Warning signs?

Following my consultation in London, I took the vasodilators as instructed. These however, made me feel even more light-headed and weak. All my blood tests came back normal with no deficiencies and no evidence of an autoimmune disease.

There is relatively little information on the internet about Cochlear Hydrops; also known as Endolymphatic Hydrops, which is a secondary form of the more documented Meniere’s Disease. I was reading everything I could find about this condition, and was particularly interested in other people’s experiences of it. Often experiences were negative, and the occasional positive ones were stories of how people were noticing a reduction of pressure in their ears, or experiencing less attacks of vertigo (in relation to Meniere’s disease) by cutting out caffeine, alcohol and salt from their diets.

I decided to try eliminating alcohol and caffeine from my diet, and to eat as little salt as possible for a month. After the month I began to introduce things back into my diet to see if they had any effect on the pressure in my ears or the tinnitus. I realized that wine made my tinnitus more loud and lively. However, I was willing to deal with the occasional bout of enraged tinnitus, as I enjoy a glass of wine at the weekends, and especially with a nice meal. My boyfriend reminded me about getting the balance right. OK, I could cut out all these things from my diet, but it there were no real benefits, then why do it? Nobody had given me a definite diagnosis of the cause of my hearing loss or of the Hydrops; if it was in fact Hydrops that I had. Even though the specialist had diagnosed Hydrops, there is no actual test for it: it is a diagnosis based on my symptoms and history that was supported by the results of the electrocochleography (ECoG) test. If I did have Cochlear Hydrops, the specialist had told me that the cause was unknown. I was willing to try things to see if they helped, but I had to be mindful of making sure I wasn’t cutting things out of my diet just for the sake of it. My quality of life was also important. I enjoy coffee on a Sunday morning. I enjoy salty Marmite on toast at the weekend, and I enjoy a glass of wine with spaghetti and pizza. I was already miserable from my sudden hearing loss, why dampen my spirits any more?

As the days and weeks passed, following the ‘diagnosis’ of Cochlear Hydrops, I started to remember events in my life where I had experienced ‘attacks’ of dizziness and tinnitus and fullness in my ears; the main symptoms of this illness. These memories spilled steadily into my thoughts.

There was the memory of collapsing on a flight to Rome, nearly 8 years ago, when I was traveling there with my sister. I had felt a little dizzy and sick, and as I stood up to go to the toilet, my body felt heavy and my legs felt weak, and I fell down to the floor. A few minutes later I found myself sitting at the front of the plane fastened in tightly with a seat belt across both sides of my body; like a child’s car seat. I had vomited, and my sister was with me looking concerned. I felt fine a few hours later, and I put this down to tiredness and the fact that I sometimes have travel sickness. Maybe this had been a sign of Cochlear Hydrops?

There was a time about 10 years ago when I was in a greeting card shop in England. I was on my way out of the shop when my body suddenly started to become really hot. My eyes couldn’t focus and my ears felt stuffy, and I collapsed to the floor. After what I assumed was only a few seconds later, I was able to get up and walk out of the shop and go home. I had consulted my doctor at the time about this, and she had done some blood tests to check my iron levels, but the test results were normal. Maybe this had been a Hydrops attack?

There was even a time around 15 years ago I was walking to university, where I remember feeling overwhelmed by dizziness. My vision was blurring and my hearing became muffled. I fell into a parked car. Also at university, many times sitting in lectures I remember feeling dizzy. It was as though the floor was constantly moving upwards in a curve towards me.  I was having difficulties sleeping at the time, and spoke to my doctor about these things, and assumed these episodes were due to tiredness. Maybe they weren’t due to tiredness; maybe these were the early warning sign of Hydrops?

During the Christmas holidays, 6 years ago, I had 2 ‘attacks’ very close to each other: this was around the same time when my tinnitus (that lasted 3 years) first began. I was extremely stressed in my job and put everything down to stress. I actually thought I was having migraines. I was staying with my sister and her boyfriend, and I was about to make them a lasagna. I reached for a knife and a chopping board, and then all of a sudden everything started to spin and I felt like I was going to vomit. I had to go immediately to lie down. A week or so, just before or just after this attack (I can’t remember), I was staying at my parents’ house, when I experienced the most scary of all ‘attacks’.  I went to the kitchen to make some beans on toast for my sister. Again, I was standing at the kitchen worktop, when I sneezed. At the same time, I felt a twinge in my neck, and then the scariest sensation I have ever felt. I had an awful feeling of dizziness and sickness that came on immediately. My body felt heavy and numb and I felt like things were beyond my reach of control. I vomited and had to go to bed. I slept and slept. Were these Hydrops attacks?

More immediately, last winter, every time I went for a walk in the city, I would feel dizzy and tired and weak.

Was it possible that these were all signs of Cochlear Hydrops?

The specialist in London had said that, the fact that I had tinnitus for three years, was probably a sign of the presence of Cochlear Hydrops. Doctors and physiotherapists at the time had told me that it was a Pulsatile Tinnitus; probably due to an ongoing problem I have with my neck. In actuality, the tinnitus subsided suddenly one day when I had returned home from a run, and stretched my neck really far to the right (the opposite direction of ear with the tinnitus – my now deaf ear). Hence, a problem with my neck, being the cause of my tinnitus, seemed very plausible.

Maybe these were all warning signs? Maybe my body had been trying to warn me for years that I would finally experience the sudden hearing loss in my left ear? But maybe not. I still didn’t have any definite information regarding a cause of my hearing loss. I wanted to keep trying to find the reason for my hearing loss. For peace of mind, if there was something I could do to prevent any further damage happening, in order to protect my right ear – my only hearing ear – then I wanted to know what I needed to do.

