KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
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 (think nails on chalkboards for those of you that remember 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 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 still and then suddenly the world starts rotating and you are standing still, that is 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. 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! It worked the last time, so I am hoping that it will help all of us again. So, 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, 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.
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 (?), 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/...), 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 has 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 first series of 3 injections in my left ear.
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/...)
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 only recently diagnosed with the condition following the second stage of treatment for the disease (which I shall discuss below).
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.
II. My Story:
For those that have not read the first part of my story (http://www.dailykos.com/...), I’ll do a quick summary and then fill people in on what has been happening since I last wrote here.
My story started about 5½ years ago, although it feels much longer. I have to be honest I find it difficult to remember how long it has been as managing this disease has become the centre of my life.
It all started with my turning over in bed resulting in a small rotational spin (it didn’t seem small then, but it is amazing how what you think is major is actually a rather small event) and rapidly progressed to drop vertigo attacks (aka otolithic crisis of Tumarkin, http://www.dizziness-and-balance.com/...), not all people that have the disease wind up with these, I guess I am special. :( Since there was absolutely no warning of these attacks, I became afraid to leave my house for fear of having one of these attacks in public, stopped seeing my friends (again, this had happened earlier when I had a bad depressive crisis and had only begun to start seeing people again) and it became very difficult to make plans as I had no idea if I would have an attack.
Following the 8 drop vertigo attacks, the disease shifted course into the intermediate phase and instead of having attacks with no warning, I started to get some warning signals (aural fullness and severe tinnitus). This may sound minimal for others, but for me, this was a godsend, I could start making plans again, and stay in the house on a bad day. However, there was a massive increase in the number of attacks and each attack meant a bit more of my hearing in my left ear being lost. Also, the recovery period takes me at least one day until I am back to normal (within context) functioning.
An additional problem arose, my migraines [which up until now had only (HAH!) consisted of the headache now came equipped with wonderful aural hallucinations (sparkles, blocks of colour which I call my Mondrian migraines)] decided to join forces with my Ménière's; this meant that a migraine would also give me a vertigo attack and often vice versa (this is called vestibular migraine (http://en.wikipedia.org/...) and, of course, affects women far more than men at a ratio of 5:1) ... lovely …
So, after a while without any medical support (see earlier diary for my screw-up and the problems with medical support), I finally got to see an ENT. He ordered the tests that I should have had 3 years previously, another MRI (to make sure it was not a brain tumour and 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 person that conducted this test ruled out the possibility of BPPV (http://en.wikipedia.org/...) which had been ruled out earlier, but hey, better double testing than none at all at this point and actually sat down and explained to me what Ménière's disease actually was and what it implied for the rest of my life. He also raised the very distinct probability that the disease would go bilateral and my right ear would be affected as well.
I was then sent back to the dizziness clinic who finally diagnosed me as having Ménière's disease (took them long enough). The specialist gave me the opportunity to undergo a surgery to try and reduce the number of vertigo attacks; in other words, he 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. Having nothing to lose; I accepted the steroids injections gratefully and the first surgery was done in mid-October.
The Surgery:
It consisted of the insertion of the grommet (ow, ow, ow!!!) and the injection of 3 courses of steroids into my inner ear through the grommet (of course, the last one occurred on my uncle’s 90 birthday which meant that I wouldn’t be able to go to his party, but more about that later). I also found out from the surgeons that I could have physiotherapy to help me cope with the loss of my equilibrium (hurrah!!) ... this was something that the ENT sort of forgot to mention ...
Thankfully my in-laws came in to help following the first injection as I was completely discombobulated and unable to stand, bend over, sit up or down, lie down and get up without assistance. I admit it, I am a wretched patient, I hate being dependent on others for assistance, thankfully my in-laws are both doctors and have dealt with neurotic people (heck, my MiL is a psychiatrist so she was able to cope with my intense need for independence even though I could not stand up). Happily she is a great cook; they are lovely people and got me through that first week as my husband had to work.
The injections didn’t hurt much (the grommet insertion was very painful and I swear I could feel steam coming out of my ear for days), but the dang things completely destroyed my equilibrium … I keep on thinking whether this is cosmic retribution that a person who is a trained economist gets a disease which leads to something that sounds like an economic crisis: “General Disequilibrium.” Why this happens to me an alternative, non-evil economist rather than someone else?! I have no idea … I am blessed …
They said that the effects of the injections in terms of the elimination of the vertigo attacks would last anywhere from 6 months to a year, mine didn’t make it 3½ months. During those 3½ months, I needed to relearn how to re-balance myself. I actually looked like a toddler learning how to stand for the first time (in fact, I would say that the toddler certainly had better balance than I did and they look a hell of a lot cuter than me). It made it easier that I was not having vertigo attacks at this time; I keep on thinking of this whole thing as a vestibular re-boot. Essentially, my peripheral vision is shot, I also cannot look straight ahead into the distance (I look at the floor a lot) and if I turn my head quickly, I get dizzy … which means anything going past me on my sides makes me dizzy; my night vision sucks big time. I needed to hold onto my husband’s arm when I went out (which made me dependent upon him when I left the house and which the poor man suffered intensely for ... see the wretched patient that hates dependency above).
