Meniere's since age 17

Age 17 I started with T in my left ear. Thought I should get it checked out. After some tests: MRI and a tuning fork on my forehead test (?) and hearing tests (all normal) I was diagnosed (labelled) with Meniere's Disease.

What could have caused this? Well age 14 I had an abscess in my left tonsil, resulting in a year of antibiotics followed by 2 tonsillectomies because it grew back, nasty little thing. I also fell from a horse age 14 and got concussion. I didn't lead a particularly healthy lifestyle at this age, I don't want to go into too much detail but I used drugs and alcohol excessively.

I was told I would have dizziness and hearing loss. I tried Serq betahistine 8mg 3xday, but at the time my only symptom was T which the Serq did not affect so I stopped taking it. The T did not bother me at all and I just got on with things.

Anyway, by age 18 I was having regular episodes of vertigo each lasting a good 18 - 24 hours. They caused me to have to crawl around, vomiting, sweating, diarrhoea, and needing to sleep afterwards. It was of course, debilitating and distressing, especially when I was away not at home.

By about age 21 I think I had lost all of my hearing on the left side. I don't know becuase after being told there was nothing anyone could do and that hearing aids were not suitable for Meniere's I didn't bother seeing an ENT again until. The vertigo continued into my mid 20s and I had several drop attacks (Turmarkins Crisis) and had a few head injuries. I was afraid a little, but just cracked on with life.

By late 20s I was in 'burn out' where there is no vertigo, hearing is gone, T roaring as usual ( but never bothered me). I just had mild dizziness every now and again maybe twice per year.

Anyway, age 29 I really wanted to go to uni and study dietetics, but I found the single sided hearing so difficult in a lecture hall and I because socially isolated. I achieved an overall 'First' grade but felt so depressed and lonely I quit after my first year which I bitterly regret. The ENT offered a CROS system but it was worse than just being deaf - it was very confusing.
I did try an ordinary hearing aid in my deaf ear - it needed to amplify to over 90 decibells which was very uncomfortable but they encouraged me to persevere. However it caused a special type of hyperacusis called Tullio's phenomenon. Any sound, even my own voice, made me think I was moving and caused vertigo. It was hideous. I have never used a hearing aid since!

Age 33 I had a baby. 2 weeks before she was born my right ear goes 'deaf' only to certain tones, so everything sound really weird and people sound like robots. It was hideous and awful, and for the first time I had severe T in my right hearing ear. I was very distressed and 9 months pregnant. Within 24 hours it had gone.

I went to the GP who was useless. I gave birth and 2 days post partum the T began again in my right ear. I was very distressed. I thought it was going to happen again. That I would go deaf for ever. And so began my experience of post partum anxiety. The T in my right ear has been present now for 15 months (it has been in my left ear since age 17). The post partum anxiety was brutal. I almost went to A and E to ask them to sedate on several occasions because I just couldn't cope. It was like being on a white knuckle ride, like being in a bad dream all the time, day in day out. there was no respite. I felt so close to death all of the time.

I think it was not only brought on by the hearing loss and T but also I experienced many stressful events during the pregnancy; I had miscarried prior to this pregnancy and felt that I was to blame by being stressed. So I was afraid of feeling stressed. I was afraid of catching 5th disease and afraid of everyone who sneezed, my parents did not speak to me during my entire pregnancy, I had few friends, I had discovered my partner was unfaithful a year before, my friend (a mum of two) died of leukaemia whilst I was pregnant, there was a whooping cough vaccine campaign which constantly reminded me that babies can die, and I worked as a support worker for people who were mentally unwell 3 of whom were discovered to be plotting to try to harm me and my pregnancy and I had to leave work early.

So I was in this awful period of distress, where I felt so close to death and anxious all of the time. I felt like someone had a gun to my head 24/7. I begged anyone I met for help: GPs ENTs, health visitor etc. But was told I needed to go on a waiting list and to pay for private counselling. I did this, but because I could only afford a cheap counsellor they were really bad and said things like 'oh I can;t imagine it must be awful to live with tinnitus, I couldn't do it' which really did not help! I needed empathy and positivity.
I was of course offered antidepressants - I was not sick enough to have counselling but I was sick enough to be offered psychoactive drugs! Good old NHS. I was determined to breastfeed my baby and refused drugs despite being extremely desperate. After 6 months I had got an appointment for counselling, but my baby was terrible at travelling so I didn't go.

So I now have T in my head, in each ear in every frequency I can hear. Sometimes its like an airport noise, or like an orchestra of vacuum cleaners, or a factory hum, as well as organs and whistles and roars. I am quite strong at the moment and tell myself it isn't bothering me. I try to stay busy. Night is hard, being awake with my baby who is a terrible sleeper is hard. MY T fluctuates and wakes me up which is very distressing.

I don't take any drugs presently. I have adhered to a low salt, caffeine and alcohol free diet for several years becuase it is thought to help with fluid balance and thus help stabilise the meniere's attacks.

I have pondered on what caused the episode of cochlear hydrops prior to giving birth. There are a few things:
1. I was on high dose iron because my ferritin was too low. This puts body in a state of inflammation / oxidation.
2. The night it happened I was walking my dog and had been decorating so my hands were filthy. My right ear suddenly because very itchy so I pushed in the tragus as a way of itching it without putting my finger in. Immediately after that T began. I have regretted that moment a million times.

ENT's take on it is that the meniere's is now beginning in my right ear and I now have a future of even more vertigo and hearing loss to look forward to So far hearing test normal in right, although for several years it has shown a typical meniere's 'tick' shape, but all within normal range.

I have a wonderful baby and my husband is wonderful and supportive. My life is great. But so often I think about dying becuase of the T. I have been to GP so much in the last year. Frustratingly they offer antidepressants which I refuse becuase I am still breastfeeding and I am not depressed. I just want to die becuase it is the only escape from the noise in my head. I have again asked for counselling but did not score highly enough on thier quantitative anxiety/depression questions because I am not depressed or anxious. I just need someone to help me deal with the noise in my head and the prospect of bilateral meniere's. something, it seems that the mental health team here cannot fathom.

Well this is the first time I have told my story, I'm hoping it will have been cathartic for me. Hello to all fellow T and Meniere's people.

 

Welcome!

There is a Meneires thread on this site. We would love to have you join us.
https://www.tinnitustalk.com/threads/menieres-disease.5544/