About

Hi I’m CandiceMe in 2014. In February 2015 I became very sick with severe vertigo, tinnitus and hearing loss. At first we all thought it was Labyrinthitus – an infection of the inner ear, but over the weeks and months to follow I lost more of my hearing and my balance and vision didn’t improve.

As a result, I’m now severe/profoundly deaf in both ears and my balance (vestibular) system has been obliterated. I have tinnitus permanently, and oscillopsia (loss of image stabilisation). The UK medical establishment don’t know what causes this to happen so have labelled is as an autoimmune condition but I now know differently…this condition is caused by the Epstein Barr Virus (EBV) in the labyrinth of the ear.

I am fully dedicated to healing myself as naturally as possible and adapting to the changes this illness has created in my life. I write this blog to share my journey in the hope that it will be a support to anyone else who is also suffering with similar conditions of the inner ear or trying to detoxify themselves from the havoc caused by EBV.

I believe in the body’s innate healing abilities and fully embrace natural approaches to healthcare using naturopathic techniques, diet, herbs and supplements. I’ve had training in Naturopathic Nutrition and other therapies but any information provided on this blog is just me sharing my chosen approach and is not intended as a substitute for proper medical advice.

Please write to me privately or comment on my posts if you have any questions, need advice, would like me to write about certain aspects or also if you can offer advice to help me recover. I love hearing from you, to know that this blog is useful to someone, and also that I’m not alone in my difficulties with these symptoms. I hold a silent prayer in my heart for anyone else who is suffering with this. I wish you a swift recovery, with your healing and balance fully healed! Please write to me and let me know when that you got better, to inspire me and motivate me onwards in my healing journey x

44 Comments

  1. moni
    May 20, 2015 @ 8:01 am

    Nice one for setting up this blog and good luck on your journey…
    Love and light to everyone suffering x

    Reply

  2. Linda Rodriguez
    May 24, 2015 @ 3:28 am

    Best of luck

    Reply

  3. Teresa Morgan
    May 24, 2015 @ 10:30 am

    Good luch Candice. I fully understand, the struggles of SSHL. I’m into month 6. Take care xx

    Reply

  4. patricia
    May 24, 2015 @ 3:14 pm

    Hi Candice, Thanks for sharing I watched the video wow most be difficult I will keep you in my prayers I am so proud of how you are reaching out and setting support. The tribes loves you and hope we can see you in July! Love P

    Reply

  5. Jacqui
    May 26, 2015 @ 9:24 am

    Hi Candice

    I had vestibular neuritis at Christmas (basically labyrinthitis without hearing loss although I do get a bit of high pitched tinnitus).

    Despite taking no meds initially like you, I have not fully compensated and still feel dizzy / woozy most days although my balance isn’t too bad thankfully. I’ve been doing VRT now for just over 2 weeks and I’m really hoping this is making a difference! Realistically though I have to be mentally prepared for a long journey!

    Anyway, I just wanted to say that I totally understand what you’re going through – this is a horrible condition and it’s so hard to remain positive.

    As I live fairly close to Watford (you mention going to Watford General) if you’d like to get in touch please do so. If you’re like me, support and understanding is what keeps me going as I progress on this unwelcome journey!

    Take care!

    Reply

    • Candice
      May 26, 2015 @ 2:12 pm

      Hi Jacqui, Thankyou for being in touch. You live very close to me and it would be great to speak or meet and support each other though this. That would be great! My vrt starts next week and I’m also hopeful this will help. Please drop me a private email so we can talk privately. Much love, Candice

      Reply

  6. Cynthia Ryan
    June 15, 2015 @ 4:27 pm

    Hi Candice,

    Thanks for sharing your story and raising awareness about labyrinthitis, tinnitus, and the myriad of other symptoms people with vestibular disorder suffer from. I will share a link to your blog on the Vestibular Disorders Association’s Facebook page: https://www.facebook.com/vestibulardisorders.

