My MS Sensory Overload Experience

My MS Sensory Overload Experience

Over the course of my thirty-something years, I’ve been known to have a good time on occasion. I generally love people, love being among them, love meeting and talking with new people. I have loved parties, crowded bars, any sort of social event. I’ve craved being around others. Over the past few years though, I have started having some unexpected issues that have been putting a damper on my time with others. I now have moments where my senses get overwhelmed or overloaded. My senses seemingly can’t handle normal life at times. Sounds, light, and crowds become absolutely unbearable and it’s been a tough and unexpected issue for me.

What’s happening to me? Other than just the blanket “I have MS” answer that seems to be a nice catch-all when I don’t fully understand some of the seemingly random and weird stuff (I really wanted to use another word that started with an “S” right there) that happens to me. I did some research and at this point I have to give a huge shout out to Matt, another writer on this site, who wrote a great article about Myoclonus I read that and was finally like “Aha! That’s it! Finally a name for the symptom!” Like many issues I’ve come across during life with MS, this was something that was never mentioned as a possible symptom when I got diagnosed. Matt’s done a great job explaining what it is, but I want to talk about how it’s affected me. One of the big reasons I like to share my experiences is because I hope they can help others with the disease feel like they aren’t alone. I also put my life out there so folks who are suffering can share my experiences with their friends and loved ones and say, “hey, please read this, this is me, this is what I go through too”. If just one person shares my experiences and their family or friends are better able to understand what they go through, then I feel that putting myself out there, even if embarrassing at times, is all worth it.

I’ve mentioned that my senses seem to get overloaded. Noise, in particular, is a big problem for me. Now, I’m not even talking about the noise of a large crowd yet. I’m talking about my wife coming up from behind me and saying something. This is a situation that plays itself out a lot, I’m in a different room of the house, and she comes in and says something, not loudly, but in a normal conversational voice. If I am not expecting it, it will literally crumple me to the floor in tears. That’s what this disease has done to me, a big, bearded guy, reduced to a sobbing pile on the floor because his wife said hi to him and he wasn’t expecting it. Expectation is a big thing with this; if I know someone is there and there is a chance they might say something, then it’s not as big an issue. If a noise, almost any noise, happens and I’m not planning for it, it will wreak havoc on me. My legs and arms will go weak and then burn with a searing pain. I will have spasms and tremors. My vision will become bright white, and my ears will ring. It’s awful.

Think about the world and how often unexpected noises happen. They are everywhere! Some of worst moments in my life have been while being a passenger in a car with someone who has a radar detector. No matter how much I try to explain it to them, it’s hard for them to understand that their device is my own personal version of hell. Even without a device like that in the car, the unexpected stimuli of a car ride can be exceptionally unpleasant. Headlights, car horns, changes in directions, those all have some sort of effect on me. Driving problems aside, there are a lot of sudden noises we encounter every day that can be very painful to someone who suffers from this.

Sometimes expectations don’t help. For example, when leaving a movie theater, the lights come on. I know it’s going to happen, but it still hurts. After being in a particular environment for a period of time, my body becomes acclimated to it, and a sudden change will throw me out of whack. So I can be in a crowded room and if the background noise is consistent, then I’ll be ok. If the room were to suddenly get silent, I’d have the same issues I’d have if there was a much louder noise too.

Usually, consistency and expectations are the keys for me, but sometimes I’ll be in a social situation and that doesn’t work out and everything becomes too much. All of the noises become one, sometimes even all of the light becomes one and I just see white or blurriness and I’ll have to leave. I will not always realize it at the time, but this will happen and I’ll be frustrated and think, “well, I thought everything was fine, I thought there was no change, nothing different, nothing brighter or louder.” Then I’ll remember that I caused it myself by going to the restroom. Yes, I’ve inadvertently sabotaged myself by going to urinate. I’ll leave the environment I’m acclimated to, even briefly, come back from doing my business and then not long after that, I’ll have to leave completely. Consistency is such a key thing with MS, I used to think it was just with temperatures, but it’s with all stimuli.

Following a conversation with multiple people can also be an issue for me. It becomes difficult going from face to face and voice to voice. Typically, the best thing for me to do in a conversation is to look down. I may even look rude or look like I’m looking at my phone but it’s mostly so I can drown out other excessive stimuli. Even if it’s one person and I’m in a crowded place, it helps me to do that. If you were to see me and my wife talking in a crowded bar, you’d think I wasn’t paying attention to her, when in reality, I’m just focusing on her and trying to drown out everything else.

I hope I’ve illuminated some of the sensory type issues I encounter. As I mentioned in the beginning, I have always enjoyed being in social situations, but you can see where these problems make that difficult. There are certainly times when I have to avoid people and certain events because I know I won’t be able to handle it. That leads directly to those issues of loneliness I’ve spoken about before. So what about you? Do you (or anyone you know) encounter sensory overload? If you do, how do you deal with it?  Hit up the comments and share. Together, we can help each other.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (71)
  • Carol
    5 months ago

    I love your tee shirt. Very clever!

