Vestibular Migranes

As promised I thought id cover a piece about Vestibular Migraine's that I suffer with. Approx about 3 years ago I had a nasty bout of labyrithitis, it really knocked me for six! I couldn't get out of bed, my head spun fast and sometimes i was sick ( vomiting). My first bout was bad for a week but walking was so hard, i was disorientated and i couldn't walk straight at all  - i had to hold on to things and with the support of my Doctor my General Practitioner - he prescribed me some behistamine - i then began to feel better.

For those that do not know much about labyrythitis here's a summary :
Labyrinthitis is an inflammation of the inner ear,^[1] and a form of unilateral vestibular dysfunction. It derives its name from the labyrinths that house the vestibular system (which sense changes in head position). Labyrinthitis can cause balance disorders.
In addition to balance control problems, a labyrinthitis patient may encounter hearing loss and tinnitus. Labyrinthitis is usually caused by a virus, but it can also arise from bacterial infection, head injury, extreme stress, an allergy or as a reaction to a particular medication. Both bacterial and viral labyrinthitis can cause permanent hearing loss, although this is rare.

Strangely after i had labyrithtis i then proceeded to get Swine influenza, i was very poorly and put on strong antibiotics as well as Tamiflu to recover ( Tamiflu made me very sick so lasted only a few days - one of  the side effects!).

3 months later after recovery I began experiencing bad dizzy spells - very similar but confined me to bed at times and meant i had to rest - again my General Practitioner prescribed me  the same  medication to help - but after regular intervals, the attacks were becoming much more frequent and he thought something wasn't right so decided to refer me to hospital to see a Ear Nose and Throat Specialist.

Please note this all happened way before I was implanted with  the Neurelec device.



Seeing the Vestibular Specialist

On meeting my Vestibular specialist - I endured a discussion of my symptoms and a series of some tests one of them was alike below - Please do not attempt to do this by yourself - this is something that should only be done under a specialist care


http://youtu.be/NQr7MKJBAJY


It was concluded after the  tests that i was in fact suffering with
 VESTIBULAR MIGRAINE'S.

A Summary what this is is as follows:

What are vestibular migraines?Vestibular migraine is a variant of migraine in which instead of headache being the most predominant feature, dizziness is. Patients usually say that out of nowhere they got extremely dizzy and don't feel like they're on even ground. Some describe a spinning or rocking sensation. They have light or sound sensitivity and get nauseous or throw up. Episodes can last minutes to hours, and there's a chronic form where people have a constant sense of imbalance. In many instances, people have a history of migraine headaches before vestibular migraine shows up.

What causes vestibular migraines?
We believe they're an inherited disorder. Patients' brains are normal on MRI imaging but in the same way that a migraine is a disorder of function, meaning an abnormal firing of pain pathways, we're still trying to figure out the mechanism behind vestibular migraines.


There seems to be hyperexcitability in the brain stem that's overlapping with the vestibular structures—which allow us to keep our balance—that's causing the dizziness.

I was shocked at first because i didnt have any pain! but Ive been on a special diet - which has eased the symptoms very much - but I'm trying different types of medication at the moment to see if we can ease it. I'm thankful he understands how debilitating it can be - i tend to find if i stress myself out too much, eat some of the triggers it does flare up so I've adopted the spoon theory so i can manage my time and make sure i don't do too much too soon. Slows me down i know - but i suppose its all for a good reason these things and meant to be.

SPOON THEORY

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/





Post Operation

Very soon after my operation i was poorly with vertigo - but showing different symptoms - more difficulty and very spinny when i walked - but after speaking  to my Specialist he assured me that  this possibly was from the Operation and there was probably some swelling in my inner ear and he said it would subside - he was right it is getting better each day. One good bonus is - i don't seem to be getting as much ear infections as I used to. This is probably because i do not need to wear a ear mould no more so again another advantage to having the Implant.

Ive also noticed however when ever i placed my glasses on - it can be quite tender to wear this is probably due to the operation - like any other head operation it does take a long while for the swelling to go down  - Ive ordered newer lighter glasses.

Been also getting into Christmas spirit by listening to some Christmas Songs - Its quite nice actually as i can hear the beat and some of the melodies quite well. I struggled with that last year so I can actually say I'm looking forward to joining in the Christmas Spirit.

I'm due another tune in /mapping this week coming so looking forward to that - will keep you posted how it goes and update you with some new sounds Ive been hearing this month - I'm coming up to my 3 month listening milestone on the 16th. Over all I'm really pleased with how things have been - its just taken me along time to get adjusted - but like my audiologist said to me - Ive been deaf all my life so it will take me a long time.

Finally Ive set a Neurelec -Binaural  Users Supporters page on facebook - as i thought it might help others like me - if you want the link email me and i shall add you to it.. Im no expert - but its a good start I think.