    Best, Cynthia

    Reply

  7. longandwindingroad
    June 21, 2015 @ 10:28 pm

    I have come out the other side of my experience. I remember, after the acute phase, wishing for just one normal day again to truly appreciate being able to walk on level ground. I am grateful that I have mostly normal days now 1.5 yrs later. I’m not sure why or how it happened or why or how I got better. I am wishing you some normal days ahead, too–because it it entirely abnormal to feel as we do when this happens. Don’t give up until you feel better. Listen to and believe your instincts. Be strong and focused because no matter, with or without a partner, the work is on us. In that we are all the same.

    Reply

    • kim gaudet
      June 4, 2016 @ 12:36 am

      What you said is soooo true

      Reply

  8. Eddy harris
    June 26, 2015 @ 9:17 pm

    Hi Candice.
    You mentioned that you where trying to heal yourself, but with such a profound hearing loss I don’t understand why you are not trying earing aids or are these not suitable for your condition?, I would agree with you that sharing your experiences on line will hopefully help in your recovery. I wish you all the best .
    Fate is a strange thing.

    Chiped

    Reply

    • Candice
      June 26, 2015 @ 9:51 pm

      Hi Eddy, Yes I am wearing hearing aids in both ears. First Phonak and now Widex.

      Reply

  9. Sasha
    July 5, 2015 @ 11:48 am

    Hi Candice, thank you for the essential oil recommendation- I tried it yesterday and found it very soothing. I just wanted to mention that I discovered another blogger today and think you may be interested. She’s known as Diane, and her blog is called Sweet Catastrophe. She actually has a diagnosis of Menieres, but it too makes for some inspirational reading.
    Sasha x

    Reply

    • Candice
      July 5, 2015 @ 6:20 pm

      Thanks Sasha I’ll check her out

      Reply

  10. Bernice Holland
    July 30, 2015 @ 10:45 pm

    Hi Candice, thanks for sharing your story. I’m glad to know I’m not alone in this. I wish you much success in what you’re doing. Take care. Bernice xx

    Reply

  11. Robyn Carter
    August 21, 2015 @ 8:53 am

    Hi Candice,

    Oscillopsia is horrible but you can live with it. Don’t let it rule your life. Go to the gym, walk, make your leg muscles strong. Eventually your muscles and eyes will take over. You will always have down days but it does improve. I can do anything except ride a horse or ski these days. I’ve even ridden a bike – in the dark!

    Anyway – my doctor told me use it or lose it – and I’ve taken his advice. I carry a Leki stick in my car in case I get caught out in the dark or on uneven ground.

    So – my only advice is don’t let it rule you.

    I’m in New Zealand, but will be over in Netherlands next year – and I’d love to meet you so keep emailing me 😉

    Cheers
    Robyn Carter
    New Zealand.

    Reply

    • Candice Luper
      August 25, 2015 @ 12:18 am

      Hey Robyn, Thanks for your message. I so hope it does get better. It gives me, and everyone else I’m sure, a lot of hope to hear that others have gone on to live rich and active lives.. (though there is always a part of me that thinks this only happens for those who have some vestibular function left). Oh wow you rode a bike! what an achievement! and urgh I cant imagine riding a horse – sitting in a car and going over tiny little bumps is enough motion for me! 🙂 yes do keep in touch Robyn thanks for posting here!

      Reply

    • Steph
      September 9, 2015 @ 5:35 pm

      Wow!!! I have oscillopsia. Had it for 2 yrs or so now. Cant brlieve u can ride bike in dark. Id be jiggling all over place. How did u manage this. Amazing!!! Whats ur technique? I do lots dog walking which helps. But cant deal with crowds and loud noises really affects it for some reason. Plus being in car everything bounces. Arghh! I get soooooo tired but need to keep trying things to proove it wont beat me. Ur story encouraging. Xx

      Reply

      • Candice Luper
        September 10, 2015 @ 11:30 am

        I certainly can’t ride a bike and just walking in the dark is difficult! We are going through the same thing Steph. It sucks!

