Image by Jill Wellington from Pixabay
When I was a child, I used to play a game with my sister, called Dizzy Dollies. I don’t know if this was an actual game, or just something my mum thought up as a way of keeping us occupied. The game involved spinning around, usually on grass, with arms outstretched like birds. We’d spin; our arms feeling light from the rotational force, until the dizziness became too much for our brains and bodies to compete with, and we’d fall down with a joyful thud of giggles.
Since my hearing loss, that feeling of dizziness a few moments before falling is always with me; following me around like an unwanted shadow. I now have a sense of dizzy instability, much stronger and more frequent than before my recent vertigo attack. When I’m walking around my apartment, I feel OK. My brain is accustomed to navigating my body around the small enclosed space. However, when I go outside, my stabilisers are removed and my vulnerability is exposed to the vastness of my surroundings. The movement of people on the streets and the cars on the busy roads cause a rapid development of confusion in my balance, and in turn my ability to steer my body with composure is put to the test. When I’m in a crowd, or if I turn around and see someone standing close to me, I immediately feel off balance and the Dizzy Dolly feeling hits again. Every three or four steps I feel a heaviness building inside my head combining with the ever-present pressure in my ears. This weight causes a sensation of my head being forced downwards; a feeling that quickly spreads through my body. My legs become heavy, and the floor seems to lurch towards me. I am constantly trying to find my balance. Sometimes I feel nauseated. Other times I need to sit down to regain my balance. I feel dizzy if I look around too much or too quickly. Certain types of lighting also seem to affect my steadiness, especially in supermarkets or department stores. I’ve noticed some difficulty focusing my eyes now. Sometimes when I try to concentrate my sight on a small area, my focus drifts away and I have to keep forcing it back. I don’t feel comfortable walking close to people with walking sticks, pushchairs, prams, and small dogs, in the worry that I will lose my balance and fall on them.
For the past month, the only advice I have been given is to rest. And I have rested. Yet, if anything, the feeling of dizziness when I am outside seems to be worse than ever. It occurred to me that maybe resting could now hindering my progress.
Whilst searching on the internet for practical advice, I came across a blog entitled ‘Life with Sudden Sensorineural Hearing Loss’. It was written by a girl named Dana, who had experienced sudden hearing loss in the summer of 2007. In her post ‘Be Active’ Dana describes her return to college after losing the hearing in her left ear. She writes about the challenge of her ‘roller coaster’ bus commute, and the instability she felt when riding the escalator:
‘I made my way to the escalator, gripped the railing firmly, and focus my eyes on my feet to prevent losing my orientation on the long descent to the metro platform… The movement, the echoy noises in the metro, and a constant sense of chaos.’
These experiences were incredibly similar to mine. I felt some comfort in knowing that someone else had also undergone these challenges when travelling on public transport, following a hearing loss. Dana explains how her daily commute became easier during successive months. Then over Christmas, she worked from home and didn’t have to worry about her hearing and balance. When she returned to her classes in the New Year, she comments again on her commute:
‘The bus ride to the metro was just as terrifying as it has been my first week in September. All progress that I’d made on my balance was lost.’
Dana consulted with an audiologist who carried out extensive tests of her hearing, eyes and balance. She also listened to Dana’s story about how her balance had improved during the autumn, and after asking follow-up questions the audiologist gave her a simple instruction:
“You’re healthy but your balance is off. From here on out you need to retrain your brain constantly where your new balance is. And to do that, you must simply stay active. That’s your prescription – to stay active.”
Dana summarizes that ‘During my several sedentary weeks in December, my brain had completely forgotten all of the lessons I had taught it.’
Maybe this is what has happened to me. I have been told to rest, and resting has enabled me to feel stable in the small surroundings of my apartment. But by resting every day, and spending a lot of time indoors, my brain hasn’t needed to work to constantly recalibrate my balance. Perhaps I need to retrain my brain to manage my stability in more challenging situations. Maybe I need to become accustomed to being outside again; to feel more confident travelling on the Metro, riding escalators, and walking on busy streets. Maybe the best thing I can do to help shake this Dizzy Dolly feeling is to ‘stay active’.
In the lack of any better suggestions, this is the prescription I am choosing to fill. I have had enough of resting. I am an active person. I enjoy walking and running and being outside. I have rested enough. This condition is unpredictable, and I can’t spend my days waiting to feel better. I certainly don’t want to be always waiting for the next vertigo attack. I need to focus on continuing with my life as best as possible. I will endeavour to ‘stay active’ and attempt to lose this unwelcome shadow of dizziness.
