Hello everyone. It’s been a long road, one with sheer and utter frustration, fear, confusion, despair all the while being told I am simply depressed and anxious. Here’s my LONG story…
Just over six years ago, I awoke to the most horrific head pain. I felt as if my head was literally split in two, one side feeling cut off from any sort of sensation or feeling, the other feeling heavy and congested. This came shortly after a business trip to San Francisco, where I felt slightly 'off' and a bit anxious. I have always had sensitive nerves, so I thought nothing more while on business.
I took another trip to Nashville to visit family for Thanksgiving, and I can only describe the experience as surreal. I was in a complete fog, I felt as if I had a sinus infection, but I didn't. I was (as I now understand it) suffering from intense depersonalization/derealization. It felt other-worldy. I didn't understand what was happening. I came back home, continued to work and things got progressively worse each day. I began to have intense visual symptoms, carpet patterns, brick side walks, etc., looked as if they were moving and cause me to lose balance, lights would flicker in my peripheral vision, I became very intolerent to bright light/sunlight, I began to develop oscillopsia, my balance got even more difficult to manage, my ears felt full and were always popping and crackling. I began to develop tingling in various areas on my head. My ears began to ring daily. Straight lines (on the computer, particularly, as I work with spreadsheets all day) looked crooked. Neck pain reigned supreme. I had to hold my head up at the computer to get through my day.
At this point, I went to an ENT and he immediately ordered brain scans. His concern and action was assuring, yet terrifying. He was very cryptic about the tests he was ordering and why he was ordering them. In hindsight I could have asked more questions but I was too caught up in symptoms and fear that I just went through the motions.
MRI scans came back clear. Thankfully. But I didn't have answers. No hearing loss. Balance testing showed nothing remarkable. I was sent on my way, and told I was Depressed and Anxious. In the coming months, this would be the diagnosis de jour from every Dr I would see.
I continued to work, and my symptoms continued to get worse. More balance problems. Difficulty walking. Visual phenomenon increasing. It was at this point I had my first panic attack. I ended up in the ER, only to be told I was… Yes, depressed and anxious. None of my initial symptoms were being addressed. I told them I knew the difference between dizziness induced by panic vs constant, chronic dizziness. And how about the visual symptoms? Ear fullness and ringing? And what about the difficulty walking? Oscillopsia? Well, my inquiries into MY well-being were taken as paranoia and self diagnosing–surely the hallmark of the anxiety spectrum! In their minds I only proved them right. The next several weeks would unfold as predictably as that ER visit. No one would listen. All the while, I got to the point of being unable to stand on my own without toppling over.
After calling family, they flew down to Fla to help me. Through several tough days and frustration, on both my end and my parents end as they couldn’t understand what was going on, I ended up back in the hospital. More tests, more scans, more prodding and poking. I was bedridden. I can barely recall the days in the hospital, only remembering pieces of my parents conversations. My parents divorced when I was 8 and oddly, having them together, with me, in the same room provided comfort and solace. I heard tears, I heard confusion, I heard silence as they slept on the chair next to my bed… I can also recall a few conversations my parents had with the Dr. He decided it was time to go on anti-anxiety meds, anti-depressants and antipsychotics. My poor parents, lost in confusion and wanting answers, agreed and I guess I agreed as well. I concurrently went through some physical therapy to try and regain my balance. Standing on foam, taking walks, again, I barely recall any of this. I got to the point of being able to walk, but not comfortably. At this point, the Dr decided there was not much else they could do. I was concerned about this new slew of medication being pumped into me, and was fearful of going home alone to manage the possible startup effects. So I voluntarily checked myself into the hospital’s psychiatric unit. That was an eye opening experience.
I’ve always been a perfectionist, a curious, inquisitive soul, and after coming home I was determined to find out what happened to me. I kept honing in on inner ear issues during my incessant research, yet, the various conditions didn’t always seem to fit my symptoms (and at this point I ALWAYS skipped over MAV). I needed a reprieve from the balance issues, so I embarked upon my own vestibular rehab. And it worked! Two weeks of my own internet-researched, hastily thrown together ‘program’ and my imbalance was 95% gone. I still had issues in grocery stores/big box stores, I still experienced the visual issues created by patterns and lines, flickering peripheral vision. Still had issues with computer screens. I had to wear a hat at work to block the evil powers of flourescent lighting. But in my mind, having my balance back was a milestone and I was more than happy to have gotten to that point. I was back to work, poly-drugged on psyche meds. But hey, it seemed to be working.