Hi ho, Hi ho, its back to work I go!!!!

Before i begin i wanted to share this cartoon with you - again by Ian johnstone - my husband and i joked that i would never be allowed near a scrap yard, it just explains it all really ha ha:

Returning to work
Over the last two weeks I've been weaning myself back into the workplace - I'm on a phrased return which has supported me tremendously. I never expected to be of sick this long - but I've been so tired and all sorts of problems with vertigo, infections etc. This may well be because I suffer with another condition called Vestibular Migraine's. I will explain them later on in my blog but for now lets focus on my workplace.

 I work in an office, for obvious reasons I choose not to say where but the work i deal with is mostly administration. Administration as in volumes of paperwork, filing, PC work and data entry. Its a busy environment and very noisy! A like a majority of deaf people i need accommodation's or otherwise known as in the UK : reasonable adjustments.

To gain these accommodation's has taken time - especially as my hearing has deteriorated and also due to many management changes - its been a challenge at times! Much of this through fault of my own due to my speech being so good and struggling to be alike everyone else! But at the moment I have a very supportive team who i work with- they've all missed me since Ive been of sick and been really kind to me on my return.

My first day back to the office was only for 3 hrs and a bit of a shock to the system for my poor ears! As everyone welcomed me back i heard a grinding noise and looked around and saw a colleague get up and walk to the printer - the grinding noise began again and i realised then it was the printer making the awful noise! I have heard printers before when i was sat next to them in the past - but not as loud as that - help ! -it terrified me.

As well as printers i could also hear tap tap tap tap - which took me days to suss out - standing by someone i realised it stopped and on asking them what they were just doing - i realised it was the typing of the keyboards! Another new sound to get used to!

It wasn't all good though - still struggled with peoples voices at times but they were very patient and prepared to help me understand at times. The journey into work was not  pleasant either as the bus i got on had a terrible engine- it drove me nuts so i flicked the magnet of - it was abit early on in the morning for me!

A funny moment for me was when we were having a meeting - usually we have an interpreter booked but this was a quick meeting and I usually join and get told afterwards whats being said but this particular time i could hear this loud 'crunch' my team saw me doing this frantic 5 minute twirl and there it was - a colleague was crunching on his crisps! I think everyone laughed at him and me as i pointed over and said ' what was that ? ', and he was half way munching a huge crisp and cowered like he wanted to hide!Poor bloke but funny at the same time!

Its not always been an easy ride as Ive also found myself going home for a kip when I've got in from work - its such a noisy office so its something i have to get used to - I've also had alot of hospital appointments as well as travelling to and from them but on the whole - I've been lucky  - and I'm so proud of my colleagues for being supportive.

Having a cochlear implant isn't always an easy thing to explain - but with all  the literature that SOECIC ( south of England Cochlear Implant Centre) have provided me with, my reports my hearing therapist and Audiologist provided - its helped me a great deal. I'm sure theres still hundreds of noises for me to learn - but having them to share it with them - means alot to me.



I wanted to end this by adding a poem that i replied to someone on here - i get told alot by people that they've learnt alot from me from my blog - through out my life I've always believed that being deaf was an purpose to help educate people - but this describes it perfectly

xoOXOox



My 2 month milestone ! - a crow squawking!

A week or so after my tune in I emailed the CI centre and asked them to see me - something was making a fuzzy noise, I really wanted to throw the processor off at this stage - Helen came back to me with a date for me to see her - such a relief! We did some work with some of the electrodes and few other technicalities to improve the way I was hearing sounds.

 

The electrodes

They also changed my little microphone as at times it was cutting out a bit .Again much improved things - especially when we turned of a few electrodes. I felt so much better - I knew things would never be clear yet as it was still early on in the listening journey but it wasn't annoying me as much now - we had a funny moment actually as Helen was looking up the songs i had been listening to especially my 'twinkle twinkle little star!' on laptop to see if the buzzy fuzzy noise was still there and coming back to the software to alter things. She was so kind and patient with me yet i kept saying to her -here we go again !! - it really helps her and me work together on trying to work out what the trigger was. 

Sometimes its very hard to explain to Audiologists how the noise is, so that's why they ask you to take notes - or explain the type of thing that sets it of. Mine was all day traffic, being on a bus and some television scenes of music! Some voices were distorted as well, Male voices were much harder to identify than female voices. It can also be difficult in the soundproof rooms they use to identify the trigger - so Helen does this fantastic 5 minutes - making noises like clapping - banging on drums and ringing bells to see if i am comfortable - this is so important to me and probably  to every Cochlear Implant wearer.

In my earlier days iwas given a folder the pack included a long list of words to use for describing sounds and noises - this proved very helpful as its not always easy to describe if you've never heard properly before.

