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Imagine that you cannot bend over, cannot put away the dishes, and cannot pick things up off the floor as the ground spins out when you do. Imagine turning over in bed, turning your head quickly, and the room spins. Imagine riding an escalator or a moving walkway and looking at the patterns and the room starts spinning, bright striped patterns, carpet patterns, certain mosaics appear to move and disorient you, movement in your peripheral vision makes you turn your head and the room starts spinning, you cannot look up as that provokes spinning. You hear sharp noises, low bass riffs and sounds and music that no one else hears. You feel pressure in your ears like when you are on an airplane that is lifting off or landing, but you cannot crack your jaw to eliminate it.
If you can imagine this, that is what my everyday life is like. Now, imagine that you feel like you are on a row boat on rough seas and think of how you would feel if this was on dry land and you simply just stood up; this is a positional vertigo attack. Now, remember when you were a child and you used to spin around until you got dizzy and fell over. Imagine that this happens when you are literally just standing up and then suddenly the world starts rotating and you are standing still, that is rotational vertigo attack. Add to these vestibular problems, tinnitus and aural fullness, a progressive degeneration in your hearing and you can begin to understand what I live with since I developed Ménière's disease.
Many people suffer from one or more of these symptoms. I am hoping that people will use this diary as an opportunity to discuss their vertigo, tinnitus, and hearing loss. These conditions are so isolating and irritating; maybe sharing can help us all! So, I’ll begin with a discussion of the disease and then talk about my story. Grateful thanks to Allie123, my husband, Elaine and Fiona who read this diary and gave excellent advice and support.
The three main symptoms of the disease which you need to have to be diagnosed are:
Vertigo attacks: these take different forms, including drop vertigo, rotational vertigo (spinning), positional vertigo (like you are on a boat on rough seas)
hearing loss: It begins with the loss of low tones, in the middle stages, the hearing loss progresses to a general decrease, but especially of high and low tones, by the final stage, hearing is unaidable. The link has pictures of the type of hearing loss associated with the disease (http://www.dizziness-and-balance.com...)
tinnitus: loosely, hearing sounds internally that do not exist externally (http://en.wikipedia.org/...)
There is an additional 4th symptom from which many people that have Ménière's suffer:
aural fullness: literally increased pressure in the ear; similar to what people feel when a plane takes-off or lands or at heights,
What causes the illness? Essentially, the cause is unknown and research is continuing. It may be that different things cause the disease in different people:
According to the National Institute on Deafness and Other Communication Disorders (http://www.nidcd.nih.gov/...) and the Ménière's society (http://www.menieres.org.uk/...):
Many factors are probably involved in the development of the disease. The relationships between these factors and the progression of the disease remain unclear. The factors that may be involved are:
• Increased pressure of the fluid in the endolymphatic sac in the inner ear.
• A familial predisposition to develop the disease.
• Allergic factors damaging the inner ear.
• Some specific viral infections.
• Vascular factors. There is an association between migraine and Ménière's disease.
• Metabolic disturbances involving the balance of sodium (Na+) and potassium (K+) in the fluid of the inner ear.
• Unknown factors.
Some stats for lovers of stats: In the UK, according to the Ménière's Society (http://www.menieres.org.uk/...), the disease "mainly affects white people. Its incidence is between 1 per 2000 and 1 per 20,000 of the population. It affects both sexes equally. It can occur at all ages, and most frequently starts between ages of 20 and 50 years. About 7-10 % have a family history of the disease. Initially the disease usually affects one ear, but 15% of people have both ears affected at the start of symptoms. As the disease progresses, up to 50% will develop the disease in both ears." Here is a link which discusses different studies from different countries and the epidemiology of the disease: http://www.dizziness-and-balance.com...
Treatments: initially they will try elimination of medications that affect ear pressure, blood pressure, or those that are ototoxic and diet changes to see if this helps (cut salt, avoid caffeine, and avoid alcohol); the next stage is administering medications. In the US and UK, medications differ and either try to deal with the nausea caused by vertigo or the vertigo itself. The most common treatment in the UK, betahistine, is considered controversial in the US. (http://www.dizziness-and-balance.com...) The next stage of treatment is surgical intervention (injection of an ototoxic antibiotic, gentamicin, or steroids), If the less invasive treatments are unsuccessful and vertigo continues, there are radical solutions such as Labyrinthectomy (removal of the inner ear sense organ) can effectively control vertigo and Vestibular neurectomy, (selectively severing a nerve from the affected inner ear organ) (for medical professionals: http://www.entuk.org/...)