    Ah, I having trouble with your bottom line of “learning to live through them all.” I don’t think I have been able to live through all this or I’m still having trouble doing so. Every day is different and when we wake up we don’t know what kind of day we will be having.

  • MarkUpnorth
    7 months ago

    Luckily for me, that was one of many many things that went away with time. The good part of RRMS!, if there is a good part. It did require my wife to act as my personal chaufer as I was still working back then, full time local sales, management…and continued doing so for many years thereafter. Bottom line, you learn to live through them all. Most do go away. Others, you learn to live with them and move on. ALWAYS keep a positive outlook and NEVER stop fighting. When you do….you can expect the worst. BUT, you CAN get better. Serious nutrition has gotten rid of at least a few long term residual things multiple doctors have told me would never get better. No it doesn’t cure the disease, but it can slow or stop it from progressing, just like a DMT, which I did for years, but nutrition can also eliminate some of the long term residual damage that typically won’t go away. It is really great to have at least a few of the horrible things MS can leave you with go away or at least get better after many, many years! Never going to stop believing that with diligent effort with serious nutrition, more and more will go away too. And at least my relapses have stopped after years. I’ve been told that with time and age, relapses going away can occur! Something else to be hopeful for!

  • AnywhereOutOfThisWorld
    1 year ago

    I think the term maybe Hyperacusis – What is Hyperacusis?

    Imagine being at a movie where the sound track is turned to the highest volume. Actors’ voices are screaming at you. After five minutes, you leave holding your ears and cursing the theater for its poor judgment. Turning newspaper pages, running water in the kitchen sink, your child placing dishes and silverware on the table – all are intolerable to your ears. A baby cries or a truck screeches its brakes to a halt and the sound is excruciating. What has happened to my ears?

    The person who has hyperacusis can’t simply get up and walk away from noise. Instead, the volume on the whole world seems stuck on high. Hyperacusis is defined as a collapsed tolerance to normal environmental sounds. Ears also lose most of their dynamic range. What is dynamic range?

    Dynamic range is the ability of the ear to deal with quick shifts in sound loudness. Suddenly everyday noises sound unbearably or painfully loud. The disorder is often chronic and usually accompanied by tinnitus (ringing in the ears), but can occur in patients who have little or no measurable hearing loss.

    Hyperacusis differs from recruitment, which is an abnormal growth in the perception of loudness accompanied with hearing loss. With recruitment, loud noises are uncomfortable. With hyperacusis, all sounds are too loud.

    Most patients also experience inner ear pain or a feeling of fullness (pressure) in the ears. This pressure in the ears can best be described as the feeling one normally gets when descending in an airplane. Hyperacusis can be devastating to the patient’s career, relationships, and peace of mind. Finding the proper diagnosis is difficult because few doctors understand hyperacusis.

  • AnywhereOutOfThisWorld
    1 year ago

    I think I have some sensory overload issues. I was diagnosed with MS officially in late July of this year. Although based on the amount of MS lesions discovered via my brain MRI and the protein “o” band amount found in the results of my spinal tap, my neurologist thinks I’ve had MS for a while. I was also diagnosed with ADHD back in 2014. I do still think I have ADHD as I have an impossible time focusing/concentrating in almost all situations in life. I even drive with the radio off. I do find sudden noises to be disruptive and do make me uncomfortable. I was on adderall for the ADHD but was taken off cause I didn’t sleep much at all on it. I have bad insomnia, the slightest noises will make it next to impossible to sleep, on top of that I have intermittent tinnitus (ringing & whooshing in the ears) and racing thoughts I can not turn off). I get the racing thoughts during the day as well and will start daydreaming out of nowhere and be lost in thought. I also get the hypnic jerks on occasion as I start to fall asleep. Lastly I usually always awake with some kind of pain and numbness, could be in my legs & feet but it’s usually in my hands and arms. The hand numbness and pain will linger almost always be present throughout the day.

  • Devin Garlit moderator author
    1 year ago

    Thank you AnywhereOutOfThisWorld! It is, unfortunately, very common for many people to have MS long before they are actually diagnosed Sorry to hear about your issues with sleep, sadly, that affects many of too. Between pain (https://multiplesclerosis.net/living-with-ms/painsomnia-an-exhausting-problem/) and anxiety (https://multiplesclerosis.net/living-with-ms/night-dark-full-terrors/), getting a good night’s sleep can be pretty tough for me too.

  • Lisa22
    1 year ago

    My husband accidently dropped our golf bag with about 10 clubs,,The sound scared me so much I screamed at the top of my lungs. Thanks MS.

  • Devin Garlit moderator author
    1 year ago

    Thank you Lisa22! That sounds very rough!

  • Julie
    1 year ago

    For me. Grocery stores. No.
    Nuff said

  • Devin Garlit moderator author
    1 year ago

    Thank you Julie! I agree, grocery stores can be extremely challenging to me too!

