Does anyone else here get tinnitus? Mine is most noticeable when I’m in a quiet space. I get a really high pitched whistle and an underlying ‘thrum’. It’s in my list of symptoms and seems to get worse when I’m hot and / or tired. I had a hearing test within the last year and nothing was found even though I have trouble hearing deep voices. Hubby frequently asks me if I’m deaf…I’m wondering if the tinnitus, which I don’t usually notice with normal daytime background noise, is getting in the way. Sometimes I hear the sound but don’t connect it with a meaning straight away. Feel like I need a human M.O.T. Any tips for coping with tinnitus?
No tips, I’m afraid, but I get exactly the same! I, too, had a hearing test a few month ago and was told I have perfect hearing!
Mine is normally a very faint high-pitched whistle with a ‘shushing’ sound, but sometimes the whistle kicks in big-time, and sometimes even makes me jump!
Does anyone know if this is a normal MS symptom??
Snap!! Yes I get both the tinnitus AND the deafness!! Constant tinnitus since my balance issues started in April and I keep getting told I’m deaf too!!. I’m thinking its not deafness as such as my test also came back with perfect hearing results but its more about when I’m concentrating on one thing my mind does it to the exclusion of all other things. If I’m watching telly and my girlfriend talks to me it’s lot luck whether it registers. Maybe it’s because my brains not getting the signal that my ear sends!?!? Don’t know but it’s hard and really annoying (probably more so for the missus!!!) Mick
Hi guys/girls,
Yes i have tiniitus too…it is a high pitch whistling and also a whoosing. Its louder when things are quiet and i cannot hear very well when there is lots of noise (have 4 kids so thats all the time!). Hubby gets the major hump and he yells alot now so he’s positive that i’ve heard him!
I also have good hearing but i have a lesion in my pons (the part of brain that controls balance and hearing) and its this that causes it. I have been left with partial deafness in right ear…and i say partial as it is def less clear in that ear than my left one but its not deaf, if that is clear at all. Its just not like the other one.
Its been 18 months since my first relapse and i still have tinnitus and a partial deaf ear…so guess its not in any rush to go. Oh i am only on gabapentin (this can also cause tinnitus, but mine just got louder as i already had it!) and start dmd’s when my neuro sorts out apaperwork.
Hope this helps a bit.
Lea xx
Purpledot - I’ve read somewhere on this site and elsewhere that it can be a symptom of MS. Though as I am now very aware, you can tick many MS symptom boxes without actually having it. …Puddytat - ditto. I think that the sound is going in but not being registered or as you say, you’re concentrating on something else to the exclusion of your brain translating sound into meaning. For me this has led to many emotional confrontations because I get accused of not listening. Hubby and I have been together for 20 years (my first and only…aww) and it didn’t used to be such a problem. I’ve noticed that pitch of voice also makes a difference though. I can hear kids and women better, in general. Lea - good luck with your treatment! I’m still at the beginning of the diagnosis journey. I hate the idea of taking things that produce side effects 
Do you have any strategies to cope with the tinnitus (apart from turning up the volume on your OH)?
Purpledot. I’m with reiki on this one. It could be MS but It could be a million other things to be honest :-s. frustrating that’s what it is!! Reiki. I think you’ve right. Low pitched or quietly spoken people are the ones I seem to not hear. I’ll have to tell my girlfriend to start screeching at me and then I’ll hear everytime!! 
Lea I’m the same as reiki, still waiting to be dx’d having just had my MRI yesterday. Have you found in general the meds to be worthwhile taking?
hey, the gab has ramped up the tinnitus but i have managed to convince myself that at night (when its loudest) thats its soothing and i sleep like a babe.!!!
But at the begining i slept with earphones on playing a quiet soothing song and that kinda helped me alot! Dont know if this will help you guys but as it is def part/symptom of my MS i am aware that it may be to stay and i have dealt with it.
Occasionally at work a random noise will kick it up in volume and this passes after about 5 mins, same as if one of the kids screams…it really is horrid! but these are only loud passing moments and generally i find it not too bad.
