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Imagine that you cannot pick things up off the floor as the ground spins out when you do. Imagine turning over in bed and the room spins and keeps on spinning. Imagine riding an escalator and movement in your peripheral vision makes you turn your head and the world starts spinning, you cannot look up as that provokes spinning. You hear sharp noises (think nails on chalkboards), 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 landing, but you cannot crack your jaw to eliminate it.
Can you imagine, this 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. Remember when you were a child and you used to spin around until you got really dizzy and fell over. Imagine that this happens when you are just standing still and then suddenly the world starts rotating. That is a rotational vertigo attack. The thing is that this can happen when you are simply sitting still in a chair, it doesn’t require that you are standing, moving, changing position … it just happens. 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. These conditions are so isolating and irritating; maybe sharing can help us all! It worked the last time, so I am hoping that it will help all of us again. I’ll begin with a discussion of the disease and then talk about my continuing story with this disease/illness/syndrome/condition (I have never figured out which of these terms actually applies).
The three main symptoms of the disease which you need to have to be diagnosed as having Ménière's disease are:
1) Vertigo attacks: these take different forms, including drop vertigo (literally your balance disappears and you drop to the ground), rotational vertigo (spinning), positional vertigo (like you are on a boat on rough seas)
2) 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/...)
3) 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, to me, it feels like someone stuffed a wad of cotton wool or a sock in my ear. Cracking your jaw does not get rid of it.
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, chocolate, cheese (?), quit smoking 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. (see: http://www.dizziness-and-balance.com/...), while in the US they use Antivert (Generic Name: meclizine). They have recently started introducing Antivert in the UK, but what you may need to know is that this is called Dramamine (yes, that Dramamine used for travel sickness).
The next stage of treatment is surgical intervention which includes the insertion of a grommet in the ear (this is a tube to keep your eardrum open) and involves the injection of an ototoxic antibiotic (called gentamicin) or steroids. This treatment has had some success, but what it does is essentially destroy your balance, which you then need to relearn and the gentamicin can destroy what is left of your hearing. Trying to save what little I had left of my hearing in my left ear, I opted for the steroid injection. This is an experimental procedure and I have completed the series of 3 injections in my left ear. Supposedly it would help for 1 year; alas, it only worked for 3 and ½ months and my equilibrium was catastrophic during that time. Honestly toddlers are more stable than I was …
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: see http://www.entuk.org/...)
Diagnosing the Disease/Syndrome:
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 for years, I was diagnosed with the condition 4 years after it started.
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 (bilateral). 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.
So what’s happening?
For those that have not read the first part of my story (http://www.dailykos.com/...), or the second part (http://www.dailykos.com/...) here are the links. Today I am going to talk about living with an incurable condition that is not fatal but rather simply destroys many of the pleasures in life and makes functioning difficult on a day to day level. I want to talk about how it has affected me emotionally as well as physically.
Several fears have arisen from living with this condition:
I had serious fears of developing agoraphobia, which runs in my family. This arose from my inability to do things due to the attacks. The idea of having an attack in public and how I would get home if I did have an attack grounded me in my house for over 6 months. My fear of agoraphobia made me fight so hard that I forced myself to do as much as I could.
Fears that the disease will become bilateral (go to both ears) have preoccupied me. When I went for the VGN caloric test, the doctor that administered it said that it was highly probable as my reaction to the test on my right ear was not within normal range. For those with Ménière's, when hot and cold water is put in your ears you have no reaction. I had no idea of this when I went for the test; for those without the condition, water in the ear will make you dizzy. I had no reaction on my left ear and limited reaction on my right ear. I have since been waiting for the disease to go bilateral.
When this happens I will have to go through everything that I went through already on my left ear (drop vertigo, vertigo attacks, tinnitus, aural fullness and hearing loss). Even worse, the problems with the other ear are not over. My hearing is minimal at this point in my left ear. I have not had a full vertigo attack (these usually lasted up to 4 hours and were sometimes rotational or positional, sometimes both) since before Christmas, although I have had what I call “minor spins” lasting about an hour that leave me exhausted for the rest of the day and my equilibrium knocked out.
I have gotten used to the spins; I can even eat in the middle of a "minor" spin as long as it is not rotational. I even forced myself to go out to leaflet following one of these; it was to my great relief that the person I was leafleting with had a bad back and we called it an early day; I kept on having small spins whenever I turned around.