Some examples are shown below:


On the 16th November - i reached my 2 month milestone

I began to reflect back on noises Ive heard - and It made me wonder how an earth i coped with my hearing aids. No wonder i was tired and no wonder I was feeling so low confident. Don't get me wrong things are far from perfect now - Ive still got a long long way  to go yet, but I really am pleased with my progress. OK I've had set backs and difficulties - but its still so new to me and my poor brain hasn't heard very well for 35 years of my life! So now its had a wake up call and has to identify something new - SOUND and LOTS OF IT!!!!

Been listening to some old music tunes as well -  some old songs i was familiar from my teens -some days appeared to be much clearer than Ive ever heard before - so my family probably thought I was a bit mad when i began to rock my head up and down along with the beats!
I'm thankful we also have access to you tube on the Internet  - so i can download songs alongside the lyrics - its really helped me to  follow the words so i know I'm in rythmn with the moment, in the past I just followed the beat by using my hands or bear feet to feel the vibrations - who knows maybe soon I shall be able to listen without the lyrics showing but for now its been a great site to use for my listening therapy. Again my audio lead has been a godsend - i can link up and listen via my laptop - you can also plug it into a CD player, Television, Ipod and some many other things to enable you to listen 1 to 1 - just like headphones do for hearing folk.

Music Appreciation: Rocking your head up and down along with  the beats!!!

I had a special moment - a few days after my seeing Helen, I got of the bus and heard this loud roar- and the more i heard it the more it became clearer. I was sure  it was so near or above me. So i stopped in my tracks - and continued to look around me, side to side and above me - again I heard it but couldn't see it - i looked down disappointed that i didn't or wasn't able to identify it. Usually my husband would be with me and be able to help me identify it  - but suddenly a crow flew down in front of me to pick up some breadcrumbs and there it was the crow the noise I had been hearing - 'A Crow squawking!' I had tears in my eyes - I've never heard a Crow before and for the first time in my life I had heard one! WOW

I was on top of the world when I got home and so excited - most people who saw me in the street probably thought I was some mad woman - but to me, it was a precious momentum. I was beginning to fall in love with my Cochlear Implant!

HOW THE KINDLE WORKS WITH CI - STEP BY STEP GUIDE

Since my last blog - ive had quite alot of interest in my Kindle so i thought i'd update you how it works. Ive only been using it a few weeks and speech is getting much clearer to understand. Please bear in mind i only do an hour a day at moment - due to only being switched on since 16th Sept this year - I dont want to overload my brain!

The Kindle i have is shown below in the link - its important to get the correct one the cheaper one on the market which is showing in the uk doesnt have the audio link, i dont know how many of you read  this so whereever you are in the world make sure you check it out. I went to my local shop to see it first before my decision.

http://www.amazon.co.uk/Kindle-Wireless-Reader-3G-Wifi-Graphite/dp/B002LVUWFE

I also acquired a new case, again it had to be purple to match my CI ( Cochlear Implant!)

Snazzy eh?

How to link up with my CI?

Most CI wearers have a audio lead which can be linked up with there CI, with the neurelec, you have to remove the 2nd micophone that is linked up via lead. The audio link is then placed into the same place as the wire. Some neurelec wearers say they hear only in one ear - but i can hear in both when i connect so i think its a case of the brain learning  to adapt to both sides.

My audio lead - Above

Audio lead hooked up to my CI ( and yes i know i dont have my purple one - its still in repair and will be back soon)- As above

I then added my audio lead to the Kindle before i turned it on - As below 

You will see the audio hole here

This is with the lead inserted- As above

My next step is to switch the kindle on !- As above

Once the Kindle is turned on, the page or book from where i prior read will show or you will have to select a book to read.- As above

                               I then need to press the Aa button - my finger points at this button - As above.

Once the Aa button has been pressed, a menu will show - as below

You will see the Text - to - Speech on this menu - well you need to scroll down and highlight it and press enter

Sorry abt the quality of the above photo - but if u cant read it it says in order 1, text to speech - turn off or pause, 2 Speech Rate - slower, default, faster and 3, Speaking Voice - Female or Male

You can scroll down and select accordingly press enter

And .... your set to go! Happy Kindle Reading!

A photo of me reading my kindle with my CI Audio lead attached - in my PJs sorry folks but i always read before going to bed - it helps me relax and helps settle my tinnitus!

Hope you found this helpful

Any more questions please feel free to ask

More auditory therapy and Kindle Listening !

Shortly after my tune in my second rehabilitation session began with a lovely lady called Anna Duncan, who is a hearing and speech therapist, i began by being nosey and asking lots of questions about herself - I'm terrible like that at times - but it comes with being deaf  - i don't hear much so i like to ask loads of questions - or if else fails I read about it ! - she was great and in turn asked me a bit about how i was coping. I explained I was feeling a bit low, but I think that was because of my broken processor, now it had been fixed i felt relieved as all sorts of thoughts were running through my head - why was it crackling? was it normal? and is this a sign the implant isn't working so well? Once again she told me all was ok and I had only been learning to listen for a short period of time and I agreed i needed to be patient! It did however feel much better when Helen had changed it and tweaked some of the settings!