The gabapentin helped massively with thte twitching and buzzing from sensory symptoms and although my tinnitus is worse, i find it a fair trade off to be honest.
Good luck with your journeys in limbo and hugs and luck for you all. If i can help you in any other way feel free to ask anytime.
Lea xx
Hi, yes I’ve had it since my first MS symptoms. Had my hearing tested and have mild hearing loss… although recently I have to watch TV with subtitles so maybe it’s got worse.
At first I used to try and mask the tinnitus… and bought a ‘sound box’ from Action on Hearing Loss… which plays sounds of the waves, or rain or whatever. It does help and worth buying one.
As time has gone on (had it about 8 or 9 years now) I’ve got more used to it and often prefer silence.
Make sure you get your ears checked out by ENT (see GP for referal) just in case it’s something else causing it… but if it’s MS I’m sorry to say it’s a case of getting used to it… which believe it or not you do.
Mine is also worse when tired or stressed. It comes as a warning sign to take things easy.
Pat x
Thanks Pat (beautiful avatar picture by the way!) I think seeing an ENT specialist may be my next stop after the blood test anyway as dizziness is currently one of my worst symptoms and ENT was mentioned at my last appointment. I know I’ve had this high-pitched noise going on for some time and at the moment it doesn’t seem to be affecting my sleep but does seem to be getting worse as I’m noticing it more often. I agree about it being worse when tired…I’ve just done a bit of gardening which has tired me out a bit and it has become louder again.
1 Like
If your blood come back clear reiki try to get a referral to ENT and neuro at the same time. My doc did and I’m glad he did otherwise I’d still be waiting for the neuro appointment now!!!
Yes, definitely get it checked out by ENT just to be sure.
What is it about GPs that they tend to want to get one referral done and dusted before they do another one? Mine is the same, which is so frustrating when you think of the time we have to wait for each appointment.
Reiki, I’d definitely ask if he can refer you to both at the same time to save time down the line. I had to do this with my
GP, and he actually did as I asked which probably saved a couple of months in the end.
Isn’t it enough that we feel so lousy a lot of the time, without having to fight for every little bit of help along the way? Soooo frustrating…!
Purpledot, I’m reluctant to ask to see a Neurologist again at my next appointment based on my doctor’s ‘hold your horses’ type reaction. I’m not keen to wait unnecessarily though either.
I have tinnitus and had it for many years, hearing loss became worse in (overnight) in 2006 and need a hearing aid. My hearing and tinnitus has suddenely got worse over this summer, only in the right ear. So I asked to be referred to a tinnitus specialist and she was great. She helped me understand how it happens. Seemingly having any hearing loss gives tinnitus a gateway to come through and stress makes it worse. Also it is true, with deafness higher pitched voices are easier to hear than softer tones. Along with high pitches and feeling I am in the eye of a tornado at times, I now have what sounds like a loud heartbeat in my hear, which she confirmed is blood rushing through and pumping up, its really uncomfortable. Being fitted with a high powered hearing aid and she gave me relaxation excercise’s. Also being referred back to ENT as they thought originally it was a CVA that caused the first sudden deafness in 2006 but nothing found on MRI of ear at the time. Will see what they say this time. I am not dx with MS but still being seen every 6 months by Nuero because of other symptoms.
x
Hi Medion, thanks for that. I wish you all the best for your next appointment. I was surprised when my hearing test came back normal. I can still hear very high pitches like the electrical whistle of the computer or a transformer being on. Which also sounds similar to my experience of tinnitus, but one if them I can switch off. I’ve heard that beating sound too but only under great stress, I think.
when you have a hearing test they always look at specific sounds, if a conversation was part of the test, then I think more people would be seen to have hearing deficits??
A hearing aid to me is only an amplifier of sound and does not always help you understand what people are saying, they just make sounds louder, which can be very disturbing and confusing.
So maybe a hearing test is to see if you need the hearing aid which will be fitted within the range of its capabilities rather than whether us humans and hear and understand a conversation. So you may have a deficit in your hearing but not enough to justify the use and within the capabilities of a hearing aid.
hope this makes some sense
Catherine