Tinnitus Talk Support Forum

I love London - it's saddens me to think I'll never view it again in the same way and always be anxious of even shopping or site seeing. I'd go train with ear protection.

Thanks all for your feedback - I'm pretty much set to drive myself now. Have driven to central London a few times.
I think the underground, particuarly if get a loud break squeak, will be too much.
Driving myself gives me as much control as I could possibly have.

@hopefuldede - yeah I used to love London too. Worked there a number of years and many nights out there.

@Strawberryblonde - how are you doing? - how are things?

Best of luck with it all tomorrow mate

@DeanD things are going OK :) feeling OK as time goes by and letting go of the regret is helping somewhat. Just annoying reactivity or diplacusis? Has flared up or I'm just noticing it more. How you been keeping @DeanD how's the dysphagia?

I hope whatever your decided went okay for you. Please let us know how testing goes !

Thanks @Hardwell!

@Strawberryblonde - im glad things are ok for you at the moment :), it takes time. Yes that will pass over time, it generally does. My reactivity flairs when I overdo it with noise.
Unfortunately the dysphalgia is still bad, im trying dysphalgia food and struggling a little with that. Went to London Neuropathy hospital today for an EMG (not fun) but came back clear. CT Scan booked for throat next week.

@DeanD I'm like a hermit and have always been so my noise exposure is always limited hehe I think maybe my H is flared up again as not sure if things so too loud or I've just forgotten how loud things are supposed to be! :)
Are you on a liquid diet or can you manage foods at all if any? Not sure what an EMG is? Not nice then :( Hope you get some answers soon :)

@ErikaS - Hi Erika, how are you doing at the moment, any better?
I had an EMG today at the London Neurology hospital, came back clear.
They said they cant really test the vagus or glossopharyngeal nerves - but find it strange any damage is localised to the throat only.
Gag reflex is still gone, they said usually points to neurological, but every test is clear.
I have a CT scan next week as well as a SALT consultation

@ErikaS - unfortunately both my neurologist and neurosurgeon are saying the next step for diagnosis is an MRI - and us hyperacusis sufferers know the fear of these only too well.
I'll see if the CT scan next week uncovers anything.
Myasthenia Gravis (that my neurologist suspected) though I believe has been ruled out.

@Strawberryblonde - I was the same too, living like a hermit. I only really go out to appointments now. The loudness can sneak up on you.
An EMG is where electricity is sent in to your nerve to test its reaction and speed. It also involves fine needles in to the muscles to test those too.
Im mainly on liquid food, although some days I can get pureed food down

Man @DeanD , I am happy they continue to run tests, but so frustrating that you have no answer yet! Very happy to hear MG was ruled out at this point, that is not a condition one wants to face.There is some type of nerve dysfunction going on, losing both sensation and function. Unfortunately, MRI would be the next move, but glad they agreed to a CT at this point.

@DeanD How are your ears doing after the drive and all? Spiking? Are you able to get enough nutrition in during the day?

Ayurvedic treatment might be worth a shot to calm sympathetic nervous system. I found this online.
https://www.theayurvedicclinic.com/
https://www.ayurvera.co.uk/ayurveda-specialist-dr-battathiri

For hyperacusis (now resolved) and tinnitus I turned to ayurveda (including six helpful weeks in India), acupuncture, hypnosis, and craniosacral therapy.

Noise cancelling headphones with bluetooth for travel?

This gives some idea of the ayurvedic approach to treating tinnitus. The 2 person warm oil massage (abhyanga), shirodhara (warm oil flowing onto to forehead), steam.... at least feel good and are calming. Maybe, you'll find some relief. Wishing you the best.
https://www.researchgate.net/publication/354770010_Role_of_Ayurveda_in_Managing_Tinnitus/link/615bb8409911cb6c9dd966ec/download

@ErikaS - I have spiked unfortunately although it came on 10mins after putting a CD in to a PC and the mechanism started whirring, so don't know if it was the drive or that.
Food is very difficult. I have bought dysphagia level 4 food but its hit and miss whether I can get down me.
Liquids are fine but anything thicker like mash potato is an issue.
Im losing weight fast.

@ErikaS - I just feel I am no closer to an answer. There is muscle weakness but no one will diagnose it. If it was vagus or glossopharyngeal I dont know what to do.
I feel I may be aspiring to the lungs and nose but I feel unless I end up in hospital with pneumonia, no one will take it serious.
Barium swallow was clear but 3 weeks ago, its worse since. I may need a retest but again at least 2 weeks away.

@DeanD You have asked your team about LDN, correct? If it's an inflammatory response that is affecting the nerve function, it is worth trying. How about autonomic nervous system dysfunction? Breathing and swallowing are part of that system. Just some points to throw out there if they haven't been already.
I am so sorry you have this on top of the shitty auditory stuff. This is not fair.