We began a few exercises, she had a programme of pictures and words that she showed me on her laptop and used an old embroidery hoop that was covered in material to cover her face when talking. I had to work out what she was trying  to say without lipreading - a very hard thing to do and very tiring too. Her voice was quite clear and she spoke loudly for me. She also pointed at some of the words for me to speak so she could see what my speech was like. I'd been quite lucky as my parents taught me speech well so i knew that my pronunciation wasn't too bad. I do however struggle with my letter S and P's but that's normal for someone who has hearing difficulties. I think Anna was indeed impressed with my speech - i tell you now that didn't come smoothly - i had to really work on it as a child - I suppose i felt proud of her words. Not many people say that to me now days.

Some of the words we used were as below:

RAINBOW
ICECREAM
TEAPOT
FLASHLIGHT
BASEBALL

    -------

STARFISH
STOPSIGN
LIGHTBLUB
SEAHORSE
FOOTBALL



It felt good  for what i had achieved  out of this session, and identified that i still struggled to tell the differences in some words - i wasnt expecting miracles as i couldnt even hear sound prior to my implantation - for the month I had been activated we both agreed we had done very well. I however did need more work on my silent letters, as i was a prior hearing aid wearer -  I probably never ever heard them before there would be some more work to come . Ive also noticed recently that female voices were becoming much easier to recognise compared to male voices? and   I was beginning to learn not to shout when i spoke - Ive been doing this ever since i became profoundly deaf as i had no way of knowing the volume of my voice. Again very common with deafies who had my degree of deafness.

Anna gave me some tips and asked me to practice this at home.


My experience at Fratton park seeing my favourite football team play

I had a nice surprise a few days later - I'm an avid football fan for my home town 'Portsmouth' - and some fellow pals id be talking to through facebook for along time - so Andrea and Dave ( the gorilla- that's his nickname by the way - don't ask - too long a story to explain!!) invited me to go along with them to watch the Doncaster v Portsmouth match at Fratton Park, I took my nephew Louis along with me in tow.It really cheered me up - it was just the tonic I needed. I love football - but Ive never been able to have the confidence to go. I didn't hear what was behind me, my husband who also supports was working most match days - so my fear was if any trouble, danger or safety was needed id be stranded - when Andrea and Dave said they'd look after me - i was bowled over with gratitude. It was nice to meet them face to face as id been talking abt Pompey(The Slang word for Portsmouth!) for a long  time on the Internet to them.  As a thank you to them I asked my fellow friend Ian Johnstone to draw and design another cartoon of us together!

The match was a great listening experience for me and that not just because we won 3 v 1, I could hear the crowds and the beats, people cheering, it was a bit messy to be amongst at the start and i did pound poor Dave with a few questions as there was loads of sounds clashing but he and Andrea were great! I did struggle with the Melody's of songs they sang  - Portsmouth Fans are well known for there songs and chants all over the UK!  but overall what a great day!. I hope if i go next time it will be much clearer to hear - as I'm sure my brain was processing every moment ! I look forward to the day i can hear the crowds singing:
PLAY UP POMPEY - POMPEY PLAY UP!!! 



Listening through a kindle!!

Lately Ive been researching about Audio Books some of my C.I followers have told me about them - but my main worry was i still wouldn't know word for word as speech is still distorted for me at times. Speaking to one of my pals who had a Kindle i progressed to ask her if they had an Audio output on them - her one did - i jumped with joy when i heard this! For those of you who don't know what a kindle is its one of the latest gadgets out on the market- photo is below - it means you can download books from the Internet and read them on a screen- good stuff eh?. A discussion with someone who lived in the states USA proved also very helpful she described how she had used hers to help her learn speech, The words would still show on the screen like a book and I would be able to follow and listen at the same time. I was amazed how fabulous technology had become, now that's what you call a double jump with joy ha ha  a few days later i jokingly asked my parents if they could purchase one for me.I never thought for a second it would be taken seriously as I don't often ask for much but I was so chuffed and excited when my Mother told me my Father had purchased one for me - my birthday isn't until next month and my husband agreed to contribute towards the cost as my present.Best of all I was allowed to have it early to help me progress. My audio lead that Neurelec provided me was very helpful for this - so I am now pleased to say I am a Kindle addict ! Thank you so much Daddy - I love you!! xxx by the way something else to mention here is I'm cautious of overloading my poor brain with too much sound at the moment so i find an hour a day of listening is enough - each person is different but i with patience I've learnt - little steps!

