Anyone else struggling with these two particular annoyances?
I have to have ear plugs in my pocket, read-to-go at all times now (restaurants, church, all public places, even while watching TV at home sometimes) and it can kick-in with the slightest, unexpected trigger (water faucet going on, someone dragging a chair, clink of a glass, etc.).
As far as sensitivity to light, sunglasses have become a permanent accessory. I have to take them with me to church for during the worship music time (due to high tech lighting system), wear them while driving early mornings and at night (due to headlights), and coming from inside to outdoors the initial bright sunlight overwhelms me.
Because of these issues, I have trouble with some dvds and blu-rays at home (fast, quick-cut editing, bright lights, explosions, etc.) and have not been able to go to a movie in a movie theater for 6 months now. My wife and I finally tried a DRIVE-IN movie and THAT was fine for me (I could control the volume myself, and the lighting is far more dim at a drive-in movie).
I also learned that these issues are common with those that have autism, and wondering if there is a connection of some sort between CM and Autism.
As far as sound goes I get easily overwhelmed when a lot is going on. I have trouble focusing on one sound when there are others around. Like if I'm talking in the car and the window is down I can't tune out the noise from air blowing in. In a restaurant I hear snippets of 100 conversations but will miss a lot of my own.
I do have a lot of light sensitivity but I have extremely light grey eyes. I know light eyes are more sensitive to light so I can't really say it's chiari related. I do know my pupils stay dialated all the time which caused my trouble in high school...I had several teachers pull me aside to ask if I was doing drugs. lol
I too have trouble with lights and sounds. Sunglasses are also a permanent accessory and I never let sunlight in my home. My husband jokes that I live in a cave, which is pretty much what it feels like. On my good days when I don't have a persistant migraine and the headache is tolerable enough we can open the blinds for a while, but only during certain times of the day when the sun is mostly blocked by the tree outside. I have light blue eyes but the sensitivity to light wasn't this bad as a child/teen. As I got older and my symptoms started showing up, the light sensitivity got to an extreme point. If I go even a few seconds without sunglasses, I pay dearly via a migraine and throwing up. The sound problem is the same as both of you. I have difficulty focusing on multiple noises and I have to have a fan on to sleep. Otherwise I hear every noise in the neighborhood and my ears ring profusely. The fan really helps me to sleep (when I am not suffering some insomnia anyways).
On a side note, I also have fluxuations in my ability to see or hear period. There are times at random when my vision or hearing goes away completely (not usually at the same time) that is easiest to visualize as someone turning the lights off slowly with a dimmer switch or turning the volume down on a TV or radio. Luckily it slowly fades back in so I can see/hear again, but I get so afraid every time it happens. What if it doesn't come back? I'm home alone with my two young daughters and fear what would happen if I couldn't see or hear.
Sound has always bothered me at times. It wasn't until this year that I made the connection to Chiari. The water hitting the shower curtain in the morning sends me through the roof. My family has complained for years that I have super hearing.
I don't notice light sensitivity as much. Only if I have a bad HA.
If you want to check it out, there is a big discussion on the WACMA yahoo group about whether there is a connection between Chiari and Autism.
Sound at the Movies ! is So Intense.. I found out when i went on a first Date.. It was not as much Fun as i had Hoped for.And It Hurts too. its not just a Bother. and Lights Hurt as well, The Sun light is so Painful at times i have to either not go out at all, or Wear Sun Glasses and just take the Drugs to get through it.i find it very Difficult and Painful to be around a T.V turned up very loud..So Yes As you can see Others are having the same Issues. and i wish i knew what to tell you to make it Better.. If I only Knew...Good Luck to you
Funny you talk about Super Hearing !.. I've had the Same thing told to me by my Family and Friends..
Norma j
Diana Smirl said:
Sound has always bothered me at times. It wasn't until this year that I made the connection to Chiari. The water hitting the shower curtain in the morning sends me through the roof. My family has complained for years that I have super hearing.
I don't notice light sensitivity as much. Only if I have a bad HA.
