What's causing my relapses? Prevention measures? AIED

Posted by aussienam @aussienam, Mar 15 4:55am

I suffered SSHLin 2018. Diagnosis initially was Meniere's or a non-Meniere's or 'pre-Meniere's' disease diagnosis. Cochlear endolymphatic hydrops was also another diagnosis. Positive response to steroid medication (Prednisolone) and intratympanic injections of Dexamethasone, as well as an HSP70 positive result in blood work, meant my specialists added another diagnosis of AIED. I was put on Imuran (Azathioprine) immunosuppressant, along with Prednisolone (which I heavily relied on for consistent multiple flare ups over the years). I tapered off Prednisolone over a long time and remained on Imuran. I then was instructed over a year or so to taper off the Imuran and stop. I had a good period of no more hearing loss and only a few minor flare-ups for about 10 months.
But it returned. So I have spasmodically been on and off the Imuran. But always kept Prednisolone. I have been self directed regarding the Prednisolone by my immunologist, to use according to severity of symptoms. I usually start at 5mg for the beginning of a flare up. If it isn't being controlled. I increase to 10mg. If no luck I bump up the the 25mg tablets. If still no improvement I go to 50mg. If still bad I max out to 60mg. Then a taper down to zero eventually. I hate Prednisolone as it has ravaged my body with gynecomastia, hairy back and neck, loose and saggy skin, round fat face, shrunken lips, fat cheeks, blurred vision, had early signs of cataracts so needed lens replacement surgery (an ongoing costly nightmare of its own exacerbating my stress), agitation, anxiety, increased blood pressure. But it is the only effective immediate treatment. If I can, I seek intratympanic injections. They work great for me. I wish I could injections my own eardrum.
I have had some bilateral episodes (usually on right ear). Very scary.
Triggers that seem to worsen things for me: severe stress (currently relapsing as I am going through a lot of stress - multiple issues), alcohol excess - usually if I have indulged too much in a night or over a short period. I can get away with a once a week or fortnight moderate consumption. I had a terrible bilateral episode when depressed I drank over three consecutive nights.
Viruses trigger relapses - COVID-19 caused a horrible relapse and lost a significant chunk of hearing. Influenza flu viruses also trigger a relapse.
I have Hashimotos disease/hypothyroidism. There are documented links between this disease and inner ear disorders.
I keep fit and train 4-5 times a week normally at moderate to intense levels - weight training and cardio. I eat mostly healthy. I hydrate a lot.

But there are times when things all seems okay in general, but I still relapse. It drives me crazy.

I have lost over 80% in my right ear. It can still pick up high frequencies. Hearing aid just amplifies garbled sound. Is distressing. I can play music in my earbuds and get a slight resemblance of stereo, albeit not ideal. But need to be wary of volume as loud sounds trigger a rumbling, tinnitus, a feeling of hearing loss. Resting in a quiet area helps to resolve this. I cannot hear conversations in my right ear. No phone handsets on that side. Totally inaudible.

My elderly mum is addicted to talk back radio and all I hear is what sounds like a high pitched sound full of squawks and cackles. It truly disturbs me. Babies crying, vehicle exhausts - all trigger my Hyperacusis. I isolate all the time. I do try to expose my bad ear to sound as I know it does not help Hyperacusis to plug up my bad ear. Brown noise I use to treat it at times.

I am thinking I may need to do another round of Imuran. I am in a tricky situation being able to see an immunologist/rheumatologist in time. I spend time in Australia caring for my old age mother and having respite abroad as I am medically retired. Medical costs for specialists abroad in South East Asia are extreme and prohibitive for me (cheap country except for specialist treatment and medications). Australia we get Medicare to pay a portion of medical costs. An intratympanic injection here is about $90 AUD out-of-pocket. Where i go abroad it is around $1000 each time. I cannot afford that and normally need 3-4 injections to be effective. Overseas insurance won't cover this pre-existing condition. But my choice to be there (mental health benefits and cost of living benefits).

Are there any things that people do that has been helpful to them to prevent relapses?