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Author: myhearinglossstory

Hi, My name is Carly. I am 34 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 nearly 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. This year I experienced sudden sensorineural hearing loss in my left ear. I have 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.

25 thoughts on “Warning signs?”

  1. I have Meniere’s Disease. Those warning attacks sound like real attacks. I had them a long ways apart for many years. Diet change seem to help some. I don’t see a difference. But I still follow a low sodium diet, just in case. LOL
    I hope yours never gets worse.
    I have it in both ears now, and I’ve lost my hearing, but I now have cochlear implants. I hear differently but I can hear! Going deaf hasn’t been as tragic as I thought it would be.
    Good luck. Keep us up to date.

    Liked by 1 person

    1. Hello Wendy. Thank you for your comment. I am sorry to hear about your Meniere’s Disease resulting in your deafness. Though you seem extremely positive and strong in coping with it all. Yes, I realized that I eat a low salt diet anyway, apart from if i go out for food and can’t control the amount of salt – so I’ve decided not to worry too much about this. Meniere’s and Cochlear Hydrops just all seems so unknown and unpredictable. If you don’t mind me asking some questions (feel free not to answer them if they’re too personal): – How long was it between your attacks? How long were you aware that you had Meniere’s Disease before losing some hearing? Was the hearing loss gradual? …I have so many questions!….I have been told there is a cause for my Hydrops that is unknown…I’m hoping one day I will find out why i lost my hearing. Anyway, thank you and take care. Carly

      Liked by 1 person

      1. Hi Carly, let’s see. How long between attacks…this varies. Sometimes not for a month, sometimes everyday for a while. My attacks vary in degrees, some are just slight spins and I just stare at captions on the TV, seems to help. I often feel like I’m moving.
        Question 2 How long before losing some hearing? I lost my hearing in my right ear very gradually, I didn’t notice the progression as much, just knew it was going down. Then it went to my left ear, and both ears went crazy. I was deaf within 3 months of that. That was a rough time. So many attacks, and going deaf. I got through it and think I’m stronger now.
        I think I answered number 3 with number 2.
        Questions, ask away. You can email me through the Contact form on my About page.
        They don’t know what causes this, they think there are different causes.
        I think if they could find the cause they could treat it better.
        Someday.
        wendy

        Liked by 1 person

      2. Hello Wendy. Thank you for answering my questions. It is good to connect with someone who has experienced similar situations to me. I too, often feel like things are moving, when they’re not. Yes, i will contact you on your ‘About page’ if i have more questions – I’m sure i will! Take care. Carly

        Liked by 1 person

      1. I suddenly lost all my hearing in my left ear, nearly 7 months ago. Since then, I had lots of hearing tests, mri scan, steroid treatment (injections in ear and pills), balance tests etc etc…then I finally had an ECoG of my right ear (my hearing ear). This showed evidence of mild inner ear endolympathic hydrops. From this, the specialist said it was extremely likely that I have hydrops in my left ear also, and that this is what had caused my hearing loss…

        Liked by 1 person

      2. Hello again 🙂 i have secondary endolymphatic hydrops…I really think they still haven’t made their minds up though cos another specialist didn’t agree with this diagnosis! Yeah, more tests !! I’ll be happy when the testing has ended!

        Liked by 1 person

  2. Have you had a MRI of your brain? I had vertical, bad one twice in my life. Went to the ENT doctor. The MRI shows the my small brain is in irregular shape that threw me off the balance.
    From your journal of the past, it seems like something in your brain caused the dizziness and other things to happen. I wonder your sudden hearing loss might also be caused by something, some pressure close to the hearing system.
    I know know how extensive exam of your brain it takes to find out everything is in its right place, normal rate of growth.
    I do feel for you. It makes me tinnitus nothing compare to what you’re going through.
    My ringing is not coming through my ear canal right now. I can actually hear silence in both ears. Hooray!! My ringing in somewhere in my brain close to my left ear. I had ringing coming out of my left ear for 30 years. It seems to shift ever since my right ear started ringing. Well, it’s different everyday.
    I do think that you need to look at you brain.

    Liked by 1 person

    1. Hello. Thank you for your comment. Yes I already had the MRI scan and everything was normal. It is all a mystery as to why this happened. I have never heard of a condition like yours. i hope you are feeling well and can embrace the non-tinnitus days!!! – I’d love to be able to ‘hear’ silence again! Take care. Carly

      Liked by 1 person

  3. I have hearing loss, bouts of vertigo and dreaded tinnitus, it’s so unpredictable and hard to treat I’ve tried so many different things for the tinnitus, with no avail, but if I’m having vertigo I wear acupressure bracelets which help I think! I have had the same feeling on the plane too.. and like u ended in the front chatting with the hostesses 😊

    Liked by 1 person

    1. Hello Victorine. Thank you for the comment. Ugh, I have tinnitus too, that never stops…I am glad that you have found something that seems to be helping you with the vertigo. Wow – you also ended up at the front of the plane! – I wonder how many other people this has happened to! Take care. Carly

      Liked by 1 person

    1. Oh beta blockers?! I don’t think there is a cure for tinnitus…But everything is worth trying. I recently was put on diuretics to help my condition and had an awful time on them. Please let me know how you get on with the beta blockers. There are tinnitus maskers that are like hearing aids that play white noise into your ear that helps your brain stop focusing on the tinnitus noises – has this been mentioned to you? It won’t work for me cos i can’t hear in my ear that has the tinnitus, but might help you? Take care and hope things start to become more bearable for you. Carly

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