Week 22 – A new diagnosis of Autoimmune Ear Disease?

I cant believe its been 5 months since I became ill. Time is passing so fast and all I’m doing is going to appointments back and forth trying to get my life back on track. There is so much I want to write about but I just haven’t had the time unfortunately as I’ve had changes in my home and family that have needed my attention not to mention all the stuff of life which constantly needs sorting.

I guess the key thing to mention as its been a while since I updated, is that the intratympanic steroids (week 16) did work to lift up my hearing in my left ear after the drop in May (week 15). This just demonstrates how vital it is to get steroids immediately. How much better might I be now had I got them all the other times I needed them? Shame shame on you NHS for your lack of patient care and the poor training of all your medical staff.

Three weeks ago I had my appointment with the Lupus Unit at Guys Hospital to eliminate the possibility of my illness being an autoimmune condition. The consultant asked me tonnes of questions, pushed and prodded me and did lots of tests on me. He even tried to stick bits of paper in my eyes and leave them there for FIVE MINUTES!!! (no way Jose! Noone sticks anything in my eyes! especially now I am so dependent on them). He concluded that I have no symptoms of any systemic autoimmune disorder but he took a long list of blood tests to double check anyway. I breathed a big Phew and await the results which I will get next week.

But then yesterday I had my appointment with my Neuro-otologist at UCLH. I was just asking her a few questions and I mentioned Labyrinthitus and she said “but you don’t have Labyrinthitus”. ….!!!????? So I asked her with my jaw on my lap “So what exactly do I have?”. She explained that she thinks I have auto-immune ear disease (AIED) or some other genetic disorder on the basis that:

1. Labyrinthitus only ever attacks once

2. I responded well to steroids

3. Labyrinthitus never affects both ears, and doesnt normally cause fluctuating, rapidly progressing hearing loss

5. Labyrinthitus doesn’t cause as much damage to the vestibular function as in my case (mine is completely buggered).

Nice of her to tell me now, in passing, I thought!

I’m confused…. plenty people have labyrinthitus more than once in fact one of the first things the GP said to me is that once you have Labs you are susceptible to getting it again in your life. And lots of people respond well to steroids, that’s why its given for Labyrinthitus. The truth is, the viral cause of Labs has never been confirmed or identified either. So whats the difference?

But one thing cannot be denied…most Labyrinthitus sufferers don’t have hearing loss in both ears. I haven’t encountered anyone yet. And also I haven’t encountered anyone with fluctuating or progressive deterioration of hearing loss, (apart from in Meniere’s sufferers). This is likely the biggest reason she has diagnosed AIED.

She explained that even though I have no symptoms of systemic auto-immune disease (e.g. Lupus) it’s still possible to have an auto-immune attack only to the ear (referred to as primary AIED). There is no blood test for it so even if my blood results come clear it doesn’t mean I’m clear of it.

The drugs they give for AIED suppress the entire immune system and can produce severe side effects. She said she doesn’t want to give them to me yet and instead wants to wait and see what happens. What she means is… we have to wait and see if her diagnosis is correct… and I lose even more hearing.

I left in tears…because I know that AIED can lead to complete deafness. I think I would prefer the diagnosis of a terminal illness over one which isolates me from people forever.  I cannot even contemplate this possibility. It’s beyond my ability to bear.

So tonight I started my research. Because it’s such a rare condition and the inner ear cant be biopsied, there is very little research being done. The accessible scientific research papers are too technical for me so I’m going to have to learn more about immunology to understand, but here is basic info I have found so far:

Auto-immune Ear Disease

Systemic autoimmune diseases which can cause sensorineural hearing loss and dizziness:

  • Polyarteritis nodosa (PAN), Cogan’s syndrome, relapsing polychondritis, Wegener’s granulomatosis, polyarteritis nodosa, systemic lupus erythematosus (SLE), (PAN), Sjögren’s syndrome, and Behçet’s disease.
  • Some infectious conditions, such as Lyme disease and syphilis can cause hearing loss by triggering autoantibody production.

Classic symptoms of primary autoimmune ear disease:

  • Hearing loss occurring rapidly over weeks to months (+30 dB)
  • Bilateral in most patients (80%+).
  • Can fluctuate and stabilize at a certain level, or can progress without fluctuation.
  • The overall course is progressive deterioration in auditory function.
  • Accompanied by dizziness and imbalance in about 50%.
  • Tinnitus and aural fullness which can fluctuate in severity in 25-50%


  • Rare – less than 1% of all cases of hearing impairment or dizziness. Precise incidence is controversial as they think 16% of people with bilateral Menieres and 6% of people with any type of Menieres may be due to immune dysfunction.


