SENSORY OVERLOAD

[robin51]

DOES ANYONE EXPERIANCE SENSORY OVERLOAD? I AM STRUGGLING HELP ME?

[HellsBells1]

In what way does sensory overload affect you?

I have become a recluse in my own home because too much sensory input makes my myoclonic jerking go crazy and then I just can't stop jerking. I need peace and quiet. Even when my husband comes home from work and talks too loudly to the dog, or turns the TV up to loudly, it makes my sx worse.

Had an EEG done yesterday, and the banging noises, and especially the strobe lights made my jerking go crazy, which he was videotaping.

I consider this sensory overload, but specifically as a trigger to one of my major symptoms.

I also experience overwhelming emotion in response to the slightest things. Touching commercials get me bawling my eyes out. Silly little jokes get me laughing my head off. I suppose this is a type of sensory overload.

So what, specifically, happens to you, and under what types of "sensory overload"?

[hunterd]

WELCOME TO MS WORLD ROBIN51!!!!!!!! it is great Have you here but I am sorry why.

I also suffer from it. Family gatherings are brutal! With that being said, and it being the holiday season, I am sort of preparing myself (and least as much as I can).

The symptoms that I do have already are multiplied 10 times. It normally takes me a few hours of absolute quiet time to get over it. During that time, I will meditate, I will daydream, and I will practice deep breathing exercises to try to come down from the craziness that cause it.

What exactly causes it for you? Is it possible when you feel it starting to go to a quiet room? Best of luck to you.

[marti]

Yep... I love having the family over for holidays, but I LOVE it when they leave. Social situations just leave me ithching to run! I know it's anxiety and I believe that anxiety is kind of a "built in" effect of MS and some other illnesses.

[Thinkimjob]

Hello, Season's Greetings, etc.
People talking and having to respond drives me silly. Please, please, please just be quiet before I go mad.

This is one thing no one seems to understand. My mother, love her though I do, launches into a sentence by sentence recap of her every activity, every time I see her.

She tells me about every person she saw, everything the cat did, everything anyone said to her. And these are closed statements, so there's no room or need to ask questions.

Mmm, really, oh yes, oh no, I say when she draws breath, otherwise she thinks I wasn't listening and starts to repeat the story.

Supermarkets, crowds and shrieking children running around - all too much. The noise, the lights, the background music. It actually makes me feel quite dizzy and a bit panicky.
Aaarrgghhhh! (A nice silent scream.)

[amberlynn33]

In what way does sensory overload affect you?

I have become a recluse in my own home because too much sensory input makes my myoclonic jerking go crazy and then I just can't stop jerking. I need peace and quiet. Even when my husband comes home from work and talks too loudly to the dog, or turns the TV up to loudly, it makes my sx worse.

Had an EEG done yesterday, and the banging noises, and especially the strobe lights made my jerking go crazy, which he was videotaping.

I consider this sensory overload, but specifically as a trigger to one of my major symptoms.

I also experience overwhelming emotion in response to the slightest things. Touching commercials get me bawling my eyes out. Silly little jokes get me laughing my head off. I suppose this is a type of sensory overload.

So what, specifically, happens to you, and under what types of "sensory overload"?

OMG: I totally feel this way and have been newly diagnosed. I thought I was going nuts or I had a flu, but the achey sensitive skin and noise has made me a crazy person...Cannot even walk as it feels like my feet are going to shock my enitre body to hell!!! So glad I am not alone....

[HellsBells1]

OMG: I totally feel this way and have been newly diagnosed. I thought I was going nuts or I had a flu, but the achey sensitive skin and noise has made me a crazy person...Cannot even walk as it feels like my feet are going to shock my enitre body to hell!!! So glad I am not alone....

By the looks of this thread, we are definitely not alone. The thought of all the Christmas Eve and Christmas Day visits and phone calls is already stressing me out. The phone makes me cringe and I have turned the volume of the ringer down so low on all of them. Even children playing and having fun makes me want to be an ostrich and bury my head in the sand.