Even if you have some or all of these symptoms, you may not have the condition. Essentially, this is a condition that is diagnosed after all other possible explanations are eliminated; it is a negative diagnosis. In fact, while I have all 4 symptoms, I still remain undiagnosed as the problems emerged at different points of time and the doctors have not formally diagnosed me. The disease and symptoms manifest themselves differently between victims: different people have different triggers; different reactions to the same stimuli; there are different intensities of symptoms; different durations of symptoms: and different responses to treatments. That means that you can suffer from these symptoms for years without a proper diagnosis with help limited to medications that only deal with the some of the symptoms.
The condition is debilitating, causing progressive hearing loss and destruction of the vestibular system; it can affect one ear or both. There is no cure: treatment can only hope to alleviate the symptoms until the inevitable complete hearing loss in the affected ear and cessation of vertigo attacks when the vestibular mechanism is destroyed. You may still suffer from balance problems after the disease has run its course.
My story:
I think that it started about 5 years ago when I woke up, tried to get out of bed and the room spun out for a few minutes. I say "I think" as I have had some symptoms of my condition like tinnitus since I was a child (in fact, I thought everyone heard noises and sounds that weren’t there and was surprised when the doctor asked about them, they have been "normal" for me as long as I can remember) and my hearing loss had started to be significant about 8 years ago and I was already wearing an hearing aid in my left ear. Little did I know that that small spin of vertigo was merely the beginning of my journey into Ménière's disease (or syndrome). Actually, the term journey is ironic as this condition has limited my ability to travel, drive, go to crowded areas, deal with loud noises, see in the dark, present papers and go to academic conferences, go to political activities such as teach-ins or demonstrations and simply go about what was previously my normal life.
In the space of 6 months, that small spin getting out of bed progressed into what is known as drop vertigo (aka otolithic crisis of Tumarkin, http://www.dizziness-and-balance.com...) where literally I was standing one minute and the ground spiralled out underneath me with no warning; it was as though I was standing in the middle of a spiral and the world was revolving around me ...it felt like my eyes were spiralling (I kept on thinking of the X-man comic where one of their enemies was called vertigo and her eyes spiralled when she used her powers); these attacks lasted for at least 4 hours where I was unable to get off the floor and I could not get my legs to be stable to hold me. The floor was the safest place as it did not move and I spent those hours trying not to move as it set off the spinning again (the first time it happened, my 3 cats stayed there poking me and crying, the little one kept on hitting me on the head to see if I responded, I guess the moans confirmed that I was ok to them). My husband felt helpless; there was nothing he could do.
When having an attack, I asked for a blanket, small pillow, bag to be sick in, and water in a bottle that I could suck on rather than have it pour out as my hands were shaking and I was too unstable to lift my head. Once the immediate vertigo attack stopped, it was followed by constant tinnitus and a feeling like someone stuck a wad of cotton in my ear (aka aural fullness) that lasted for the next few hours if I was lucky (usually it lasted for the next few days). It was simply terrifying.
I became afraid to leave my house, as I was afraid that I would have an attack in public, wouldn’t be able to get up and be trapped on the sidewalk, what if it was in the street and I couldn’t get up, people would think I was drunk. I cut down on seeing friends as I didn’t want them to have an attack when I was with them. I stopped going to demonstrations, listening to music, going out for dinner or for a drink. The only times I wasn’t worried about this was soon after an attack as they were coming only every few months. Plans in advance became a very bad idea as I never knew when an attack would come. The only person whom I let see me have an attack was my husband; he understood what was going on. It was during this period that I started blogging on the dkos to make up for the lack of political activity in the real world and to re-connect with people.
I went to my GP after the initial small spin getting out of bed and he told me to get up slowly. After the first drop vertigo attack, I went back to the GP, got a different doctor, and she acted as though I was hysterical and exaggerating the situation. I admit to the hysteria, when the attack was occurring I felt completely helpless and was scared, so that probably came out in my description (who wouldn’t be a bit anxious in a situation like this?). I offered to have my husband write a note confirming the attack, symptoms, intensity and length and she told me not to worry about it.