I think you’re onto something, Carly. I can relate but in a different way. I used to be bothered by noises here and there, but nothing to complain about. That was when I worked in a call center – always a noisy environment with chatter and different sounds everywhere. But since I’ve switched to working from home, I’ve noticed that my sensitivity to sounds has dramatically increased, and that was even before my SSHL happened. Now that I have SSHL, most sounds are unbearable to me and I find myself getting angry a lot. I can imagine that you’re not looking forward to forcing yourself to be more active when you have pretty strong vertigo, just like I’m not looking forward to exposing myself to more noise as a therapeutic measure, but I hope you find that being active is a tolerable solution.
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Thank you for the comment. You are right about he similarities between these two aspects of hearing loss. I too have a sensitivity to sounds – in particularly loud and high-pitches noises. I had to train my brain to deal with everyday sounds after my hearing loss. It make sense that I would need to also retrain my brain to deal with my dizziness again after a vertigo attack. I hope you are able to begin to tolerate more sounds with time. Little by little I am sure things will become more bearable.
This reminds me of hearing aid specialists saying “wear them 24/7 if possible so your brain will get trained to help you hear differently. Well, guess what, it’s my ears that don’t work, not my brain. Then again, they’re trying to sell hearing aids, aren’t they?
I’m glad to read that you will stay active because the alternative doesn’t sound like much fun. Hopefully you will just adjust to whatever limitations this presents. You’ve done this before. Stay Carly strong!!
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Hi Al. Yeah, the hearing aid specialist said that to me too, when I trialed the CROS hearing aid…
I will stay strong Al!
I hope you and Patty are well.
So much advice and other people’s experiences to think about. I hope you manage to find something that really works for you dear Carly ❤
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Thank you Ralph ❤
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Hi everyone….I was told in balance therapy that I must do what makes me uncomfortable in order to overcome it. In order for my brain to be retrained. So when I am supposed to look left or right and I know it will make me dizzy I do it “fast” And reaching up and down I “look” up and down knowing full well that this will make me dizzy…but I must retrain my brain!!!. It does seem to be working. Waking up in the morning dizzy seems to resolve quicker than it used to. The noises are awful but I think I may do what Chalese said and just subject myself to those noises and get used to them. Its a rough life ya’ll but its all we have!!! Peace!!
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Hi Cathy. Thanks for reading and for the advice 🙂
It gives me hope that you are experiencing improvements in your feelings of dizziness, by doing actions that you find uncomfortable. I am continuing to go outside and walk around where there are lots of people – this makes me feel really dizzy…but will keep trying in the hope that I can retrain my brain. I will be consulting with an otoneurologist (balance specialist next week – I’ll let you know if they give any more advice.
I have found that I can tolerate many more sounds than when I first lost my hearing. It takes time and perseverance, but it is now possible for me to be able to sit in a cafe or restaurant and tolerate the noise level – this doesn’t mean I can always hear the waiter, or have a very good conversation with whoever I go with, but it’s a huge improvement! The more time I spend inside, the worse the ‘outside’ sounds seem – similar to my dizziness issues! I hope with time you will be able to get used to some of the sounds that are currently difficult, and in turn you will be able to enjoy more everyday things such as siting in a cafe.
Dear Carly, it is wonderful to read your blog. Many thanks for taking the time to share your experiences and valuable insights of living life with SSD. Roulla
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Hello Roulla, and thank you so much for reading 🙂 Do you also have single-sided-deafness? I am glad you found some interest in my experiences.
Take care, Carly
Hi! Thanks for reply! I am an audiologist with an interest in adult SSD and particularly hearing aid interventions for it – am involved in the CROSSSD study too, not sure if you’ve heard of it 🙂 here’s a link for more details: http://www.hearing.nihr.ac.uk/research/crosssd-study-core-rehabilitation-outcome-set-for-single-sided-deafness have a great week ahead!
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How wonderful that you are an audiologist! – I’m really happy that you found my blog of some interest 🙂 The survey sounds really interesting, especially for me since I have unilateral hearing. I tried the CROS device a year or so ago, yet didn’t find it helpful. Looking back on this experience, I’m not sure how well the device was fitted – I feel that the audiologist may not have been experienced in fitting this type of device. Anyway, I will be very interested in learning more about your trial, and the outcomes. It’s great that people like you are interested in improving the quality of life for people with single-sided-deafness. Please feel free to contact me if there is anything I can help you with. Best wishes,
I woke up in Feb. 2016 and did not hear my alarm clock that was going off. Thought that I had ear wax or something blocking my ear canals, both sides.
I went to an E, N, T who injected steroids directly into my ear canal, gave me a script for steroids also. Came back 2 weeks later, same amount of bilateral hearing loss, he said “There’s nothing else that I can do for you.”
So I saw more E, N, T’s, several Rheumatologists, many Neurologists, none could tell me by running some simple blood tests or an MRI what had happened and why I had lost my hearing in a matter of hours. In fact, they didn’t even dx me with anything except SSNHL, Bilateral. They thought might be Autoimmune, but really they didn’t know what other tests to run except for basic blood and an occasional MRI.
