Life With A Vestibular Disorder
"Doctor my balance is shot, the room is swaying, the floor is lifting me up and down with every step, walls are bending and I have this strange detached feeling from the world that I now see through fuzzy, static like vision. "Oh, and any ability to focus and concentrate or to multitask no longer exist" I say all this as I have just walked unaided from my seat through the waiting room, into the doctors office, turned and closed the door behind me whilst striking up conversation with the man all the while appearing as fit as a fiddle. I mean "I get it" I know my symptoms sound absolutely ridiculous, I know I look fit and able but there are 85 year old pensioners who can move around with more finesse and pizazz than me, well in my head and body it feels that way. If only people could see through my eyes and live for just one day with a vestibular disorder then they would understand how hard it is. I couldn't make these symptoms up if I tried.
I often wonder if I never had experienced this dizzy fate, would I believe a person telling me about some strange illness with it's far fetched outlandish symptoms. Maybe I would be the one rolling my eyes in disbelief. Life with a vestibular disorder is a roller coaster for sure. .
And so it Began
The relentless dizziness/vertigo and all of the other symptoms I now live with daily started upon waking one morning 9 years ago in May 2007. That morning my life completely changed. I went to bed the night before feeling absolutely fine. Six hours later I was violently awoke from a deep sleep by a powerful spinning sensation that completely disabled me. I opened my eyes to witness the room spinning around me as if I was on a fairground waltzer ride. I quickly sat upright gripping the mattress and staring straight at the wall which was also spinning like a whirlpool. I was unable to fix my gaze on any one object as my eyes were jerking uncontrollably. Gripping the bed I tried to push myself up to standing position, only to find that any small head movement (up,down,left,right) would throw the room one way and me the other. It felt as if a heavy weight was rolling around inside my skull. The thought crossed my confused mind that I might be having a stroke. The overwhelming spinning inside my head and of the outside environment lasted roughly 45 seconds. It then turned into more of a rocking and swaying motion (My world was now swaying side to side,up and down) With my heart pounding and sweat dripping I crawled to the bathroom nauseous from the spinning. I began to vomit into the sink that now violently jumped around in my fuzzy, out of focus vision. I then sank to the moving floor with my depth perception, spatial awareness, balance, vision and sense of reality all now drastically altered. Not knowing that these awful sensations were going to plague me for every single second from that day forth. Suddenly, overnight I went from being a care free and fit 27 year old guy into life with a chronic disability.
The years That Followed
Of course I immediately assumed that whatever was wrong would rectify itself in a day or two and that I would soon be back to normal. Instead my symptoms continued over the weekend and so on Monday afternoon I visited my GP. I was told that my loss of balance and the spinning sensation was probably due to an inner ear infection and that it would get better within a few weeks. No antibiotics were prescribed since the infection was thought to be viral. I went away reassured. Unfortunately a few weeks went by but my symptoms became more intense after having experienced yet another acute vertigo attack upon waking. For some unknown reason I was unable to recover within the normal time frame and so was thrust unwillingly into a long future of hospitals, GPs, waiting rooms, medical tests, rehabilitation, medication, wishing and praying.
A whole new reality was born. A reality of indescribable and unrelenting symptoms and constant worry. I became very familiar with terms that I had never encountered before such as Benign Paroxysmal positional vertigo, Uncompensated labyrinthitis/vestibular neuritis, Mal de debarqument syndrome, Perilymph fistulas and Migraine associated vertigo and so on. After four months of torture and no improvement I was referred to an ENT specialist for some balance tests. The consultant I visited performed some basic neurological tests on me. He also monitored my eye movements and told me that I now have nystagmus (Involuntary twitching of the eyes) common following a vertigo attack or dizziness event. He also performed a special move on me called the Epley maneuver. At the end of the consultation I was told I had Bppv and that it will go away very soon. I went away reassured yet again that everything was going to be alright, I just had to wait this thing out.