If you want to check it out, there is a big discussion on the WACMA yahoo group about whether there is a connection between Chiari and Autism.
Thank you for the reply. It helps to know I'm not just being a hypochondriac loon. As I am typing this to you, the sound of the battery-perated clock ticking in my office teamed with a bird chirping out the window from ACROSS the street are both driving me nuts when compiled with the sound of the keys clicking as I type this reply. Whe you mentioned the sound of the "the water hitting the shower curtain in the morning" setting you off, I could SO relate! Just the sound of my wife turning on the faucet on the kitchen sink while I'm setting at the table in the morning would force me to grab for my ear plugs and the Diazapam I've been prescribed (5mg tablets, and I'm to take HALF of one, every six hours as needed).
Two further questions for you:
1. Have you had the decompression surgery? I have not.
2. What medications gave you been prescribed and do you take them when these attacks happen?
-Brad
Anglyn said:
As far as sound goes I get easily overwhelmed when a lot is going on. I have trouble focusing on one sound when there are others around. Like if I'm talking in the car and the window is down I can't tune out the noise from air blowing in. In a restaurant I hear snippets of 100 conversations but will miss a lot of my own.
I do have a lot of light sensitivity but I have extremely light grey eyes. I know light eyes are more sensitive to light so I can't really say it's chiari related. I do know my pupils stay dialated all the time which caused my trouble in high school...I had several teachers pull me aside to ask if I was doing drugs. lol
Your situation sounds FAR worse than mine, I'm very sorry to say. I'm not QUITE a "cave dweller" yet, but I'm noticing things getting worse rather than better at an uncomfortably escalated rate. Just watching a movie w/car headlights in them is now bugging me!And i have ear plugs in my pocket all the time for when something sets things off.
However, I am extremely concerned about your mentioning your LOSING the senses of light and sound; the "fade-outs" you mentioned!! If this were happening to me < i think I'd be getting over my apprehension of hav9ing surgery pretty darn quickly! What are the docs telling you about this????
Two further questions for you:
1. Have you had the decompression surgery? I have not.
2. What medications gave you been prescribed and do you take them when these attacks happen?
-Brad
-Brad
MommyofTwo said:
I too have trouble with lights and sounds. Sunglasses are also a permanent accessory and I never let sunlight in my home. My husband jokes that I live in a cave, which is pretty much what it feels like. On my good days when I don't have a persistant migraine and the headache is tolerable enough we can open the blinds for a while, but only during certain times of the day when the sun is mostly blocked by the tree outside. I have light blue eyes but the sensitivity to light wasn't this bad as a child/teen. As I got older and my symptoms started showing up, the light sensitivity got to an extreme point. If I go even a few seconds without sunglasses, I pay dearly via a migraine and throwing up. The sound problem is the same as both of you. I have difficulty focusing on multiple noises and I have to have a fan on to sleep. Otherwise I hear every noise in the neighborhood and my ears ring profusely. The fan really helps me to sleep (when I am not suffering some insomnia anyways).
On a side note, I also have fluxuations in my ability to see or hear period. There are times at random when my vision or hearing goes away completely (not usually at the same time) that is easiest to visualize as someone turning the lights off slowly with a dimmer switch or turning the volume down on a TV or radio. Luckily it slowly fades back in so I can see/hear again, but I get so afraid every time it happens. What if it doesn't come back? I'm home alone with my two young daughters and fear what would happen if I couldn't see or hear.
I'm right there with ya with the problem of focusing on sounds in a restaurant, and the car window thing. Just today, my wife were going out for a celebratory "Yay, wer're both done with school " late brunch (we're both teachers). As I got our of the car to walk the 40 yards to the restaurant, a truck drives by as I'm walking (eyes focused carefully on the sidewalk below me so that I do not trip) and the woosh of the truck just set my symptoms of hyper-0sensitivty in motion, along with the wooziness (sea legs) for the remaining steps to the cafe. I had to literally stop and ask my wife to go back to the car for me to get my cane, which I'm trying NOT to use whenever possible, but I would not have made it the rest of the way to the cafe without it.
