char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
My sensitivity to noise is getting worse-markedly.
Yesterday, all I wanted to do was hide in my dark and quiet room which wasn't an option.
I can hear air ducts where it is hard to sleep.
Getting real stressfull to talk of phone, use microwave(don't let me get hold of the guy who designed microwave to beep 4x when time is up)
Getting hard to be near family. they ARE loud which I think is related to their lyme.
I am heading to urgent care to have them look in ears for infection.
Has anybody had ear sensitivity herx? LLMD last wk was herx and gave abx break; done very few if these breaks.
Posts: 1230 | From US | Registered: Nov 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
Know exactly what you mean. I actually went out and bought earphones....the kind construction workers using jackhammers use! Yes, I look like a nut but sometimes the din gets so loud, it's my only salvation!!
{I hope the neighbors don't see me LOL}
Posts: 867 | From PA | Registered: Jan 2006
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posted
Yes, my hearing is very sensitive. I am forever telling my hubby to lower the volume. When he whistles anywhere within hearing distance, he might as well be sticking a nail in my ear, it hurts so much. Another wonderful part of the disease. He also has Lyme, but doesn't have sensitivity. Some days I wish he would so he would know what I'm talking about!
I also have a very sensitive sense of smell. Cooking odors make me sick; so much so that sometimes I go outside to get away from them And forget the candle or perfume isles!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Char
Yes ,I am also hearing & noise sensitive.
It comes & goes.Thank goodness.It is always much times worse on my abx.
And the days I am off abx I am getting much better.
The ticking of our clock's in our house bothered me.I had to replace them all with quiet sweep hands.
Before I got lyme I had been to many concerts.
I went to an Elton John concert I had been looking forward to forever.
And between the flashing lights and the loud music(WE where even far away in the rafter's too) I spent the entire time in the hall siting by myself.While the party of eight friends I was with and the 5000 fans inside made me feel like a total freak.
To this day that still haunts me.
I like the head phone idea.! Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Yes! My hearing sensitivity is one of my major symptoms. It is a constant yo-yo of TV volume around our house. I have a dog that tends to yip out of nowhere and scares the be-jesus out of me.
I can go through the roof if someone slams the door or puts something down too hard on the table. With a herx, the world gets so shrill that I too want to hide.
But....it seems to be getting better with treatment so there is hope. Actually, there is always hope. Posts: 460 | From Illinois | Registered: Aug 2005
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HYPERACUSIS AND LYME DISEASE Lyme disease patients can experience an extreme sensitivity to sound, also known as auditory hyperacusis. In some patients it is limited to louder sounds, but in the more severe cases "ordinary" sounds can be very debilitating. The impact can be felt throughout the body, and this symptom can affect every aspect of daily living. Patients can experience heightened awareness and an inability to tolerate conversation, running water, page turning, the humming of electronic devices, other people's breathing, etc. These normal everyday sounds become painful and unbearable, and as a result the individual's ability to leave the home is greatly limited. Sounds can also induce dizziness, and this is called Tullio's phenomenon. According to Jenifer Nields, MD, "This peculiar short-circuiting of the inner ear's auditory and vestibular functions is known as the Tullio phenomenon. This phenomenon has been deemed pathognomonic for syphilis (43) but, as it appears, can occur in Lyme disease as well (41), and thus provides one more example of the "new great imitator," Lyme disease, imitating the old "great imitator," syphilis (1)." (Psychiatric Quarterly, Spring 1992)
Sometimes another central auditory processing disorder, tinnitus (buzzing or ringing in the ear), can accompany hyperacusis. Lyme disease patients can also experience sensitivities to light, smells, taste, touch, motion and/or temperatures.
Treatments: The best treatment is often determined based on trial and error, and the results vary from patient to patient. Treatment can include a combination of sound avoidance, sound reduction devices, relaxation, medication and nutrients. The use of ear protection is an individual decision and can be complicated. On the one hand ear plugs can cause a vicious cycle where the brain adjusts and becomes even less tolerant to noises, but on the other hand some may find it absolutely necessary. Some patients like ear plugs, but others prefer headphones such as Shooter's or Bose.
