General moans from me.: I've been suffering... - AMN EASIER

AMN EASIER

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General moans from me.

monkeybus profile image
9 Replies

I've been suffering shocking tinnitus of late. Saw my neurologist earlier today - "No treatment for that". I'm glad I don't have to pay him for his sage medical advice.

I other news, I smacked my head on a concrete wall 6 weeks ago. That hurt, I don't mind telling you.

Asked my neurologist - "Try to avoid hitting your head". A bit late for that.

Anyone else get tinnitus? I've had it since I was a little kid.

Here is a final quote from today's neurology masterclass - "A lot of people get tinnitus."

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monkeybus profile image
monkeybus
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9 Replies
SongStream profile image
SongStream

Did you have an ear injury as a child or suffer from hearing loss? It is important to determine the underlying cause for treatment which I'm sure you are fully aware: mayoclinic.org/diseases-con... Aging can also worsen tinnitus as well but for many it can be treated.

Was you head injury serious? I recently learned from an ALD Connect teleconference call for men with AMN that head trauma (moderate to severe) can initiate adult ALD. I don't want to alarm you but I wanted to get this information out there for those who are unaware. I surely didn't know.

monkeybus profile image
monkeybus in reply to SongStream

Had a lump on my head where I hit it, the lump stayed for days. Not sure if that is enough to trigger cerebral armageddon.

Tinnitus, Like I say, had it since I can remember. I've read extensively on it. Tinnitus is a ringing across the brain. I believe it is connected to my disease, then again, our symptoms are so wide-ranging.

Tinnitus, I can live with.

Haven't posted much here these days. Unemployed, you see. No more long train journeys, jabbing away at my 'phone.

jolocny profile image
jolocnyVolunteer

Hello!

I've also had Tinnitus for many years, as has my sister. I only remember having a significant bang on my head 10 years ago, all others were just simple knocks. The level comes and goes for me but it's always there. I've also read that some meds can make it worse ... of course. Nothing about this disease is written in stone!

monkeybus profile image
monkeybus in reply to jolocny

I swear it's the disease. Had it since I was a kid. Used to get hiccups a lot as well.

Was just about to say I'll take tinnitus over chronic pain, but my foot has been hurting all day as well.

Woe is me.

jolocny profile image
jolocnyVolunteer in reply to monkeybus

I, thankfully, don't have any pain but also not much feeling in either leg/feet. Docs tell me that my nerves are pretty well stripped of myelin, so no pain. It's not always a good thing.

Sorry you are having foot pain today! Does moving them around (slow exercise movement) have any effect?

monkeybus profile image
monkeybus

The old peripheral neuropathy is weird. I don't need to tell you lot.

Stretching is best, I find. As is sitting down and doing nothing all day (I do a lot of that lately, I'm 46). I really should do more.

I just had a few days off the 4-AP, after several years of daily use. Even staggering to the toilet was a mission, a lot of stumbling and falling.

I always forget I have spasticity, soon remember as I lurch about, falling everywhere.

Equinney profile image
Equinney

I know it’s an old post, but have had tinnitus for as long as I can really remember. Just wondering if you found out anything about it being disease related? Hate being in a quiet room, makes it seem like the volume gets turned up.

Aaron98 profile image
Aaron98 in reply to Equinney

I've had tinnitus in my left ear, non-stop, for two years. It hasn't gone away for a second. I don't know for sure whether it is disease related, but it seems quite common for those with AMN. It can be pretty rough trying to fall asleep, with the high pitched ringing going on and on. But then, leg spasms and nerve pain in my feet and legs make that difficult, too. It's amazing sometimes that we don't all go insane.

monkeybus profile image
monkeybus

I forgot all about tinnitus. I still get it, but it comes and goes in waves. Lately, not too bad. Though it could be an almost dog-whistle style noise, other times it's a low, loud tone.

Like I said, I had it ever since I can remember. The hiccups used to really concern me. I'd get them daily for up to an hour at a time. What's all that about? Was the hiccups that first made me question my health. Not a lot I could have done about it anyway.

I read that if you have three or more tics then you officially have Tourettes. I'd certainly qualify for that.

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