Always something new with MS... - My MSAA Community

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Always something new with MS...

erash profile image
76 Replies

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 profile image
erash
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76 Replies
WAshingtongirl profile image
WAshingtongirl

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.

Great topic, Erash.

erash profile image
erash in reply toWAshingtongirl

Me too Tutu. I have transient right sided hearing loss. Ent says hearing ok, it's my MS.

I try not to attribute every little thing to ms

b/c sometimes it is...and sometimes it isnt <<shrug?>>

dmaskal1 profile image
dmaskal1

Wow, I learn something new everyday. Fortunately I don't have sensitivity to loud sounds, sensitivity myoclonus or hyperaccusis. Hang in there Erash. :)

Karen-x profile image
Karen-x

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.....

erash profile image
erash in reply toKaren-x

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...

Karen-x profile image
Karen-x in reply toerash

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?

erash profile image
erash in reply toKaren-x

Klonopin is an anxiety med that is also used for RLS, seizures, spasms . It's an older drug. Has usual side effects of an anxiety med, mainly sleepy.

Good_enough profile image
Good_enough in reply toKaren-x

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 .

erash profile image
erash in reply toGood_enough

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. 🤓

Judi4 profile image
Judi4 in reply toerash

erash What's frustrating is when the doctor says it's not a MS symptom but so many people seem to have it.

erash profile image
erash in reply toJudi4

My neuro said my transient hearing loss wasn't MS, yet 3 ENTs and his neuro NP and the textbooks say it is...I just stopped telling him about it

AngieRowe profile image
AngieRowe

I don't like loud tv, screaming children, and sounds of games kids play on computers. The noise just gives me sensory overload.

Momjules profile image
Momjules in reply toAngieRowe

Good morning

I too do not like noise. I sometimes don't even turn the tv on and when I do I mute it.

I live on a busy road ,which never bothered me. I feel like I live in the center median of a interstate highway now..

Is it ms? I don't know.

JMR628 profile image
JMR628 in reply toMomjules

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 profile image
erash in reply toJMR628

Not to mention be a dangerous distraction if I'm having challenges driving some place new or in traffic

in reply toerash

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!

erash profile image
erash in reply to

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.

Thanks! For your concerns 😍

Karen-x profile image
Karen-x in reply toerash

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....

erash profile image
erash in reply toKaren-x

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

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toAngieRowe

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. :/

in reply toAngieRowe

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!

Good_enough profile image
Good_enough in reply toAngieRowe

Funny, that's what happens when kids are around . ...

erash profile image
erash in reply toGood_enough

Yep, that's why I'm volunteering at an elderly rather than kids daycare!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

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

Judi4 profile image
Judi4 in reply toJesmcd2

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

erash profile image
erash

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?

WAshingtongirl profile image
WAshingtongirl in reply toerash

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.

I hope you feel better...💕

erash profile image
erash in reply toWAshingtongirl

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? 😉

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

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

erash profile image
erash in reply toJesmcd2

Jesmcd2 im in! When do we leave? 😎

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

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 ? :D

erash profile image
erash in reply toJesmcd2

Jesmcd2 sounds like an "unhappy" meal 🙁

That's on my "to do" list: make a spread sheet of my new friends in this forum.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

I have a brand new note pad, and l really should keep track haha but it's alot of work. Lolol :D

And it was a very unhappy meal. Was considered a very very special treat.

Had 2 of my angle monster's there tho. My oldest is a Cali girl. ♡ Frigging heathens. Sry they are ticking me off right now grrr

erash profile image
erash in reply toJesmcd2

Sounds like you have an interesting best selling story there 😉

Yes, have to give Tutu credit for making that effort with the spread sheet 👍

jimeka profile image
jimeka in reply toerash

Have booked my flight, Bermuda here I come. What time are we all meeting up? Got my spread sheet packed!!

erash profile image
erash in reply tojimeka

Meet in the lounge for Happy Hour?