It is important to discuss all treatment options with your physician. In the case of Lyme disease, hyperacusis may or may not resolve or reduce with antibiotic treatment, and other treatments may also be necessary. There are some psychiatrists with expertise in Lyme who are knowledgeable about the different treatment options for Lyme-induced hyperacusis. There is no drug specifically designed for hyperacusis. The following medications used for this condition are considered experimental:
posted
Hi-Yes this, I have found out recently, is a big lyme symptom...My son has had this most of his life and wears heavy head phones to buffer noises...This is also a part of autism, which he has, but llmd said it is definetely related to his lyme....He also is light sensitive, hyperacute smell...All his senses are heightened...I pray as treatment progresses it will fade for him...There are some treatments that you can do...One we did 15 yrs ago was auditory training....Did not help his hyper but helped his receptive language tremendously....Someone also sent me a PM regarding Viennatones. It is very expensive, but an option I will look into if things do not get better. Cant afford it right now with other medical bills.
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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posted
I am sound and light sensitive. Worse when herxing. Comes and goes. I have VERY loud neighbors. Hard to deal with at times. Anxiety seems to go along withit. Comes and goes.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi char,
How's this for a combo? I have tinnitus and mild hearing loss in my left ear (started post-Lyme, so it may be due to LD), and tend to get stuffy ears on both sides, so I was hearing less than most, but what I was hearing was irritating the heck outa me!
I like that phrase, "the impact can be felt throughout the body," because I think that describes it pretty well -- it's not that I was hearing more acutely, just that hearing was more upsetting. Yeah, there were times when I plugged my ears when it was too much.
Then, as I was feeling better, I noticed one day that I could take in the different volumes and sound textures of daily life without feeling overwhelmed. I have seen the same thing in my son. I'm thinking that there is something in the brain that processes how we receive sound, sort of a mental filter, and that Lyme can mess it up.
Take care, put the pillow over your head! Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Ebrichoux-
My son with Asperger's has always had the ear sensitivity, too.
Lyme has made it worse, so I am hopeful it will improve some.
I want to be alone where it is quiet and am thinking this may be part of why those with autism enjoy solitude. I crave it right now.
Also, I do not like talking because I can hear myself and the vibrations in my head from it.
I am a talker so I still talk, but I do get irritated, worn out,and nasty with extended conversations, whichhappens with my son. Unless the conversation is about classic cartoons!
How is your son doing? Did he get a picc or start bicillin? I seem to remember you getting ready to do some sort of lyme treatment like that.
posted
Absolutely! It also gets worse with certain abx. Maybe because it is working...penetrating the brain. That's why antidepressants can help...because they reduce stress, but I wouldn't use them because there are too many potential complications and interactions with abx. I have read in so many places from top Dr's how important it is to wean off antidepressants, but I would love to have the benefits that they can give from this problem.
Posts: 132 | Registered: Jul 2005
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bettyg
Unregistered
posted
YES, my noise/sound, lights/glare/reflections, and chemical sensitiviity is the pits! All super bad, and even more so on the doxycycline!
Talk about noisy neighbors: we have 1-19 yrs. old neighbor who has a STOCK RACING CAR plus his friend has one 2! They keep both across the street, and I recently me with our local police dept. about this situation. They even have the drag-ster mufflers on their private cars!
I am going to look into buying me BOISE headphones per someone recommending them to me. I have the construction headgear, but I still heard too much. I'm constantly yelling at hubby to turn tv down. He has NO hearing 1 ear & wears hearing aid in others.
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I absolutely believe the hyperacusis my son has is due to lyme....It has not gotten any worse since starting lyme treatment...and I absolutely believe the reason why my son isolates himself from everyone is also a large part due to the hyperacusis.
I would love for him to one day not have to wear these headphones...but for now it means the difference from being a hermit or being able to go outside our home...
He has started mepron/zith 9 days ago and seems to be doing well with it....MUCH HAPPIER, a bit hyper, but if he was 10 it would be normal running around and jumping. Being he is 21 it looks hyper....He has to be feeling better is all I can think.....
I believe he has lived with so much pain for so long that he cannot verbalize the pain...I think he thinks this is how everyone must feel....
He has a nice rosy glow to his cheeks again....Something I have not seen since he was really young...
His OCD is just awful tho....He seems to add new things to his reptoire on a daily basis....It takes 1/2 hr to just get out of the house because he has to do his ritual....This is all new since starting lyme treatment....
His LLMD told us that anything that gets exasberated is a result of the lyme infection...
I was told that Bart can cause OCD, Rage, and he has the Bart stretch mark rash that comes and goes too....
I hope when he is treated for the bart the OCD and rage will go away...
I have to say that with the exception of two times since starting Mepron/Zith he has not had the rage...both times I was able to nip it in the bud before it got out of hand...
