Tinnitus Talk Support Forum

Thanks @ErikaS :)
It has been a tough week. Tinnitus increased in pitch again. I've also had silent acid reflux causing mouth, tongue and throat burns that sent me to hospital and having muscle and co-ordination issues.
Neurologist wants MRI and Caloric test done to continue investigating.
The silent acid reflux may have damaged ET - ear crackling sounds like very loud glass breaking

Waking up several times a night gasping for air, which could be sleep apnea - or may be too much acid reflux causing me to stop breathing.
Hands and feet becoming more difficult to move and tremors.
With hyperacusis and severe tinnitus being so rare the medical system just do not get the suffering on its own.
At a point now where being a wake isn't easy and can't sleep due to choking, not breathing or t volume.

Have neurologist appointment next week. He wants MRI and Caloric (but those are both noisy and my thresholds are like 30db) - it may end up being an EMG due to the muscle and nerve issues.
ENT will want to do tympommetry for ET issues, which can make tinnitus worse.
No one in the UK medical system gets hyperacusis or severe tinnitus, or understands the suffering.
Just don't know how I come back from all this.

I really do believe there is something underlying here. Maybe neurological changes from the microsuction and the meds, and/or damage caused by
esophageal acid reflux in to ET and ears.
Its so misunderstood I can't get anyone to join the dots, apart from my own research.
Medical system far from sympathetic, and too easy to blame stress when they don't know.

Sorry - lot here I know from a simple question, lol. Just needed to vent.
How are you doing Erika?

Sorry just getting back to you now, @DeanD . I am so sorry that this cascade of events and symptoms is not stopping. Before the microsuction, did you have covid anytime recently or before that or did you get a vaccine shot?

@ErikaS - I had Covid but February 2022, and all the vaccines during 2020 and 2021, so quite a way before.

@DeanD have you ever been tested for Lymes disease? I know my ?'s may sound off the wall, but the microsuction that triggered this domino affect of an inflammatory response is very neurological, but all scans of brain and bloodwork are "normal"?…

@DeanD I would question what is/was maybe lying dormant/below the surface that has now spiked up & run rampant, and conditions that many experience crazy neuro inflammatory responses are Lyme, long haul covid, and post vaccine.

@ErikaS - no, I havent been tested for Lymes disease although I had a quick look at symptoms and they don't seem to fit.
I am certain now this is a muscular neurological conditon, and unfortantely involves the throat, swallowing and breathing.
It is brutal. Its progressive, and not treatable or curable.

When severe t and h come along many say they don't want to live, myself included, but only when another illness comes along which could truly mean that, do you question how bad t and h are.
Mine is brutal but these neurological issues are worse.

@DeanD it's just so unbelievable how microsuction tipped all of this off. I really wish a doctor would step up and try something or suggest a medication to help stop regression. It's not like you have a disease ?? Praying for you, Dean.

Any improvements at all, @DeanD ?? Btw trouble swallowing, tremors, neuropathy, etc can all be Lyme symptoms.

Hi @ErikaS - the physical symptoms over the past month subsided. Had an endoscopy which showed nothing. Eating, drinking, swallowing much better. I was doing better, and in a better place. Was heading back to work next week, but yesterday I had a mould done for custom ear plugs. There was hardly any sound but somehow I have a major spike, loudest yet :(
I saw you post about your treatment, and hope it works for you!!