My disorder is called Cervical Dystonia. For the past 10-15 years I have been struggling with various symptoms trying to get a diagnosis. Unfortunately, Meige’s syndrome is almost impossible to diagnose and cervical dystonia can only be diagnosed once it is visibly noticeable. I have always been very sensitive to light. In my early 20’s I began to have difficulty sleeping and I have always slept on my stomach with my head turned to the right. It’s crazy because I used to sometimes think “if I keep sleeping like this my head might get stuck”. Sometimes visualization is not a good thing.
In my early 30’s my symptoms began as migraine type headaches and muscle cramps. In 2004 I decided to get braces because my teeth had started to crack. My orthodontist said that I was grinding and clenching my teeth while I slept. In June of 2008, I married my husband after dating for 10 years. In February of 2009 I was 40 years old finally about to graduate with my degree in Interior Architecture from Chatham University. I was in the last month of my internship at The Design Alliance Architecture Firm when I found out that I was pregnant with my second child. My life plan was not unfolding exactly as I envisioned, but we were happy for our late-life surprise. There was also the recession going on so I was basically screwed as far as getting a design job. I ended up waiting tables and bartending until my eighth month of pregnancy and then I finally ran out of gas. I had gained about 45 pounds and during my pregnancy I was very emotional and felt “off”. I would wake up with night sweats and my feet and hands would cramp-up while I was sleeping. Once again, these were normal symptoms of pregnancy and I was forty-so I just went with it.
When my son turned one, I decided to look for a job and started working full time at a kitchen and bath showroom as a designer and salesperson. On my first day I had to leave because I was sick. I went home and was vomiting for two days. We had put Micha in daycare and I figured I'd just had picked up a virus from him. Four weeks later I was sick again with a cold. I felt like all of my energy was drained and all of my symptoms were getting worse. My left ear would turn bright red and get very hot and I would also get ringing in that ear. Of course I went to a ENT specialist and they found nothing. I ended up calling off of work quite often and the stress was really getting to me and causing friction at home. I went to the emergency room at least three times after work during those nine months because I felt so ill and was having a hard time swallowing and breathing. They said it was an anxiety attack. I finally went to an immunologist and after a series of bloodwork I was diagnosed with Selective IGA Deficiency. A normal person's average number is about thirteen and mine was one. My immune system was shot and unable to fight off any form of virus or infections. I was treated with pneumovax which is a pneumonia vaccine that would reboot my immune system. The vaccine took a while to kick in but eventually I stopped getting sick so often but my neck pain and fatigue did not go away. After 8 months at this job I had a night where I felt completely panic stricken and could not sleep. This turned into weeks of total insomnia which I have never experienced before in my life. I literally did not sleep for 3 weeks and thought I was losing my mind. I lost 8 pounds in one week. I was worried sick and felt like I was dying. I have always had trouble sleeping and felt like someone had poisoned me. One night I came downstairs at midnight and told my husband I was going to get help. I drove myself to the Western Psychiatric Hospital where I waited 8 hours to be admitted. I was so scared and so sick. I could hear people screaming in the emergency room. It was terrifying. They put me in a private waiting area with a bucket that I could vomit into until I could be admitted. I was taken upstairs to the trauma unit where I was asked remove all of my clothes and hand over all of my personal belongings. You have to sign a form acknowledging that you will not be released until the doctors say that you are able to go home. I could not stop shaking. In the unit there were about 20 patients. I had to share a room on a plastic mattress on the floor. Some rooms had a connected bathroom and some had a bathroom that was shared. Over the next few days I was evaluated and diagnosed with post traumatic stress disorder (which I already had been in therapy for and thought I had already exorcised those demons) and generalized anxiety disorder. (When I was 12 years old I came home one day to find my father being loaded into an ambulance after my mother had shot him 5 times. Thankfully, my father survived and that's an entirely different story that I will write about some day.)