What followed was nearly a year living (waiting out) these terrible symptoms all day everyday. I made repeat visits to GPs during this time and was simply told that in some cases it can take up to a year for the dizziness to go away. At this point I wondered if I was being taken seriously. Had the doctors truly understood my symptoms, about how they were affecting my daily life?. I had no life. At the end of 2008 I was referred to the same ENT specialist who treated me back in 2007 and his audiology department. I visited the hospital once a month completing various vestibular medical tests and what became a 9 month course of Vestibular rehabilitation. At this point I was told that I had uncompensated labyrinthitis (yet no hearing loss) and that vestibular rehabilitation would help me. After nine months nothing helped and I felt exactly the same as I did the very first day I woke up with the problem. The consultant and audiological team admitted that they did not know what else to do for me so they referred me to an ENT department at yet another hospital.
It was now 2010 and I had my first appointment with my new consultant at the new hospital. He listened to everything I had to say and he quickly came to the conclusion that I had visual vertigo brought on by an acute vestibular upset and that 6 months of vestibular rehabilitation with his trained physical therapist in combination with a small dose of medication would be beneficial. Yet again I was hopeful (at least I was finally getting some medication to try and help me). This was the first time I was given any medication.
One year on, in 2011 after monthly visits and following the consultants advice of completing vestibular rehab a second time, I was discharged having made no improvement. I was simply told.there was nothing else they could do for me. To say I was lost at this point is an understatement. I felt completely abandoned. My life was in ruins. The symptoms that I had were overwhelming and ruining my life. I had no social life to speak of and my future was/is full of uncertainty. Nearly 4 years had past in this constant ( I cannot emphasize the word constant enough) disorientated state and nothing I did and no doctor I had seen could help me. I mean how can an illness or condition not improve in all this time? How can the vertigo be so relentless?
During these years I completed all of the standard medical tests ( vestibular tests) such as the ENG test and I also had an MRI which thankfully came back with the all clear. In total I had completed 15 months of vestibular rehabilitation 3 times a day, everyday. I should say that after my own research on Vestibular therapy, I had carried out my own VRT routine for the first 2 years before any doctor thought of giving it to me. It seemed I was a medical marvel sent to confuse every doctor and specialist I came into contact with. I felt an immense feeling of hopelessness during these years as I got bounced around from one consultant to the next and referred from one hospital to another. When every doctor you see holds their hands in the air and says "I am stumped" there is nothing but hopelessness to feel. I will admit that from the very beginning there were times I was scared stiff wondering what was wrong with me. It took two years for me to be sent for an MRI. In that two years I worried that I may have a brain tumor or something else sinister. The whole ordeal has been frightening and I can honestly say that during this dizzy time I have experienced some of the lowest moments of my life. Regardless of all this I kept moving as much as possible hoping that my brain would relearn how to balance. I just hoped that I would wake up one day feeling normal again.
Nearly 5 years had passed with constant vertigo
After some research a supportive friend and I made a 5 hour journey to see a specialist with the title of Neuro-otologist. A neuro - otologist specializes in treating Vertigo, dizziness, giddiness (perfect). The consultant I met that day thoroughly explained what was wrong with me. In fact he could explain my symptoms and what I was experiencing better than I could which was a first. He told me that I have been suffering with chronic Vestibular Migraine. He told me that important sensory information from my eyes, inner ear and even my muscles and joints are not being correctly interpreted by my brain. The brain, eyes, inner ear, spine and muscles and joints work together to make up a very complex system called our vestibular system. The vestibular system is absolutely vital to central core functioning. In my case irritated swollen blood vessels in a particular part of my brain no longer allows for this system to work harmoniously together. Of course I said I don't have migraine headaches and my symptoms are every second of the day with no rest. How on earth could my brain be constantly irritated for 5 years?
I was told that you do not require a headache to have migraine. Headache just happens to be the most common way in which migraine presents itself. He told me that most people display intermittent painful headaches and visual disturbances when they suffer migraine. However, due to the fact that a particular area of the brain is effected in vestibular migraine patients, symptoms such as vertigo, dizziness, imbalance and visual disturbances predominantly occur. He went on to say that this particular type of migraine can be constant in nature lasting years and years with no let up. I found out that it is the simple small things I do in the day such as concentrating whilst reading a book, walking around the house, the amount of visual stimuli I am exposed to, my environment as well as the food I eat all contribute in continually irritating my brain and pushing my symptoms over the edge daily. My brain has not been able to recuperate because simple everyday life get's in the way. Symptoms may ease a little one day but then are back full force the next. It's a vicious cycle he said.