  • Tash611
    2 years ago

    I’ve only just come across this post today after searching whether being overwhelmed by crowds and noise could be a symptom of my MS. Diagnosed September 2016 after a relapse in November 2015 kicked all the investigations off.
    Recently the cog fog has been getting more and more noticeable and like you and many of the other posters mention you used to be could with crowded places.
    I work in a reasonably quiet office and i have always been easily distracted but i feel as though all it takes is for someone different to be in the office that day, or another member of the team to take a call or have a cough and I find myself unable to concetrate, I have to takes deeps breaths at my desk, or walk out of the room to zone out, get my thoughts together and come back to continue my day.
    I sometimes feel like, as you said, you blanket everything with “oh well you have MS so that happens”, or on the opposite scale “well you can’t blame everything on the MS” but I feel like I need to know why i feel these things and what they’re called. it’s so helpful to hear that I’m not alone with feeling this way.
    Thank you.

  • Devin Garlit moderator author
    2 years ago

    Thank you Tash611, you most certainly are not alone! Like you, even the smallest of changes is enough to through me off. Even an unfamiliar voice. This is way more common of an issue for people with MS than most people, even doctors, realize!

  • New to me
    2 years ago

    Every time I think “it’s just me” I read about someone else’s experiences and realize that just maybe I am not as alone as I suspected, since my myoclonus began the telephone is one of my biggest enemies! sometimes when it rings I almost jump out of my skin I literally come 6inch out of my chair my heart races and a thousand mis firing nerves launch all at once, add a house full of guests and a crying baby or screaming kids and it’s a recipe for immeasurable amounts of pain like barbed wire is being pulled thru my bodies nerves system… I have to escape to my shop pronto before I blackout it takes me several days to “recover” and just when I start to feel normal the phone rings! Thank you for sharing…

  • Devin Garlit moderator author
    2 years ago

    Thank you New to me for reading and sharing your experience. You are most certainly not alone! Unfortunately, many of us have to deal with this issue. I hope that you can get at least a little comfort in seeing that you are not alone, I know I do.

  • Genetics4u
    2 years ago

    Thank you for this article sir. I am newly diagnosed as of March 2015. It wasn’t until 2016 that I started to really pay attention to it; because the M.S. started to affect my body and my work. I recently resigned from my job. I am now feeling lost as if I was alone in the Sahara desert. I have been looking up information; it is very overwhelming, but good to know. Thank you again.

  • Devin Garlit moderator author
    2 years ago

    Thank you Genetics4u! Sorry to hear you were recently diagnosed. It’s a time of great hope for those of is with MS though! There are a number of very good disease modifying drugs with even more on the way. MultipleSclerosis.net is a very good resource with some great people (I was an avid reader way before I started writing for them). It can all be very overwhelming, but remember that you aren’t alone!

  • ChristieM022
    2 years ago

    I am so glad I am not alone with this one. I was truly beginning to think I was going crazy. I have developed such an insane sensitivity to sound, I have brought it up with my neurologist and it gets brushed off b/c he can’t seem to find any lesions in that area.

    It was becoming so frustrating – I truly thought I was losing it. Thank you for writing this – I actually share this article with friends and family when they don’t understand what I am going though.

    I have followed a few of your articles and it seems we have symptoms in common. Which I haven’t run into at all in any of my infusion groups.

  • Devin Garlit moderator author
    2 years ago

    Thank you ChristieM022! You are certainly not alone! I’m always happy to meet others who have similar symptoms, so feel free to find me on facebook if you want! Thanks for sharing the post too!

  • nymeria
    2 years ago

    Thank you, Devin, for posting this!
    I’m a bit of an introvert and value my solitude and the level of noise I can control. My husband is more outgoing and loves to go to music events and parties that can get pretty crowded and noisy. I choose my “battles” carefully and try to only go to outdoor events and small get-togethers.
    I was diagnosed in 2013 and, although my MS is still fairly mild (I only use a cane away from home), among a few other symptoms, I do have mild vertigo, problems with proprioception because of the numbness, and, of course, fatigue.
    Recently we went to see a friend’s band play at a brew house near a local university on a Friday evening. For me, it was a nightmare: it was very crowded in the outdoor patio area where the band was going to be. It was noisy, not just the music, but also the loud talking and laughing from all directions and wait-people were rushing past. There were several levels where the tables were, and we had to wait for one. The night time illumination consisted of strings of small bulbs that bounced a bit in the breeze, the flickering of candles on the tables and a fire pit. This was a perfect storm of confusion and, yeah, sensory overload.
    I guess I don’t have to tell any of you how exhausting all of this was. Nevertheless, I ended up having a very hard time sleeping that night, between all the twitching and needle jabs. I’m still learning to recognize my limits and put them into the perspective of having this constant companion called MS.

  • Devin Garlit moderator author
    2 years ago

    Thank you nymeria! That sounds like a rough night for sure! Learning our limits can be tough. I’d like to say I have it figured out but I still find myself in rough situations too. Thanks for sharing, that’s the exact situation that a lot of would have trouble with!