After I finished the three months of outpatient intensive therapy I found a part time job working for an interior designer as her assistant. The only way I could describe how I felt was shell shocked. I constantly felt like I had electricity and poison running through my veins and the pain in my neck and body was getting worse. I always took pride in being a hard worker and I had such a great love for design but felt useless at this job. I was mentally and physically exhausted. To make extra money I took a job waiting tables a few nights a week. I was having a hard time concentrating and keeping up with the job. I started having bouts of insomnia again. Within 8 months I ended up losing both of these jobs because of my inability to concentrate and work effectively. In all of my years of work I have never been fired or let go of a job. This absolutely crushed my soul and I felt so lost, sick and so helpless. What happened to the girl who used to be fearless? What happened to her creativity and desire? Where did her passion go? Why am I not the mother I always dreamed I would be? Why am I just going through the motions and not enjoying life? How is it possible I went through all this therapy and I'm still all f**ked up?
After I lost those two jobs my father-in-law was kind enough to hire me to work at their family business. My husband was at his wits end-as anyone would have been in this situation. I knew something was wrong but all the doctors said I was physically fine and I kept taking all the medication the psychiatrist had given me. I now felt like a zombie on top of all of the physical issues. I wanted to try to lose the weight I had put on during pregnancy but was so exhausted all of the time. I was doing some web design work which I enjoyed and I also found a job working part time at Crate And Barrel. I was still feeling the same symptoms as before, but I seemed to able to manage and keep things under control for a while. I had come to a point where I accepted the fact that I had a sleep disorder and chronic pain and would have to learn to deal with it. I stopped the therapy sessions and my primary care physician prescribed an antidepressant (amitryptaline) and xanax along with the trazodone I was taking for sleep. I was taking all this medication and still felt all the same symptoms.
Eventually, I applied for a full time position at Crate And Barrel and got the job. Once again, I did not feel that my full potential was being realized and I had a difficult time keeping up with the job. I had a hard time concentrating and keeping up with the physical aspect as well. My neck pain seemed to be getting worse every day and I was going to the chiropractor 3 times a week for help. All of my paychecks were going to pay for medical bills. I started seeing a hypnotist to try to unlock any demons that I was holding on to.I was so desperate for help. In July of 2014 I noticed that I was having a hard time turning my head to the left. In August of 2014 I was driving my car when suddenly my head started shaking uncontrollably and I had to use my left hand to hold my head still so that I can drive focus on the road. The chiropractor told me that I may have spasmodic torticollis and they could help me work it out through traction and adjustments. One night I was trying to prepare dinner and I sliced my index finger open with a knife. I went to my primary care doctor for stitches and he referred me to physical therapy once I told him about my head and neck issues. I tried physical therapy for 4 weeks and I was just getting worse and felt like someone was pulling my head to the right and I couldn't look to the left. Somehow I was still going to work. I felt like I was losing my mind and I'm sure my co-workers and family felt the same.
After calling off of work in November 2014 for 3 days, I had to take a medical leave of absence. I went back to my primary care doctor and they referred me to a neurosurgeon who saw me the next day (usually it takes 4 months to see this particular doctor). I could tell by the way he and his resident walked me out the door holding my hand that I was not in for good news. He then referred me to a neurologist who specializes in movement disorders who saw me the next day.
The movement disorder specialist told me that I have a rare brain disorder called Cervical Dystonia. He told me that my treatment options involved a series of Botox injections into my neck that would paralyze the muscles causing the pain and pulling that I could not control . He also prescribed a muscle relaxant called baclofen and an anti anxiety medication called klonopin. I was also given a prescription for vicodin for pain but that made me very sick and I am NOT able to take any opiates or pain medication. They all make me so sick it just adds to the pain. He also told me that there is no cure for this disease and that as a last resort they do a procedure called Deep Brain Stimulation which involves a surgically implanted, battery-operated medical device called a neurostimulator—similar to a heart pacemaker and approximately the size of a stopwatch—to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and dystonia symptoms. Fun.
Let me describe how dystonia feels. For any woman who has experienced childbirth and contractions you know that they will stop after the baby is born. Dystonia feels like that type of uncontrollable contraction in your muscles and they never stop. You feel like you may have been poisoned and then you feel nauseous and sometimes dizzy. Your muscles are so tense and sore and they will not relax. Then you start to feel panicky because you do not know why this is happening. Your mind is sharp yet you try to control your body movements and it does not work. The pain is excruciating. It feels like someone is pulling the back of your head by the hair and your muscles have turned into coiling serpents under your skin. You feel possessed. You cry A LOT. The part of the brain that is damaged when you have Meige/Dystonia is the Basal Ganglia and it controls muscle movement and emotions. It sucks. Dystonia just plain sucks.