2 for 1 DMD cocktails: Copaxone and Tysarbi with a side of gabapentin appetizers 😉

jimeka profile image
jimeka in reply toerash

Hey,lol I will bring the oxycodone!!

erash profile image
erash in reply tojimeka

Sounds like a very happy Happy Hour 😊

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

I have anxiety meds and tramadol we should be all set to go! Woo-hoo :D

erash profile image
erash in reply toJesmcd2

Jesmcd2 id bring sun block but we need the vitamin D 😉

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

I don't use sun block, l use creamy baby oil. Yeah l know l shouldn't but l do anyway lol. And l have vit D also :D

Judi4 is buying the unhappy meals ☆ lol

Judi4 profile image
Judi4 in reply toerash

Jesmcd2 😂💦💦💦 Funny about the unhappy meal.

Karen-x profile image
Karen-x in reply toerash

Love San Diego, just not the traffic and housing prices!

Morllyn profile image
Morllyn

I have been heat sensitive for ever but now I cannot handle the cold very well. Cold definitely makes my spasms worse.

erash profile image
erash in reply toMorllyn

🙁

Amore55 profile image
Amore55 in reply toMorllyn

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 profile image
erash in reply toAmore55

Amore55, I've tried my husbands hearing aids when I have a bout of hearing loss and they help me

Good_enough profile image
Good_enough in reply toMorllyn

Totally the same for me

Iona60 profile image
Iona60

I hate leaf blowers. Actually makes my right ear hurt. Wish they were outlawed.

erash profile image
erash in reply toIona60

I'm not really sure I understand the purpose of leaf blowers anyway. Most just blow the leaves from one side of the street to the other?

Amore55 profile image
Amore55

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 profile image
erash in reply toAmore55

I wish we had buttons other than just a thumbs up here...🙁

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

I wish l had emojis period erash lol

Judi4 profile image
Judi4

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.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toJudi4

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:(

Judi4 profile image
Judi4 in reply toJesmcd2

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.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toJudi4

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~

Judi4 profile image
Judi4 in reply toJesmcd2

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.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toJudi4

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

Judi4 profile image
Judi4 in reply toJesmcd2

Jesmcd2 You crack me up. Not funny about divorce and needing counseling, but that you have a sense of humor about it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toJudi4

Judi4 lol l wasnt the one that needed the counseling, it was him. So it did give me a sense of satisfaction :)

erash profile image
erash in reply toJesmcd2

Jesmcd2 but Syracuse?!? (Joking)

I grew up in Rochester and it was a great place to grow up 👍

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

Lol well in the out skirts of 'cuse. I was born in Roch. And my MS clinic is there erash . I feel like l've come full circle :)

erash profile image
erash in reply toJesmcd2

Jesmcd2 i mostly lived in West Irondequoit

Haven't been back since a high school reunion @ 15 or so yrs ago. Took my husband. It was November and cold and grey 🙁

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

Sounds about right erash l live about 2 hrs south of roch now. And it's been cold and gray. Although the sun is trying to come out :)

Momjules profile image
Momjules

There are times I can't even watch tv

I don't even want to hear people talking

Sometimes my dog barking goes right through my brain

Ugh!!

Good_enough profile image
Good_enough

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

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toGood_enough

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 :)

Judi4 profile image
Judi4 in reply toJesmcd2

Jesmcd2 You are a barrel of laughs. You have made my morning.😊

Mannibal profile image
Mannibal

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.

MichiganMaryLou profile image
MichiganMaryLou

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.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

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 🌠

~Helpful Hint~ If you put an @ in front of the person your addressing, they will be notified. Example: @ jesmcd2 (with no spaces. )🌠

jackiesj profile image
jackiesj

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.....!

Debragm profile image
Debragm

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.

debbie

tenessa24 profile image
tenessa24

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!

jackiesj profile image
jackiesj

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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