Noise and fatigue anyone?

Hi,
sometimes i wonder how i manage to function. Went for a meal, lots going on, found it hard to concentrate and had to keep saying ‘sorry I did’nt catch that,’ and 'sorry, it’s the noise". Figured you guys would probly know what i mean.

I said b4 goin that I didn’t want to stay too long as I get tired. Stayed 3 hours which was ok, but with so much to concentrate on it has worn me out and been resting all afternoon.

I don’t think non avm people really understand the noise/fatigue thing.

Does anyone else really need down time in total silence with NO interruptions to stay well and sane?! And if so, how regularly?

flower
x

Dear Flower:

I know exactly what you are talking about. Friends and family just don’t understand and qiute often they get their feelings hurt when I say that I don’t want to go. When I am in a large group of people it’s like a merry go round and the words sound like lobsters when they first hit the boining water. I have seperated myself away from the group and started crying or just plain screaming. So far I have not been caught. My joints ache and I will spend most of my time in bed.

Flower,

This is my most difficult issue. I NEED total silence but rarely get it. I am constantly reiterating this problem to those closest to me to no avail. They don’t understand how noise, and it doesn’t have to be loud, can tax my energy. I am literally sick and tired of having to not only deal with this maddening symptom but also having to repeat to those near me my trouble when I don’t get things accomplished. Interruptions, things as simple as a phone ringing, zap my energy expotentially. I can feel my energy decline like I can feel a slap in the face. And loud, and/or unexpected noise is physically painful. It is like being slapped upside my head with a 2x4. It is that dramatic and fast. I am so tired of being so tired. Thanks for allowing the rant. I hope we come to find a solution to this symptom.

Kim

I KNOW EXACTLY WHAT U MEAN!! I teach fifth graders, and its nuts…the amount of noise made by 20 ten year olds is amazing…I leave work everyday ready to collapse…most days I barely make it to 3:00

I know what you mean, ladies. I often say that “I’m sick and tired of being sick and tired!” LOL All noises don’t bother me, only very loud ones or sudden unexpected ones. But at the same time,
I have trouble hearing, so I need people to speak up and to turn up up the television!


Kim Palmer said:

Flower,

This is my most difficult issue. I NEED total silence but rarely get it. I am constantly reiterating this problem to those closest to me to no avail. They don’t understand how noise, and it doesn’t have to be loud, can tax my energy. I am literally sick and tired of having to not only deal with this maddening symptom but also having to repeat to those near me my trouble when I don’t get things accomplished. Interruptions, things as simple as a phone ringing, zap my energy expotentially. I can feel my energy decline like I can feel a slap in the face. And loud, and/or unexpected noise is physically painful. It is like being slapped upside my head with a 2x4. It is that dramatic and fast. I am so tired of being so tired. Thanks for allowing the rant. I hope we come to find a solution to this symptom.

Kim

Hi flower:)yeah I’ve noticed too that I keep have to ask people to repeat themselves, very up and down as regards energy, one minute I think I can do anything then ten minutes later just crash:)sudden noises startle me alot!

Dear flower know exactly what youre taking about noise particuarly base drives me crazy . or high pitched noises people talking all at once or to many things happening and i cant concentrate i used to listen to music all the time now i have a fan running for white noise.activity of anytype can cause me to become fatigued. i like your postings and questions they make me think and i relly relate. if its too much noise i shut down completley and can’t concentrate or focus . plus i have nerve damnge in my ears. this is the secound i came upon and it was just a fluke it caught my attention.

hope this finds you well and your in my prayers.
sincerly smoke

I know what you mean. I don’t drive, so I have to commute to work, school, the shopping center, etc. where it gets really noisy, which makes it hard for me to concentrate when I try to study. Sometimes I have to turn on my ipod and turn the volume high up to keep from going nuts. I work as a secretary, and many times when I am on the phone I have to ask those who call in to repeat theirselves because I’m too distracted my my coworkers. Since I also have to ask my coworkers to repeat theirselves often, I do worry about annoying them and those that call in.

Had a huge problem with this soon after my cranitotomy. I was somewhat sensitive to noise prior to my rupture but afterwards…whoa…I am about a year out and do feel this has improved greatly…but I am still dealing with it

WOW! What an eye opener! My daughter is 10 months old and was diagnosed with an avm when she was 17 days old (has had four embolizations since). When ever we have big family parties she just cries and needs to be held and rocked constantly. I thought she was just shy because I’m a stay at home mom and she doesn’t interact w/ many people too often. Now I realize she probably can’t stand the noise and chaos of my huge family!