There are illnesses that specifically have sensitivity to outside stimulation as a sx, so given that MS can affect any part of our brain, it is not surprising that many MS'ers experience this. IMHO, there is a part of our brain that must help regulate our reactions to stimuli, and its gone wonky.

[FourPaws]

I've known for years that my fibro can make my brain translate noise as pain. I'm pretty sure MS can do that too. I'm very sensitive to the mood of a room too, so if people are unhappy, angry or frustrated (think store line ups) it's very tiring for me.

[rdmc]

I never venture into large stores, in fact, thanks to Amazon Prime I do not have one present that wasn't bought online, and we have a big extended family, so the UPS and FedEx drivers are probably glad when I quit buying Christmas presents.

I have the same problem as you guys with noise, lights, and activity. It makes me feel off balance and then I can't focus on what I'm there for, I'm only focusing on staying in an upright position I have the problem in stores, big crowds that are milling around, even church (fine once the service starts, but as people are coming in finding their seats, and there's lots of movement, I just put my head down because if I watch, I get dizzy...nobody pays much mind to me bowing my head before the service starts, they probably just think I'm praying, LOL.)

My PT has explained it to me as a problem with proprioception that gives me the off balance feeling in stores. Our eyes are a HUGE part of our proprioceptive sense, especially when we have MS and might not be getting signals from over parts of our bodies that deal with proprioception. Go into a milling crowd, or a store with lots to look at, and the value of the eyes in the proprioception is hugely diminished...too much to look at.

Also there is a name for the noise problem, it's call hyperacusis. I carry foam ear plugs in my purse and will use them as needed...my hair is over my ears, nobody knows I have them on. Movie theater trailers are almost impossible to watch because of noise and images being flashed on the screen. Action movies in a theater...not too good with that either...usually just watch a movie once it's come out on pay per view.

At Christmas parties, or home gatherings, I do better because I pick a spot away from the hub bub and park myself there. People come to me to talk and that's fine, one on one.

Now if someone would just make an MS cookbook called "Cooking in Spurts" because we're having dinner here tonight just for a few immediate family members, my menu is extremely simple, and yet I'm doing it in 10 minute spurts...oh well, no one will ever know that's how it was prepared...cooking in spurts fortunately does not affect the flavor of the dish.

[poohb3ar]

sensory overload? nahhh...

as i am in my grandbaby's room (she's not old enough to actually be in it) looking for my ear plugs or ear buds! (good idea rdmc!!!)
while rest of family plays scrabble in the kitchen and whomever in upstairs apt is playing full court bb press, i swear i'm not overloaded!!!!!

2 DD's in 1 town, and no peace in either place. i've loved visiting them and my grandbaby!!! thank GOd for babies!!! i think i would have gone totally over the edge without her!!!

hate to leave, but hate not to!!! can't wait to get back home to my study, loveseat and everything right where you can find it and no one will put it 'away for you'!!!!

as i get older and my children do too, Christmas has changed so much that i worry i'm going to become a scrouge one day.

i used to be THE Christmas person in the family. had almost a different hat and holiday clothing including decorated shoes for the whole mo. of dec.
this morning, Christmas Eve i actually debated between Christmas shirt and 'Fight Like a GIrl' !!!

you just do what you have to do to stay sane and not hurt anyone, verbally or otherwise .

thank goodness for MSW and all you wonderful people!!!!

may you be able to enjoy your time with family & friends without paying too dearly for it later.

Robin51, welcome and thanks for posting this question!

and all the good info and reassurance everyone!

take care and God bless ya'll!

[marti]

I never venture into large stores, in fact, thanks to Amazon Prime I do not have one present that wasn't bought online, and we have a big extended family, so the UPS and FedEx drivers are probably glad when I quit buying Christmas presents.

I have the same problem as you guys with noise, lights, and activity. It makes me feel off balance and then I can't focus on what I'm there for, I'm only focusing on staying in an upright position I have the problem in stores, big crowds that are milling around, even church (fine once the service starts, but as people are coming in finding their seats, and there's lots of movement, I just put my head down because if I watch, I get dizzy...nobody pays much mind to me bowing my head before the service starts, they probably just think I'm praying, LOL.)