  • margiegandy
    2 years ago

    I am experiencing exactly what you have described. This has hit me fast and hard. I too, love crowds and excitement, but have been reduced to tears just hearing the voices of my sweet family. I have not been diagnosed with MS but When I have had times of heavy stress, I have often suspected it. Both of my sisters have been diagnosed.I don’t have health insurance and know that it would cost a fortune just to get a diagnosis.
    I have had many other MS symptoms that go away after a long rest (months) but this new one is tough. I am a musician/singer and I can’t even stand to listen to music at the moment. What are some ways that you deal with sensory overload?

  • Devin Garlit moderator author
    2 years ago

    Hi margiegandy! I’m so sorry to hear of your issues. If you highly suspect MS, I definitely encourage you to try to find some way of getting a diagnosis. I know that seems impossible without health insurance but there are options like private charity run clinics that can help. Often times your State Health and Human Services department has a list of them, so it’s worth reaching out to them.

    As for some way of dealing with sensory overload, for me, I try to surround myself with this people or items that are familiar to me (I tend to go to the same places over and over again to build of a comfortableness with them). I’ll also try focusing on something. Sometimes that means I’m staring down at my phone or off in the distance a lot but it does help me to find something and focus on it.

  • PollyCShafer
    3 years ago

    My reactions aren’t as exaggerated as some of you but when I am trying to take a nap and there is a “different” noise somewhere, I get this little jerk and very annoyed! Also, when I am in a big store, I get this vague sensation of dizziness. I try not to look all around but focus in front of me. Could this be related?

  • Susan
    2 years ago

    Polly, I get that sensation in stores sometimes too. I had read somewhere that the fluorescent lights affect some people like that. Has anyone else heard of this? I wish I could remember where I read that. It’ll make me feel kind of vaguely dizzy and queasy for lack of a better word.

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading! I have gotten a vague sensation of dizziness before. You know, one of my biggest issues is sometimes describing what these feelings and sensations are. But to answer your question, it could be related. But it could be something else too, the brain and these symptoms can be pretty complex. Always good to mention it to your neurologist though, just so they have a record of it.

  • meg383
    3 years ago

    THANK YOU for posting this! This is exactly what I’ve been going through since I was diagnosed last October. Sounds and noise are my biggest issue, though lights, strong smells, or people touching me unexpectedly can bring on symptoms, as well. It’s kept me from being able to work and have a normal life. Unfortunately I’ve had doctors who have labeled this as anxiety and a conversion disorder, separate from MS, although clearly it is not as it brings on the same symptoms as heat, fatigue, etc., does. I also don’t think a sudden change in personality (i.e. if someone like me who has never been anxious suddenly starts presenting as thus) should be overlooked, as it probably has a somatic or disease-related reason. I wish that there was more research on this, and that I could find a doctor who actually knew what I was talking about when I mention stimulus sensitive myoclunus related to MS! It seems like there are plenty of people who are going through the same and it’s great to know that, and that I’m not ‘creating’ the symptoms as my doctors seem to think.

  • Devin Garlit moderator author
    3 years ago

    Hi meg383, thank so much for ready and sharing your experience here. Very sorry to hear you’ve run into a doctor that doesn’t agree with you. This is something that a great many of us have unfortunately run into. I know for many it isn’t always feasible, but the number one advice I like to give the newly diagnosed, is to be ready to switch doctors if they can. It’s a shame, it has to be this way, but not every doctor, even ones proclaiming to be MS specialists are always up to date on everything. MS research is constant and new information is always coming out. That’s a good thing but it’s a lot of work for a neuro to stay on top of. Always advocate for yourself and always be ready to get other opinions! Thanks again!

  • melissa725
    3 years ago

    can this issue start out small? a couple years ago i had to start sleeping with a pillow on my head. any sudden noise while i was trying to fall asleep would freak me out and make my heart jump out of my chest. but once i am asleep i am fine. of course i can’t wear earplugs cause then i wont hear the alarm in the morning. but the pillow works because by the time i rollover i am asleep and it wont matter if the pillow falls off my head

  • DonnaFA moderator
    3 years ago

    Hi, Melissa725! Have you ever considered a white noise machine or app? My boys have Sensory Processing Disorder, and have the same problems you describe in falling asleep. We started out with a simple white noise machine, and it did help a bit. But we found a free app for their Kindles which allows you to make your own sound mixes and includes white, brown, grey and pink noise (pink works best) worked even better. They very rarely have trouble falling asleep now.

    Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • Devin Garlit moderator author
    3 years ago

    I’d say it could start out small. I certainly wasn’t always this way. I think with me it developed slowly enough that I didn’t even realize it was an issue until my wife pointed it out to me. But with anything MS related, it could start small and only ever be small too! It’s great you found something that works though! MS is really about adapting and if you find a pillow helps, go with it! Thanks so much for sharing!

  • na615
    3 years ago

    Oh thank you God for this article! I have only read a few of the comments yet but I have to jump in. Thank you Devin. I have a story that no one else would believe so that book will probably not be written. I first had optic neuritis at the age of 20 in college. I have had it 5 additional times.

