So recently I've noticed that I startle with loud sounds more than usual. I looked into this and see that it can be a part of MS (technically called sensitivity myoclonus).
I already knew I had MS related hyperaccusis (sensitivity to loud sounds in general) like leaf blowers, shower fans.
Neither of these is more than bothersome but they are something relatively new for me. Just curious if anyone else here has these symptoms?
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erash
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I jump at sounds, but I thought it might be because my mind is elsewhere and not focused on where I am st the moment. If that makes sense. Never thought it might be due to MS.
But I also-since MS-have sounds come and go out of stereo surround sound. I've had my hearing checked and it's ok. It's just that I hear something fully one second, then it 'shorts' and I'm only hearing it out of one ear. Then it's back in stereo.
I also can't distinguish where sounds are coming from anymore-behind me or to my right.
Wow thank you for this post. I just KNEW it was MS RELATED. I have been calling it an exaggerated startle reflex. I have it bad at times and other times not at all. Just like most other symptoms. One time at an MS meeting my hubby accidentally slammed the door. And I saw almost everyone react like the building had blown up.
I have reacted so violently to unexpected things that my limbs flail. It is one reason I can't drive safely. I have been so startled in the car by a plastic bag hitting the window that I cried. And if someone blows their horn I'm done. Or if a car comes up on my side I didn't see.....
Karen-X I'm not sure but maybe it's reassuring to know its MS related. Interesting that the whole group reacted that way. Why don't they tell us these things? I guess they can't tell us every level title symptom we may/may not have...
I did read that some believe it is MS and others say its not. My neuro likes to say, MS can cause just about anything if it involves the CNS. I just read there is a medication, Klonopin, that can help. Ever heard of it?
I take it at night for my spasticity . It helps me sleep due to my brain activity wearing off the prozac as well. I'm not too groggy in the am. I really like this medication but don't want to take it every night. The neuro says it's non addictive in low doses .
The potential problem isn't addiction per se but tolerance where the lower doses stop working as well and higher doses are needed to get same effect. The best way to combat this is exactly what u r doing, taking intermittently if u can. 🤓
I definitely experience a feeling of sensory overload frequently. I will be fine, and then all of a sudden won't be able to handle it. I have found out for me that even listening to music in the car alone can suck out my energy.
Erash, it's MSFighter. Please be careful with your driving if it's becoming more challenging going to new places when loud noises distract you. Here are some ideas you could use to maybe make it less stressful and safer for you. I used to be a professional driver trainer and I guess the old driver trainer comes out on me occasionally.
1. Map out your destination before you go perhaps by typing it into your GPS or your phone's map app so it can give you turn-by-turn directions as you drive. That way you can pay attention to traffic more and worry less about your destination.
2. Try doing dry runs during non-rush hour times so you become more familiar with your destination at your own pace without heavy traffic.
3. Set up your appointments and meeting times away from rush hour times so you can relax more as you drive and worry less about heavy traffic and loud noises.
I would be devastated if you were hurt in an accident and I didn't give you a little input about some ideas I have. You are a valued and beloved member of the extended family! I too have noticed that my driving has become more challenging for me than it used to be. It's one of my husband's favorite topics to discuss with me. Of course I have given him ample ammunition to use against me when I ruined 2 front tires on the car I was driving. One was on a huge pot hole i hit which wasn't exactly my fault since it was raining heavily and you couldn't tell it was a pot hole because it was filled with water. The 2nd time i hit a curb when it was pitch black and I didn't see it. But that was totally my fault. He never lets me drive anymore when we go together. I fought that issue for a long time. I finally gave up fighting and i now take my notebook along and play games or take a nap while he's driving. I guess you could say that it's kind of a win-win situation for me anyway. Why fight it I ask myself? Still, old habits die hard especially for stubborn old goats like me. LOL!
Thank you MSfighter, I've actually begun doing all of your suggestions, and I totally avoid night driving, and because I mentioned this to the neuropsych, she recommended I have a driver eval.
I no longer am the speed demon I was in my 20s. I drive like a little old lady and if they want to pass me by, so be it.
erash erash be careful with an evaluation. They can and may be required to report to your DMV if they deem you unsafe.
I accept not driving but I can because my hubby is retired as well. But sometimes I really want to drive. He let me the other day, I ran a red light and my hand went numb. And I question whether its from lack of practice or a real decline....
Karen-X, thanks for the caution. I'm in no hurry to be evaluated and I'm restricting myself to familiar and nearby places. Losing the freedom to drive would be a big deal. My hubby is not retired and our town does not have great publicity c transportation
Hey AngieRowe granted l need the TV up loud to hear it, which drives my bf nuts. But l had to change my Dr appt time to when kids were in school. Wayyyy to much sensory overload for me. And to think l used to be a child care provider and worked in day care along time ago. I love kids, it's just to much anymore. Not to mention that I raised mine, it's not my job to raise yours at the Dr's office. :/
AngieRowe, it's MSFighter. Come to think of it loud noises like loud television and noises do bother me more in the last few years than they used to. And don't you know that I married to man whose hearing seems to be getting just a bit worse. I walk into the room where he's watching TV and it's blaring really loudly. The first thing I do is go turn the volume down a bit. Then when I'm out and about screaming children, extremely loud conversations, and loud noises in general also seem to bother me more. The truth be told I never ever even considered it had anything to do with my MS. You all have definitely made me consider the possibility. That's why this chat room is so wonderful between us we cover so many unique topics there's always something to learn about. Great topic and thanks for sharing!