Thanks

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kayabbott | @kayabbott | Mar 16 8:03am

My sister has (probable) Meniere's, don't know if she has a definite diagnosis but has had vertigo/hearing loss for more than a decade. She controls it by avoiding stress and eschewing all dairy. I have celiac (14 years) and control it with diet, but she won't get tested so is just gluten light. Consider keeping a food log in case some food(s) worsen symptoms. Stress is a big trigger, especially with you being a caretaker. Does Australia have care for caretakers? Will your mother wear headphones for the radio (more expensive ones can compensate for hearing loss)? For you, Bose or other good quality noise-cancelling headphones are helpful at blocking the squawks and don't irritate like earplugs. Regular foam earplugs are not bad, but silicone and high-density foam are better at dampening decibels (I also have low noise tolerance). If you haven't tried meditation, it can be useful for controlling stress response and insomnia. Good that you are training and have a healthy diet and hydrate. One hypothesis for Meniere's is that the inner ear fluid is no longer a closed system, that it is more sensitive to dehyration/salt levels than someone without the disease. So it is good to drink an electrolyte with salts when intensely training. We do spend time and emotions nibbling off the edges of our diseases. Great that you are looking for answers. ResearchGate has medical papers on Meniere's (boring so also good for insomnia) .
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6513907/

Becky, Volunteer Mentor | @becsbuddy | Mar 16 6:17pm

@aussienam This must be so difficult for you. And just when you start feeling better, you have a relapse. This article from the National Institutes of Health talks about the research and results as it pertains to AIED.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10256420/
Other than the injections, have you found anything positive to help?

aussienam | @aussienam | Mar 19 11:25am

In reply to @kayabbott "My sister has (probable) Meniere's, don't know if she has a definite diagnosis but has had..." + (show)

Thank you for the wise suggestions. Good idea, I will make a log of my diet so I can see if there are any patterns.
Since being back in Australia after several months abroad, my diet has changed in that I have been consuming more wheat products (bread, cereal). Maybe some connection there. Or like you mentioned - stress.
Also suffering a bit from heat exhaustion here due to different set-up with cooling here. But I am vigilant in hydrating - but may not be enough.
My mum gets care services, but they are just an hour or two a week at best. And gets expensive as only a partial subsidy allowed.
Yeah, tried to get mum to wear headphones, ear buds, you name it. But all failed. Thankfully she does at times turn it down for me. But it's her domain and only real joy in life so don't like to compromise that too often.
Meditation - am gaining an interest in Therevada Buddhism for philosophy and meditation reasons. But very slow as my PTSD is chronic and a couple of decades of symptoms.
Will increase my use of electrolytes when training. Cheap overseas but expensive here but will look around.
Thanks for all the tips!!

aussienam | @aussienam | Mar 19 11:31am

In reply to @becsbuddy "@aussienam This must be so difficult for you. And just when you start feeling better, you..." + (show)

Thanks for your comments. Yes it has been a true rollercoaster since it all began.

Thanks for the article. Will read it. I like to research a lot about inner ear disorders.

Other than injections, I always have my Prednisolone on hand, as well as Betahistine and Moduretic (diuretic) meds for relapses and they seem to work better in combination.

I did feel that for a considerable time that taking high doses of N-Acety Cysteine along with Alpha Lipoic Acid daily, helped reduce my symptoms. I take 1500mg NAC daily but the positive effects I thought it provided doesn't seem to be the same. Alpha Lipoic Acid is so expensive I had to stop but may try to get another course of it.
Other than that, still searching for positive treatments. Have tried a lot of supplements over the years.

Regards.

teresaramirez | @teresaramirez | Mar 20 4:45pm

In reply to @aussienam "Thanks for your comments. Yes it has been a true rollercoaster since it all began. Thanks..." + (show)

Hello. In the other AIED post I told about my case. I was diagnosed with the disease after symptoms of fluctuating hearing loss, tinnitus, pressure in the ear, dizziness (I have not had vertigo) and a positive test for cochlear antibodies. That was 4 months ago. I have taken only one cycle of prednisone, 4 weeks, 60/45/30/15 mg, and after 2 weeks of completing the treatment I have recovered part of my hearing (only the right ear is affected for the moment). My hearing fluctuates for hours, but I haven't lost that much again. I've been like this for several weeks, although I do have relapses of tinnitus and pressure. Tinnitus has also appeared in the good ear, but without losing hearing yet. My hearing loss in my right ear is only in low frequencies. This is how I can last without taking corticosteroids, as long as I don't lose my hearing I can stay like this, I can endure tinnitus fluctuations. How is your tinnitus? How do you cope? I also wanted to ask you about the n-acerylcysteine NAC supplement, do you recommend it? I am taking, all natural, vitamin D3k2, magnesium, ginkgo, aswhagandha. And Alpha Lipoic Acid? Would any ENT or rheumatologist recommend it to you? thank you!

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