My crazy first week with a buzzing ear

24 05 2017

man grimacing buzzing ear

A buzzing ear makes a surprise appearance

Looking back on the first week of realizing I had tinnitus almost brings a tear to my eye. Not to sound negative, but those that have or are currently experiencing unexplained buzzing ear sounds will know the frustrations and stupid thoughts that come with tinnitus.

This week I want to bring peace of mind to those who are currently suffering from a buzzing ear or two.

It’s okay to do stupid things when you first realize that tinnitus is something you may need to manage going forward. Speaking with many tinnitus sufferers, we all have the same story – first embarrassment then laughter.

Going through such a journey with tinnitus can be difficult but when you get to a point of not being worried or bothered by whistles or buzzing ear sounds, this brings fulfilment and control back into your life.

So what are some of the crazy things you’ve done in the first week of experiencing tinnitus?

The first week for me was extremely difficult and looking back at why I actually thought this would work makes me laugh.

READ ON

Advertisements




Unlock the facts and myths of tinnitus sounds

10 05 2017

myths tinnitus sounds

The real story around tinnitus sounds

After a long discussion with Alan, a recent tinnitus sufferer, about some of the facts and myths around tinnitus sounds, I was humbled at the fact he praised the information I’ve been sharing on Instagram, I became frustrated when he also told me about some of the information he had been finding online.

This sparked my curiosity and I started reading through some of the content that Alan had been reading over the past number of months.

After spending a significant amount of time jumping from website to website finding myself becoming more and more frustrated, I felt the best way to put my frustrations into action was by putting together this article.

I’m going to explain some of the myths and hard facts around tinnitus sounds that will hopefully encourage you to see tinnitus in a more positive light.

READ MORE





The surprising truth about tinnitus success stories

11 04 2017

tinnitus success stories musician

Searching for tinnitus success stories

Tinnitus and success stories – would you put the two together?

Searching the internet, you will find many articles discussing the issues around tinnitus from minor or daily frustrations to more serious issues such as behaviour disorders like anxiety, depression, or insomnia.

With all this negative information it’s easy to understand why so many people find it difficult to manage if we find ourselves overwhelmed. When we first realise that we may be experiencing tinnitus we often go online to find more information about the condition, unfortunately when we do this we often get freaked out by the horrible stories that can be found online.

If you are someone that hasn’t experienced anxiety, depression, insomnia etc it can be a very difficult topic to start reading about and relating to your own life.

Tinnitus sufferers often say this is one of the worst things they could have done in the early stages of realising they have this condition as it had a negative impact on how they managed tinnitus.





How to sleep with tinnitus sounds

4 04 2017

tinnitus sounds blue

Tinnitus sounds and sleep don’t mix

As a tinnitus sufferer, you may be surprised to hear that many people with this condition actually find sleep as a time of escape, that said unfortunately, there are still many people who find sleeping with tinnitus sounds is very difficult of a night.

Everyone will experience some type of sleeping issue throughout their lifetime and it’s important to understand that there are many reasons why you may be experiencing sleeping issues. The 4 most common reasons why people have sleep issues are;

Insomnia

Causes of insomnia include:

  • Behaviour disorders
  • Prescribed medication
  • Health issues
  • Bad diet

READ MORE

#TinnitusTuesday





Don’t let tinnitus symptoms control your life

28 03 2017

managing tinnitus symptoms

Managing tinnitus spiking

Living with tinnitus for some years I’ve come to realise some days are far better than others, from constant ringing to near silence. Managing tinnitus symptoms can be one of the most difficult things as a tinnitus sufferer.

Just when you think you’re starting to manage tinnitus, you can be hit with a sudden buzz that may last several days.

This is called tinnitus spiking. Often when I speak with sufferers the common theme is that the noise can be dormant some days and high pitched the next.

READ MORE





2 year bilateral cochlear implant review

31 12 2013

So I’ve been bilateral for two years. Two amazing years.

Life has taken over and I’ve been so busy that I haven’t made much time for focused rehabilitation exercises. I asked for my Advanced Bionics processors’ programming to be adjusted to include Clearvoice High with threshold levels reduced to zero, to improve sound in background noise. I asked for T-coil so I can use this with an FM system, the Phonak Roger pen system which I’m really looking forward to using in meetings. The sound field audiometry testing produced threshold responses at 10-20 dBhl, so I have excellent access to the full range of speech frequency sounds at normal conversation levels (and I can hear my neighbours next door cleaning, tidying up, talking, and their TV!). My next review is in 2 years time. I’ve been instructed to replace my T-mics every 3-6 months and the headpiece every year. Below is a comparison of my hearing before I got my cochlear implants (in blue, without hearing aids) and my hearing as it is now, with 2 cochlear implants (in red).