I have dizziness, light-headedness, vertigo, etc. but no tinnitus. I can’t get a single doctor to provide me with any diagnosis, just guessing and Oh, you lost your hearing. No referral to a Specialist.
Here’s the kicker. My Mother had the exact same thing happen. In fact, she also lost hearing in both ears. It happened over a few weeks. She got HA’s, then years later she woke up completely Deaf. She got a Cochlear Implant after lots of fighting with insurance co. She never got a true dx either. Right before she passed away at the age of 61, a dr. saw her and said it must be Cerebellar Ataxia. But by then it was too late to help her at all.
I am in Metro Detroit, Michigan. I have honestly not found a single competent dr. here, they all assume your are trying to get Opioids, even tho I am technically deaf. It has been almost 3 years of the merry-go-round of doctors, 3 or 4 tried to put me on Psychiatric Meds, others have put that in their notes, when I am not presenting any type of Mental Illness.
I was happy to find your page, sorry that this has happened to you and others.
I have 2 HA’s, my Audiologist just ran new hearing tests, apparently it came back as I have had a marked decline in hearing since waking up like this, probably resulting in me going completely deaf one day. The HA’s are better than nothing, but I say “What?” over and over and feel very bad about it. I perform better when I can see the person’s lips moving too. It is very scary and I wish that there were more medical professionals trained to deal with Sudden Hearing Loss, rather than treating what they don’t understand as a reason you need Psychiatric Medications.
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Thank you for reading my blog and for the comment. I can see many similarities in our stories, and also the stories of others who have commented on my blog.
It’s the frustration of not being given a diagnosis for the hearing loss isn’t it? Some of the specialists I consulted with were very honest and said that there just isn’t the research available on sudden hearing loss in order for them to help. The standard treatment is usually corticosteroids and sometimes anti-viral medication (in case the loss has been caused by a virus). Then blood tests are taken and an MRI performed to rule out acoustic neuroma. If the blood tests and scan results don’t show anything, then it seems like that is as much as the specialists can help. There are so many issues that can come with sudden hearing loss as well as the actual loss of hearing: balance issues, tinnitus, dizziness, vertigo, ear pressure, hyperacusis, and emotional factors that come with loss. I was offered no help with any of these things, yet these are the things I have to live with every day now. I am still dealing with the emotional issues that have come with this loss, and I think I always will be. I am lucky to have a supportive partner who, by even just listening and trying to understand what I’m going through, has (and continues to be) such a wonderful support.
How curious that your mum went through the same experience. I am obviously not a doctor, but surely this is something that the specialists should be following up. Have they checked if you have Cerebellar Ataxia?
I completely empathise with you having the feeling you may go Deaf one day, especially since it happened to your mum, and also I think this is a feeling that many of us have after losing our hearing so suddenly. I worry that it will happen in my right ear. I have no aidable hearing in my left ear, and I too worry I will wake up completely Deaf one day.
I hope you have some supportive people in your life, and that you may one day get some more answers. Take care
Carly your journey has a few similarities to mine. I though have been single sided hearing since it was discovered at age 7 that i was deaf in my left ear during a school hearing exam and confirmed by audiologists. Nothing was done.. I was deaf in one ear and that was that. I lived a normal life, was very involved in music.. I sang in choirs and bands. Other than not hearing in “stereo” as some would tell me, I managed just fine. Though I know I am sure I accidentally ignored people if they tried to talk to me on the left and I didn’t know they were there. So, I didn’t know anything different that being deaf in one ear. well…. At the age of 43 is when something went terribly wrong while on cruise with my husband and children celebrating our daughters high school graduation and 18th birthday. It was August 2007. I got very dizzy, full on vertigo and walked like I had been drinking too much, which I hadn’t mind you. I cruise often and never do I get sickness or dizzy spells! I stayed in my cabin, husband got me some mecklazine which helped but I stayed in all night never came out till the spinning and vomiting stopped the next morning. I did ok the remaining few days left and once we got off the ship and on our way home I told my husband I needed to go to the urgent care center or ER.. something was not right. Well, I get there and they begin doing these neck maneuvers to move the crystals in the labyrinth thinking that was the cause of the balance being off. Turned out my blood pressure was REALLY high.. never ever have I had high blood pressure! They sent me home and said to follow up with my Dr for my BP. So next day my balance is still off and out of no where I get this horrible ringing and I can’t hear or make out what anyone is saying!! I am deaf.. TOTALLY deaf!! Pressure like no other in my head and ear.. it was horrible! Talk about freaking out! Went to urgent care, no one really knew what to do for me! They gave me an injection of a steroid in the hip, referred me to an ENT. That took a few days to even get into to see one.. when I finally did he put me on a round of Prednisone with a taper, a that time the dosage was not what they do now for this emergency! Jumping forward a bit. After dealing