        Reply

  12. Dean
    September 1, 2015 @ 10:26 pm

    Jesus! Spooky to see you in here! I was researching about possible conditions I may have for symptoms I have affecting my balance, which I did think was a mental issue, due to ongoing anxiety problems.
    Anyway I don’t know if you’ll remember me but years ago we worked together, at Barnet, I worked on the print dept then
    So sorry to read your story, and thinking about you through these tough times, natural is the best way – I’m currently doing meditation wellbeing to try help myself

    Reply

    • Candice Luper
      September 1, 2015 @ 11:24 pm

      Off course I remember you Dean 🙂 feel free to get n touch via email x

      Reply

  13. Steph
    September 9, 2015 @ 5:26 pm

    Hey candice
    I was shown your blog by someone on veda fb page which i just joined. Really thought i was alone. Also there is not much help here where i live. Just wanted to say i suffer from bilateral hypofunction of labarinth and oscillopsia also
    Its horrible isnt?? I have good and bad days. Was diagnosed2 yrs ago but given no advice and no cure just told to carry on. Recently i thought no i cant live like this forever with this intensity do changed docs and hopefully being refered to balance centre in medway where i hope yo get 2nd opinion and help with this. Hope u are well. Does any change in your diet help? Can you lessen affect of the ocillopsia and have u still been able to drive. Love to hear from you.
    Hugs.
    Steph. Xx

    Reply

    • Candice Luper
      September 10, 2015 @ 11:34 am

      It’s really horrible, my sympathise go out to you that you have to experience this to. I’m not finding any improvement with anything but we have to keep searching and trying. Lets just pray that they find some solutions soon. I hope you get the support you need. You need to be doing VRT – please look for the information on my blog. Go private if the health system don’t refer you. It does help the brain adapt to the balance. I can walk now and turn my head to the side without falling over. I haven’t been able to lessen the oscillopsia yet. If I could drive, my life would be very much improved. Feel free to email if you want x

      Reply

  14. steph
    September 10, 2015 @ 11:58 am

    Hey again.
    Yeh im the same with driving i have had lessons and took test but failed. It took a lot of concentration and was so tired after due to the bobbing up and down but i could drive. The thing thats bad is after a long day i become so tired and this makes oscillopsia worse so drving would be a bit of a risk as feel drunk. Hopefully one day a cure or something to stabalise it wud be amazing. I want to get back in a car but im sure the oscillopsia has got worse . I try and force myself to look ahead when walking rather than looking to ground to try and train my brain to see things steady but it hurts my eyes and the bouncing gets bad. But looking to the ground and ocassionaly up helps me to walk straight and stops more of the bouncing. I try and joke about it as much as i can. But when having a bad day get a bit low. I just feel pressure in my whole head. Im not gonna let it rule me too much though. It does limit certain things like i find going out at night very hard and wud avoid it as i feel woozy. But il keep trying. Hope your ok.
    Hugs. Xxx

    Reply

  15. Ivona
    January 27, 2016 @ 12:09 am

    How’s ur progress with the 28 day cleanse

    Reply

    • Candice Luper
      January 27, 2016 @ 12:35 am

      Hi Ivona, I’ve not been able to do the 28 day cleanse yet…it feels too difficult right now to eat only raw fruit and veg so I am instead doing – raw most of the day and then I have a semi-cooked evening meal about 70% raw. I’m eating nuts and legumes also, avoiding the no-no list foods and once or twice a week eating out as normal (i.e. vegetarian curry). I hope to have a session with one of the AW recommended advisors soon for more advice on whether this approach is okay for me. Are you doing the full cleanse?

      Reply

  16. Charm
    May 26, 2016 @ 4:30 am

    Hi, I’ve perused your blog a bit after finding your post on your old wordpress blog referencing helichrysum for hearing loss. I am experiencing progressive hearing loss following a respiratory infection and I’m exploring natural options while I wait for medical opinions on my situation, so I appreciated all of the information you compiled about helichrysum.