    MS attacked my lungs first for many years along with the sensory overload You all have been so open about, strange things would come and then go. I was a working wife and mother who stayed sick all of the time. No one cared about the time I couldn’t feel my left leg for 3 days, or a migraine for 9 days, etc. I am going to be 62 in December. I have been sent to 36 different specialists by my Primary dr.in the last 10 years for every different symptom I would have at the time. 6 of them were neurologists.I have been given every disease you could ever make up except MS. 5 years ago while having pneumonia for 7 mths (The 4th time since I was 20)and sinus surgery right in the middle of it, my surgeon told me four mths later that my sinuses were still raw meat. He told me he knew I fall a lot, and let’s say I fell and broke my arm. He said it might take a year to heal.

    All the way home that day when my brain tells me that the car in the lane next to me is coming over on me and me trying to ignore it before I jerk the wheel and hit someone myself,or someone blows their horn, I decided I would have to take care of me. I knew that it all had to be connected. All of it. I came home and made big charts. (being a former health educator helped a lot.) I am good at research. I made big charts of every disease that any of my symptoms would match. I took a week to go through and put every symptom and one by one I crossed them off until all that was left was MS. 40 yrs of MS and not one dr ever thought these weird things were related. 5 yrs ago when I figured it out, I decided I was going to stop as many of the 32 prescriptions for non- existing diseases as possible, I told my dear dr I needed an MRI. He laughed at me.I made the biggest mistake of my life that day. I dropped it. I was still in RRMS then. I know because in Oct. 2013 during one of the most stressful times in my life, it went into secondary progressive MS. He still wouldn’t listen. He just kept sending me to specialists and we have some very admired specialists here.

    The subject of sensory overload that Devin spoke about has been a part of me for many years. My Hero would talk about me “working myself into a Tizzy”. I didn’t know that more then me have these problems and now I am crying because it isn’t just me. Not one dr would listen to me. I was diagnosed with a rare deadly lung disease along with the most ridiculous things and every one of them told me this med was going to take care of all of my problems. They would hand me a script and send me home. The last 5 years not even my husband of 33 yrs believed me. I finally researched anything that I had not before. 3″ of medical journal articles and studies and went back to my dear dr.

    That was last August. By then, I would become overwhelmed with anything. I would hate going to bed because my muscles stay tensed up all day. Over and over I have to make myself relax and a minute later I realize it is back. I thought I was dying for 3 years to finally be told I am. Sometimes I would have trouble with the TV being too low and a few minutes later, I couldn’t stand the noise. These doctors kept me on antibiotics and cortisone shots for so any years for those upper respiratory infections that there were none left that would help at all. I now know the cortisone for the infections is the only treatment that kept “it” at bay for years. I can not take cortosteroids any more because my body rejects it. I have had my throat swell shut and hives all over my body. The nightmare I am in has destroyed not only my trust for the medical system, but I have gone to alternative medicines and healing. I spend many weeks looking up to see if my prescriptions will be safe with each one. The overload is every single day now. The lights are awful on me. If I go into a dim parking garage on sunny day, the light difference makes me see heavy gray fog which sounds crazy which is what I was told by 5 of the 6 neurologists. The dr I am with now listened to my symptoms last August. He said that all of the other drs did listen, but “my symptoms were so varied they thought you were a nut.” I had 4 months of every nerve tests he knew plus new MRIs and a lumbar puncture.In March he sat with me and told me that it was MS. I knew it. All I had ever asked was for one of the doctors to run the tests and a couple did one test or none. He told me that every nerve in my body is now damaged and at this stage,there is nothing anyone can do now. I wanted to be wrong sooo bad. I never want anyone to go through what I am going through. Now I have seen here that your symptoms match several of mine.

    Why didn’t they see it? I don’t know. By the way, I have not even had a cold in 4 1/2 years.I take herbs and supplements especially probiotics and just started on prebiotics. My PCP has never once questioned why I am not sick anymore with the respiratory infections. When I finally convinced him to listen to my symptoms, his words were “If this is MS, we have to hurry and get you diagnosed!” I looked at him for a minute and said, “What do you think I have been trying to do for the last 5 years?” Thank you for listening and giving me new insight that I am not alone in this. Chrissy13, I do the same thing when I try to spell. I also transpose numbers. I misspelled my granddaughter’s name last week. thank you Devin.

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for sharing your story. You’ve had an incredibly frustrating time with doctors, as unfortunately many have had. Even I have seen people discuss symptoms on this very site that I had had but never had a doctor recognize as MS. It’s very frustrating that not every doctor is as well versed as others.

    Trouble with spelling and numbers are an issue for me as well: https://multiplesclerosis.net/stories/cognitive-dysfunction-scary-invisible-fight/

    Thank you again and I hope that things go better for you in the future!

  • chrissy13
    3 years ago

    I also have this problem.I can’t stand being in a little or big crowd we people talking. After a while it all just a bunch of noise. The other thing is being Star at tell. I forgot how to spell it. You know when someone walks in a room and you jump up
    Any who that’s all I got to say. Byeeeee thanks for listening.

  • Devin Garlit moderator author
    3 years ago

    Thanks for reading and sharing! Being startled is a huge problem for a lot of us!