The most annoying thing currently is days of constant tinnitus; it is like when you put your ear to a shell full time combined with spikes of high tones that are so loud that I can hear the sound waves coming out of my ear (if I put my hand next to my ear, I can actually feel the sound waves; it is kind of cool, but also really creepy as no one else says they can hear them). It is to say the least rather disconcerting as an understatement.
The disease is going bilateral and I am not a happy cat:
Last week, I was “entertaining” an elderly woman who was staying with us and I had an awful attack of tinnitus in my "good" ear. My worst fears were realised. The threat of total hearing loss is now becoming a reality and there is nothing that I can do about it; another round of years of vertigo beckons and I can do nothing to stop it.
Avoiding stress, which is essential as stress increases the vertigo attacks and also sets off my wretched migraines, just became laughable. I had an appointment with the doctor for general diabetes management that day; my body mass index has gone down (I lost 7 kilos (15lbs) since the last visit), my sugar is under control but not perfect (goodbye treats), my cholesterol is good but not perfect (goodbye the tiny bit of butter that I allowed myself), but my blood pressure (the only problem that I have not inherited from my parents) is 158/75. Since I am at worst normally 130/80, this is not good. I tell the specialist about the right ear and the guest in my house and she says come back in two weeks, let’s not panic about the blood pressure.
Learning acceptance and coping?
I realised that I need to stop grieving and that I would need some help to assist me in getting past this phase towards one of acceptance. Simple pleasures rather than grand designs … heh … why am I thinking of the Marquis de Sade?!
I missed my ENT appointment in January. I have spent a lot of time analysing why I missed an appointment to which I was desperately looking forward. The appointment was 6 months after the last one; there were many things that needed to be discussed with the doctor. Should I consider having another round of steroid injections? What about something else instead as the steroids did not really do much to help the situation as the vertigo attacks came back within 3½ months? When I asked for lip reading classes, they referred me to a place that took two buses to get to the place; perhaps there was another place they could refer me to? I had asked for therapy to help me cope, this was politely ignored or rejected.
So I asked the GP for help and she gave me information about services in the area to help with depression and anxiety. I self-referred to the group running services; they got back immediately (literally the same day). They had two rounds of assessment with me to see where they could help (this took place days after initial contact). They offered cognitive behavioural therapy (CBT); I have already undergone two rounds of CBT. It helps if you are at bathrobe stages of depression, but that is not where I am at (I can get out of bed and get dressed if only to take my meds and so that the postman does not have to see me in the pyjamas). I do not know about other chronic depressives, but I monitor myself a lot. CBT makes me more nervous as I am constantly monitoring myself already. I asked them for talk therapy; they said that they would refer me to a health psychologist.
I was thrilled, unfortunately, I have not heard back from them in 2 weeks; this is a marked difference from earlier enthusiasm and promises of getting me support. But, I am hopeful. I am certain that there are others ahead of me on the list; I am wondering if that since my illness is not fatal it is not seen as serious as other conditions and that my needs are less urgent. That may be true or that may be the depression talking, but I have been trying to get psychological support for years at this point … I understand the notion of triage, but I have been trying to get help for so long … so whether my apologies for them are based on reality or it is depression and my lack of self-worth, I cannot tell the distinguish the two honestly.
The physiotherapist (lovely woman that tells me to keep a stiff upper lip and be positive) gave me a walking stick (aka a cane in the rest of the English speaking world) that I have named Agnes. Agnes has enabled me to have a bit more independence and since I carry her most people will actually offer me their seat on the bus, tube or train which helps significantly as my balance is not particularly good.
Periodically, people will not get up and when I am having a bad day, I will say something. After waiting for one stop on a very bad day, I actually asked a young woman sitting in the seats reserved for the disabled whether she was pregnant or disabled (I could see that she was not of advanced age). When she said no, I asked her to get up and give me the seat. She actually had the nerve to tell me that she didn’t see me. I am a size 12-14 in the US, I was banging the cane in front of her feet and she insisted that she didn’t see me? I am certainly anything but invisible, and yet that seems to be the case! The situation enraged me and reminded me exactly what people with disabilities deal with constantly; just in case I needed a reminder. But, in general, Agnes has helped me by enabling me to participate in things that are important to me. I never realised that I could be grateful to a piece of wood, but bless her, she has helped me.
Part of my response to the austerity measures is honestly extremely personal.
