Anyone else have problems with sensitivity to sound?(especially sudden change in sound or higher pitch noises? I have never had any surgery for my AOVM due to the locations and recall years ago reading this was a symptom. Thanks.
I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Sound+sensitivity
Hello Happy13
Yes but I had it prior to my fistula I was diagnosed with menieres disease my mom and sister also have it
But after my fistula I can not be in crowded loud room and certain sounds put me off
My fistula is near my left ear but all the sensity is with the right ear and if I sleep on it I will wake up with a soar outer ear
Angela
Yes, I do. It's all loud noises for me. I can't even handle kids playing in a room and being loud. It drives me bonkers. For me it started 2 1/2 years after I had GK. Mine is deep within the left frontal lobe near the basal ganglia. If that means anything.
I am currently looking for support in regard to family understanding. There is more of an attitude of "we won't change for you but you have to understand we forget". I understand that people forget but the hard thing I have is my family has never really "dealt" with things. Anyone know if there is any kind of aids out there to help people with sound sensitivity? There is ALOT to read on here and I am new to the site and since I struggle any help is appreciated. Thanks
I haven't heard of any help for sound sensitivity. If I knew more of which family members you are talking about, I might have some ideas for you. I can understand they forget or the get wrapped up in what they are doing. I think out of love and respect for you, they should listen when you remind them. This isn't one of my best ideas -- but, it's the only thing I can think of at the moment -- You could keep some disposable ear plugs on hand and use them when you need too. I use to have to wear them every day when I use to work and they really aren't bad. They are a small foam that you squeeze and put in your ear. I'm not suggesting you use them all of the time but, it would give you some reprieve when you have no other options. Even though they are disposable, you can wash them. I use to purposely leave them in my pants pocket when I did the wash and they came out clean
(smiles).
Ben
I'm sorry, I should have read your profile first. I saw where you live with you parents. So I'm assuming these are the family members you are referring to(?).
Do you have any dr appointments coming up or can you make one? If so, take your parents with you and maybe the dr. can get them to understand it better. And/or you may want to consider getting some counseling to help you with this. There's no shame in getting some extra help. I had to see one when I first became disabled. -- To help me learn to accept it, and cope with the fact my life has changed from the way I knew it. I was very reluctant at first but, it turned out to be a blessing in disguise and she helped me a lot. Of all people who referred me to her, it was my neurologist (smiles). Who specializes in involuntary movement disorders .
Ben
Hello . Sound hurts me . Loud sounds drive me away . I have ear plugs with me always . Most people can not understand it until you beat a metal pot with a spoon while the pot is on their head . A good ENT is necessary and a Neuro ENT is priceless . There are many types of ear protection and plugs you can try . Some people use the earphones that musicians use . Don’t expect any understanding from others as it’s difficult to comprehend for those who don’t have this issue . I also have a hyper sensitive startle reflex so unexpected loud sounds are vicious . I developed tinnitus immediately after my incident and subsequent surgeries so I have an assortment of noise always which is made worse by external noise . It is as tho the internal noise competes with the external noise . My AVMwas in the occipital / parietal lobes and blew itself up by way of introduction and I had an embolization with radiation followed by a craniotomy to excise the AVM . This was all on an emergency basis as my brain was bleeding . Of course there was temporal lobe involvement . I was left with a complete left side homonymous hemanopsia ( NO left peripheral vision in either eye , so I’m half blind ) and a bit of hearing loss ( which the ENT’s tell me brings me to regular hearing levels) . I give all of this detail because it all involves hearing and seeing which are intertwined . So find a reputable / experienced ENT who can refer you to a Neuro ENT ( Maybe one who knows AVMs) and get some help . Your Nuero team should be able to assist you . As for educating people in compassion for others situations well , there’s always a metal pan and spoon .
used to drive me crazy. not so much anymore. one time I was sitting at my father's and someone turned on the coffee grinder, I almost went through the ceiling.
My mom comes with me. She also comes with me to family counseling. My dad doesn't want to be a part of it(has his own issues). My sisters both came once but nothing has really come of it. I have no problems going to counseling(I have been for years now) but I don't get much help when it comes to actually being able to deal with things at home. I have had a lot of bad experiences since I moved here and I am just trying to build some sort of friend base. Support is important so I kinda feel like I'm in this alone.(I am not looking for pity but just a little more understanding/compassion.
I don't have much of a Neuro Team. Due to the location of the avms(they actually called them AOVMs) they don't want to perform any procedures as it could do more harm than good. I will try to see what I can find.
I’m still so sound sensitive 4 years after my bleed that I wear musicians earplugs pretty much all the time I’m outside of my house (or any other environment I can’t control). I don’t expect others to accommodate this although the friends who get that this is a problem will make an effort to choose restaurants that tend to be quieter if they know I’m coming. I also have a pair of shooting earmuffs which I will wear OVER the musicians earplugs if I go somewhere I know will be loud. I have earmuffs for my service dog now too, so we matched when we saw the Hobbit at the extremely loud IMAX theater. My plugs and muffs make me look kind of silly but I’m so grateful to have figured out a way I can still participate in things that I used to love but are too loud for me now without protection.