    I read through some of your posts – what a tremendously difficult ordeal you have been through! I was wondering if a cochlear implant has been considered in your case, or if it is even an option for you. Is this something you’ve explored, or are hearing aids still working for you? Wishing you all the best ~

    Reply

    • Candice Luper
      May 26, 2016 @ 8:00 pm

      Thanks for your message Charm. For now I have enough hearing to enable hearing aids to work so they wouldn’t consider me for cochlear implants. I have been thinking about it though as my hearing is still deteriorating, in one ear especially. The people who I have spoken to with cochlear implants have nothing but positive feedback and in some cases they seem to be able to hear better than us with hearing aids! So for me this is reassuring that their is a backup plan and that I will never have to consider the possibility of being completely deaf.
      Please read my earliest posts as it is important, if your hearing loss is recent, that you push for steroids urgently. There is no guarantee, but at least you will have tried them. If you are in the UK, it can take so long to get them that you miss your window of opportunity. My fingers and toes are crossed for you x

      Reply

  17. kim gaudet
    June 4, 2016 @ 12:01 am

    I had surgery. In Feb 2012. 1 month after my Mom died. It has been a brutal battle @ times bit I feel I have made some progress. Because at a few points I did not want to go on. …. I thought my life was over. …. But each day I gain. ( & not all days are —– good by any means. — I am slowly coming to grips with this new reality for me. & if not for an extremely loving & supportive partner. Probably would not have made it this far. … I have about 30% loss in hearing loss in my right ear. …… Eardrum removed. Titanium implant in there. — tinnitus. Too.

    Reply

    • Candice Luper
      August 4, 2016 @ 11:38 pm

      Its so important to have support Kim. I hear from a lot of women who’s partners have really been a great blessing in helping them overcome the difficulties. Its a very tough road I know, but gradually I guess we will adjust x

      Reply

  18. Kay OConnell
    August 4, 2016 @ 12:08 pm

    Candice – my thoughts & prayers to you. As a result of a severe cholesteatoma , 2 leaks in my vestibular system & mastoidectomy with wall down I have total hearing loss on the left & balance issues . Surgery was in March ! I’m back to work 32 hrs/ wk & I can drive now. VRT really helped & I still need to do the exercises. What I finally learned & need to accept is that FATIGUE makes dizziness & imbalance
    worse. I have so many good days ( it never goes away but I can cope with it) but the bad days are discouraging . Dealing with the loss of hearing makes me sad- loved to plug in my ear buds to listen to my fav tunes – no more stereo now. I still sway to the right which makes me look drunk ! Oh and the wind pushes me around ! I loved finding your blog and wish you the best . I need to get back to the gym & try to kayak again . I needed to hear USE IT or LOSE IT… Thank you so much
    Kay O

    Reply

    • Candice Luper
      August 4, 2016 @ 11:35 pm

      Hi Kay! Yes its really important to keep up the VRT but hard when you’re exhausted. I haven’t been doing mine and get lazier and lazier with the brain fatigue of having to manage hearing, visual and balance issues all day. Sounds like you are doing so well, keep going. You are right that exercise is the best remedy to retrain the brain. Oh I know that horrid drunk stagger…so embarrassing and humiliating, but I figure most people are not even noticing anything outside themselves. Sometimes I’ve literally shifted off the pavement onto the road, or tripped over my feet like the floor is moving, and when I look around not one person has noticed. Kayak!? wow I wish you luck. I cant see I would ever be able to do that now. I tried swimming and it really didn’t work out too well! I have gone from mermaid to drowning dog in the water 🙁 fingers crossed I’ll figure out new ways to do things.
      Thanks so much for your positive feedback. If you fancy writing about your story please let me know x

      Reply

      • Kay OConnell
        February 14, 2017 @ 1:31 pm

        Candice ! Thx for the comments.
        I took a class called “Matter of Balance ” & now taking Tai Chi.
        Tai Chi is making a difference ! Not sure if it’s because my legs are getting stronger or the extreme focus required to do each movement. It is making me slow down & I notice that I do everything too fast ! It has been 1 year since I went to the hospital and all things considered doing well. Good days vs bad days & being so sensitive to “everything”.
        Being completely deaf in my left ear makes what I hear on the right super loud sometimes.
        I really do not care if other people care or understand what I’m going through because I’m so busy keeping myself “steady” and working on my short term memory. Nice chatting with you again & I will keep you in my prayers ! In the meantime I’ll keep
        moving ! Happy ?valentines Day
        Kay Oconnell

        Reply

  19. Michael Cox
    August 22, 2016 @ 4:15 pm

    Hello Candice,

    They say misery loves company so I am glad to have found you. I am not looking for sympathy just a place to share and learn something new and perhaps provide help to others. You sound positive. That is the only way to be. Emotions are so contagious, good or bad. I prefer good.