  • One of few forms of treatable inner-ear disorder with a good response to immunosuppressive therapy.
  • Options are limited, with steroids being the only validated treatment option.
  • Conflicting research as to benefits of Methotrexate.
  • Cyclophosphamide is restricted to patients willing to endure the risks.
  • The administration of toxic medications to preserve hearing at all costs is a less desirable option than cochlear implants upon total loss.

So far I’ve had the diagnosis of Labyrinthitus – go home and rest (GP); Menieres – take these drugs for the rest of your life (ENT); and now AIED – we’ll put you on seriously toxic drugs when your hearing deteriorates (Neuro-otologist).

I’m a bit speechless right now. Its a tough call to make – to try to save the hearing using drugs which damage the rest of the body. Would you choose your ears or your fertility?  Your hearing or the possibility of cancer? I’m pretty anti-medication so the thought of having to take these drugs is a difficult one. Then again I think I would do absolutely anything to save my hearing.

My plan is to do everything I can to naturally heal myself and prevent any further deterioration. I’d love to hear from anyone in the 1% group that have AIED….and welcome any info on healing approaches for autoimmune illness etc.

I’ll update this post as I learn more.




http://www.ncbi.nlm.nih.gov/pubmed/15505770; http://www.ncbi.nlm.nih.gov/pubmed/7934594;


The sound of music upon my injured ears

So I’m sitting here at home on another summers evening. Keeping busy as usual. Not thinking of what I might have been doing had my life not fallen to pieces from this stroke of difficulty that fell upon me. Not thinking about Glastonbury or all the festivals that I might have danced at had my body not been so drastically injured by this passing invisible unknown thing that, randomly, deliberately or cruelly chose me.  I’m not thinking about how long this might go on for or how I will live a life I want to live without my hearing or inner ear balance or with this awful metal on metal screeching sound in my head.

I decided today that since my hearing has fluctuated, I should not waste any opportunities to listen to music (just in case there is any further decline in future).

If you had asked me before what pastime gave me the most pleasure I would have said music. I was born singing and as soon as I was old enough was playing with records and tapes, recording sounds over and over each other to create music. I learnt flute at school, taught myself guitar as a young teen and then ditched them both for turntables once the dance music scene took me over. I’ve always loved singing but my voice got pretty ruined by 20 years of smoking. I’d always promised myself that if I could quit smoking I’d treat myself to singing lessons.By the time I quit I felt I was too old to start from scratch.

It’s always been one of my biggest regrets that I didn’t do anything with my love of music. About 2 years ago I treated myself to the most beautiful and sweet sounding Breedlove guitar. I fell in love with this particular guitar as soon as I heard it. I yearned for it for a whole summer and went to visit it in Denmark Street so many times that eventually the shop keeper took mercy on me and let me have it with a discount. Unfortunately years later it’s been sitting untouched on its stand. Life got busy with work, boyfriends and other necessities and I’ve been waiting for a quiet time to devote to it.

I’m certainly no songbird, and never really honed skills in any instruments…but nevertheless, music and singing is a pleasure to me without comparison. And so as my hearing deteriorated over the past 4 months, and sounds have became increasingly distorted, I’ve become scared of listening to music and it sounding really awful as then I’d have to face the loss of something so deeply precious to me.

And so I decided tonight for the first time in 4 months, to be brave, and try to listen to some music.

Although the quality is lost, I can hear music when it’s streamed straight into my hearing aids. I cried a lot – because I feel both blessed to be able to hear music at all, but also because I’m so sad that the quality is so awful. Because I am profoundly deaf in the high frequencies, music is distorted and compressed. I’ve lost the quality, the roundness, the smoothness. What I hear is probably a bit like the sound that comes out of speakers you’d buy in the £1 shop – crackly, edgy, tinny. … But I can still hear enough to enjoy the song if it’s straight into my aids.

But I don’t see how I’ll ever enjoy listening with other people as the music would have to be really loud for me to hear it through speakers.  I worry it will sound like the TV – fuzzy, undefined, noise that I cant quite make out. Every situation where there is music playing in the background is going to be uncomfortable for me as I will be excluded from the mutual enjoyment of it and instead have to tolerate its distortion. I didn’t try playing music through my speakers tonight as I have no sense of volume and don’t want to wake the street. I’ll try tomorrow with a box of tissues and update here.

I know there is a lot worse that could have happened. There are far more people that have more significant things to be sad about. But to me, who’s life is now monk-like, unable to go out and be with people because I either hear too much or not enough, my loss of hearing and my loss of music is my sadness tonight. Tonight I play the blues for all that has been lost these past few months – for my partner in crime who left without even so much as a goodbye, for my desirability, freedom, ability to walk, drive, run, dance, hear, listen, respond, communicate, mix and merge in the world.

I’ve done so so well. People I meet compliment me on how well look and how positive and chirpy I am despite whats happened. I really feel I’ve coped amazingly. Tonight I allow myself a little crumble. There is only so long I can be in denial of how much I have lost. My life as I knew it has been taken from me and I’ve no choice but to start again…learning how to live with my poor injured ears in a world.