My PT has explained it to me as a problem with proprioception that gives me the off balance feeling in stores. Our eyes are a HUGE part of our proprioceptive sense, especially when we have MS and might not be getting signals from over parts of our bodies that deal with proprioception. Go into a milling crowd, or a store with lots to look at, and the value of the eyes in the proprioception is hugely diminished...too much to look at.

Also there is a name for the noise problem, it's call hyperacusis. I carry foam ear plugs in my purse and will use them as needed...my hair is over my ears, nobody knows I have them on. Movie theater trailers are almost impossible to watch because of noise and images being flashed on the screen. Action movies in a theater...not too good with that either...usually just watch a movie once it's come out on pay per view.

At Christmas parties, or home gatherings, I do better because I pick a spot away from the hub bub and park myself there. People come to me to talk and that's fine, one on one.

Now if someone would just make an MS cookbook called "Cooking in Spurts" because we're having dinner here tonight just for a few immediate family members, my menu is extremely simple, and yet I'm doing it in 10 minute spurts...oh well, no one will ever know that's how it was prepared...cooking in spurts fortunately does not affect the flavor of the dish.

Thank you for this very good explanation. I've recently been dealing with the proprioception thing. I should say, I recently finally put a name to it. I've had the dizziness for years. I use sunglasses in big stores and busy places. I get those times when I am sitting still at a stoplight but feel like the car is moving. I press the brake as hard as I can. UGH! And movies that have a lot of action... no no... can't stand that. I have to close my eyes till some of it is over. Life is just not the same after MS!

[Wordsgood]

Sorry for this huge post - I had a lot to say. *Blushes*

I've been dealing with this for many years. Much longer than I'd known there was even a hint about the MS.

My problem has always been that the more I can't fake it and just be visibly happy, perky and upbeat, is being considered an anti-social ! Family, in-laws and even strangers have felt the need to walk up to me and tell me so just from seeing my expression. I don't even need to say a word!

Sadly I've lost what I thought were true friends as my illness intruded more and more on my life. Neither they or the above mentioned family, can accept that I can't still be what they wanted or expected me to be in the past.

As time marches on I've become more and more of a recluse. I don't do social events at all anymore. The ringer is off on the phone (hence loving voicemail!). Big date nights with hubby are rare and generally consists of a quiet dinner out. And a movie in a mostly empty theater if I'm feeling truly adventurous!

Shopping - for anything - is a nightmare. As are appointments.

I am slowly learning (very slowly ) learning to accept that folks, even those you would think would at least attempt to understand, are often not capable of "dealing" with our increasingly introverted behaviour. They don't get that shutting down is a defense mechanism and we can't always show our emotions because they come out in excess and in what they consider socially inappropriate ways!

I cry, a lot. I laugh too, but frustration about being unable to clearly express or cope my thoughts, feelings or they "busy" situations I found myself in, has led to my reclusive habits. And too my "dead face" that shows little emotion. I'm a very emotional person by nature and it's something I've learned to do to avoid public meltdowns. Don't always succeed, but I try!

Oh, and I can go from fine to a mess in a nanosecond.

Robin, it doesn't say (that I can recall) how old you are, but I do have some advice (unsolicited if you are on the younger side. (Even if not, I think it's still good advice!)

I have been the caregiver and all around problem solver since I was a child (yep, that young), and my issues started getting very pronounced in my early 20's. I'm 43 now, just found out its been MS all along and that contrary to the general consensus of most doctors, "friends" and most of my family, that it's not been all in my head!

So for everyone on the younger side - or even those who are waving sadly at their youth in the rear view mirror - I offer you some advice I've learned the hard way, and am in fact, still learning. (No, I realize I'm not that old, but after well over 20 years of fighting for help, I sometimes feel like I'm 200! )

I hope you will learn faster than I did that you simply can't be "everything for everyone" and it's okay to structure your world in whatever way works best for you! Please stop beating yourself up and accept any help you might need - medical or otherwise. And don't be afraid to set barriers with the folks in your lives.

