, but that rarely happens with our crazy lifestyle. I follow a low sodium diet and I meditate to help alleviate stress. I wear sunglasses any time I know there is going to be flashing lights or large crowds. They help knock down the visual confusion that can cause vertigo and potential a full blown attack. I even shot competition photos for cheerleading with my sunglasses on. Or at least I did before [my daughter] Juliana took over because it became too dangerous for me to be stage front to shoot photos.
They tell you to stay AWAY from caffeine. However, I used caffeine to help pull me out of a migraine before it gets too bad and I have to take my Imatrex rescue pill, which is REALLY hard on my body and puts me down for a minimum of 12 hours.
I have noticed that the tinnitus is less when I do not have caffeine or chocolate. So it becomes a trade off. Can I deal with the migraine or the louder tinnitus? Which one would be worse on me today? Caffeine also helps pull me out of the brain fog. And you know immediately when my Valium has kicked in. It is a noticeable difference to Sebastian, the kids and to me. I can function better.
How has living with Meniere's Disease affected your life?
It affects EVERY aspect of my life. It consumes me and I feel like I lose what makes me me a little more every day. I mentioned my difficulties with friends and family above. It took about two and a half years for Sebastian and the kids to finally get it. And even now I still have to remind them that I'm going deaf. It's easy to forget because I can feel awful, but nothing looks unusual about me.
Part of it is my fault, I have to admit. I've become a really good actress in order to keep going when I don't feel well. I don't want to let others down or have the disease define me. I am struggling to stay who I am. I struggle through and pretend I'm well in order to attempt to preserve the person I was/am/will be again. It's hard to define.
When I meet people and they ask what I do, I don't know what to say... I was this or I am this or when I'm better (still hanging on to some hope) I will be this again...
As I mentioned before, I no longer take photos for the magazine. I have also hired an assistant editor to help me do the writing because I just can't do it the same as I did it before. It's incredibly hard on me now. This year at CHEERSPORT Nationals, the largest cheerleading competition in the world, all I did was stay back stage and watch Atlanta area Worlds teams and other Worlds teams from the side, while wearing my sunglasses.
What other thoughts and comments do you want to share?
I use humor to cope a lot. But I am not above throwing a pity party on particularly bad days. Those still do occasionally happen.
I think the key to staying sane with Meniere's is to have the support of others who have the disease, too. And although Meniere's affects everyone a little differently, there are broad commonalities that we all experience and can relate to.
The online communities I belong to help keep me going, help keep me from feeling alone, especially when I feel the isolation the disease causes. It also helps me when I am able to lift another Meniere's patient up or make their day a little better by being a source of understanding and support for them on their bad days. It makes me feel like I have a purpose and I'm useful. And it is important to feel useful and feel like you can contribute to the world and connect with others, because this disease takes so much from you.
I should also mention that bending over is just asking for my head to crash into the floor. So we have one of those hanging pots and pans holders, so I can cook and nothing I need to get to can be below my waist level. So we've modified the house, as much as we can to accommodate the disease. But I still struggle. If I can't find something and I have to search for it, I usually end up getting dizzy and sitting down as I call for help. Also, basic household chores are off my list, like laundry, loading/unloading the dishwasher, etc. Sebastian and the kids have had to take on a lot of things that I used to do, but can no longer do safely. Last time I did laundry I fell and came within inches of hitting the corner of our table, which could have caused a serious injury.
[*Jennifer and her family do extras work on locally-shot films and TV pilots.] On the two days I worked on set with Juliana for a film, not being able to hear well made it really difficult for me. Plus, both days were 14 hour days (10 hours working and 4 getting ready and driving). I was so terrified I was going to mess up because I might miss an action or cut command. I did fall twice each day. Thankfully, not on set, but in holding or walking from holding to base camp. I didn't have Guinness with me because a service animal simply isn't practical on set for a lot of reasons. But I've got a pretty strong group of friends that watch out for me on set. There are about 5 other moms that have joined forces to help each other. I'm lucky to have that. And to them my Meniere's is no big deal and they are VERY understanding because each of them have either experienced chronic illness themselves, had a child with a traumatic injury or are a nurse/someone who works in the medical field.
I have known Jennifer for about five years running and, as I mentioned at the top of this posting, I knew about her diagnosis. I have also heard from time to time from her about how her condition has progressed. I hope that, in addition to yesterday's Part 1 post, Jennifer's personal account will bring more attention to this disease to the public and, perhaps, to the medical community at large. Huge thanks to Jennifer for being so open about her condition.
If you or someone you know has Ménière's Disease, I urge you to seek help and to press the medical community to move forward on research. Here are some resources you may find helpful:
The American Academy of Otolaryncology--Head and Neck Surgery (There's even a link to help you find an ENT in your area.)
Vestibular Disorders Association (This is a link to its specific page on Ménière's Disease, but you may want to research the rest of its website.)
Ménière's Disease Team (A Facebook community, which Jennifer said has helped her a great deal.)
Meniere's Support Group (Another Facebook community recommended by Jennifer.)
Terry
The Gaylord Nelson Newsletter The New York Daily News front page
