Amber Painter

I told them that I was having Tinnitus symptoms on a daily basis, like a roaring sound, and they immediately sent me to a Psychologist thinking "It was all in my head." VeDA is a great resource when you feel alone, or lost. Don’t ever give up!

Age: 28

Diagnosis: Ménière’s Disease

In August, 2016 I started to feel dizzy on occassion. The previous year, I had just earned my Bachelor degree in Social Work. I was still on the hunt for that perfect job to utilize my degree, you know, the normal stuff 26 year olds worry about. Therefore, I had no time to be dizzy! I thought the dizziness had something to do with blood sugar levels, or stress, so I consulted my Doctor to get that blood sugar checked. The Doctor said I was overreacting, when the blood tests showed nothing wrong. As a couple of weeks went by my Dizziness was becoming more than a ‘spell’, I felt as if I could not function any longer.

In September, I finally changed family doctors, when I started feeling my entire world spinning. This Doctor listened to me, and told me what I was experiencing was ‘Vertigo’. I had never heard the term ‘Vertigo’ before. My Doctor prescribed me Meclizine, and antihistamines in hopes of relieving some symptoms! The Doctor said I must just have really bad allergies, and began some Allergy treatment. In early October I felt like my entire world was crashing down! My ear’s hurt me so bad, I had so much pressure in one ear, I thought it was going to pop like a balloon! I could not stand up for more than 10 minutes at a time, I was spinning, and nauseous. I was bedridden for days. During this time in my life, I could not work, drive a car, or eat. I had so many negative thoughts running through my mind, I thought being told that I was dying would be easier at that moment, just put me out of my misery.

I battled with Doctors and Nurses not understanding me. I was told it was a Headache and I had many people trying to just feed me pain medication. Truly, I just needed some answers as to why I was so dizzy! One night, it got so bad that I finally went to the local Emergency Room. I still remember that night clearly, the receptionist asked if I had a history of headaches, and asked if I had tried Excedrin yet. I told her I was waiting for a Doctor, that I knew something was wrong. I felt like nobody listened to me. My mom knew something was wrong and encouraged me to go to the ER. I remember her telling me that the thought of an ‘Aneurysm’ or ‘Tumor’ popped into her mind. We were terrified there was a problem and nobody would even address my health. I thought that I was going to die.

That night at the ER, a doctor told me I had fluid in my ears. I had a past history with fluid in my ears, and had tubes in them as a child. It was labeled as “chronic ear infections”. He told me it was an ear infection, and sent me home with more Meclizine, Zyrtec, some antibiotics, and something for anxiety. I thought it was over, I was going to be relieved soon. I took all of those meds for weeks, and felt relief after the 3rd week. About 2 weeks later, it was happening all over again!
My Doctor finally sent me to an Ear, Nose, Throat, Doctor. I was sitting in the Doctor’s office thinking I would leave with some answers as to why I am spinning so much, as to why my ear’s felt constantly full. When the Doctor walked in, he looked in my ear and my nose and he told me nothing was wrong, and sent me home. I felt so sick sitting right there in his office, I was spinning at that very moment! I immediately called my family Doctor and had him send me somewhere else. He suggested I also go visit a Neurologist. Everyone in my Doctor’s office was starting to treat me like a hypochondriac. I told them that I was having Tinnitus symptoms on a daily basis, like a roaring sound, and they immediately sent me to a Psychologist thinking it was ‘all in my head’. I spent everyday wondering if I would ever have a ‘good day’ again. I just hoped that someday I could bend down without falling on my face, or feel like I was not constantly swaying back and forth.