Drop vertigo attack number 2 came and I saw the initial doctor whom this time asked if I had tinnitus and hearing loss. When I confirmed that I always have had tinnitus and that I had been given an hearing aid 3 years before, he gave me 5mg of prochlorpromazine (thorazine) for the nausea caused by the vertigo and referred me to the ENT, saying that I may have Ménière's disease.
At the ENT, they tested my hearing and decided that I now needed 2 hearing aids, gave me allergy tests (told me to avoid gardens and make my cats sleep in another room, I said I did the former, but wrt the latter said "forget it!"), and ordered an MRI (to check for a brain tumour). At the next visit, after now having had 4 drop vertigo attacks, the doctor tossed me around backwards to see if it created an attack {this is to see if you have benign paroxysmal positional vertigo (BPPV), which unfortunately I didn’t have as that is easily treatable http://en.wikipedia.org/...}, gave me betahistine, told me not to drink anything with caffeine, reduce alcohol consumption, reduce salt intake, do not eat anything that may cause a migraine (they had started working in tandem, if I got a migraine, I would have a vertigo attack and vice versa, but my migraines are not food related with the exception of MSG and giving up chocolate and cheese as suggested was just too depressing) and told me to come back after 6 months.
The hearing aids were becoming problematic; when I removed them, the pressure in my ear increased and caused attacks. Moreover, my hearing was continuing to deteriorate. Needless to say, at this point, I was upset: I felt helpless, I was afraid to drive, afraid to leave my house; my life was literally spinning out of control. I put on a brave face, but my (old enemy) depression was returning. At the next appointment, I asked the doctor to tell my GP to issue betahistine and he did and told me to come back again in 6 months. The betahistine didn’t stop the attacks, but they seemed to be a bit less intense and gave me a bit of warning before an attack hit.
I started developing coping skills: spot for an object, step into position, then bend over while keeping my head straight, reading to try and focus my eyes to force them to stop spinning, step back and look at thing from an angle instead of looking up. I had started Pilates to initially help with a bad back and found it helped me with my balance; this helped to cope with the attacks and to deal with loss of balance.
Then, I screwed up; appointments were 6 months apart, I got confused. I missed the next ENT appointment as I got the day wrong. I called, apologised and begged, all to no avail and was discharged back to the care of my GP, none of whom are ENT specialists. I was on my own, but ...
At the first visit to the ENT, I found a leaflet for the Ménière's Society (http://www.menieres.org.uk/...). I went home, read up on the disease/syndrome, realised that I had all symptoms, so I joined the group. I figured that I had nothing to lose, even if I did not have the disease, at least there would be information to help me cope with the vertigo, tinnitus, aural fullness and hearing loss. Membership turned out to be a godsend; it included important information about the disease, an excellent magazine called "Spin" discussing latest research, treatments and offering stories from other sufferers.
Most importantly, there was a membership list of people that are available for support. It was from that initial phone call to someone on the list (Elaine) that I found out there was a support group of wonderful people (Elaine, Millie, Fiona and Diane) that met nearby. It was an immense relief to sit in a room with people who wouldn’t freak out or look at me weirdly if I had an attack. We talked about coping skills, treatments, doctors, discuss our fears, and simply talked about everyday life. There was even a support group for loved ones, partners and spouses to help our primary caretakers cope with the illness now affecting their loved ones; this is a rough disease for loved ones to cope with, sufferers become depressed, anxious, afraid to leave their homes; loved ones lives (like the sufferers) are turned upside down and there is nothing you can really do to change the situation. You go from partners to caretakers, it is extremely difficult and many relationships don’t survive.
After 8 drop vertigo attacks in total, my symptoms changed a year and a half ago. I entered the intermediate stages of the disease (for a comparison of stages see here: http://www.menieres.org.uk/...). It was a massive relief in some ways and gave me part of my life back. I no longer simply drop to the floor for no reason ... that’s big! I can hold onto the walls and walk when I have an attack, it just feels as though I am on a boat in rough seas (happily, I have good sea-legs :)). I also get warning: I get tinnitus and/or aural fullness prior to an attack. This means that I can stay in on a bad day, but can function almost normally on a good day.