311213

How have my speech perception skills changed over the last 2 years? I was tested with the sequential right-sided implant only, and I was really quite tired on the day so I probably could have done a bit better.

2013 review

  • CUNY lipreading test – 24 sentences of varying length and complexity presented in auditory and visual condition – lipreading with sound
  • BKB sentence test – 32 short sentences of simple syntactic structure presented in auditory alone condition
  • AB word test – 30 single words of one syllable presented in auditory alone condition and scored phonemically

I am continuing to make good progress with the second implant. The BKB sentence score when using both left and right implant is 87%, comparable to one year ago. I am very happy with both implants and prefer to wear them both at the same time. It is lovely though to have an “off” switch and relax at the weekends or after a long day.

I am still using realtime captions in meetings with my little mini iPad – it’s on 4G so I can get captions anywhere I go. I love it. (You can get this remote speech-to-text service from 121 Captions) I have tried some small meetings of up to about 4 people, and can manage without captions, but it is quite tiring – and the speed at which people talk!!!!!! OMGosh!!

My tinnitus is much better than it was before implantation, and it is quite different now. It has changed from musical hallucinations and a never-ending loud barrage of random sounds to a quiet motor hum, which gets louder when I am tired, and even disappears occasionally. With my cochlear implants on, I usually don’t notice the hum. I have purchased a travel sleep sound therapy system and pillow speakers from the British Tinnitus Association. The idea is that rather than putting up with loud tinnitus, I have a short nap with my cochlear implants on, and listen to soothing sounds to reduce the tinnitus. I’ll review this sound system soon. Here’s a useful  visual guide to tinnitus.

1507488_602846159787637_685071519_o

I continue to be amazed by what I can now hear. I can tell when it is raining, when I am sitting at my desk with the window closed. No need to stick my hand out of the window any more. I can hear the photocopier running, two rooms along. I can use the phone, calling automated systems and listening to digital voices, but strangers speak so fast that they need to be asked to slow down. The phone is still a tricky one and a lot depends on my confidence rather than my ability to hear and understand. I can hear my pesky neighbours NO PROBLEM lol. I can hear the wind outside during the recent bad weather spells.  The waves on a beach are so loud, they still shock me. I can hear traffic a few streets away, so sitting in the garden is not as quiet as it would be for a hearing person, as I am so sensitive to sound. I can hear plants growing (just kidding on that one!). I could hear the change in my dog’s breathing when he became ill. I can hear food cooking and burning, which helps my cooking skills 🙂

I am still working out some sounds, I think I have pigeons or something weird on top of my chimney – no idea what that sound is! The heating system frightened me with loud thumps until I reset it (and figured out what it was, once I had calmed down). I enjoyed running the London Marathon with my iPod and listening to crystal clear music, and chatting to strangers in the cheering crowds. I’ve been to rock concerts and really enjoyed them. Everything is still quite overwhelming but the sharp edge has come off and 99% of sounds are now bearable. I still don’t like screaming babies….uggg. Interestingly, nothing is too loud, nothing hurts and makes me cringe from the volume like the hearing aids did. The loudest sound I have heard is a thunderstorm in Gibraltar, which scared the **** out of me and I hid under the table – just like my dad used to do. I have learned that you don’t actually have to *like* a sound, and you can love a sound too. My favourite sound is the rain, it’s like a sprinkling of musical tinkles.

I use the following resources for rehab, as well as unabridged audio books. My favourites are apps targeted at non-native English speakers, which I use on my iPad or laptop. These have British accents and have very clear speakers.