Here’s a song for us. Ray Lamontagne soothes my soul and I hope he soothes yours to.

I’d really love to hear from others with sudden severe hearing loss. There must be ways of managing to still enjoy music? So far there haven’t been many deafened people respond to my blog and I certainly haven’t come across any people who have experienced it as quickly as me in both ears. Anyone else out there been/going through this experience?

Invitation to guest blog your experience with labyrinthitus, hearing loss or vestibular issues

I’d like to open up a space on this blog for other people to share their experience with vestibular issues, labyrinthitus and hearing loss. It can be so isolating as the people around us don’t understand what we are seeing, feeling and hearing. Personally I so appreciate connecting with others who have had similar experiences and so understand. Its particularly uplifting to connect with people who have succeeded in getting back to ‘normal’ life.

You are invited to write your story here which I will publish as a Guest Blog Post. Continue reading

Week 18 – On a quest for support, equipment and balance

Last week I had my final intratympanic steroid injection. I’m glad that’s over as neither me nor my family enjoyed travelling an hour to hospital to sit there and wait for 5-6 hours each time. It was exhausting and it’s not exactly a comfortable thing to have a needle pushed all the way through your ear drum, squirting liquid into a place that it doesn’t normally go.

But I’m pleased to say that it was all worth it because it lifted the hearing in my right ear. Yippee. Its not as good as it was 3 weeks ago but its good enough now for Continue reading

Helichrysum Essential Oil for hearing loss, tinnitus and ear healing

PLEASE GO TO THE NEW UPDATED PAGE HERE (this is an old version!)

Helichrysum oil, also known as ‘Everlasting’ and ‘Immortal’ essential oil, is made from the European flower species H.Angustifolium and H. Italicum. The oil is well known for its restorative properties to the skin, liver and nervous system but I discovered that it is also known for its ability to help ear health problems such as hearing loss and tinnitus.

I’ve compiled all the information and positive reports from users that I found here so you don’t have to search for it. They should link to the original page:

We found information that Helichrysum can help if the hearing loss is due to infection and inflammation, and also in some cases of nerve damage. Results can be wonderful, with profound hearing returning, to much more subtle improvements with some hearing only restored after several months of use. If hearing loss is due to deterioration or arthritis of the small bones in the ear – most likely there will be no improvement at all. As with any medication or medical plan, there are no guarantee’s

I had no hearing in my left ear at all. For two month I used Helichrysum Blend in the morning and in the evening. I put the oil on a small cotton ball and put it inside my ear. Sometimes I put Lavender on it as well. I can talk on the phone now and hear like normal.

I used Helichrysum Blend for tinnitus! It took a week or two to notice a difference, and it’s completely gone after about 5 months. I used a drop of Helichrysum on a cotton ball at night and put it in ear. About 2-3x a day I apply it around my ear and the back side of my ear (next to my hairline).

Good for nerve damage. Also use for ringing in ears. Put on mastoid bone and ringing disappears.

My husband is living testimony to hearing loss – using this oil brought a lot of it back, and he hasn’t stopped using it yet.

It works great on all ear ailments. BIG time! Just put some on the tip of your pinky finger and rub it into the ear canal until you hear it clicking and sloshing a bit. smile emoticon From my knowledge base, you mustn’t drop Essential Oil’s directly INTO the ear canal, but rubbing it into the outer ear canal in powerful on all ear issues.

Helichrysum is great for tinnitus (ringing in the ears).

My new journey with Helichrysum has been amazing. I have struggled with Meniere’s for two years, with tinnitus, hearing loss and vertigo. I began with Lavender and then add this one. This combination has helped with these in wondrous ways. I have not had a vertigo attack since I started this duo. Wow! 

Some people claim that Helichrysum can improve hearing and reverse some loss of hearing (active in motivating heavy metals to leave brain and auditory areas – chelating agent for metallic, chemicals and toxins).

I am hearing impaired and have read about this oil, so I found this company and ordered it. I got this oil from this company on Saturday 16th and started to put the oil behind my ears as well in the ear canal, but do not drip the oil into the eardrum. I have been doing this twice a day and within 3 days I was getting better clarity in my hearing. I wasn’t wearing hearing aids and I was able to hear family talk behind me while the tv was on and browsing on the iPad. I have only been doing this for a week total, but will continue ….. Very excited about the potential..

Helichrysum Essential Oil has been used for hearing loss due to nerve damage. One customer who heard other deaf people experience success, applied it daily around the outside of his ears and inside as far as the pointer finger could fit and in 3 months was hearing through walls, something he had not been able to do since he went deaf when he was 5 years old.