He was the first person I have seen who did not throw his hands in the air and say "I don't know what is wrong". Instead he gave me a combination of medications (Migraine preventatives) to get to the root cause of the problem and also a migraine diet plan. He told me what I have is an illness and that it will take time to get better because I have lived with it for so long and this is how my brain functions now. He also said that he would "get my life back".
Well it has been a little over 12 months since I got the vestibular migraine diagnoses. I have been taking the prescribed medication and sticking to the migraine diet and I can honestly say things have improved a little. Unfortunately due to certain issues I have not been able to continue the proposed treatment plan and visits to my consultant as of yet but after just one visit, his diet and medication suggestions have given me a better year. I am not free of the dizziness and vertigo but it's not so overwhelming most of the time. Symptoms do intensify here and there usually in the evening but even my bad days or weeks are better than the whole of the first 5 years. I have even had a few moments were I have felt pretty damn good which is a huge change from what I used to feel like (there was never a good day). Anyway, like I said i am doing better and can actually workout again for a short period most days. Cardio only, no weights. I have found that exercise helps clear my head a little by taking away the fullness and heaviness. I usually wake up pretty dizzy but force myself to exercise and push through the imbalance and it helps for some reason. With the migraine diet and exercise i have lost roughly 38 pounds leaving me at a current weight of 156 pounds from 194 pounds. So these days I am less dizzy most of the time and a little bit fitter. I really do believe that once I begin proper ongoing treatment I will eventually be "dizzy free" yep, that is what he said. Onwards and upwards.
All in all the last 4 years have been pretty much the same as back in 2012. I have done better some of the time but am certainly not free from the dizziness. Due to miscommunication I have spent the last 4 years waiting to go back to see the specialist I saw in 2012 to start my migraine treatment fully but getting a referral back to see him has proved impossible. It's now May 2016 and finally a new doctor I am seeing is taking my situation seriously and wants me to increase the dose of my current medication over the next few months. If this does not have a more therapeutic effect then it makes sense to stop this particular medication and to try something new.
As of July I am medication free after several years. Unfortunately the dizziness persists. In that time I was treated with various anti migraine medications. They were Amitriptyline,Nortriptyline,Gabapentin and Topiramate. All were unsuccessful. Perhaps the combination of Gabapentin and nortriptyline which I took daily for over 5 years helped initially a little back in 2012 but overall they provided no significant improvement in all that time.
An important point to make is that chronic illness of any kind not only effects the sufferer but also the family and friends who unexpectedly see their loved one turn into an unfamiliar entity. Relationships can be strained. Luckily for me I have had a very good support system in my friends and family who do their best to help and understand and never pressure me to be here or be there.
Some folk may not be as lucky as me. This is an "Invisible illness" so getting a helping hand or a sympathetic ear can be very difficult. Looking completely normal on the outside doesn't help matters. I also feel that this "looking normal" has been detrimental in getting the much needed help over the years. I have heard my fair share of sly comments and witnessed the rolling of eyes and heard the "Get out more" "Is it really that bad" "Stop thinking about it" advice but i largely ignored such behavior and wisdom and I advise you to do the same. The truth is you can tell somebody until your blue in the face about your symptoms but they will never ever understand and truly appreciate what you are going through. They will never appreciate just how difficult simple tasks like crossing the road, taking a shower, cleaning your teeth, standing up, turning from one room to the next or trying to hold a conversation actually is, unless of course they wake up one day with a vestibular disorder themselves. Over the years I have felt stupid talking about my condition, I have felt like a fraud who is making up these extraordinary symptoms but I have come to the conclusion that I have nothing to prove to anyone. Living with vertigo for just one day is very hard, ask anyone who has ever experienced it. Living with vertigo and the all encompassing disorientation it causes all day everyday for 10 years is something else. It has been a huge test of mental strength and character for sure.
For any newcomers to the world of dizziness reading this, it is important to remember that the vast majority of people do get better in as little as a couple of weeks or a few months and you will more than likely do the same. Long term cases like mine are rare. Don't give up!
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