 Im awaiting a new purple case for my kindle in the post! - it just had to be done so it will match my CI after all im a purple princess he he!

Disclaimer: Dear father Christmas i will not be held responsible for an influx of CI wearers requesting a Kindle for Christmas - much love the CI Kindle Addict Lisa B xxx

PS I think ive been a good girl apart from nicking husbands choccy bar out the fridge the other day so if theres any chance I  could have a ipod shuffle for Xmas so i can listen to all your chrimbo tunes I Promise to be a very good gal forever !

The second mapping -Gosh i need to learn patience!!!

I had my second mapping today and saw Helen who did my activation - was good to see her again, I explained things have been tough - id had a few stressful days as my best mate Emma got married i was bridesmaid! which was the greatest honor I could ask for - especially when i asked her if she wanted me to take my CI of for photos her reply made me melt
'don't you dare its part of you!'- i didn't have to do much for it as shes an organisation freak but it was the listening to everything that put me down in the dumps a bit - i think maybe my expectations were a bit to high to begin with?

Crackling?

The sounds i have been hearing were great I've heard more than I'd ever done before but a continuous crackling when any noise was present was driving me mad- it was making my listening experience so tough at times.

Helen did some further investigation and made some alterations via my mapping programme but it didn't seem to make much difference. Once again neurelec representative was contacted and he made some good recommendations- between them both they changed various things like microphone sensitivity etc. In the end we decided to change my processor and i discovered that it was indeed much better than the prior one!

We did the famous lipreading test as well which brought me good news: I  managed to understand 41% of what was being said, when i looking back at my records Helen said i was prior to the implant only getting 27% so an amazing improvement!


De-noising
After my mapping session Helen decided to try me out with a de-noising programme - because she felt that maybe i was sensitive to the background sounds and asked me to change the settings to de-noise further if i needed to - i found this quite interesting as with hearing aids you could never do that - the background noise used to be a pest especially when you wanted to hear in a noisy situation. She did say it probably will be like this but it may help my listening much more comfortable - rather than annoy me enough to want to take it off! Its important i wear it as much as i can - to give my brain a chance to adapt.

I am however set back on my listening journey as it appears my left ear in which the processor hasn't been receiving sound well, means that more work is needed which means more appointments - but i didn't mind this as each tune in I have the more improvement I see! In fact i feel sorry for the Audie's! I was born a pain still am! ha ha!



Patience
Once again she reassured me that  I've only been listening via the implant for a month and that i needed to give it more time, for those who have had hearing before it was easier for them to adapt, although I've had some hearing I've always been deaf so it is indeed going to be quite hard for me at the very beginning. I realised that perhaps i needed to be a bit more patient with it all. I think back over the past weeks and I suppose what made made me sad was at the wedding reception i was listening  to the 'time warp' and found that hard i could hear the beat - but words were disorted. Helen explained to me that it would be hard for my brain to hear that at this stage as so many different noises were clashing together. SO PATIENCE IS THE KEY HERE !!!

I also bumped into an old pal of mine Emma at the centre- her brother went to school with me, it made my day seeing her- was good to catch up with her and she too was going through all the assessments for a CI - i noticed quite a few of my deaf peers in my age group were indeed considering it.

IF i look back i know its been a tough few weeks for me - but through this all i don't regret it - id never heard the clock ticking that annoys me now!, keys rattling, cars passing by( drives me mad most of the time!) twinkle twinkle little star is getting clearer each day and so is my husbands voice! The train journey was also much more comfortable than last time- a big phew! So I've achieved quite alot for my first month
'Good things come to those who wait!'

Oh by the way i have a new nickname for my CI 'BOGOF' ; which means you buy one and get one free! - and I've been given a nickname as well by Helen and the rep - 'Lisa the blog!!' kind of like it actually ha ha!

Going to miss my PURPLE processor but they promised to send it too me in the post once its been repaired : Get well'Bogof'! I also received a parcel in the post the other day - some battery's - WOW these guys  think of everything - I cant begin to tell you how much time you save me! I get  through 2 battery's every two days - i guess it goes to show how powerful the processors are! 

This is a huge advantage as they never did that with my hearing aids ! So that saves me a fortune in travel costs and time, to all the staff @  SOCIEC ( SOUTH OF ENGLAND CI CENTRE) SPECIAL THANK YOUS - your faith and encouragement it keeps me going xxx 

Hearing Therapy 20/9/11

After my first tune in i met up with Speech and language Therapist, Sarah  - her face looked familiar to me - we worked out i may have seen her prior in my childhood - she had been a therapist for a long time and as it was such a long time ago it was difficult to distinguish when and how?!it was still nice to speak to someone who knew some old teachers of mine. We spoke about how i was coping and what i was hearing - i did explain things were a little crackly at present but each day was getting better.