By February 2017 I had visited 2 ENT’s, a Psychologist, an Allergist, and a Neurologist, all of which told me I had nothing wrong with me. One day I finally told my Doctor to send me to a University Hospital in Southern Michigan to see an Otolaryngologist. He agreed, and sent over a referral. I had to wait almost three months to see her. Those months went by very slow! I was constantly being given antibiotics because we all thought I was just getting ear infections constantly. It was a long three months. I will be honest, I left for that first visit with a negative mindset. I figured I would leave without an answer. Just another Doctor to tell me that I am crazy!
When my new Doctor greeted me, she said “It’s been a long road for you, hasn’t it? Let’s see what we can do to manage your symptoms.” She did a couple of tests, compared my hearing tests, and said, “I got you!” She said she had two diagnoses. Vestibular Migraine, and Meniere’s Disease. I felt a weight being lifted off of my shoulder’s! I had answers! She began to explain to me about how she wanted to start a low sodium diet, as well as a Migraine diet, to see if we can avoid medications. I have so many allergies to medications that we were afraid to try too many things that once. She sent me with some information, resources, and sent me on my way.
I have seen my Otolaryngologist every 3 or 4 months for the past year now. My Doctor is truly fantastic! When I visit her she makes sure to go over absolutely everything, and really listens to my concerns. When I have questions outside of my appointments, she is very responsive when I message her office! The Diet she put me on were not working very well for me. I felt minor relief, so it was not enough. We have since then decided to put me on a Diuretic, about 6 months ago. I have quickly realized that the battle is never over. I am still learning some of my triggers and what causes an attack. It feels like every week I learn something new about my disease. The Diuretic I am on does cause me to have low potassium, therefore I am also taking Potassium supplements, am on a high potassium diet, along with the low sodium diet. Sometimes I feel like I am a pin cushion with how often I need to get blood drawn. I get blood drawn twice per month to monitor my Potassium levels. It is not easy, but I can proudly say that I am content with our current treatment plan.
The past couple of years have been nothing short of a roller coaster for me. Coming to terms with having an illness that is not curable is not easy to do, especially before the age of thirty. There are so many adjustments I have needed to make in my lifestyle and personal life. Not every change has been easy, actually most of them have taken quite a bit of time to adjust to. But, life is not always rainbows and unicorns.

My family, Friends, and all my Physicians have been fantastic support systems for me. People that know me well, know my story, they know that it is possible I may need to leave work early/call in, cancel plans, or need to visit places with less noise or action happening. Recently, I have been able to return to a pretty ‘normal’ lifestyle. This past November I actually flew on an airplane to Washington DC for the first time since my symptoms started. It was a trip I took completely on my own to visit my family. Flying is one thing I thought that I may never do again. The idea of my ears popping left me feeling uneasy. I did a ton of research, and thanks to VeDA I found some ways to make it a smooth trip. Not only did I accomplish flying, but I also survived the busy city life, as well as riding on the Metro. I decided to not let life stop just because I have fears. I have been able to return to working pretty regularly, especially working in the field I went to College for. I am also exploring the idea of going to grad school. I know that life won’t always be easy, but I love a good challenge.
My biggest support person throughout my life has been my Mom. She is my biggest fan. She and I have both learned so much about Meniere’s Disease. We both enjoy reading about all of the treatment options. My mom knows my triggers, and is always on my side. She has encouraged me to conquer all of my fears. She drives me 2 and a half hours every few months to my Otolaryngologist so that way I do not need to go alone. She is also not afraid to tell others about Meniere’s or other Vestibular Disorders when people mention similar symptoms. She loves sharing VeDA’s posts on facebook and raising awareness of Vestibular Disorders. My mom is my biggest advocate! If I am having an attack, I don’t need to explain how I feel, she just knows. Although, I think that is a mom thing, they just know when you need them. Truthfully, I will always need her and I’m ok with that.
I found out about VeDA about a week after my diagnosis. I was doing a google search and popped up! I reached out with so many questions, and wanted some resources. I love that VeDA was there for me, and other vestibular patients. Any time I have questions, or would like more information on something, I know I can rely on VeDA’s website for answers. I recently found out about the VeDA Ambassador Team and just had to join! I have also started a Support Group thru their VSGN leadership Team because I want to provide others with the information that I sought out. I love to use my experiences in life, whether they are positive or negative because it all will help others.
My advice to other Vestibular patients is to remember that you are the advocate for your own health! If you feel that you are not getting answers, or do not like your treatment plan, do not be afraid to ask for new treatment options, or to seek a new doctor. Don’t be afraid to ask for help! If you are struggling and need added support, always know that there is someone out there willing to support you. VeDA is a great resource when you feel alone, or lost. Don’t ever give up!