While I know that I must accept my situation and learn to cope with it; I am also fighting for myself and for my brothers and sisters with disabilities that are facing impoverishment. That probably has given me more will and energy to fight against my condition and the limits that it has placed upon me. I am one of those people that respond more strongly to fighting for others, rather than fight for myself. I also strongly believe that people with disabilities deserve more than the crumbs that they are granted in our societies. I am angry that not only do we have to live and struggle daily with our various conditions and ailments but that a government is trying to turn people against us to save a little money. This leads to further alienation from a society that in many ways not only dismissive of our needs, but expects us to be grateful for those crumbs. While many mentally and physically disabled people would really appreciate it if the government actually assisted in making employers more amenable and ensuring access to jobs, it is quite another thing to cut benefits to those that are truly ill and to tell us that we can work when we are not able and where there are no jobs.
I started to do more political activities, the austerity measures being passed in the UK have impacted upon the most defenceless members of society (the poor, the disabled, and children). I can participate in life again and contribute to society. That is something that I have missed doing for a while. Writing is fulfilling especially if it helps get information out. My piece on Bentham and the ideological foundations of the attack on the poor and disabled put me in touch with people from the Black Triangle anti-defamation campaign in defence of disability rights (http://blacktrianglecampaign.org/)which put me over the moon.
The personal is political and vice versa!
But I needed more. I needed to reclaim some parts of my life; I needed to feel as though I am contributing. I forced myself to get more involved, going to meetings, going to demonstrations, and sharing and debating ideas. I let people know about my illness, telling them that there were limits to what I can do given the condition, that I needed breaks during things that take a long time, that some things were simply not possible. I have found that in general people were supportive and happy to have me there. But a frustrating thing is that they forget and they do not understand that this condition is permanent or persistent; I have good days and bad days, but when the condition ends, when it concludes its course, I will be deaf.
Ironically, I was praying for this for a while, but now that the good ear has started having problems I am having second thoughts, I am not ready to be deaf … to never hear my cats purr again, to never hear music, has begun to frighten me … the lack of mention of a cochlear implant at the last meeting with the ENT has accentuated these concerns.
It does not help that the symptoms are generally not obvious; if I am having an attack, I will simply look very drunk (legless is actually a perfect description). I find it frustrating that I need to constantly remind people that I am not in perfect health; I know intellectually that they have other things on their mind, that they have their own lives, that they are also busy and have their own problems. However, knowing something intellectually and accepting it emotionally are different things. It is the latter that I am having trouble doing. In some ways, while trying to channel my anger outwards rather than inwards at myself, I am trying to point my frustration in a direction other than myself. Keeping a sense of humour or keeping my outrage focused does help a bit … but why do I have to be strong or happy? Why do I always have to be the one that looks away from slights and is a good sport? I wonder why those that have already so much on their plates have to sit and smile or be good sports when we are being treated as second-rate, broken or even worse, forgettable?
In perfect contradiction to what I just said, I will end on a positive note with a funny story:
I was leafleting recently in Barking (a working class area in East London; http://en.wikipedia.org/...; Barking and Dagenham were in the news due to the defeat of the British National Party in 2010 http://www.guardian.co.uk/...) trying to build support for an anti-cuts local councillor that had been thrown out of the local Labour party and trying to help to build an anti-cuts group there. They are cutting jobs and services and are planning on closing the local theatre which is the last place where children can go (outside of the local park), they have plays, activities and drama classes for them. I am good at leafleting it is one of my few skills: I engage people, look them in the eye and snap the leaflet at them while quickly explaining what is going on. Perhaps it is because I look pathetic as a friend says; but I prefer to think it is because I smile and engage with people, call them sir or madam. A very religious woman came over right near my spot and started preaching about Jesus and singing religious songs about how Jesus was going to save everyone. I felt like I was in a movie or even a participant (although in a modern version) of E.P. Thompson’s The Making of the English working class (http://en.wikipedia.org/...) where political activism and religious belief were competing to get people’s attention when facing a fight against horrific austerity measures. I started to laugh rather than get upset, it was a surreal feeling. The people that I was trying to leaflet were hell-bent on avoiding the preaching woman and were running away so I started yelling “they are closing the theatre” to try to get people to take the leaflets about the meeting. I turned my deafer ear to the woman, went with the flow and actually found myself having a good time and not only that it worked, people took the leaflets! I haven’t had so much fun in ages … I found myself regretting that my singing voice is only fit for torturing my cats or I would have found an alternative tune to try to counteract her influence; I do a good rendition of Dylan (that will tell you more about my singing voice) but that would have been cruel to people I was trying to get involved in a fight-back effort. So, if you see a woman with a cane in London singing off key in a tenor, lurching around and leafleting, stop and say hello, it is probably me! If not, it will certainly be another person that would be grateful for a positive response …