Yes I do find this and it can be very frustrating at times. It can be as few as four people including myself and I lose the coversation and find I really don’t understand what everyone is talking about. I am lucky to have my husband who explains things in private so I don’t feel at of place. It is very tiring and I am very fatigued after being in a crowd. Even during the day when I am by myself I need to rest alot. I push myself through the day and try to do what I can to keep my body active.

I have that ALL the time! Seriusly, when there are more than 2 people having a conversation I find it very difficult to get everything, translate it in my head and then manage to find an answer before the subject changes.
Glad you brought this up, knowing that I’m not the only one makes it more acceptable. We live in a lively neighbourhood with lots of kids and adults making a heck of a lot of noise, it does get painful… my solution is mostly to put on some music and make sure it’s loud enough to cover the outside noise.
I’m grateful for the summer vacation, it’s more quiet here then :slight_smile:

i can definitely relate to that, but i’ve always hated big crowds and loud noises. but the fatigue, it’s been 3 years and i still haven’t overcome that. i never have the energy i use to have.

Kerstin,

“Seriusly, when there are more than 2 people having a conversation I find it very difficult to get everything, translate it in my head and then manage to find an answer before the subject changes.”

Exactly!! The whole translation part is so on target. I also have to replay it in my head to get what was said. And the whole concentration part of it exhausts me.

I’ve noticed more and more that this stuff isn’t “normal.” I guess because I’ve dealt with certain things all my life, I just thought everyone had some of the symptoms I’ve had. I’ve had hearing problems and I always attributed it to my ear drum bursting when I was younger. My mom always said I had a hard time concentrating. I think it is because of my AVM. I also thought my bruit was normal and everyone heard there “heartbeat” in their heads. I have lived with it all my life so I thought it was normal. Also about the fatigue thing, I’ve been more fatigued then your average person but was always told it was being a teenager. However, when I looked at my friends, sure they slept a lot but they seemed to have energy at times when I had none.

Noise really increases the pain level for me from my AVM. I ended up having musician’s earplugs custom made for me. They have a 25 dB passive filter in them that is just like turning down the volume. Standard off the shelf earplugs knock out higher frequency sounds - such as female voices - and also distort the sound more. Before I got musicians earplugs I was really unable to get out of the house much because I can’t tolerate the noise levels of even a standard office environment. The earplugs have made a HUGE difference. I still don’t have much energy or stamina but at least I can meet a friend in a coffee shop or go to the doctor without feeling like I’m going to pass out from the pain.

Any audiologist should know how to order and fit them. Mine cost about $175 for the pair, which my medical insurance didn’t cover. Most of the doctors I spoke with didn’t know anything about these earplugs - fortunately before this happened I was a research engineer specializing in noise and vibration damping and also a musician so I at least knew the product existed and where to get them.

YES, You just described my life.

The problem:
I’m a Realtor and I am always on the ph, computer, in my home office shuffling papers, and files etc. My home office had louver doors which used to let in the noise from my two kids 3 & 6 playing and screaming throughout the house. I find it very hard to concentrate with background noise and it wears me out and causes a headaches.

The solution:
I went to home depot and purchased two 1" slabs of solid wood and screwed it over the louver doors and installed a lock. It blocks out 75% of the noise but it is now my sanctuary or as my wife calls it my “Man Cave” :slight_smile:

I can’t stand busy Malls or Costco on a Saturdays, I can never work in a Cubical or live in China. I would die. I defiantly need my down time in total silence with NO interruptions to stay well and sane.

And if so, how regularly?
Whenever I need to concentrate which is pretty much whenever I’m working or not taking time out to spend time with my kids.

I just got diagnosed a few weeks ago. I can totally relate. I get tired when I have to use my head a lot. That’s what I call it. Now I know it’s my AVM. I just need to be alone and do my thing quietly. I always thought I was an introvert, don’t like to be around people. But maybe it’s my AVM. People don’t think I’m an introvert, I talk a lot for my job.

I get mentally tired all the time. I have to do things at my own pace. People around me are like “hurry up”. I just can not work like that. If I do I will mess something up &/or stress myself out until I have trouble thinking or else have a seizure.

I have the same problem; if I push my brain too hard I get auras and I just go blank… I have to pace myself with everything. frustrating but it is what it is unfortunately.