Altho he seems like a spoiled kid right now because I try really hard not to rock his boat..Not what I am used to but gotta do what ya gotta do....
I have been trying to really help him detox with baths and I also started using cumanda and burbur...He is getting zinc and magnesium also...So that in itself should help with the rage...
LLMD said we should see herx around week (3) so not sure how that will go...I dont know if I want to see the herx or not....
No herx..Is medicine working? Herx....It is working? Double edge sword with this one....
Thanks for asking about my son....How has your son handled all this?
EB
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
BettyG.-
It is a good thing they are not acroos the street from me right now...
E-
I am happy to hear that things are looking up for your son. My daughter got some color in her cheeks last few days and it does give a mother's heart joy after yrs of sickly.
My son is improving. He was so cranky it was miserable to be around him. (rages also) Dr took him off abx for 2wks. He has not had long break like this for almost yr.
Really chipper now. It is kind of blow away. He has been waiting on his sister and I like a little butler when we ask him to do things for us as we are worse than him this week.
He waits on us and helps us just like I do for him when he is sick. It is cute and I see a benefit of what we are going thru- He has seen a lot of helping people that he is now imitating. Really did not notice us or our needs in past. So I feel he will be a little better equipped for life. Has been listening to movie soundtracks and playing playstation endlessly which we will eventually try to cut down. I can only fight so many battles. I am having trouble imagining him tolerating a half day of school in fall. Starting IEP process.
He does come across younger, but he keeps making progress. I used to work at sheltered wkshop with DD adults and it was amazing how they continued to gain skills in communication and really every area as we continued to offer opportunities for learning. I bet your son will take off as he feels better. Poor baby.
Maybe too long. Not many folks bring up Asperger's issues.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Oh, char and betty! I gotta laugh, because a lot of what you are describing sounds like my son, who does not have Asberger's, but does have Lyme!
I often say that it is hard sometimes to know where the rebellious teenager ends and the Lyme begins -- perhaps you are also seeing that it is hard to see where the Asberger's ends and the Lyme begins.
I hope you understand that I mean no disrespect, nor am I belittling how hard it must be to work with an Asberger's kid with Lyme. (I know a couple of Asberger's adults, and am mildly familiar with the condition.)
But I also make a hundred little negotiations with my kid each week, as I feel out how much of his problems on any given day are Lyme-based, and how much are just because he is an immature teen. And he can be so self-absorbed, it is almost miraculous when he notices that he is not the only one that could use some help now and then!
I guess the bottom line is, disease or no, we are just trying to raise our kids to be the best people they can be, even if they have to work a little harder at it than others.
You guys have my respect, big time. Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Shaz-
Thanks.
Hearing loss plus sensivitiy! That's a kicker.
Posts: 1230 | From US | Registered: Nov 2005
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posted
Its my understanding that noise, particularly constant noise/background noise is stressful to the body whether or not one is aware of it.
So adding another stressor to an already stressed out body (fighting infections etc)understandably results in overwhelm.
While I can now tolerate more stimuli (afer almost 3 years of lyme and babesia treatment) I still prefer quiet peaceful surroundings as a general rule. In fact, I always have.
Posts: 925 | From California | Registered: Sep 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dolphinlady-
Thankyou for the good news that it gets better with treatment.
I got in to my md and she gave me some zyrtec with sudafed, and some ear numbing drops.
I wanted to kiss ear for giving me the drops.
But I haven't used them because the zyrtec is helping quite a bit. Not perfect, but much better.
I am surprised, but I will take a simple solution any day.
posted
I have major sound sensitivy as well as smell and taste. I can smell like a dog these days which is not altogether an asset believe me since I have a dog and a cat who are both given to large explosians of gas from time to time. I am also a human smoke detector.
Also I have enhanced reactions to both music. movies, people, the news and pretty much everything else: cry, laugh, get furious, be contented, be miserable, get happy, all from one minute to the next. It is like being on a roller coaster ride all the time.
Lyme for me has turned me into a walking nerve ending which I guess is normal considering the ketes have laid siege to my nervous system.
Lyme the-dog-smell lady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, dog-smeller
That starts sounding more like rapid-cycling bipolar, which I've heard is yet another -- you guessed it -- symptom of Lyme.
I used to tell my significant other, "Listen to what I'm saying, I mean it. Just disregard the extreme emotion I'm saying it with. That's the Lyme talking."
Don't buy any of those women's magazines with the scent samples....
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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