( i couldnt resist but to put this photo up- as it seemed so appropriate for the word - listening !!)

We the began some listening exercises- this was done by her facing me with a paper on in front of her face so i couldn't lipread what she was saying.
I found this part very difficult and took up alot of my concentration - a majority of the time i could hear mumbles and work them out via syllables. we began a simple exercise by naming the days of the week in any order and by random:

MONDAY

TUESDAY

WEDNESDAY

THURSDAY

FRIDAY
SATURDAY

SUNDAY

This proved difficult especially as each day ends with DAY! Sarah explained the syllables to look at eg WEDNESDAY has three WED - NES- DAY  and so does SAT- UR- DAY. It was equally frustrating for me as i felt like i was going back to my childhood and starting all over again!

We then progressed on to numbers:

ONE, TWO,THREE,FOUR, FIVE, SIX,SEVEN, EIGHT, NINE,TEN

and she taught me to identify SEVEN as it had two syllables : Se- ven ..

her last exercise she did with me was read a paragraph and i had a copy in which i was to read and follow where she was at - at times i did get lost as everything still sounded RAH RAH or MOM MON but i could see each  time i heard it - i was able to identify it more!

She advised me to practice this at home with my husband - which I did most nights when we sat down to watch Television.

Ive also been watching some simple listening tunes on you tube they are below :

TWINKLE TWINKLE LITTLE STAR !!!

THE ALPHABET SONG

I followed these and the exercises on a regular basis and each day it was getting clearer and clearer to listen to, yes it was frustrating to start with i felt like i was turning back the clock doing things i did as a child but the more work i did on it the more listening skills i acquired.



My very first tune in! = Listening, Hearing and Discriminate!

The start of my day began with a noisy trip to the CI centre in Southampton, a big shock to the system as i hadn't been out for a few days so listening to the people talking in the street, traffic going by was like breathtaking - it was difficult to explain as i had thoughts like ' Wow i can actually hear something!' and 'Gasp' 'its too noisey' - i got in the habit of flipping the magnet off when it became unbearable! But didn't leave off to long for fear of not adjusting!

The journey was traumatic too - catching a train with tannoys, guards shouting whistles blowing( cringe)and train engines was horrifying ! But I did it! I kept on going and i kept the thing on! When i arrived at the CI centre i felt relief and shivery as i had made the journey and also encountered the big wide world out there - gosh we live in a noisy world don't we!!??


I met a different Audie ( Audiologist), this time her name is Roberta - she was very patient and friendly, passed her over my diary of sounds and she encouraged me by telling me that to hear what i had done so far was great ! I suppose i didn't feel it at the time due to my first experience of facing the big world out there! Note to newbies - get some prior listening before making journey to CI centre as that was traumatic for me! Pat on the head to me I should of asked her for a star like you get at school!!

We began my session by discussing the sounds I've heard - which she identified as high frequency, i also mentioned that one of my ears was doing far better than the other - that's how it felt anyway - she then went on to do a hearing field test with my CI on - so she could identify what sounds i was hearing and not. This helps her to work out what level I'm hearing at through my CI and then she can tune in frequency's that I am missing out on. Alot of CI people call this a mapping . Clever stuff i might add, that takes alot of thought and thinking about, especially as they have to look at each electrode individually. The good news was that I was now hearing some things at 30-40 db prior to my operation I could only hear at a range of 120db - what an amazing jump and difference! 

I have 24 electrodes 12 in each ear - for each individual electrode she has to then match and tune me in via a lead which plugs into her laptop and then she would have a programme that could be altered to what both she and i felt was a  comfortable level for me. Crikey i remember when they used  to tune my hearing aid in via a screwdriver - such fiddly things they were! Gosh times have changed so much since i was a child!  I can also remember being so sensitive to sound when i was a hearing aid wearer  when i was moderately deaf which worried me a bit with the CI - but they reassured me this could be adapted to make me comfortable. All i can say is WOW welcome to the TECHNICAL GENERATION !!!

I then explained to Roberta how i was coping and said although i was shattered - i still found it hard to identify the sounds, in that i heard them but still couldn't work out where they came from - she explained that there were three different stages:

1, Listening: My brain would be adapting via the CI how to hear - not quite clear enough for my brain to understand where it was coming from

2, Hearing: Id be able to tell where the sound is coming from and hear the sound clearly- but not quite understand them - this is when id be annoying and keep on asking 1001 questions what the sound was? ,where it was coming from ?

3, Discriminate: Id be able to tell the differences and recognise a range of sounds and know what they are 


I think i also need to thank my husband and family here as I've probably been driving them mad - every time I've heard a sound - I've been asking that what it was and if they could repeat it! When he placed his cup on the side the other day - i made him do it 3 times so i could clarify what it sounded like! When we were in the car - something was clicking and I made him pull over and start the car again to identify what the clicking noise was - it was the silly car indicator! I think my face dropped in awe then as i don't think I've ever heard the indicator in the car, and I've certainly not heard a cup being placed on the side before!!