One small drawback, while the drop vertigo attacks occurred every few months, this new version of vertigo attacks comes more often. In fact, they started coming every 3 weeks, then every two weeks, once a week and now more than once a week. However, they are far less intense (yeah!) and I can function when I have them; I can sit there and laugh with my husband, I can talk, I can read, I can even eat! I am beginning to treat the illness as part of life rather than an end to my life. The other drawback is that every time I have an attack, my hearing gets worse and it is cumulative. I no longer wear my hearing aids as they are digital and I would need to constantly go to the audiologist to have them recalibrated.
I am thinking of learning how to lip-read ... the one course I checked in my neighbourhood was really expensive (£550), so I am looking for other courses. I did have to give up Italian lessons as it is really hard to use amateur lip-reading as a backup when it is in another language that you are still learning and it is hard to participate when you cannot hear and your hearing aids are not set correctly. I’ve had to give up Pilates as the attacks are more frequent and some of the movements exacerbate the problem; I am hoping that I will be able to resume it once the condition stabilises a bit.
When the attacks changed, I went back to the GP and asked them to once again refer me to the ENT as I needed a specialist. The new ENT was excellent, he once again checked the hearing (which has deteriorated badly), scheduled another MRI and scheduled a VNG caloric test (http://www.stopdizziness.com/..., http://www.stopdizziness.com/...). The latter is a test where they check eye movements vertically and horizontally following a light or object, they also run hot and cold water in your ears which on a normal person would induce an attack. My left ear drum didn’t respond to a pressure pulse, while I felt the right ear drum respond and heard a noise. I had no response to the water spray on the left ear and minimal on my right ear. I am also unable to move my eyes side-to-side without moving my head.
The examiner told me that the MRI was essential, that there was no way that I had BPPV, and that it was either a brain tumour, a strange combination of Labrynthitis (http://en.wikipedia.org/...) and nerve damage in my ear causing the hearing loss, but it was probably Ménières disease. This was the first time someone had explained everything to me, he made sure that I could see when he was speaking, explained the purpose of the test, what normal results would look like and then told me what was potentially happening with me. Upon seeing the results of the test and a normal MRI, the ENT sent me to the Dizziness Clinic (DC); when he told me there was no problem with the MRI, I burst into tears, which the doctor and I both ignored while he explained to me what the DC could do for me.
The doctor at the DC suggested several intermediate treatments, both of which involve the insertion of a grommet in the ear to relieve pressure (Endolymphatic sac surgery) and then either injecting gentamicin or steroids into the ear to relieve the pressure and hence vertigo. The steroid injections are experimental; they do not destroy the hearing mechanism that is a risk with gentamicin. They may even recover a bit of my hearing loss. I have nothing to lose; I accepted gratefully and the surgery is set for mid-October, 5 years, and here I am finally ...
Essentially, the change in situation meant that I had two choices: I could either lock myself in the house or I could try and live with the condition. The latter meant that people will see me have an attack (my in-laws and two close friends have seen an attack), it means that I go out, try to minimise things that set off the problem, and try and enjoy what I can, when I can. Making plans is still difficult, as on a bad day I stay home, but I decided to try and live with what I have and not led it rule my life so completely.
I’ve adapted to living with the condition. I started going to demonstrations and teach-ins again; I decided to risk it after the attack on the Gaza flotilla. It was hard, I needed to take my pills in the middle of the demo, but I did it. I worry about flying as that sets off the problem for me, but came to realise that I will lose my hearing anyhow, so I will see family and friends. I am still waiting to get on a long-distance flight, but I will do so ... I just need extra days to rest and recover from an attack.
My 50th birthday was in June and I decided to celebrate, even if they had to carry me into the damn party! I organised a birthday party, ordered food and cake and invited my friends (from academia, politics, Ménière's support group, really friends old and new). We also went on a trip to Cornwall as part of the celebration with my two closest British friends; we went there because we could drive and I had never been and wanted to see it for ages. It is an incredibly beautiful place, we had a wonderful time; I had one vertigo attack (but it didn’t ruin my holiday). These things seem minor, but it was a major accomplishment. I began to reclaim my life!
Am hearing Gloria Gaynor ... :) ... wait a minute ... :)