After visiting the movement disorder specialist I decided to get a second opinion. My best friend's sister recommended a doctor in Greensburg Pennsylvania that was called a functional neurologist. I had never heard of this type of doctor and started to do some research and figured it was worth a shot. She told me he had been helping her son with his concussion symptoms and specialized in vertigo, concussions, and traumatic brain injuries. Functional neurology does not use drugs or surgery. I called their office and told the nurse about my situation and Dr. Shine personally called me back and say he would do his best to try to help me. (How many doctors do that?) The next week my father drove me there to see if this would be an option for me.
My first examination with Dr. Shine had me skeptical, yet hopeful. He did a series of tests and therapies using eye movements. He also has a hyperbaric oxygen chamber that I went into for an hour. He said if he couldn't help me he knew a place I could go where they possibly could. That place was the former Carrick Brain Center in Marietta Georgia.
A few weeks after I started this treatment with Dr. Shine I also had the Botox injections done. I had 30 small shots injected into my neck and shoulder. I was so desperate for pain relief that I would have tried anything. Here I was, 46 years old with my Dad holding my hand while I’m crying and getting shots at the doctor. I looked up at my dad and he was crying. I felt like I was 12 years old. This was ridiculous. The actual injections were not that painful so if you are considering this option it sounds worse than it actually is. We tried to celebrate Christmas normally and make it fun for my younger son, but it was hard for me to put a smile on and fight through the pain.
After a few weeks I started to feel a slight shift in the way I was holding my head and the level of pain. It was still intense but not nearly as bad as it had been. Now we weren't sure if it was the Botox working or the treatment I was receiving from Dr. Shine. After a few weeks, Dr. Shine, my family and I had decided to make an appointment at the Carrick Brain Center to see if they could help me. While Dr. Shine felt we were making progress, he wanted me to get the proper testing and diagnosis using the technology and treatments they had at the former Carrick Brain Center. The cost was $1000.00 a day but I felt that if I could go there and they could help me get back to work it was worth every penny and could pay it off in a few months..
Everyday I was struggling to make sense of what was happening to my body and my mind. I would wake up and forget that I was sick and as soon as I stood up my body would be screaming in pain. All I could do was worry about the future. Was I going to end up in a wheelchair? Was I going to live the rest of my life in excruciating pain? I was so angry and so sad and felt so incredibly helpless.I felt like I was drowning and looking for anyone to throw me a lifeline. I had basically been taking care of myself since I was 18 years and I could not believe this was happening. I had not yet reached the level of acceptance that you need to face this kind of chronic illness.
On my oldest son’s 20th birthday-January 21st. 2015, I flew to Georgia to the Carrick Brain Center. I had an early flight and went from the airport straight to the Brain Center. (which in hindsight was a terrible idea...I was trying to save money and ended up totally exhausted.)
I was taken in at 10:00am and introduced to Dr. Nathan Keiser and Dr. Angela Gabella.They would be the primary doctors that I would be working with and several other doctors would assist with preliminary testing. They did a series of extensive testing on my eyes, coordination and balance. They also watched me walk to see if I had gait abnormalities and had me do a series of coordination tests. After that, I went and got some lunch and came back to get the test results. After getting the results(which were shown to me with videos of my eye movements and graphs and charts and definitely makes more sense to the doctors than the patients) I took a break and went to check into the hotel. At 3:00pm I did my first round of targeted eye exercises. After that I went back to the hotel to rest and planned on having dinner but ended up getting very nauseated. I think it was a combination of stress, the testing and exhaustion all hitting me at once. For the rest of the week I would go to the center three times a day and work with the doctors doing these exercises and they would monitor my progress. The care and compassion that all of the doctors extended to me as well as other patients went above and beyond any traditional medical visit I had ever experienced. The passion and dedication to what they are doing was so inspiring and amazing to be a part of. I have wished so many times that I never got this disorder, but then I think about the experiences I have had and the amazing people I have had the chance to meet. Always try to look at the opportunity in suffering, right? By the end of the week they felt I was making progress and sent me home with a series of exercises that I would do three times a day. They suggested swimming and yoga as well as deep breathing and meditation. Anxiety is a huge part of dystonia flaring up, so it is very important to stay calm and cool. It is almost impossible at times but I keep on trying.