Two further questions for you:
1. Have you had the decompression surgery? I have not.
2. What medications have you been prescribed and do you take them when these attacks happen?
Anglyn said:
As far as sound goes I get easily overwhelmed when a lot is going on. I have trouble focusing on one sound when there are others around. Like if I'm talking in the car and the window is down I can't tune out the noise from air blowing in. In a restaurant I hear snippets of 100 conversations but will miss a lot of my own.
I do have a lot of light sensitivity but I have extremely light grey eyes. I know light eyes are more sensitive to light so I can't really say it's chiari related. I do know my pupils stay dialated all the time which caused my trouble in high school...I had several teachers pull me aside to ask if I was doing drugs. lol
I just recently saw the HBO film, Temple Grandin (OUTSTANDING movie btw!) and was shocked to find that this woman who was severely autistic also had severe issues with ssound. I am seriously beginning to wonder if autism and CM are both effected by the same part of the brain. I'm clearly NOT autistic, but the potential relationship between the two disorders is intriguing me.
Two further questions for you:
1. Have you had the decompression surgery? I have not.
2. What medications have you been prescribed and do you take them when these attacks happen?
-Brad
Susan J said:
I am definitely bothered by lights. When my headaches are worse, I spend my days in a dark room with a pillow over my head. Lights are a huge trigger.
Fluorecent lights are a sensory issue for some kids with autism. Flurecent lights both are bright, but they make a humming noise and for some kids this can be a huge trigger. Sound and lights are an issue because the sensory component. Sensory issues effect every child with autism different. I have worked with some that certain sound can be a trigger such as women's voices, bells, any loud noises. I have worked with some you like it the louder the better. In terms of light I worked with a student who would strip when she was on sensory overload. We unscrewed the flourecent lights in her corner. We saw 80% less stripping and disrobbing.
1. Have you had the decompression surgery? I have not.
2. What medications have you been prescribed and do you take them when these attacks happen?
-Brad
Norma Jean Fyffe said:
Sound at the Movies ! is So Intense.. I found out when i went on a first Date.. It was not as much Fun as i had Hoped for.And It Hurts too. its not just a Bother. and Lights Hurt as well, The Sun light is so Painful at times i have to either not go out at all, or Wear Sun Glasses and just take the Drugs to get through it.i find it very Difficult and Painful to be around a T.V turned up very loud..So Yes As you can see Others are having the same Issues. and i wish i knew what to tell you to make it Better.. If I only Knew...Good Luck to you
1. Have you had the decompression surgery? I have not.
2. What medications have you been prescribed and do you take them when these attacks happen?
-Brad
Norma Jean Fyffe said:
Funny you talk about Super Hearing !.. I've had the Same thing told to me by my Family and Friends..
Norma j
Diana Smirl said:
Sound has always bothered me at times. It wasn't until this year that I made the connection to Chiari. The water hitting the shower curtain in the morning sends me through the roof. My family has complained for years that I have super hearing.
I don't notice light sensitivity as much. Only if I have a bad HA.
If you want to check it out, there is a big discussion on the WACMA yahoo group about whether there is a connection between Chiari and Autism.