Months passed and the lingering symptoms did not subside over time. Bummer. I really began to wonder if I was truly going crazy. Of course the various doctors all said this was a result of depression and anxiety, and mind you I did check myself into the psych unit after leaving the hospital. I increasingly became convinced that maybe they were all correct. I became obsessive about googling every symptom I had. My depression deepened, and my anxiety did kick up into a true disorder. What I didn’t realize back then, though, and what I seemed to have forgotten was that all of this was precipitated by the imbalance, dizziness, visual symptoms. But over the years the anxiety and depression diagnosis overshadowed all of those initial symptoms. And every attempt I made to understand my continuing symptoms at subsequent Dr visits–even 5 days at the renounced Mayo clinic–would be overshadowed by my chart and history. And the meds I was taking were making me sick. But I continued to try and live my life–full of isolation, anger, drinking, losing friends and distancing myself from family. I lost myself, my center, and my identity and ran on autopilot day in and out for 6 years. How I maintained my job, I don’t know.
In November of 2012, I decided enough was enough. I could not live the way I was living. It had been 6 years, almost to the day, that all of this first happened. My symptoms never subsided--waxed and waned, yes--but never went away, and my balance had gotten worse. I knew it was not a result of anxiety and depression and I would not allow one more Dr to tell me otherwise. I did some further research and found a widely respected balance center at a local hospital that I seemingly dismissed or overlooked the past 6 years. I promptly made an appointment, crossed my fingers and toes and went to the appointment armed with my history, and more importantly, confidence and assertiveness. I think I told him at the start of our consult that if I was told this was anxiety and depression and no attempt was made to explore other possibilities, there would be no reason to meet or continue. He listened. He showed compassion and care. He took my history, my prior scans, he asked questions, he probed, he talked to me--not at me. And he directed me to a diagnosis I am now looking towards with more confidence and interest.
I overlooked MAV everytime I consulted with Google. Yet here it was, seemingly jumping, screaming, in my face telling me "you actually may have left one stone unturned." It took me several weeks and over the new year to research MAV. I had some resistance to this diagnosis, I was filled with confusion and doubt. I certainly lost faith in Drs... I was then directed to this tremendous forum, where upon reading all of your stories, the incredible information provided in the MAV FAQs and Discussion, the MAV survival guide (I broke down when I read this--so much of this resonated with me, it described me, it gave me validation for th first time...) and all of the other knowledge provided here...
What I haven’t shared is, as a child, I suffered excruciating migraines–migraines that no medicine could touch, migraines that rendered me useless, migraines that throbbed with every move I made, migraines that made me vomit to the point of dry heaving, migraines that needed complete silence, darkness and rest. From about the age of 7 to early teenage years, I would get a migraine and vomit, and that was par for the course. But I grew out of it, and from my teens until my late 20s I had only an occasional migraine and certainly not to the point of riding the vomit comet. In my 20s, I also had three or four bouts of severe spinning vertigo, but those attacks never lasted more than 30-60 seconds, and when they stopped I was fine. Shaken a bit, but physically OK. All fragmented, seemingly unrelated issues over a span of decades I never tied together.
That November, in 2006, the dam broke and brought me to where I am today. I never considered MAV. Until joining this forum–lurking, reading, crying, learning–I had never explored my past and never thought to connect what I endured as a child to what I am enduring now, still, at 35 years of age.
Today, I have a general feeling of reassurance and optimism–tinged with the old skepticism that re-emerges as I continue to evaluate where I am.
I have a prescription for Topomax that my Neuro-otologist scripted at my last visit to the Balance Center. I have not filled it because I am scared of more drugs that affect memory and recall, as my cognition has declined from the Benzos prescribed 6 years ago.
I’m going through PT for my neck issues, what seems to be a result of the poor posture I’ve had from holding my head at my desk the last six years 9 hrs a day.
Most importantly, though, I think I have the validation I’ve been searching for. As I continue to learn about MAV, it seems to look more and more like MAV may truly be the cause of my continuing symptoms.
It looks like it will be a love-hate relationship.
I’m a stubborn mule and it may take a bit more convincing, and garnering the courage to start the medication and tread through the cycle of trial and error.
Thanks for listening and letting me share my experience.