Hearing loss research and topics

July 29, 2020

The side effect situation – isolation and monotony

Have you ever felt the need to open the pamphlet of your medication because you were experiencing something weird and wanted to see if it was one of the side effects? Usually, within two minutes you can convince yourself that you are dying. The same happens if you Google symptoms. Well, to me anyway. These last few weeks I have been on a bit of an emotional tumble and found myself, more than once, confused and disoriented. This lead to anxiety which led to a few days of being very down.

Today I, however, decided that I am allowing this no more! When looking at the symptoms of a vestibular disorder the following are listed on vestibular.org:

Vertigo and dizziness
Imbalance and spatial disorientation
Vision disturbance
Hearing changes
Cognitive and/or psychological changes

I certainly tick all the boxes. The last few days I have however especially had difficulty concentrating and just getting myself to focus.

This post is, therefore, the first effort in getting things back on track. My own way of being assertive. And also a way to admit that my side effects are also due to the situation of isolation and monotony.

All of the above symptoms are also exaggerated when one’s immune system is a little compromised and when one is tired. This time of isolation has pushed me into exhaustion. We have missed our annual mid-year break because we cannot go anywhere and both the engineer and I are working weird hours because the work is now at home and we cannot quite stop. I have also realised that the days are all the same. There is nothing to look forward to. I also believe that this realm of uncertainty is also taking its toll. Even if we were to know that there will be four more months of this… at least we could be excited about what happens after that. I am trapped in uncertainty.

It took me almost 40 years to learn that if you decide to do something and something goes wrong, that is not a reason to can the whole project. Our lives are probably made up of all the little bits of imperfection that we had to shape into something else. I, therefore, ascribe the above list of symptoms as physical symptoms exaggerated by a bit of an emotional tumble.

So today I am picking myself up and dusting my knees off. I am admitting that I have more than just stumbled but have actually fallen and am grateful that I can at least continue on the path. I paged through my notes and started looking for specific things on the better days… things that were within my power to pull myself back towards myself. These include:

Dinner planning: I have written a little about the family dinners during lockdown and have a scheduled post on the menu coming soon. We are currently on day 125 and we have had 114 unique meals (the missing days were mostly filled with leftovers). It is a simple thing to have something to look forward to.

Exercise: The engineer and I got into a very nice running schedule, which I believe is one of the plusses of lockdown. With both of us working from home we can easily fit this onto our day. On the non-running days, I try to do something else, like pilates (through Fitnessblender.com) or dancing. This has however been neglected and I realise that this is one of those things that I should just do. So on a random Wednesday, I am scheduling some exercise time for the coming week.

Socialise: Not being able to have friends and family over has been very difficult for me. I am a social animal and I miss these events that we took for granted not so long ago. Luckily in today’s day and age, there are a lot of ways to interact.

Doing something creative: One of my very close friends started a Whatsapp group at the beginning of 2018. She invited all her friends that had some creative inclinations to post on there whenever they have finished a project. This group has grown and evolved and I have been inspired by so many beautiful things and so many beautiful people. On any given Saturday you would for example see the birthday cake that someone baked for their five-year-old and also follow a conversation on the best way to get craft glue out of a carpet. Late afternoon someone may post a recipe for a cocktail and another would brag about their colouring efforts. This group is full of love and encouragement and ideas and it has taught me how important it is to do something that is not “work”. Something that pushes the boundaries of the imagination a little.

Physiotherapy: What can I say? The exercises… do them!

Read: I have to admit that in the last few weeks I have been escaping from my days by going to sleep early and not reading. And as I type this I realise that it is time for a new book.

In short… find something in the day to look forward to… even if you feel a little trapped. That way there is some movement forward… even if you feel like you are standing still. I apologise if I am repeating myself… take this as confirmation that it worked the first time too.

June 23, 2020

Recovering the satellites

The mood is currently low and slow and I am somewhat annoyed by a satellite like spinning behind my left eyebrow. I am off balance. Physically and mentally. My lists have become too long and my sleep interrupted.