The bad news was I was experiencing what i described as a buzzy, crackling noise and Roberta discovered via audiogram (a graph they measure sound on) that my high frequency at beginning and end  was dipping at beginning and end so decided to turn this up so my brain would be able to adjust accordingly.

Once again i was asked how it sounded once all electrodes were switched on together  - and the buzzy crackle was till present so Roberta did some tweaking and had a discussion over the phone to the Neurelec Representative - she was able to adjust some other things via her laptop for me. It helped a lot that they communicate and work together so that they can make sure i get the best of my C.I.

 heres there link if you wish to know more : http://www.neurelec.com/

This session lasted an hour and half, but the difference was great , once again Roberta set my 4 setting's on my CI differently at a louder step each go so after my brain adapted to the sounds i could switch on to next stage. Its like this - you r brain hears it the first time and it may be just too loud, but the more and more you hear it and recognise it the quieter it gets so you need the next step - inmy case a setting switch to get more benefit from it ! Strange but it works and also makes me realise how amazing our brain adapts ! I call it changing gear - like a car does in but in different speed or conditions!

Hope this page wasn't too  much to take in - I know the feeling as it was for me that day ! I'm so impatient though - I wanted to hear music cant do that yet but I'm listening to simple things on You Tube ( has videos and music links on it ) everyday and television so each day it just gets clearer and better - will be updating you on my hearing therapy rehabilitation next so watch this space!

Thanks for reading this and look forward to any feedback

Lisa x

By the way MR Tinnitus hasnt completely gone yet but its starting to improve each day xxx

My first introduction to sounds!!

Welcome back too Me! So sorry i haven't updated - i seemed to lost my mojo for a bit, its been an intensive month with so many appointments and recognising sound but I'm OK - and doing well. So i keep getting told ! ha ha! ( I'm a bit weary at the moment)

My first introduction to sounds!

After my switch on I was absolutely knackered - it was amazing how much i took in - if you watch the very first video in my prior blog, Helen the audiologist scientist ( a role of a very dedicated person who knows all abt measuring sound and understands hearing loss), describes that i was going to 'feel very tired for the first few days, as the brain takes a while to work out sounds I've probably never ever heard before!' - well guys she was right, it was like my brain was being plugged into to electrical socket - and my bodily functions felt almost like flu - i ached i didn't want to move it was too much hard work and SO intense! So i just had an easy few days, just resting!

After my tune in audiology appointment i was given a big box of neurelec stuff which included a book told to keep a diary of noises so that the Audie ( audiologist ) could see what i could hear and what needed adjusting in future. I was also given a pink folder with my name and all the guidelines and info about being a cochlear implant recipient - this was very helpful as there were things i didn't know like what to do if i went flying, got an ear infection and whom to contact in an emergency. It wasn't too much to worry about as i could do most activities so long as i took care.

My first day of sound:16/7/11

The implant was easy to attach although i kept thinking to touch a ear mould - i used to wear digital hearing aids before and these implants don't need one  ha ha! So it was a bit strange to begin with! Voices were helium like - metallic crackly buzzy - which didn't make sense, some things were echoey like a submarine sonar radar going off 'OOoo Ooo  OOoo' - but managed to hear  the car engine roaring away when  my husband drove me home from the centre! That was to me pretty amazing as I've never heard anything like that before the implant so i knew that it was a pretty good start !

Second day of sounds :17/9/11

I began to realise noises were changing especially voices they sounded like i was listening to R2D2 robot from  from star wars!! and began to change later in the day to lower tones like 'RA RA RA' - still couldn't make sense of it yet

Third day: 18/9/11

I managed to hear a cup being put on the side - made my husband repeat and repeat the action as i wanted to clarify how it sounded - i couldn't believe i could hear it wow. Still getting R2 D2 in speech but kind of smiled as i like him ha ha - I'm a bit of a star wars freak anyway - when my daughter asked me who he was i had to show her a photo on the Internet and after googling it - I accidentally found a R2 D2 translator here's link :http://www.r2d2translator.com/  we couldn't stop laughing as it showed me the transcript and words that R2D2 would say when i typed our language in ( PS try swear words that's even funnier ! - i know I'm naughty!)

Also some light humour for you Ive attached below is a personal cartoon of my experience of me drawn  by a very dear old school friend of mine Ian Johnstone :

It made me chuckle - if you require any information of Ian's services please email me on lisabai@ntlworld.com or follow Ian's site http://idjmedia.co.uk/ A special thank you to Ian for this and also for his support during my hearing journey - hes kept my spirits up that's for sure and when i saw this i had the biggest smile ever!

