I've noticed over the past few months that I have become extremely sensitive to sound. The volume that my family watches tv is way too loud for me and I feel like I have to be 3 rooms away just to have a conversation with any of them because the volume at which they speak is now offensive to me, too. Now I find myself going shopping during off-peak hours just to avoid the sound of crowds and restaurants are nightmarish for me. It's gotten to the point that I have to retreat to my bedroom just to detox from sound as it is starting to make me feel physically unwell complete with rhythmic muscle spasms that occur with sudden loud sounds. Sensitivity to sound is called hyperacusis and I'm pretty sure this is related to the CIDP and was wondering if anyone else has experienced this.
I do-
Not always but some I will now be aware
I had this too. Not as bad now, but still don’t like anything too loud. Quite startling. I think all of our senses are affected.
I unfortunately also suffer from this along with sensitivity to light, but I have attributed it to my migraines. That said I did not start have the migraines until the CIDP showed up, and even in remission I still have the migraines. They are better with 250mg to Topomax daily but still have 24/7 headache that is not debilitating to live with.
The Topomax is starting to lose its effectiveness I've been on it so long, and the migraines are becoming more frequent again. So I need to confer with Neuro to see what else can be done that I do not have reactions to.
May you find Peace, and good luck with the Headaches.
I have sensitivity to everything. More sound in the room, I can't hear what others are saying. Can't stand noise, eyes sensitive to light. Your are not alone. Thank goodness for this site.
I have severe sensitivity to sound also. I cannot stand clanking of spoons/forks, etc. against bowls and plates and also cannot stand hearing the clanking of dishes beings washed! Also, when my family has the volume of the TV up too high it seems like I can't hear it at all because I'm cringing over the volume. Of course these things don't seem to bother others in the house as much as me. I'm also startled very easily by loud noises. All of this is new to me over the past few years since having the CIDP symptoms. The sensitivity to light accompanies the sound issues when I have my migraines, which come a couple of days a month just to make life a bit more miserable!
Ditto. I concur with all of the above. I have uncomfortable reactions to:-
Noises, especially sudden noises, and they don’t have to be all that loud.
Bright light is also debilitating, especially when constantly varying, like travelling along a road in bright sunlight with trees on the side of the road, or even the sun going in and out behind clouds.
Strong odours like pungent chemicals or incense.
Sudden movements, especially through the peripheral vision. I can only watch a little TV, and only as long as it doesn’t involve much action.
Having to step outside my “comfort zone”.
I could go on and on but I believe that most of you know it all anyway even though the symptoms do vary considerably from person to person.
Everyone over 50 has a sensitivity or desensitivity regarding hearing...well, almost everyone. Unless you can tie hearing problems to meylin depletion it is not CIDP. CIDP is only one thing.
Want to dig in, don't start here. Work backwards from terms on this page
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone....
And, the accompanying pics are great!
Did it start after your diagnosis of CIDP?
mabes said:
I do-
Thank you and likewise!
bteeter said:
I unfortunately also suffer from this along with sensitivity to light, but I have attributed it to my migraines. That said I did not start have the migraines until the CIDP showed up, and even in remission I still have the migraines. They are better with 250mg to Topomax daily but still have 24/7 headache that is not debilitating to live with.
The Topomax is starting to lose its effectiveness I’ve been on it so long, and the migraines are becoming more frequent again. So I need to confer with Neuro to see what else can be done that I do not have reactions to.
May you find Peace, and good luck with the Headaches.
Yeah, the sounds of dishes drive me nuts, too. I've had migraines for decades, but the hyperacusis has only been in the past 6 months or so. I've always startled easily but never really attributed it to anything in general. One other weird thing that I have which I was told was due to my MS is sound induced phosphenes and it seems like they act up worse when I am most sensitive to sound. Go figure! :)
Cookie said:
I have severe sensitivity to sound also. I cannot stand clanking of spoons/forks, etc. against bowls and plates and also cannot stand hearing the clanking of dishes beings washed! Also, when my family has the volume of the TV up too high it seems like I can't hear it at all because I'm cringing over the volume. Of course these things don't seem to bother others in the house as much as me. I'm also startled very easily by loud noises. All of this is new to me over the past few years since having the CIDP symptoms. The sensitivity to light accompanies the sound issues when I have my migraines, which come a couple of days a month just to make life a bit more miserable!
I am hopeful that I will soon have some better answers, as I was invited to come to the Mayo Clinic. I have an appointment in late September and am supposed to be up there for about 2 weeks. Maybe even something for the migraines too. One can hope:)
Sunshine said:
Thank you and likewise!
bteeter said:I unfortunately also suffer from this along with sensitivity to light, but I have attributed it to my migraines. That said I did not start have the migraines until the CIDP showed up, and even in remission I still have the migraines. They are better with 250mg to Topomax daily but still have 24/7 headache that is not debilitating to live with.
The Topomax is starting to lose its effectiveness I've been on it so long, and the migraines are becoming more frequent again. So I need to confer with Neuro to see what else can be done that I do not have reactions to.
May you find Peace, and good luck with the Headaches.
Yes it did, months after the onset. I have hypersensitivity with light as well. At one point I felt the need to duck from shadows. It definitely got much better as the rest of it improved. I am almost normal again, but if I do too much the sensitivity comes back. I have cranial involvement which I assumed caused the sensitivity to light and sound. I never asked specifically though, so I am not sure if cranial is the cause.
Sunshine said:
Did it start after your diagnosis of CIDP?
mabes said:I do-