When I dreamed up this conversation and the various topics, the seed was my vestibular rehabilitation therapy (VRT). Up to now, I have chatted about various emotional things but today I intend to get a little academic. Predominantly because the last few weeks have plummeted me into unhealthy old habits and I realised that my lousy mood is being fueled by some old acquaintances, that needed to be put in place. A vague spinning somewhere just out of sight and a sensation that my bed has been washed out to sea. So I dug out the worksheets and started my rehab from scratch.

So some context to my situation currently: South Africa is still in a lockdown situation where we are not allowed to socialise, go to church, go to restaurants and our schools are still closed. We cannot see our families. I cannot go to my dance classes. I am therefore still a full-time boss, full-time employee and full-time mother to the three-year-old Lilliputians. I am tired and somewhat sad and feeling guilty about everything… that I am not spending enough time with the Lilliputians when I am working, that I am not working enough when I am spending time with them, that the housework is not perfect, that the Engineer never gets to see me with makeup anymore… I am sure you can see how this can spiral!

What I can however do now that we could not do at the beginning of lockdown is run… which we do and which I am grateful for.

Bluebottle, the hearing aid, had its one year birthday in May and had to go for his annual service. The first interesting thing that the audiologist noted was that my reaction time in the hearing test was overall, a bit delayed. When compared to the graph from 2019 it was lower and slower throughout. And thus my audiologist visit turned into a bit of a therapy session as well when she pointed out, immediately, that I must be tired.

This low mood was then pulled into the depths of misery when a cold front hit and took the sunshine from our otherwise mild winter. It was cold, I was cold and the Liliiputians could not play outside. They are not made to stay indoors. That Saturday morning found me not wanting to get out of bed because I could not stand upright and I realised that something was off balance… literally – me.

The problem was first picked up by my director who is also a medical doctor and noticed that my one eye was a little slow. He did what doctors do (even though not usually in a staff meeting) and started asking all the questions. My symptoms were:

I am not going to drag you through the whole process but what I can tell you is that I felt like I was back in school and could not do the most basic of things… follow something with my eyes and I have to admit that that realization was the hardest part of all. The rehab took me through a 3-month process with daily exercises that I had to do with a stopwatch and a few sticky notes. Stupid little eye and head movements that were, initially, impossible. After feeling like a complete idiot the first two sessions I at least started to laugh at myself which was half the battle won.

That was now a year ago. A year that brought more work and home responsibility, more pressure and a lot more stress. This pandemic also brought uncertainty and interfered with my bulleted, tracked, planned out routine. All these factors plummeted me back into my original symtoms and I realised that it was time to reset a few things. Starting with the stopwatch and the sticky notes. Today is day 7. It gets worse before it gets better. Or… I hope that is what is going on anyway because the alternative is that it is just getting worse. The mood is thus low and slow and I am somewhat annoyed by a satellite like spinning behind my left eyebrow.

April 28, 2020

Hearing loss and anxiety

I have always been an anxious type. Although I do not believe in star signs, this does correlate with me being a Gemini. When the Lilliputians were born, this anxiety manifested into full-blown postnatal depression, which is something that I am planning to discuss at a later stage. This post, however, is about the link between my hearing loss and the anxiety it caused and still causes. It also suggests a few things which help me cope with anxiety. Please note that this post is not based on researched medical scientific facts, but instead on my personal experience. I am planning to do some research on it, and will also post those findings when they are available.

My hearing loss was caused by a virus (varicella-zoster) that caused nerve damage. The virus, however, is one of those fun ones that hang around in your system for a long time and re-emerges when you are stressed or your immune system is having a tough time… or in most cases both. I therefore had shingles more than once and in each case, it caused a little more damage. Together with this damage came vestibular issues, which, like the hearing loss, were only identified later, simply because it was not something that we were looking for at the time. Bigger fish to fry, so to speak.

The saying goes, that hindsight is always twenty-twenty, and that is also true in my case. It is now easy for me to explain that that whole feeling of being out of control and never catching up was because everything was not working as it should. It was because some senses were compensating for others to make me do simple every day things like walk upright, and it was, of course, because I could not hear.