I just can't hear very well, and if there are more than 1 person talking, forget it. Although I do hear very high pitched noises, just can't tell where it comes from. My ENT was an idiot blah
Jesmcd2 I have that same problem if there are a lot of people talking or it's loud, also people who talk quietly. I was diagnosed with low range hearing loss in my early 30's
Oh crap! Sorry I try to stay positive but we are having a cold spell here in fla and while I knew I had heat sensitivity, I now realize I have cold sensitivity too. Apparently happens to @ 10% people with MS. Cold is increasing my spasticity and decreasing nerve transmission.
Looking for a temperate zone 50-70 degrees f. San Diego?
I'm in San Diego at this very moment. It is moderate here. They do get some hot days--it was 90 when we were last here and I took to my bed--but there isn't the humidity that FL has which seems to magnify the heat and cold. Highs today and tomorrow around 68.
Thanks! I lived in So Cal for a little bit. Loved the weather but it did occasionally get hot (especially a few miles inland) and sometimes quite cold too. Not sure where, besides a bubble, which could get boring, to go? 😉
I say we all move to Bermuda ♡ l lived there for 3 yrs, and loved it. And if l remember correctly, it has a pretty stable climate ANDDDDDDDDDDD it has a ton of beaches lolol
I'm ready to go now erash I won't even pack, oh wait, l have to pack. It's expensive over there. A happy meal was over 5 bucks and that was on base! Yikes But we would be English like our friends across the pond, like jimeka and ugh l forget (MS ya know lolol) where's my spreadsheet WAshingtongirl ?
Morllyn, I have always been heat sensitive too, and like you, now the cold just makes me crazy with discomfort. Hard to get comfy! Also, some of you mentioned hearing loss. I need hearing aids, thanks ms, but have to save for them. And neuro said there is no promise they would work. I would have to "test drive". Them first. Look forward to getting to know you Morllyn. Kelly
Erash, I was shocked when I read your post about startling at loud noises easily. I have been experiencing this for about a year and had no idea it could be ms related. For me it's quite a problem, it's caused me to fall down numerous times. Thank you for educating me! Happy Thanksgiving. Kelly
erash I have this same problem. It can be the wind howling outside my bedroom window or the window screen rattling, some things so little. Sometimes my heart gets to racing so fast I start to hyperventilate.
Judi4 you should see me during a thunder storm... Not a pretty site. I've been afraid of them since an incident about 15 yrs ago. And lm trying to get over it, but OMG they make me jump
Jesmcd2 I'm so sorry. I know I've become more sensitive to the sound of thunder. I always give people a look 👀 of 'Are you crazy,' when they say they love storms or rain. I know we need the rain for things to grow, but I could actually do without it. That might be coming from the prissy girl in me. I never liked getting wet or dirty.😂 Can I ask what happened to you 15 years ago? If it's too much I understand.
Judi4 l don't mind lol it was actually closer to 18-19 ys ago. Gaw lm old lol. I had just moved with the girls, new city, new job, new divorce and they were all in elm. School. And we got hit with the "Labor Day Storm" Thunder, lighting and even a small tornado hit the fair grounds. In flipping Syracuse ny. I just happened to peek out the shades as lighting hit right in front of me. I fell back and smashed my head. Brought home to me, that lm all the girls have and it scared me to death and it stuck. ~shrugs~
Jesmcd2 Oh my!!! I'm sorry to hear about all you've been through. That must of been very frightening. I'm glad you were okay. It's scary to think about what would happen to our children if something were to happen to us. I think that was a fear of mine. I know there were people that could raise them, but not the way I would want.
Judi4 lt was a wake-up call for sure and a very messy divorce. My lawyer told me l could move 100 miles away, as the crow flies. l moved 99.9 miles hahaha And he had 9 months of counseling. Win
I have hearing aids, but get disturbed by certain kinds of noise. The shower fan bothers me also. The cat meowing does , barking , yes. Seems like repetitive noises. Does this relate to the MS sensitivity ? Good thing I can take my hearing aids out, sometimes .MI also get ringing and "cricket" sounds in my ears sometimes
Hi Good_enough it could be? When l saw the ENT he said my hearing problems were MS related? But he was like 12 :/ So lm waiting to talk to my neuro about it
I suffer from SPMS. It just started happening to me. I figured it was associated with MS, as anything "new" usually is. Least of the things that can happen. So, count my blessings...or complain. Especially when there's so many other complaints. Even complaints of people who don't suffer with MS.
Oh yes, I have this terrible. A loud startling noise, or even just being in a crowded store with lots of noise can send me over. I get internal tremors from being startled. They last for hours. Calmness is my middle name.
Hi MichiganMaryLou 😊 I here you about being calm! I don't do crowds well unless l can have a take charge feeling? If that makes sense. Otherwise the sensory overload. And loud noises? Forget it! 🙉
Jes 🌠
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At first I thought is was my hearing interrupted(MS effects it all)..and sometimes even sounds from a show ive seen 100 times, or the panic feeling I get at rustling leaves.Stores are horrible.You are right it is hard to understand if MS or not....Thank you for sharing cause I thought I was nuttier than usual.....!
Yes, I do, that is strange. I did not know it was related to the MS. Thanks for sharing. The other thing lately, is I am seeing, things moving, flashes by on the floor out of the corner of my eye. I don't dare mention it, afraid.
I have issues hearing low tones, but what sends my head into an absolute frenzy is the tv on and my hubby either talking or playing something on his phone. I go into crazy-freak-out, lady! Tell a doctor that and they just look at you with a blank stare. I need to have an MS doctor who actually HAS MS!
Erash...I thought i was nuts, too sensitive etc.I have had ears tested and i have a rare(of course) hearing deficit ccaused invitro before birth.Thought it was that.This i have from MS is different. This can send me thru the ceiling and grates on me at times.I wear ear stuffies too......That does help....best wishes to you erash!
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