Do what you can but remember you only get one life, so please don't waste trying to be Mister or Miss Independent. Or everyone's "strong" go to person. You are human. You have a disease that sucks and is completely unfair!

Be kind to yourself. And as difficult and hurtful as it might be, try losing the dead-weight in your life - human or otherwise.

Again, be kind to yourself. You cannot help anyone else at the expense of your own health or sanity.

And finally, as unfair, terrifying and infuriating as it is to get this kind of news and have to deal with these kinds of issues at any age, but maybe especially at a young one, it is - in a way - good news. You won't have to spend decades of your lives fighting to get help, like many of us had being ignored or treated for the wrong issues by the medical profession as we were.

Between that and the fact that medicine is now focusing on catching and treating MS in the early stages, gives you advantages that are hard to see right now. It's only been a very recent development that the medical field even recognized young people - even kids - can get these kinds of diseases and similar medical issues.

So do research and carefully consider any medical treatment offered before agreeing to it, but DO seek it out and try to accept whatever works best for you. You are not Supergirl, and trying to be will only lead to much heartbreak and lost years.

Everyone, sorry for the long post. I wanted to respond as I feel very strongly about this particular issue. I would offer the same advice to ALL the folks that are just now finding out they must deal with this or other diagnosis that include these kinds of issues.

If you're not a kid, in your 20s or 30s, it doesn't matter - just don't waste whatever years you have left trying to be or do more than your body will allow. MUCH easier said than done, I know - and life circumstances won't always allow you to make the "smart" choices that would work best for you.

With a 77 year old father who is living with us, who while not senile, often needs me to help him with simple and obvious things that he was never really able to cope with, and which my mother did for 50 years before she passed away 3 years ago. And yet he's still physically far more able than I am.

Unfortunately, both his lack of financial and other resources, and my disability have become intertwined. In oh sooo many ways, our life would be much easier if we got him into his own apartment, but I doubt he could deal with simple things - like paying his bills on time AND ensuring he doesn't screw up his budget so badly he's left without food. Or burn his place down with forgetting to turn the stove off or his careless smoking. (He's forbidden to smoke in the house or car.)

Yet he can still drive and while I can too, I am often too tired or in too much pain to do so safely. So while his driving ability is questionable (and it's my car!), there are times he's the better choice so I also need him. (I know, scary. We are working on affordable solutions.)

So you see, I do understand that circumstances can prevent doing the "smart" things you should, but I DO try to limit the impact of the negative things that he and others bring to the life I have with my husband. (Such as forcing him to learn things my mother just did for him. He's not slow or senile, but he is old, and well, more than a bit absent minded.)

Big, gentle and QUIET Hugs for Everyone! Wishing you all a Great Xmas and Happy, Health(ier) New Year!

P.S. I swear, this started as a small reply. Honest!

[NYJenn]

Yes--to sensory overload. I am happy to now be enjoying the peace and quiet of home after staying with family over the holiday.

Also, about department stores, there seems to be less air in them. I get itchy and exhausted, so I almost always shop on line.

[alishape]

One more thing...

This happens to me quite frequently as well. The worst part about it, for me at least, is that when I get overloaded it works like a positive feedback loop. If I jump for no reason when someone comes in a doorway, I start feeling anxious which makes the whole situation worse. It sometimes gets to the point where buzzy flouresent light bulbs can drive batty.


I am still working, but I think this will be the thing that sends me to an early retirement. At least I thought so up until I told my neuro, who recommended clonazepam. This is what I call my chill pill. I take it when I just cannot take it any more, or I know I am going to put in a situation where my anxiety will be hieghtened. You know like a busy place with lots of moving parts or a new environment. It's like someone said, normal emotional responses are exagerrated so you mostly can tell in advance when you might need one.

I have never been the type of person who believed in better living through chemistry, but since my dx all bets are off. I would rather take a pill than lose my job or become a hermit.

[techie]

me too

I get it when I am in stores.
I look at all the stuff in the aisles and I can't find ANYTHING
It gives me double vision.
Don't like it at all.
techie