I was due to return to work the second week of February 2015 or else I would lose my family’s health benefits as well as the income we were now losing since I took medical leave. I was also due to start repayment on my student loans that exceed 50K. Avoid stress? Stay calm? Yeah, right! I was still able to drive if I did sensory tricks by holding my left hand to my left cheekbone and pushing on it, but really I was starting to feel like a hazard to myself and others. My head tremors were the worst in the car. I started swimming 3 times a week by holding a kickboard and doing laps to strengthen my core. Getting out of gravity in the water felt good, but as soon as I was back on land I felt terrible. I forged on and went back to work in February where everyone was so amazingly supportive and helpful. I tried to fight through the pain everyday and did OK for about 3 weeks and then I felt like I was getting progressively worse. I tried another round of BOTOX in March and was hoping that would help ease the pain but it actually made it worse and my body was failing me. One day at work I realized I was walking down the stairs with my face pressed against the wall and walking sideways. I was so dizzy and had a hard time focusing. At home I was trying to hide the fact that my right hand was trembling. My neck was so twisted that it was pinching nerves so that my left arm felt tingly and numb and at it’s worst I could not touch my left fingers to my thumbs. I used to play guitar so that was tough to fathom. My chin was stuck to my left shoulder and therefore my body’s muscular system was all out of whack and not working properly. I made it six weeks at work then asked to take another medical leave and made an appointment to return to Georgia. I also filed for disability. I figured I should hope for the best and prepare for the worst. When I told them how quickly I was regressing they wanted to see me as soon as I could get there. I just did not want to admit or accept how truly sick I was.
I was able to book a trip to Georgia the third week of April 2015. Financially this was a huge blow. I thought after the first trip I would be able to get back to work and pay off the debt we had incurred. I ended up doing the most humbling, most embarrassing and most incredible thing at the suggestion of my doctors. I started a fundraiser for myself on GO FUND ME. You cannot believe how generous and supportive people can be and how incredibly grateful I was for the donations and words of encouragement that came through. I posted it to Facebook and friends, and friends of friends sent money to help me out. It was amazing. I was able to raise almost $3,500.00 towards the trip. By the time I left for Georgia that week my left foot was starting to drag and I was having a hard time controlling movement in my left hand and foot. They were constantly tingling or numb. Sometimes my left knee would give out and I would have to catch myself. My body was twisted and my neck was pulling and my head felt like it weighed 30 pounds. I could barely feed myself or brush my hair. I was wearing a neck collar for support. Although I was in tremendous pain, I forced myself to walk onto that plane on April 17th. I refused to get in a wheelchair. The flight down was the most turbulent ride I have ever experienced. That day, there were several major storms that involved tornadoes that we were literally flying over. I kept wishing that the plane would go down and everyone except me would survive and my family would get the insurance money and I could just be done with this nightmare and they could move on with their lives.
That week at the Carrick Brain Center was spent with Dr. Keiser and Dr. Gabella trying to figure out a way to introduce my body and brain back into gravity. They had contacted Dr. Carrick about my case for his input. The doctors had done all of the usual preliminary visual, vitals and balance testing. They had been doing a series of treatments that involved me laying on a chiropractic table and looking up at an I-Pad doing targeted eye exercises then flipping/turning my body to the left. By the end of the week I could see by the looks on their faces that they were at a loss as to how I could simulate this program at home. On Friday morning the Dr. Keiser and Dr. Gabella told me that Dr. Carrick was going to be in town the following week and he offered to fit me into his schedule during Grand Rounds. During Grand Rounds week he sees up to 65 patients and trains up to 90 doctors. I called my family to get their opinion and they all said to go for it. I was thinking about the financial part more than my health, but I am so glad that I stayed. My husband and I laugh and say I hit the lottery twice-I got a super-rare brain disorder and then I got to see the best doctor in the world who is an expert in movement disorders.