    My name is Mike and I live in Las Vegas. Adenoid Cystic Carcinoma appeared in my right ear in 2002. Several surgeries and some radiation later left me vulnerable so when I was rear ended in my truck it shook my head up and caused me to have Oscillopsia. I have had Oscillopsia going on four years now. Some observations. If I stare (gaze fixation) at an object while walking and turn my head slightly without moving my eyes it immediately causes me to lose my balance. It appears like I am drunk, staggering. Blinking rapidly ensures my eyes don’t stay locked on any object, it helps. The equilibrium is no longer working to keep me in balance. My eyes or vision is used to keep me in balance. With my eyes closed there is no reference to know where I am in space and will go off balance and may fall. In 2013 the cancer appeared again and this time the doctors completely removed my right ear, inner and outer. At least now people look at me and can see a reason for my disability.

    Place a phone recording video against your forehead. Now walk normally. When the video is played back you will see the world the way I do. Driving is out of the question. Any bump causes my vision to jump and when I turn my head from the left side mirror to the right side mirror I completely lose objects in my field of vision. At times when the road is really bumpy or going over a speed bump, I need to completely close my eyes.

    Stay strong.

    Mike

    Reply

    • Candice Luper
      August 22, 2016 @ 11:33 pm

      Hi Mike, I’m glad you’ve found me to. In a sick way I appreciate knowing I’m not alone in this. Have you seen this post?. Although I am more used to it now, the oscillopsia hasn’t gone away. I’m able to drive but like you it takes a great deal of concentration to keep my eyes on the road. But please try not to close your eyes while driving! we need to keep our arms and legs or else we’ll be really buggered!

      Reply

  20. Carolyn
    November 14, 2016 @ 2:19 pm

    Hi Candice

    I share your pain. Your symptoms sound identical to mine, only I have sshl in one ear, and tinnitus in the other. I have also been told by the medical doctors that it may very well be due to an autoimmune condition. I’m at a loss. The helichrysum oil sounds promising, and I’ll give it a try.
    Wishing you blessings on this trying journey. You’re not alone. Xx

    Reply

  21. Ilda Marques
    December 12, 2016 @ 8:44 pm

    Hi Candice, thank you for sharing your story. I too have tinnitus in my right ear with hearing loss as well. Wishing you well and may your guardian angel guide you on your healing path. All the best

    Reply

  22. isaskk
    December 28, 2016 @ 6:37 pm

    After reading these comments, I just bought helichrysum essential oil 100 ml. My hearing ability was perfectly alright till I was 17 years old . Then I got MDR Tuberculosis. For which I was forced to use powerful antibiotic injections in order to save my life. Otherwise I would have died. By 18 years, TB completely got cured, however I lost my hearing ability and got completely deaf due to damage of nerves and side effects of antibiotics. I’m now 26 years. Using hearing aids to both the ears and also Suffering with tinnitus.

    I bought this oil 100 ml just to give a try, can someone tell me how my hearing will be restored and how to use this oil

    Reply

  23. Anna Wilde
    February 26, 2017 @ 9:36 pm

    Hi
    I’m 36 now but developed menieres when I was age 17.
    I really feel for you with experiencing such drastic sudden changes to your health.
    Have you heard about a therapy that was trialled in USA but don’t know where its available today. There is a video on YouTube of a lady who had gentamycin for an infection and it destroyed her vestibular system. She had electronic device on her tongue and it basically wielded with her brain to become a prosthetic vestibular system. The effects lasted a few hours after using it.
    Also traditional Chinese medicine indicates kidney problems when ears have problems so thou could try kidney tea tonics, acupuncture etc.
    Sending well wishes

    Reply

    • Candice
      February 27, 2017 @ 9:31 pm

      Could you send us a link please Anna? Yes I am aware of the link to the kidney meridian and do try to do some kidney strengthening things. I will try to remember to do a post on this at some point. Thanks for the reminder!