  • Akwjules
    3 years ago

    OMG finally! This is like so me!! I feel so enlightened that other MS’er’s go though what I do everyday! Thank you so much, I think I need to share this with all my family and friends so they can finally see my life!!

  • Devin Garlit moderator author
    3 years ago

    Definitely share! This is a symptom that I think a lot of folks get but don’t even realize it. Thanks so much for reading and sharing! Even though I don’t wish it on anyone, it is very nice to know I’m not alone!

  • CherriePie
    3 years ago

    Also I hate having showers….this is because the water running on my skin causes it to itch like crazy! I know it isn’t a chemical thing because wind on my skin does the same thing. Can nearly drive me batty.
    And it just dawned on me that this sensory overload is why I function best at night when everyone has gone to bed. I get difficult thinking things done that are impossible while everyone is awake. Feel so content and relaxed by myself at night.

  • Devin Garlit moderator author
    3 years ago

    Showers can be tough for me too, for a variety of reasons: https://multiplesclerosis.net/living-with-ms/the-unexpected-perils-of-showering/

    There certainly is a peace and quiet that makes life a bit easier for us at night, when most people are asleep! Thanks again!

  • CherriePie
    3 years ago

    Thank you for sharing this. I get this but not from sudden noise so much but just from noise and activity..but if I am busy doing something and someone interrupts me I just can’t handle it….poor hubby cops a few angry out bursts that are totally unwarranted.
    And I love my grandkids to bits but can only cope with them a little at a time now. Feel robbed of enjoyment in life at times. And it is so hard explaining these types of things to anyone including my Dr.
    So your post is very helpful. Thank you once again.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and sharing what it’s like for you. It’s always helpful for folks to read comments and see that they aren’t alone!

  • Perilune
    3 years ago

    Thank you Devin, it’s good for family members to know how to anticipate and hopefully reduce challenges that come with fluctuating symptoms. This was something I didn’t understand very well.

  • Devin Garlit moderator author
    3 years ago

    Thank you for reading and commenting! While I obviously want other MSers to read what I write, it’s always my hope that they share it with their friends and family. That’s how awareness is made. That’s what helps improve out lives!

  • Judy
    3 years ago

    Oh forgot, I don’t like to be around a crowd of people either…

  • Judy
    3 years ago

    Sounds like the way I feel when my husband runs the vaccumm cleaner. Sometimes I don’t even like it when the TV is on.

  • Akwjules
    3 years ago

    Exactly!!

  • Devin Garlit moderator author
    3 years ago

    Oh yea, a loud noise like the vacuum cleaner is rough to me! Thanks so much for reading and sharing!

  • SSymons
    3 years ago

    Thank you for writing and sharing your experiences. I am always relieved when a symptom or experience turns out to be more common than I thought. I attribute this need for some sort of external validation to the fact that doctors (and their support staff) can really be misinformed or even harsh when dealing with me. They sweep everything that happens to me under this big MS rug and once “it” is there, no explanations are required or forthcoming. I was diagnosed one year ago with RRMS. I am now 51 years old and after failing 2 meds I am finally settled on Copaxone. It has been a bumpy year. I am still in a phase where so many of the things that have happened in the past are now understood in terms of this disease. To get to your other point (finally), I experience sensory overload frequently. I startle at the least little thing. For example, my water bottle crackled unexpectedly and I immediately went into a panic mode…limbs, hands especially, burning, etc. Noise bothers me, a LOT. I can not tolerate a loud radio or TV for any length of time, which stinks because I used to love to get my jam on! I could not figure out why I was having so much social anxiety, until I realized it was just too much for me. Too many people, and I get overwhelmed, or is it fatigued? I can not keep up with multiple things going on. Two things I am wondering if they are related to myoclonus. First, I will some times get a burning sensation, a drawing in like when something is sour, when I taste something. The food or drink can be as mundane as milk, but my mouth just does this thing. My doctor and dentist just look at me like I am nuts and say they have never heard of this. Second, I get really stressed and unable to function when people talk too fast. I say “I can talk fast but my ears can not hear fast”. In reality, I think my ability to process information has slowed considerably. I am curious whether other readers experience these things.

  • Devin Garlit moderator author
    3 years ago

    I think one of our huge disadvantages with MS is that there are a lot of doctors who are not really caught up with everything related to the disease. And let’s face it, there is still so much that’s unknown about it. I’ve heard countless stories of people talking to neurologists who haven’t a clue what’s going on. I’ve experienced it myself too. I’ve literally had doctor’s excuse themselves so they could go look up symptoms. It’s really how I got involved with this site, I’ve been diagnose over 16 years and this has big my best repository of information. And information aside, it’s so nice to get that validation that you aren’t crazy, that these symptoms are real and you aren’t alone. Sadly I very much understand about being able to process information slower now, that’s a massive issue I have, and it really was a big factor in pushing me from my job. I talk about that here: https://multiplesclerosis.net/stories/cognitive-dysfunction-scary-invisible-fight/ Thank you so much for reading and sharing your story, it’s very, very much appreciated.