Actually Brad, I don't have a doctor. Long story short, I was being monitored for a possible MS diagnosis back in 2010. I've been suffering all my symptoms, and boy is it a long list, for about 8 years now. The migraines started about 12 or so years ago. My NL in Louisiana (in Dec. 2010) only did a CT to rule out MS and a tumor. He then tacked all of my numerous symptoms up to Fibromyalgia and gave me a medicine that would trick my brain into thinking there was no pain. It did NOT work....I later (Feb 2012) was rear-ended by some moron here in Texas and I had some whiplash from that and was seeing a chiropractor for physical therapy. By mid-march I decided that I should probably mention the fact that I am always in pain even before the accident. He asked me to elaborate so I told him how I was overdue for a brain scan to check on my possible MS diagnosis. So he then told me that I actually needed an MRI which made me mad, because that damn doctor in LA might have found this CM back in 2010! I could have had the surgery and been better when I actually HAD insurance and the ability to pay to get better! But no, he did only a CT and failed to help me. So on March 22 I went in for a MRI w/o contrast expecting to find out if I had MS and instead found out I have a 4mm CM that is the problem. I have contacted a couple NL's here in TX to see if they would be willing to do a payment plan with me so I can get fixed, but they want almost $500 to just walk into the office to discuss my MRI!!! I do NOT have that kind of money. I recently mailed the MRI disc and a letter to a doctor in Michigan who is a CM specialist and I am praying I get some response from her. Also I don't really have an apprehension to surgery, like most I am a little scared of the outcome and of the surgery itself because I have never been cut on before, but I am praying that something happens soon because I am sick of living like this. I am currently in one of my down cycles, I can hardly move without almost hitting the floor or vomiting from the pain. It is really difficult to be home alone with two young girls knowing that if something happens to me they are all alone, at least till my husband comes home from work.
Brad Hawkins said:
Your situation sounds FAR worse than mine, I'm very sorry to say. I'm not QUITE a "cave dweller" yet, but I'm noticing things getting worse rather than better at an uncomfortably escalated rate. Just watching a movie w/car headlights in them is now bugging me!And i have ear plugs in my pocket all the time for when something sets things off.
However, I am extremely concerned about your mentioning your LOSING the senses of light and sound; the "fade-outs" you mentioned!! If this were happening to me < i think I'd be getting over my apprehension of hav9ing surgery pretty darn quickly! What are the docs telling you about this????
Two further questions for you:
1. Have you had the decompression surgery? I have not.
2. What medications gave you been prescribed and do you take them when these attacks happen?
-Brad
-Brad
MommyofTwo said:
I too have trouble with lights and sounds. Sunglasses are also a permanent accessory and I never let sunlight in my home. My husband jokes that I live in a cave, which is pretty much what it feels like. On my good days when I don't have a persistant migraine and the headache is tolerable enough we can open the blinds for a while, but only during certain times of the day when the sun is mostly blocked by the tree outside. I have light blue eyes but the sensitivity to light wasn't this bad as a child/teen. As I got older and my symptoms started showing up, the light sensitivity got to an extreme point. If I go even a few seconds without sunglasses, I pay dearly via a migraine and throwing up. The sound problem is the same as both of you. I have difficulty focusing on multiple noises and I have to have a fan on to sleep. Otherwise I hear every noise in the neighborhood and my ears ring profusely. The fan really helps me to sleep (when I am not suffering some insomnia anyways).
On a side note, I also have fluxuations in my ability to see or hear period. There are times at random when my vision or hearing goes away completely (not usually at the same time) that is easiest to visualize as someone turning the lights off slowly with a dimmer switch or turning the volume down on a TV or radio. Luckily it slowly fades back in so I can see/hear again, but I get so afraid every time it happens. What if it doesn't come back? I'm home alone with my two young daughters and fear what would happen if I couldn't see or hear.
Sound that I don't intentionally seek out (music, etc.) drives me INSANE! I was just thinking about posting a question like this earlier today. Right now at work we have construction going on and the constant jackhammering is really driving me nuts! Too many different noises at the same time really bothers me as well, even if they aren't loud. My dog clicking across the floor with his too-long nails makes me cringe. I was sound sensitive before decompression and it didn't go away with decompression. In fact, it may have made me just a bit MORE sensitive.
I think I'm may be more senstitive after surgery also but dealing with this is a breeze compared to all the other symptoms. Diana
lesliesch said:
Sound that I don't intentionally seek out (music, etc.) drives me INSANE! I was just thinking about posting a question like this earlier today. Right now at work we have construction going on and the constant jackhammering is really driving me nuts! Too many different noises at the same time really bothers me as well, even if they aren't loud. My dog clicking across the floor with his too-long nails makes me cringe. I was sound sensitive before decompression and it didn't go away with decompression. In fact, it may have made me just a bit MORE sensitive.