with this guy for a few weeks and getting no where with any good results, I finally got into see my former Primary Care Dr who i should have never left! Well, she got on the ball.. got me into an MRI immediately…. got me into The House Ear Institute in Los Angeles with Dr. House. .. Mind you now it’s November.. I can hear a little better but certain sounds were just not right.. Audio testing confirmed I had lost a lot of high frequencies…had i been put on the right dosage of Prednisone and at the onset, I most likely would not have lost as much as I did. I also inherited the tinitus which I never had before. I was fitted with a great Oticon Hearing Aid and it really made my life bearable and i was able to carry on, enjoy music again. I was able to retrain my brain to ignore the ringing and locust sounds as I called them.. it never bothered me unless I thought about it. One thing in common with others I know who have this is we all have suffered horrible horrible sinus allergies! I still do! Fast forward now I am at age 52, the worse stress of my life, my father is dying of cancer.. I am taking care of him and we lose him after a 2 yr battle. I was devastated, it was incredibly hard for me though I had great support from my husband and children. I had a lot on my shoulders to follow his wishes as I was left his executor. 2 months after his death, I went into SSHL once again!!! Yup, BP was up, the emotional strained attacked my inner ear once again. .. so now I am 54… these past 2 yrs I have slowly slowly began losing more and more. I have a very good HA but without it, my world is silent. I am grateful that I have a team of great Dr’s and Dr House is the best we have out here. Whenever I get a bout of the hydros, its Prednisone to the rescue (nasty hate that stuff!!) but it helps. I took another dive this week after stress induced by a mammogram that was not good and had to have a biopsy 2 days ago. Yup my hearing is all muffled up again with the hearing aid! I patiently wait for the adjustment. It is our brain that actually “hears” and our ears are the instruments that funnel the sound to the brain, so my brain gets a lot of working out these days! I am also taking American Sign Language privately in my home as are my family and friends. I will one day end up getting the cochlear implant but for now I am fighting as hard as I can . i now have a 2 yr old Grandson and a 1 month old Granddaughter. They are my world and it’s hard as I want to hear every word they say to me. My Grandson knows a lot of signs from our daughter teaching him since he was a baby. I will be following your journey! Hard to find others who know how we feel and understand what we go through. I have not been diagnosed with the words Meniers, only Endolymphatic Cochlear Hydrops and Auto Immune Inner Ear Disease. I take tons of supplements I have researched and I wonder if that is what has given me 11 extra yrs of hearing. I go back to House Ear Inst. in a couple weeks. See what happens! Thank you for sharing your story Carly!
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Thank you so much for your comment. I read your story with great interest and also could empathize with a lot of what you have gone through during the years since your first experience of sudden hearing loss.
It really does seem like your sshl is triggered by times of stress. I look back on when I had my sshl, and realize that I was under quite a lot of stress also. It was the start of a new school year, and as a teacher this is a very busy time – getting the classroom ready, planning for the year ahead, meeting new parents etc, and all following a very relaxing summer holiday – it’s always a shock to the system. I didn’t stop the usual start of year preparations of my classroom and for the teaching year ahead after my sshl. I continued with things as ‘normal’ as I could, and didn’t see a doctor until a week later, who didn’t recognize my situation as an emergency. I was stressed at the time. I didn’t feel like I could even take an hour or so away from the school routine to consult with a doctor. Yet, I didn’t know that the hearing I had lost could possibly never come back. I didn’t know sshl is an emergency. Anyway, I really think that stress can have a huge impact on health, and your story really highlights that.
I can only imagine how scary it must have been for you when you lost all your hearing and became completely deaf in a moment. I found it interesting that you also experienced a lot of pressure and a ringing sound during your first experience of sshl. This sounds very much like what happened to me. People often comment about how they woke up with the hearing loss, and so they don’t know what happened during the exact time of their loss – the sensations and sounds.
I am glad to know that Prednisone has helped you regain some hearing during the past years – this is a positive. And although I know it’s a very unpleasant medication with some nasty side effects, if it can help you, then it is definitely worth taking. I was also happy to read that you are fitted with a good hearing aid, and that you can find enjoyment in music again 🙂
I am very sorry to read about your father’s death and the stress you went through during this time must have been enormous.
It is so positive that you are learning American Sign language, and that your family and friends are too – it really sounds like you have a strong support network, and I’m sure they help to make this all a little easier.
Thank you again Tammye for sharing your story, it really is good to connect with others who can empathize with what we’re going through. Best of wishes for your biopsy results, and for your consultation at the House Ear Institution. Enjoy your grandchildren, music and your wonderful supportive family and friends.
P.S. What supplements do you take? I take vitamin C, Ginko Biloba, a probiotic and Omega 3. I’ve also take magnesium in the past.