My sister suddenly had complete nerve deafness in her left ear 19 years ago. Doctors told her there was nothing they could do. After hearing that they had had success in Egypt using Helichrysum for nerve deafness, she decided to give it a try. What did she have to lose? After faithfully applying one drop of Helichrysum daily to the mastoid bone behind her ear for 7 months, she had regained significant hearing in her left ear. After 11 months, it was even greater. Praise God for Helichrysum!

I bought this because I have severe tinnitus from a brain tumor. So far this is providing me some relief, a lessening in the noise I hear.

I suffered a head injury from a motor vehicle accident 20 years ago and lost hearing in my left ear. One year ago I hit my head and had recurrent symptoms similar to the head injury 20 years ago–tinnitus and fullness in the head and difficulty hearing in my good ear. I was especially concerned to conserve my hearing in my right ear. I put Helichrysum oil around the ear and on the reflex points for the brain and ear on my feet. I repeated this every 20 min and after 2 hours my symptoms disappeared! I was amazed!

But after about four days, I thought I was hearing better, but wasn’t sure of it. After a week, there was no doubt about it. I was able to hear the minister, and take part in conversations where only one person was speaking at a time. Also, for the first time in several years, I was able to hear the birds singing outside the house. It was so wonderful hearing them sing.

Off course I can’t verify any of these statements but I decided to give it a try anyway.  It’s quite a scarce plant so prices are high and my 5 ml bottle cost me just over £20 (Corsican variety of H. italicum). But given it it has so many wonderful benefits I wanted to introduce it to my medicinal kit. Anyway, for me, I would give every last penny I have to get my hearing back so what’s £20 anyway?

I’ve been using Helichrysum oil for about a month now every night before I go to bed. I’m massaging a few drops of it undiluted, directly to the outside of my ears and just inside the bowl (please do not put ANYTHING directly into your ears) and all around the ear at the scalp and a bit down the neck. Its a nice soothing thing to do for oneself and takes very little time to do. I’m going to start massaging it into the ear reflexology points of my feet from now on. This is just below the two little toes


Its already shown itself to be a fantastic wound healer. I had a really deep cut to my thumb from a clumsy accident with the guillotine. It wouldn’t heal for at least a week. When my Helichrysum Oil finally arrived I dabbed a bit of it on my wound and the next day it seemed to have started healing over. It really was quite a difference.

Some of the properties of Helichrysum Essential Oil that I found online: 

  • Encourages cell growth and repair – speeds up the healing of wounds, bruises and bones, and reduces the appearance of skin marks, wrinkles, stretch marks and scars.
  • Smooths, moisturizes and softens skin. Used in anti-aging products for its rejuvenating benefits to the skin (emollient)
  • Reduces swelling and inflammation (anti-inflammatory)
  • Can ease digestive, facial, or pulmonary spasms as well as other muscle spasms  (Anti-spasmodic)
  • Helps to thin the blood (anti-coagulant)
  • Protects wounds from becoming septic and can be directly applied to wounds, cuts, pricks, and any other open sores that could become infected (antiseptic)
  • Protects the body against many microbial infections – anti-microbial/anti-viral/anti-fungal.
  • Strengthens, regenerates and protects the nervous system (nervine)
  • Soothes, regulates, protects and detoxifies the liver (hepatic)
  • Keeps the spleen healthy and free from infections (splenic)
  • Clears accumulation of blood or blood clots (anti-hematic)
  • Expectorant – warms the respiratory system and gives relief from continuous cough and congestion
  • Energetically and emotionally –
    • opens and strengthens the solar plexus
    • uplifts and increases feeling of safety and security.
    • cuts through emotional blocks and allows release of repressed emotions.
    • strengthens patience, persistence and compassion
    • for those who do too much, try to control too much and take too little time out for themselves causing resentment, frustration, irritability, and moodiness. For those with a negative attitude brought on by the vulnerability of emotional trauma.

Given these properties, Helichrysum Oil is indicated within the treatment of

skin disorders, digestive disorders, bronchitis, colds, coughs, gallbladder infections, menstrual cramps, and sinus infections, asthma, bronchitis, whooping cough, headaches, liver ailments, arthritis, backache, carpal tunnel syndrome, rheumatism, and sciatica, varicose veins, hearing loss and tinnitus….and much more.

Other oils indicated to help for tinnitus and hearing loss conditions include:

Lavender, Geranium, Cypress and Juniper Berry.

Have you found any benefits to your hearing loss or tinnitus from Helichrysum Oil?

Please let me know…comment below. I’d really like this blog to become a resource of positive news stories for others recovering from this condition or similar ones. There is WAY TOO MUCH information online telling us that hearing loss cannot be restored….with this brain-washing it’s no wonder we don’t get better!

Our minds are powerful, lets focus on tapping into the body’s innate healing capability. We must believe it is possible. So lets put all the good new stories in one place and focus on those x