The overall effect of being able to hear well is being much more relaxed about communication and meeting strangers. I can lipread and listen, and communicate with strangers very well. I have attended events and found some people very difficult to lipread, and was forced to listen to them, and surprised myself by how much I can understand. The problem I have seems to be with distance from the speaker – the further away they get, the more difficult they are to hear. I am not permanently exhausted as I used to be, and I really value my mental and physical health.  My other half is a hearing person, he doesn’t care that I have cochlear implants at all – which is a double edged sword. He’s a surgeon so he is used to all this medical mucking around. Before you ask – no, he’s not a cochlear implant surgeon – damn, I missed out on a freebie upgrade in the future! He is only too happy to use text messaging instead of the phone, he doesn’t look at me when he’s talking, and he likes to whisper sweet nothings into my ear – and in Arabic as well! (ohhhhhhh the rehab! LOL) So I have some work ahead to improve my listening skills, to keep my auditory attention “on” and try not to lipread so much. Isn’t it difficult to stop a habit, when lipreading is like breathing? It’s good to keep the challenges coming and to keep trying.

Reach for the stars, and you just might catch one.

– FYI my neighbours have just started drilling holes somewhere in their house. The CIs come off NOW! 😉

Happy New Year everyone xx





R.E.C.O.V.E.R.Y.

5 03 2010

People recover differently from cochlear implant surgery. It is wise to be as informed and well-prepared as you can, so you recover more quickly.

The side effects a patient can expect after CI surgery include;
* pressure or discomfort over the implanted ear from the bandage
* dizziness
* feeling sick to the stomach (nausea)
* disorientation or confusion for a while
* a sore throat for a while from the breathing tube used during general anesthesia

Then, a patient can expect to:
* keep the bandages on for a while
* have the bandages be stained with some blood or fluid
* go home in about a day after surgery
* have stitches for a while
* get instructions about caring for the stitches, washing the head, showering, and general care and diet
* have an appointment in about a week to the stitches removed and have the implant site examined
* have the implant “turned on” (activated) about 3-6 weeks later

(Source: FDA)

My tips;

  • Bring a hat, scarf or pashmina to wear home. My numb ear felt the cold very easily.
  • Bring a very soft pillow to sleep on. The hospital pillows are quite big and hard. They are great for sitting back on but I couldn’t sleep on them nor on the flat mattress.
  • When the nurse gives you tablets, find out what they are. I assumed I was being given painkillers when in fact they were just antibiotics, and I spent the night in pain – needlessly!
  • Bring a pad and pencil – I can almost guarantee you won’t be able to lipread the nurses and surgeon.
  • Take the arm off your glasses as your ear will be too sore. I forgot and did this AFTER my operation … and almost lost the will to live.
  • Stock up on soups as it may hurt to eat afterwards
  • Give the anaesthetist your biggest smile (I think this helps)

For the last week, I have felt dizzy, with a sore jaw, neck and throat, and was extremely tired. I could barely get out of bed. My tinnitus was like the roar of a freight train for a day after surgery, then two days later I awoke to silence. Oh …. bliss. I continued to wake up to silence for the next few days.

I went to have my stitches taken out. I saw they had a project in the waiting room, pagers available for deaf patients. I was handed a pager with instructions on a large key fob attached, saying that it would ring and vibrate to alert me. A friend happened to pass by and waited with me. A  nurse came out and happened to stand right next to me, and called out my name. The pager didn’t vibrate and I was lucky to have been able to lipread her. Not impressed!!

My surgeon is very pleased with my progress and says the ear is healing very nicely. I hadn’t washed my hair for a week, it was really icky, but I was so unwell that I just didn’t care. I had the surgical tape and eight stitches removed by a fabulous nurse – I couldn’t understand a word she said, but she was very gentle and did a super job. It didn’t hurt much at all. It looks great, doesn’t it?

On my way home, the tinnitus hit me like a ton of bricks as I was waiting to pay in a supermarket – I guess I’d had too much time to stand and stare, and Mr Tinnitus saw its opportunity to hit the bull’s eye. Otherwise, my recovery has been good.

It has helped to have lots of good wishes, comforting things and a bunch of great people around me. It’s funny to think that a week ago, I thought I could wake up and jump out of bed, and get straight back to normal.  Nooooo! I’ve had major surgery! I’ve had a hole drilled into my head! It’s gotta hurt somewhere!

I am unable to hear now from my left (implanted) ear. I don’t mind as this has always been my worse ear, and nothing made sense when listening only from that ear. I am told there is not much difference between my two ears, so hopefully I will have a good trip from activation (switch-on) day onwards. No activation date has been set yet although this is normally 3-6 weeks after the operation, to allow the area to heal. On activation day, I will be given the external transmitter part of the implant and will have my first programming session.

Knowing my luck, my activation date will be set for April 1st …. lol