  • 43om7o
    3 years ago

    Thanks for sharing. I am 69 yrs old (young) and have had ms since I was 28. Can’t do too much that I would really want to do any more, but keep on pushing. I use a cane, shopping cart of wheeled walker to get around except in the house where I use furniture and or walls. My vision is good, and my reflexes for driving and the like are as well. But sensory overload is a real, as we used to say, downer. My struggle comes not with pain or wanting to claw at myself, but just some real tremors, lack of coordination, over heated (I think of electronic equipment when it gets too hot and starts to malfunction) brain to limbs and other parts ‘circuitry’. I avoid as best as I can crowds, parties, large gatherings etc. This has a definite negative affect on my social life. Other triggers are things like some have mentioned (I have not read all 25 responses) traffic congestion, shopping, esp when crowded (I shop a lot online rather than in stores with parking lots get the walker out, or face crowds or lines (thank God for drive through RX, even though they have been around for many many years on the corners of my neighborhoods in Philly and chicago). Add the heat, bright sunlight, or noise clutter, or driving in the rain and the glare that results, my brain just begins to misfire and the fatigue that is at a constant low ebb begins to wash over me like a wave at the shore. It has become over the last couple of years more difficult to hold a conversation when there are other visual or auditory (some folk seem not to be able to function without the TV going in the background) stimuli like on my steps and traffic or neighbors walking around around, and I find folks becoming frustrated with my requests for their repeating or restating things if I have not been able to explain to them( or they have not been able to grasp what I have) what is happening with me. I sometimes, maybe often, employ what has been shared already, looking down and not directly at others when I find that I am losing my sense of being present in a conversation. I am a retired minister and esp. pastoral counselor and have always been able to ‘think on my feet’ and am still, but the struggle and strategies needed at this stage of my life can be quite exhausting, and even dangerous to myself and others if I don’t keep myself in check and keep others near who will assist me in doing so. I know this from being involved wit hte MS community for over 40 yrs, if I five up and let these things overcome me it’s all over, downhill from there. Thanks for listening

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for reading and sharing you story. Means a lot to me when people share their experiences. Mentioning how you use to be able to “think on your feet” really hits home. That was definitely me. As with you, my life know really does require implementing more planning and certain strategies to even just have a conversation with a group of people. Thanks again for sharing, I very much appreciate it!

  • Sue
    3 years ago

    I also have sensory overload. I used to be able to teach, answer questions, determine what was going on in a large overstuffed room and be present. Now if we’re eating with another couple (4 people at one table) even in our dining room, I begin to space out. I try to concentrate , but often feel lost. I’m happy (really sorry) that I am not alone in my alienation .

  • Devin Garlit moderator author
    3 years ago

    As you say, I too am happy I’m not alone, sorry too though. It doesn’t make it a little bit more bearable though knowing we aren’t alone! Thanks for sharing!

  • Mariella
    3 years ago

    Thank you for writing! I didn’t know the name for that symptom but as an RRMS patient I understand much better many of my personal daily experience. I am a 44 years old mom, diagnosed by 32 years old, and with a 9 years old boy, I’m blessed I haven’t had the grocerie shopping or driving relapses yet. I think so far, 4 years and 3 months with Copaxone, have been working good on me. Always uncertain about my future though.

  • Devin Garlit moderator author
    3 years ago

    That’s a great sign you’ve been on Copaxone that long and haven’t had too many bad relapses! Thanks for reading and commenting!

  • meissie47
    3 years ago

    I wonder if I deal with the same thing with MS.I can start out fine in a group conversation but with continous looking from person to person and talking the MS dizziness starts to kick in. So ill usually just stop talking and try and keep still.

    Also the sudden shift in direction if imin the car with someone or by myself od in standing traffic where the cars around me are starting and stopping will set off the dizziness and nausea.

  • Devin Garlit moderator author
    3 years ago

    Trying to keep up with multiple people in a conversation is tough. The best way for me is to look down and not at them, but that doesn’t look so good! Sudden shifts while in a car are rough for me as well. Thanks for reading and sharing!

  • Lisa Comstock
    3 years ago

    I have this same issue, and it started long before I was diagnosed (2010) but most of my MS symptoms did. The way I understand this issue is due to cognitive problems. Processing information has slowed way down. I can still do it, but at a slower rate and on my terms. So when someone at a store suddenly blast an announcement over the intercom, it literally hurts my ears. And if everyone is talking at once like in a restaurant or at a party, I cannot follow the conversation. I take lexapro to help with all the overload. My husband calls it my happy people. lol It helps take the edge off

  • Devin Garlit moderator author
    3 years ago

    Glad to hear lexapro is helpful! It’s interesting you mention it starting before your diagnosis. After this was published, my mother read it and reminded me of some behaviors I had when I was younger that definitely fitted this. Some times and things that I had even forgotten about. Thanks so much for reading and sharing!

  • cheyennejourney
    3 years ago

    Thank you for your eloquent explanation of this issue. I’m going to share it with my loved ones, because you were beautifully able to explain something I experience daily.
    Thank you!!!

