And…The Results Are in

It was results day. I was sitting on a hard plastic chair in the health centre waiting-area, muddling through the Spanish sentences in my head that I wanted to make sure I remembered to say to the specialist. There was an echoey buzz of noise from the conversation of other patients and the rattle of metal trolleys; full of medical folders, being transported to the consultation rooms. I tried to focus on breathing deeply to calm myself. Waiting rooms, the act of waiting, speaking in Spanish about health topics, and the worry of not understanding or hearing the specialist, are all things that make me feel nervous. 

After a short time, I was greeted with a “hello” by a doctor who I immediately recognized from a previous appointment. I smiled and replied “hello”, instantly feeling much of the tension in my body melt away at the realization that we would be communicating in English.

She asked me how I was doing and I told her that I was OK, although I still felt dizzy every day. I explained how I believed that the dizziness was influenced by many things –  crowds of people, tiredness, loud noises, salty foods, changes in weather etc. She said that all these things can cause dizziness, though doctors are not always quite sure of the reasons. Next, she asked me whether I’d had any more vertigo attacks since the last time I had consulted with her, and I answered, telling her I hadn’t.

She then looked at the results of my vestibular tests. “This is good,” she said. She told me that the results showed that my ear was working well to keep me balanced.  I asked her if she meant my right (hearing) ear. She replied with regard to both my ears, saying that my balance system was working to a satisfactory degree. She explained that she was reading some numerical results and that the graphical representations of these results were not currently available – there had been a problem with the printer part of the test-machine when I had taken the test. She said she would need to see the graphs in order to have more understanding of how my vestibular system was functioning. She had a surprisingly positive tone to her voice; something I wasn’t accustomed to hearing in a consultation room.

She conjected that perhaps the diagnoses of endolymphatic hydrops or Meniere’s disease were incorrect, and suggested an alternative reason for my dizziness and unsteadiness being vestibular migraines. I paused for a moment to consider this. I had witnessed my mum experiencing symptoms of traditional migraines for most of her life; something which still continues to affect her almost daily. I wasn’t however, particularly informed about migraine due to inner ear disorders. During these few seconds of contemplation, the specialist had already started to question her new hypothesized diagnosis. She said that although the test results noted a good result, it was probably more likely that I have endolymphatic hydrops or the early stages of Meniere’s disease. She backed this theory up with the evidence that I have pressure in my ear and the fact that consuming salty food also makes me noticeably dizzier and exacerbates the feeling of ear pressure. I had become accustomed to this kind of fluctuation of opinion concerning my diagnosis. Inner ear vestibular disorders are difficult to diagnose, and I was aware that my symptoms could be associated with more than one condition. She said that regardless of the diagnosis, she was happy because the results were good and showed that my brain and ears were working together to keep me balanced.

She then asked me about my experience with vestibular rehabilitation. I told her that I hadn’t noticed a difference in my everyday life, as I still felt dizzy in many situations. She responded unexpectedly by telling me that I had made a lot of improvement during the sessions and that I had almost doubled my test scores, following the treatment. I was happy about this as I had worked hard, and I secretly congratulated myself on my efforts. It seemed that although I was managing my balance more successfully, this didn’t equate to feeling more stable. I was still regularly feeling off-balance and dizzy, yet this was part of my condition. The therapy couldn’t cure these factors, it could only help me manage them more effectively.

I would consult again with the specialist in a couple of months. She reminded me to go immediately to the emergency department of the hospital, should I have any issues, however small, regarding my ears. She also told me to make sure I get plenty of rest, continue to drink lots of water, and keep my salt intake to a minimum. She wrote down the phone number of her receptionists and told me that I could phone them and ask to see her if I ever had any issues with my ears.

I left feeling comforted by the quality of care I had received, and confident that I was doing the best I could to support myself with this condition, whatever it may be.

Author: myhearinglossstory

Hi, My name is Carly. I am 37 years old and I am currently living in Spain. I am originally from a small seaside town in Yorkshire called Bridlington, and have also lived in China and Thailand. I am an Early Years primary school teacher, and have been teaching for more than 12 years. I love walking in the countryside, getting lost in Madrid, going out for breakfast, taking photos, listening to music, storytelling podcasts, baking, running, drinking wine, and eating spicy food. In August 2016, I experienced sudden sensorineural hearing loss in my left ear. I started this blog as a way to inform my friends and family about my progress, for anyone else who is going through a similar experience as me, or for anybody who is interested in learning about this type of hearing loss, and the way it can affect everyday life.