Dr. Carrick was not able to see me until Tuesday. So from Friday until Tuesday I had a lot of time to think in that hotel. Hotels are not fun when you are alone and sick. I tried to sit in a lounge chair by the pool and my head kept pulling and I could not relax. I was not able to read and the doctors said to avoid TV so that my eyes could rest. I was on the sixth floor and kept looking over the balcony thinking if Dr. Carrick says he can’t help me I’m going to jump from this on Tuesday and just be done. I was in so much pain and it was a very long five days.
Tuesday morning came and I took the hotel shuttle to the brain center. I was nervous, excited and scared. I did not want to jump off that balcony. I wanted hope. I was escorted into the exam room where they were setting up a video camera and a few doctors would pop in and ask me if I needed anything and if I was excited. This was a big deal for them and for me. When I was told Dr. Carrick was ready to see me the room was filled with about 15 doctors that were there to observe his examination of me. Dr. Carrick then came in and began his examination. His warm, outgoing personality and sense of humor put me at ease immediately. He asked if I felt better or worse after being treated last week and I said worse. He asked how I felt. I responded-Like I had 12 margaritas and none of the fun or a good story to go with it. He had me to touch my hands to my face and touch my fingers to my thumbs. He checked my reflexes. He asked me to turn my head in both directions. He looked at my eyes and said that he he saw my eyes doing square wave jerks. I had no idea what that meant so I looked up the definition. Square wave jerks (SWJ) are saccadic eye movements which, when recorded with open eyes are considered to be a pathological sign, caused by fixation instability, and pointing to a central neurological lesion.
Causes of Square Wave Jerks
Basal ganglia disorders
Here is a link to a video of Square Wave Jerks
Dr. Carrick then asked me to open my mouth wide and hold it open for a minute. Then I had to squeeze my eyes shut as tight as I could and hold it as well. He observed that when I did this my cheeks and mouth started to quiver and shake. Then he asked me to stick out my tongue and hold it for several seconds. He asked me how long had my tongue wiggled like a snake. I responded that I normally do not look in the mirror sticking out my tongue for any length of time and we all had a good laugh. He then asked how long had my feet been purple and I said that in the winter sometimes my left toes would swell up and look like grapes and get very sore. He noted that my hands were also purple. He asked one of the doctors to get him some hot, wet towels.They returned and he and the other doctors wrapped my feet and hands in the hot towels and then proceeded to examine my eyes. The square wave jerks had stopped. He said that my hands and feet were purple due to poor circulation and that the same amount of blood that circulates through your hands and feet is the same as what is circulating in your brain. Basically my brain was not getting enough blood circulation and oxygen. He diagnosed me with Meige’s Oromandibular Syndrome (Oral Dystonia) as my primary disorder and it had spread to my neck causing the cervical dystonia, and to my left arm and leg. He said that Botox would not work for me and that he felt confident that this treatment plan would work. I asked how long would it take to feel better. His response was that some people see results in weeks, some take months, some take years and some just don’t get better. Every doctor in the room was floored. They all had learned so much from my exam and the doctors I had been working with were so happy that I stayed and got properly diagnosed. I was getting high fives and hugs from doctors I had never met and was sent back to the hotel to rest and get ready for my new treatment plan. It was bittersweet. I still felt like a hot mess and could barely walk but now I was given some hope and that is what I so desperately needed. I spent two more days with the doctors doing targeted eye exercises while keeping my hands and feet as warm as possible.I still had to do these exercises laying down facing up to look at an iPad they had on a stand over my head on a chiropractic table.On May 1st I flew home. I was in so much pain and had such a hard time walking that I sucked up my pride and used the wheelchair service getting on and off the plane.
When my husband picked me up at the airport I could see his concern. I could barely walk and was exhausted from the travel and the whole experience. It was physically and emotionally draining. I was so happy to be home (even though I felt terrible) and we got started that week setting up my therapy room with a tablet rigged onto a microphone stand. We bought microwavable slippers and a heating pad for my head and I got out my ski gloves. By the third week of May I was set to get started on my therapy.
I am in the process of writing a book about the rest of my journey thus far. If you are interested in receiving updates please fill out the "Contact Me" form.
Thank you for your support!