      Reply

  24. Barry
    December 2, 2017 @ 1:20 am

    Hi Candice,

    Sorry for your issues, but it seems like you’re doing pretty well. Way to go. I developed a brain tumor (acoustic neuroma) and had it removed almost three years ago. I lost hearing and this also started my imbalance and oscillopsia. I’m improved over the past couple of years, but have persistent imbalance and still have oscillopsia. I’m told that I need to provoke the symptoms that are most difficult for me so as to “get used to it”. So, I’ve joined the local YMCA and am trying to jog. I’m doing it, but have only seen marginal improvement since starting (about 1.5 years). I plan to keep trying as – what else can I do. Plus, it’s good for me. I hope for a cure some day, but I’ll take improvement. Be well. Barry

    Reply

    • Candice
      December 2, 2017 @ 2:19 am

      Barry, What a journey you have been on! I salute you for all you have had to go through and your stamina to get better. I love to see people work so hard to overcome these obstacles. I have not been able to jog except for a few meters to catch a bus or get across a street for example. I’m not sure how it is possible with eyes bouncing in their sockets so it is inspiring to me that you are able to do this. I assume you have had Vestibular Rehabilitation Training (VRT)? if not definitely find someone to provide this to you. They will work out where you have the most trouble balancing and then give you exercises to help you train your brain. This really helped me though I didn’t persist with it to get even better once I was walking. I agree the main thing is exercise and VRT. You could get a balance mat and do your VRT on the pad. Though really all of these exercises help you learn to balance, but not necessarily make the oscillopsia any better. I think over time you just forget what it was like to have straight unbouncy vision.
      I’m awaiting a bit more information but will soon publish a guest post and this may have a few more tips so please look out for this.

      Reply

  25. Deon
    December 9, 2017 @ 2:02 am

    Hello Candice,

    I recently this past month have been dealing with this terrible condition of oscillopsia and balance issues due to possible menieres disease. I’ve seen so many doctors this past month I can’t count on two hands. I started VRT about two weeks ago and seen slight improvement with my balance but not the oscillopscia. I’m trying my hardest to stay positive but sometimes I just cry. I have a 16yr old son so I try to stay upbeat around him but I’m only human. I pray that I can go back to work in a few months but I can’t imagine going back to work feeling like this. My family says I should just focus on my health which is the best thing to do but when you’ve been working all your life it’s hard to just sit around the house. My family has been so supportive and for that I’m truly thankful. Thank you for sharing your story as it makes me feel that I’m not alone. I haven’t even told some of my family and friends yet partly because I’m still trying to understand this situation I’m in myself. I pray you continue to get better and God bless everyone dealing with this condition.

    Reply

    • Candice
      December 9, 2017 @ 6:18 pm

      Hi Deon, I’m so sorry for what you are going through. There is currently no known ‘cure’ for oscillopsia. The VRT helps the brain to adjust to the vision jumping, and keep balance,m but it doesn’t, as far as I know, improve the oscillopsia. What happens over time though is that the brain just gets used to the bouncy vision. I have been bouncy for 2.5 years now and almost forget what it was like when my vision was still. You have to be gentle with yourself. This is going to take some time to adjust to and it’s only natural to feel distraught sometimes. Take one day at a time. Don’t sit around..try to move as much as you can, even if it is only around the house or in your street to start with, as this all helps your brain to re-adjust. And don’t forget to turn to your friends and family for help and support when you need them. People wont understand how to help unless you are very clear about what you need. Maybe a secure arm to lean on as you walk around your area…or just a listening ear. Wishing you all the best x

      Reply

      • Deon
        December 9, 2017 @ 7:57 pm

        Thank you Candice for your encouraging words. God bless

        Reply

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