Return to the ENT:
In December (one month after the last injection), I went back to the Dizziness Clinic where I met with my committee of health care specialists: the ENT, the physiotherapist, the technician that administered the VGN caloric test and my health care advocate (a lovely man who unfortunately talks very quietly and whom I cannot hear at all). To determine if Physiotherapy could help, they had me stand on a blue cushion which I promptly fell off of (they decided that I could benefit from physiotherapy). The ENT told me that that since I had Ménière's in my left ear (the technician interjected that we shouldn’t rule out both ears as the test indicated that there is already a problem in the right ear and he was dismissed by the ENT), that they were referring me to physiotherapy, that I shouldn’t drive until my equilibrium is restored (duh, does this guy think I am going to endanger anyone …what kind of person does he think I am?), that I should stop wearing the hearing aids as my hearing is too far gone on my left ear and that they may induce problems with pressure changes. He also suggested that I stop taking betahistine as it clearly is not working (yeah, right, with my luck it is the only thing that is keeping me from rolling like a spinning top on the floor ... nope haven't stopped using it). He then tells me that since the injections worked (they were doing so at the time) they could give me another round of them in 1 year’s time. This time, he does not mention the cochlear implant to restore my hearing … I am left wondering if this is a sign of things to come or has he perhaps forgotten that he offered it?! (I was too upset to ask at the time). He ends the appointment with the extremely irritating comment that "I shouldn’t get depressed and that once the disease burns itself out, I will have a “normal” life and that I should keep my spirits up!"
The nerve!! I told him, “too late, I am already depressed” and then asked if he could refer me to a therapist to help? No, you have to get assistance yourself, perhaps a support group, contact the Ménière's society (I have been a member since the 2nd drop vertigo attack, thank you very much! After this visit, I joined Ménière'sUK on facebook; they are a wonderful group of people, a veritable Kosability for Ménière's sufferers) and then dismissed me for another 6 months. I interjected asking if I could have someone to contact if the attacks started again or the disease went bilateral. He told me to contact the physiotherapist and she would relay the information back to him … wonderful …
You know, I do understand that since this disease is not fatal, it is an exotic for which there is no cure, I know that I need to learn to live with the illness, that there are better illnesses to spend money on, blah, blah blah; but do you think that perhaps they can provide these doctors with sensitivity training? Would it kill them to treat people with some respect and dignity?! Yes, I am pissed off and I am bitter …
Physiotherapy:
So, I go to physiotherapy (PT) which since I cannot drive and cannot walk well (I am weaving around like a drunk on a bottle of scotch), I take a cab and plan to take a cab home. Buses move too much for me to use them safely and since I do not look disabled, people will not give up their seat to me, I look like a drunk (this is rather embarrassing as I cannot drink anymore as alcohol does adversely affect this disease). The PTist is a lovely woman; she makes me walk around and administers some basic tests to see what is going on with my lack of peripheral vision. She gives me a series of exercises to try and get my peripheral vision and head movements linked up again. Most importantly, she decides (bless her) that what I need is a cane to help me give me back my independence. My cane (whom I have named Agnes) is a wonderful durable lady cut out of wood (you can see the branches that were cut off of her). I have been learning how to use her (they only gave me a 15 minute test drive).
I have found out several things in learning how to work together with Agnes (you are listening to a woman that simply can not use crutches, they gave me a pair after knee surgery and I literally fell over them which did not help my knee recover at all):
1) I cannot carry an umbrella and use a cane at the same time. Perhaps other people can, but I seem to be lacking that specific level of gross motor coordination; it is similar to my problem of walking and chewing gum at the same time;
2) I cannot carry two heavy bags full of groceries and walk with said cane, the groceries knock the cane out from underneath me and then we all fall down (this does not help people’s perception of me as a drunk, although if they love slapstick, I am a treat);
3) When you have a cane people recognise you as disabled, they actually stand up and give me their seats on buses, the tube and railways, they try and help me carry my groceries, they no longer look at me like I am drunk (unless I am carrying two heavy bags of groceries and then they must think I am a drunk disabled person, see above);
I hope that you noticed that I can now take buses and the tube again thanks to Agnes. People give me their seats and I now have some level of independence. In fact, I took Agnes to her first demonstration which was the anti-cuts demo in March (http://www.dailykos.com/...). I have something of my life back again thanks to Agnes (bless her).
In the meantime, I made plans to visit my uncle whom my cousins tell me is not doing well and I should come to visit before it is too late (for information on that trip, see, if you need a laugh, http://www.dailykos.com/...). I am to see the PTist once a month and to practice with Agnes and do the exercises. On my second visit, the PTist tells me that I have a bad attitude (this has coincided with my first attack since the steroid treatments, which I was, at the time, vaguely hoping was due to a migraine and not the resurgence of the disease) and that I need psychotherapy (I agree, but why will they not refer me to a psychotherapist?!).
On my 3rd visit (after my 4th vertigo attack, none of which are vestibular migraines, the second is a straight rotational attack which shifted to positional and the 3rd and 4th are due to the flight to the US and returning), she tells me that it is impossible that my rotational vertigo lasts more than 10 minutes (please look at the 4 hour ones up above). She then gives me a new exercise for BPPV patients (which I do not have; which she would know if she reviewed my medical files which she has and which she carries around when she sees me, not that she appears to have read them) that consists of my rolling around on my bed sitting up on one side, rolling over, and sitting up on the other. All this will do is give me a vertigo attack, I have not done these exercises; they will only make the situation worse.
So, where are we? Ah yes, my vertigo attacks have returned … I got 3½ months of relief. I also started getting severe tinnitus in my right ear and now aural fullness … I am a bit more than stressed that the disease is becoming bilateral. After 8 months of feeling like I am in a never-ending fog, I have started drinking coffee and tea again (yes, the elixir of the gods) and this has not caused an attack. I see the PTist at the end of May-early June and then see the ENT again in July. I am praying for deafness in my left ear in the hopes that it will end this disease … I can live with the disequilibrium thanks to Agnes (heaven help them if they try and take her away from me!). And there is some good news, Agnes and I went on our second demonstration together, a "Save the NHS" yesterday ... I am certain that she enjoyed the walk as much as I did.