Strange new symptom, anyone else had it

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Jennifer51

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Joined
Jul 7, 2008
Messages
445
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Over the last month I have developed a new symptom. My hearing is TOO sensitive. Sharp sounds seem to bang around in my head and it is most unpleasant. For example I cannot stand being in the same room when the dishwasher is being emptied, but there are many times and situations during the day when this happens. Even my grunting reverberates within my skull. It is most unpleasant. I am also getting quite violent twitches go up my neck and into my skull, again most unpleasant. Anyone else get this or any ideas.
 
I really am bothered by loud sounds, etc.. I attribute much of it to the startle reflex... I really do think that put's the senses on overload, and everything is really intense. I feel for you, and am glad you are back.
 
Jennifer, I'm getting pretty violent twitches in my arms and neck (under jaw line and face) but no problems with loud sounds.
Great to have you back.
 
Hopeing for a cure...I have always been bothered by loud noises due to the startle reflex..it is the only time my legs move.....but this is different, it is gross, like the inside of my head is like a tight drum skin and it vibrates with anything above normal volume sound,,,,I just cant sit in a room full of people all talking and laughing...it does my head in and I need to leave....
 
Wow, Jennifer, that sounds quite dreadful.

I have not experienced any hearing distortions (yet), but my taste and sense of smell are hyper intense again. I had this two years ago, then it went away. I normally rinse my mouth under the kitchen tap a few times a day, and the taste of water has been horrible. Nobody else notices anything wrong, and our tap water is "supposed" to be among the better in the US. But I can taste at least four or five distinct chemicals ... have no idea what they are. They are overpowering, bitter and acidy. Other "earthy" odors affect me intensely, too.

You have my sympathies on your latest symptom. Whoever said the senses are not affected by ALS was nuts. Probably the same clueless doctor who said there is no pain associated with it.
 
hearing

Hopeing for a cure...I have always been bothered by loud noises due to the startle reflex..it is the only time my legs move.....but this is different, it is gross, like the inside of my head is like a tight drum skin and it vibrates with anything above normal volume sound,,,,I just cant sit in a room full of people all talking and laughing...it does my head in and I need to leave....

Hi Jen, I have noticed a loss of hearing . I seem to always asking Rich to repeat? Also My ears seem to plug. sometimes, like when you come down out of the mountains? I can be anywhere and that will happen... I am so sorry to hear that you are having a hard time right now. I cried when I read your email to me. Sometimes it is truley hard to stay positive... I tell mayself tomorrow is another new day... I try and do something everyday that makes me feel good.... Big HUGS, Lin
 
Hello Jennifer , yes , I too have the symptom of too sensitive hearing , I nearly leap out my skin at any sudden noise , and I find being in a crowd or a room of chatty people very uncomfortable .
Another symptom I now have is jaw clamp spasms , my neurologist says it's part of MND but not everyone gets it . I hate it when my cheek or tongue is bitten !
 
I'm very jump around sudden, loud sounds. Lately, if I strike a piano key too hard, that will startle me, too. I also have this odd reflex where my throat muscles jump when I hit a piano key with my left hand.

Zaphoon
 
funny or sad

:smile: Reading through all of our symptoms ...it could almost be funny if it wasn't so sad? Lin
 
Ref my extra sensitive hearing problem...went to my mnd clinic yesterday and told my lovely neuro..he immediately sent me off for a hearing test...which was good for my age, then they did a sensativity test....it was well off normal, so combined with the fact that my head spins at the slightest provocation, I have an appointment with an ENT man to check out what is going on...will report Tich1 will PM you as you have similar problems

Out of interest, my neuro, who is well into research, has a drug at mouse stage, and we are also participating in a new study where he is hoping to produce a TEST for MND/ALS instead of the illimination route...we just give blood evbery 3 months..me as a PALS, my husband as a control as a CALS
 
Hi Jennifer , that's very interesting , I see my neuro in October but I may mention it to my care team doctor before then . I'll be interested to know what your ENT doctor says and finds . xx
 
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