  • Devin Garlit moderator author
    3 years ago

    Thanks so much, I’m very happy to hear that! Thanks for sharing too!

  • BeckyAnn
    3 years ago

    I was having another MRI and I was laying there thinking about how the noise could set someone into a panic attack…I wish they could figure something different…I would take a spinal tap over that noise anyday.

  • Devin Garlit moderator author
    3 years ago

    It really is! I wish they could do something to improve the experience!

  • lisalu
    3 years ago

    I was thinking the same thing as I was reading this story, It really is miserable in there!!

  • Devin Garlit moderator author
    3 years ago

    Ugh, it really is rough in there. Even with earplugs or headphones! The small space isn’t too helpful either!

    Thanks for reading and commenting!

  • Masala
    3 years ago

    I too have sensory overload. Sometimes it’s noise…sometimes it’s motion. A walk through the grocery store feels like I’m in a fun house…the noise, the aisles, the people, the stuff on the shelves. I have literally run out of the grocery store with a full cart of food because I thought I was going to fall over because my head gets so, lack of a better word, “weird”. Restaurants do me in too…especially sports bars that have a TV on every square inch of their establishment. I usually lock my feet around the legs of the chair because I start to get dizzy and I feel like I’m about to tip over or my head is going to just slam off the table. I have tried focusing on things…it helps sometimes. I’ll say, “Ok…find 5 things, find 3 things I can smell, find 3 things I can hear…it grounds me somewhat. But, the biggest thing that has helped me is Klonopin. It’s sort of like a miracle for me. I take one at night and for the most part I can function like a normal human being. I still have my moments, but they have been few and far between. So, I’m happy about that.

  • Devin Garlit moderator author
    3 years ago

    Happy to hear that klonopin works a bit for you. I certainly sympathize. I tend to look down a lot to help ground myself but doing that in a place like a grocery store just isn’t always practical. Whew, talk about overload. SO much going on in a grocery store, it’s a nightmare! Thanks so much for reading and sharing your story.

  • 3 years ago

    Devin,
    You did it! You shared your story and my husband gets it. He passed on your story to me, saying this is what Friday night dinner with family was like for him. I thought dinner was pretty lame myself, although not as bad as he described it being total sensory overload. I just wanted to say thank you for taking the time to post your experience living with MS. My husband was diagnosed 2 years ago and unfortunately this shitty shit disease has progressed into SPMS for him. One thing we both agreed upon after dinner is he’s a pro at acting and looking like his MS doesn’t effect him as much as it does in front of family. They have no clue that his day is spent in bed after mustering up enough energy for a shower. He doesn’t want others to worry about him, so I take on the worry for everyone. If we’re at the doctors office and he’s been feeling shitty, he’ll greet the nurses and doctors with the friendly hi, how are you? His reply to how are you is always, I’m good! What? Really? I know he has 99 problems and feeling good isn’t one of them. It kills me that he feels like he’s living in a broken body and wants to make sure no one knows how bad it really is. He’ll eventually discuss his shitty symptoms with his doctors, but not his family. I see him go the extra mile to make sure our 15 year old son (talk about emotional overload at this age) doesn’t see him hurting. For me, love is love and sometimes it’s not always all “good”.

  • cheyennejourney
    3 years ago

    Thank you for saying this. I’m going to share it with my wife. She’s the partner & I’m the one with MS. And I know she needs to hear that other partners see us trying to not let all the bad stuff be seen (even, at least in my case, we don’t always succeed).

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for commenting. That is always my goal, so that someone else can use what I write to explain their issues. I hate to hear about your husband’s issues. I certainly sympathize. I’ve always felt being a man brings along a few different issues with this disease. I wrote about them once here: https://multiplesclerosis.net/stories/added-problems-man-multiple-sclerosis/ Thanks again for reading!

  • potter
    3 years ago

    I don’t suffer from the noise sensory problems except at night. I have more problems with a new smell in the room. If you spray something on the other side of the house, I can smell it in a few seconds and I feel like I can’t breath. I usually step outside for some fresh air. Have you tried wearing some earplugs, I am such a light sleeper that I sleep with a sound machine and if it’s really noisy I also wear ear plugs. You can still hear somewhat with most plugs. You just have to try them to find the type you like. I use these silicone rubber ones they sell for children, I have small ears. You warm them up in your hand and then press them in your ears and they conform to your inner ear. Potter

  • Devin Garlit moderator author
    3 years ago

    Thanks Potter! Those are some good tips. I also sleep with a sound machine. I like the idea of ear plugs! I haven’t noticed any issues with smells yet, but I will be more aware of it now. Thanks so much for reading and sharing!

  • Erin Rush moderator
    3 years ago

    Thanks for sharing, potter! Ear plugs can really help cut the noise level while still allowing you to hear and they can be such a sanity-saver for individuals dealing with sound sensitivity. I am glad you have found some that work well for you. That’s a good tip you shared! Thanks again for sharing. Best, Erin, MultipleSclerosis.net Team Member.

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