After this experience I then had an interesting experience of the toilet or should i say lavatory !! My husband heard me banging and on his discovery asked me if was OK and i replied in shock: 'that damn toilet flush terrified me' i must of jumped ten foot in the air! Good job i had me knickers back on ha ha!  Speaking to Cherry another neurelec C.I wearer she too had experienced the same in the beginning of her journey - so warning to newbie C.I wearers! Phew wouldn't wish that shock on anybody !!

19/9/11

My morning began discovering how noisy i eat !! i could hear the spoon rattling in the cereal bowl! 'Cringe' no wonder my daughter used to moan about my eating habits and yet my darling husband never moaned - i suppose having deaf parents it was the norm to him - aw how sweet is he eh ?!  Voices began to get slight bit better, tone was there despite R2D2 appearing ! I also heard some of  the keys  on my laptop keyboard being touched in a very soft fuzzy tone, so that was very exciting to hear too!! I proceeded to flush the toilet but left the magnet hanging off this time hahaha! i wasn't keen to endure another shock yet or heart attack ! I'm too young to go yet and besides i hadn't full filled my mission yet - the blog !! I'm due at the CI centre tomorrow so maybe a tune in will improve things - I've heard the more you tune in the better it gets but I'm happy for the first week to hear what i have done - its a bit frustrating though as i wanted to be able to hear some more things - but i suppose being in doors and taking it easy is probably enough for me at the moment - been sleeping like a log!!


Ive attached some photos of the things i was given after my switch on for you to look at below:

The case my neurelec

The whole processor ( right in purple)and microphone( left in grey) - on top of a wallet case full of accessories to be used

The whole box the accessories manuals and cases came in - it also also included a massive supply of batteries, wipes, neurelec card, leads etc ( i felt like it was my birthday when i got it ha ha!)

Me wearing my processor which the magnet lies on my left side, you can also see the beige lead that attaches to the microphone onto my other ear which is below

My other ear showing the microphone!!

Good to see my hair growing back isn't it - he he! keep you posted how the tune in went very soon !

By the way special thanks for my C.I pals for support and the audiologists for there patience xxxx

MY BIG DAY THE SWITCH ON : MY PERFECT MOMENT

My big day MY MOMENT  - The switch on!


The day before 15/9/11
Havent had  the chance to update this till today been soo tired and busy, but today ive decided I must update you all and stop some of you waiting in suspense! So how am I ? Im ok very tired but the scars are all healed ! Tinnitus a little wild but I suspose thats to be expected - not been sleeping to great but thats probably worry.. Its such alotto take in - gosh to think i may hear something in a day or so wow!




So here it is the big day ?! 16/9/11

Travelled up by train with my lovely mother - arrived safe and well. A gentleman said hello to me at reception but i didnt know who he was and found it hard to hear him. He must of thought i was soo rude - but i was nervous - i thought id be excited but i think i was scared with butterflys in my tummy - i kept having  this thought thinking what if it doesnt work? crazy i know.. anyway my lovely mother recorded the activation for you all to see

Part one: Dr Helen Cullington ( Audiologist scientist) and Bradford ( Neurelec Technical Expert) Explain what i am to expect and what will happen :

 I suspect your all wondering how did it feel after helen placed the CI on my head?  i was amazed, as it was soo light to wear and i didnt even feel it - they felt lighter than my old hearing aid! I was even happier when i saw i got the purple colour i requested ! Yay Im now a Purple Princess!!

The gentleman i met at reception in fact ended up being a technical expert from neurelec so it was nice to meet him and he offered to type down what Helen was saying as i forgot  to book a interpreter - he was a nice guy and I was very happy to have him there to help me.

Part two: The Activation/Switch on !!

This whole session was intense - I was feeling very emotional afterwards - didnt know what to feel - WOW i had finally heard something but it wasnt perfect it sounded like everything was a cross of being on helium and the character R2D2 in starwars! but they were pleased - the electrodes were working - i was hearing some things - and i needed to ensure iwore them everyday so my brain could adjust! When i finally arrived home i felt like i was on top of the world- if it meant little steps each day then so be it - i had to remember I was like a baby learning to hear again.. So this was it - it was my moment - something that will probably stay with me forever.

A LOVE SONG I USED TO LOVE - PERFECT MOMENT : THOUGHT ID ADD IT AS IT CERTAINLY IS HOW I FEEL NOW - LOVING THE FACT I CAN HEAR SOMETHING AT LAST!!!! ( IT MAY NOT BE PERFECT AT THE MOMENT: BUT AFTER LOTS OF HARD WORK IM SURE IT WILL) 

****Special thanks to my mother : Margaret for coming with me, also my dearest friend Angie for lending me her camcorder..and to all the staff at Southampton they have been fantastic **** 


PS, if your wondering who R2D2 is here he is- see below