16 thoughts on “And…The Results Are in”

  1. I hope life is treating you well and improving little by little. As for me, I have been profoundly deaf in my right ear and moderately in my left. I wish you well.

    Liked by 1 person

  2. Well that sounds really quite positive Carly. Although it doesn’t solve all your problems it is comforting to know that your efforts are paying off. Well done and keep up the good work. xx

    Liked by 1 person

    1. Hello Tricia,
      Yes, it’s good to know there was some kind of improvement following the therapy. I think being generally active helps keep my balance system working as best as it can too 🙂
      Looking forward to seeing you soon! xx

      Like

  3. Well, at least it’s nice to know what it is not, dear Carly ! Oh dear, theories abound ! I really do hope that you do not have to go through more lengthy tests and they quickly find a solution. We are thinking of you my friend 🙂 ❤

    Liked by 1 person

  4. I read both of your links, Carly. Thanks for providing them. This sure looks like a tricky, tricky situation to get any kind of consensus about. I’ve not read much from you about any possible surgical solutions, so I’m assuming they are not encouraging about that route. The fact that you are doing well in management of this and doubling your scores speaks volumes about your fortitude. As Ralph said, all of us that follow you keep you in our thoughts, so thank you so much for being able to share this frustrating journey.

    Our granddaughter Katie begins to live with us for the summer in just a few weeks. I’ll be in touch to see if maybe we can Skype with you sometime so you will have “met” her before she comes your way. She’s getting pretty excited now.

    As always, keep the faith.
    Al

    Liked by 1 person

    1. Hi there Al,

      Thanks for the comment. It really is a difficult situation for the specialists, as there doesn’t seem to be enough research on conditions like mine to be able to diagnose a definite condition or cause. They haven’t mentioned any ear operations, although I am aware of one where they can operate on the endolymph in the inner ear (where the issue with the liquid is). However, I think this is really a last resort, and there doesn’t seem to be much information about this available online.

      I am sure you are looking forward to having your granddaughter come to stay with you. Yes, please let me know if you would like to Skype, and we can arrange something 🙂

      Best of wishes
      Carly

      Liked by 1 person

  5. Wow Carly, this reads like the doctors are feeling positive but is it enough to have you feeling positive? I can imagine that perhaps it does in a small way……but I could also imagine myself feeling quite despondent that the tests hadn’t lead to some sort of process being identified that would ease the dizziness. Thinking of you. Vera.

    Liked by 1 person

    1. Hello there Vera,
      How are you?
      Thank you for your comment. It was nice to be told something positive. But, you are right, there isn’t any kind of follow-up procedure that can help with the actual issue. I think the reason my balance system is working ok, is mainly because I am quite active. i make myself go out everyday and walk, even when I am feeling really dizzy. If I miss a day, i really notice it.
      Anyway, it was still something positive…finally 🙂
      Best wishes
      Carly

      Like

  6. This was so nice to read.
    I’m so proud of you and your VRT scores! I wish you felt it more. It was night and day for me.
    However, I do wish doctors would just say we know your vestibular system isn’t functioning properly, we don’t know why, here’s what we know about vestibular disfunction.
    I feel like they feel like they have to put a diagnosis on something. You have some of the symptoms for Meniere’s, but sudden hearing loss is not a symptom, and isn’t the pressure you feel pretty intense all the time? Everyone I know with Meniere’s has fluctuating feelings of pressure increasing during a vertigo attack.
    You don’t need a label, as long as they keep treating you right.
    Lots of love xoxo wendy

    Liked by 1 person

    1. Hi Wendy!
      What a lovely comment – thank you 🙂
      Yes, I was proud of myself too! It is hard work doing all the exercises, isn’t it!
      Yes, it would be nice for the specialists to just admit they don’t really know what’s going on. I know that’s the case.
      You are right. I have some symptoms of Meniere’s, some of endolymphatic hydrops (cochlear hydrops) and some from vestibular migraines. Oh yes, and the sudden hearing loss! I don’t need a diagnosis as such, just help with managing the symptoms.
      Yes, the pressure is there all the time and seems to get worse with many things – salt, weather changes, tiredness, noise – and basically after eating anything! It’s like i have the feeling that you get before vertigo attacks, but it all the time.
      Thank you as always for your comment Wendy.
      it’s nice to connect with someone else who has some understanding about how all this feels.
      Lots of love ❤