It is however much more difficult to address anxiety when you cannot pinpoint the cause. And that in itself causes anxiety. What a tangled web we weave!

The following, in no particular order of importance, were things that have helped me deal with my anxiety, and most of these will be discussed in separate posts.

Give it a name

I had to identify that what I was feeling was something that I needed to address.

Calling in the professionals

In my case the professionals were numerous and I am grateful for all of them:

Medical specialists and a fantastic ENT
A physiotherapist
A audiologist
Psychologist and a
Psychiatrist

What feeds your soul?

A big element that I have unfortunately only come to define in my 30s, was to figure out who I am and what I truly enjoy, what gets me excited and what sparks my interests. It was important to make a list (which is also one of the items J) of the things that feed my soul. NOT the things that I think are supposed to feed my soul, or the things that I think others would be impressed with, but the actual things. For me, it was also important to realise that as we grow and as we reposition ourselves in our various roles, this list also changes. So this is an adventure and not just map. I think that these various items will also find their way into this blog, so watch this space.

Just as a little side note here, I have realised that it is the things that feed your soul that I will be good at, at the end of the day and not the other way around.

What makes me feel like a grownup?

To manage my anxiety I had to make friends with it, and realise that it is always going to be part of my life. I had to however, make a plan to address it in the everyday things and that includes being a grownup: a mother, a colleague, a wife, a friend, a daughter, a sister, a Christian and a human being able to get out of bed in the morning and be accountable for themselves and their actions. In broad terms what I identified here was structure, and this is also something that I will drag into this conversation from time to time, as I have become a bit of a planner geek.

Mindfulness

I have realised in the last year, that this specific element, is something that so many people neglect, and perhaps now that I type here… it is something that pulls all of the above together. For me, mindfulness indicates a few simple things. A good example is that I should know that if I have too much wine, I am going to not only be hung over but also be disappointed in myself. Another is that I have learnt that I am extremely brave in text and cowardly in actual conversations. I can be blunt and insulting on a text message and say things that I will never ever say in real life.

This chat is a very early post of this blog, and I hope that it would grow from here. I still have a lot to learn about the process and many things that I want to do, but I am just leaving this here, for now.

February 12, 2020

A (somewhat primitive) understanding of tinnitus

When consulting a dictionary, tinnitus is defined as “ringing or buzzing in the ears”. Upon further reading and also personal experience, I can tell you that there is also wooshing and humming. Tinnitus can even seem like a familiar tune or song – this is referred to as a “musical hallucination” – which sounds somewhat blissful.

The most common cause for tinnitus is noise induced hearing loss. My tinnitus was caused by damage due to a virus in my inner ear. This virus caused permanent damage to the sound sensitive cells of the cochlea. It is therefore important to note that tinnitus is not a disease but a symptom.

I was introduced to “tinnitus maskers” when I went for my first hearing test. These are tools that help the brain ignore the specific tinnitus frequency.

The literature also refers to “tinnitus retraining therapy” and this is currently where my reading is focused. Please note that I am by no stretch of the imagination a medical specialist, but it was explained to me as follows: The damage to the cells causes a lack of stimulation within those specific frequencies, because these frequencies are no longer heard. The brain gets irritated and consequently creates those sounds on its own. Again a wonderful mechanism that echoes just how wonderfully the human body was put together!

The solution provided to me for my tinnitus (that is only present in the one ear), was fractal tones, or fractal music. This sounds like music one would hear in a spa… somewhat undefined, totally unfamiliar. Fractal music is generated in such a way that the order of the melody never repeats, there is therefore no pattern and the brain cannot familiarise itself with the sound. It will never be an earworm, and you will never be able to sing along. It is because of this lack of recognition that it works as a masking technique. The brain can later simply move it to the background and even ignore it.

It also has additional properties in that it has a calming effect and aids with concentration and focus.

My hearing aid generates this music. Various programmes named lilac and sea breeze and other such pretentious phrases. I am making an effort to use the music when I struggle to calm my thoughts at night, or when I am concentrating on a project at work and I have experienced some of the positive effects. I am documenting these in my journal and hope to provide a sort of case study after I have used it for a while.