      Liked by 1 person

      1. Oh my, I should not have said you don’t need a diagnosis, or insinuate you don’t have something. I was speaking for myself and putting my feelings on you, (I’m diagnosed with both Meniere’s (endolymphatic hydrops) and vestibular migraines, I do hit the classic symptoms for Meniere’s, but now the migraines are much worse and I feel like I’m flying blind) I’m sorry.
        Yes, the exercises are hard! You are a champ!
        I can’t imagine having that intense pressure ALL the time! I’m so sorry. Weather changes can still do it to me. Odd thing, salt never has bothered me, but I still don’t consume a lot.
        You are a dear.
        Lots of love 💕

        Liked by 1 person

      2. Hello again Wendy,
        No need to apologise. I don’t really need a diagnosis. I just would like the specialists to be able to offer me more information about how to deal with my symptoms. I am unable to take any of the medication they have suggested, and it seems that apart from cutting down on salt (of which I have never eaten much of) there seems to be very few other recommendations of things to try.
        Lots of love ❤

        Like

  7. Carly, I was just reading a book called Healing Your Headache and it made me think that maybe sudden hearing loss can be caused by migraine, so I did some more looking and found this https://jamanetwork.com/journals/jamaneurology/fullarticle/777903
    I thought you might find it interesting. This man had migraines for a long time before the sudden hearing loss, I don’t know if you did, but I don’t know if that would matter. I never thought that vestibular migraine could cause hearing loss.
    I also read a study looking at the relation between Meniere’s and Vestibular Migraines and it wasn’t conclusive, but they were saying Meniere’s could be migraine related. I don’t see that, since you can see Meniere’s in the temporal bones after someone dies, if it’s migraine then there is no evidence there (like it mentions in the article I sent you above) But I do wonder how often the two are misdiagnosed, one for the other. I was diagnosed with both. I do think I have both since my hearing loss was fluctuating and my vertigo got much better over the years, now it’s not as severe or as often, the vertigo I have now is different (not as at severe, often triggered by certain movements) and always coincides with pain; but I know that’s not always the case with all people with vestibular migraines. I do still have a Meniere’s vertigo attacks, but I know the difference, I have warning signs for those attacks, my hearing gets weird (even with the CI’s), my tinnitus goes crazy, I get really hot, and feel I need to go to the bathroom bad.
    Anyway, I just wanted to send you that article, I didn’t mean to give you my life’s story. I’m just trying to figure out why my vestibular migraines have increased so much lately. I think I’m going to try the Heal Your Headache program. It’s mostly a diet. I found out about it on a blog thedizzycook.com

    I hope you are recovering well from your surgery and you can breathe through your new nose!
    thinking of you
    lots of love from the Wild West…hahaha
    Wendy xo

    Liked by 1 person

    1. Hi there Wendy
      Thank you so much for your message. I read the link and found it very interesting.

      The fact that the man’s single-sided deafness was related to ischemia, (an inadequate blood supply) is interesting because I have poor circulation, and thought this could be a factor of my hearing loss (maybe associated with my neck problems)

      I had some drop attacks in the 10 years before my hearing loss – some of these were accompanied by migraine symptoms, and I mistook the attacks for migraine. I only had about 5 of these in the 10 years, but looking back, I realise these were probably warning signs of a more serious problem. Also, since my mum has been affected severely by migraine for most of her life (she has a migraine every few days) I also wonder whether my ear problems could be genetic. If there is a connection between migraine and sudden hearing loss, this seems to be a plausible suggestion.

      Thank you for sending this information – I often feel like a detective when looking into explanations for my sudden hearing loss!

      I hope you can figure out why your vestibular migraines have increased and that you find help in the Heal Your Headache program.

      My nose is still very swollen and is taking time. The left side isn’t really working at the moment, but I’m hoping it’s due to swelling.

      Lots of love from Spain
      Carly ❤

      Liked by 1 person

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