I have ear issues which i assumed to be related to ms, it began with fullness in my ears, constantly feeling like they needed to pop, this was for years prior to diagnosis, at diagnosis I had nystagmus and vertigo, the ear issues progressed to bouts of tinnitus, but thankfully short lived when they occur, and more recently when I become unwell or very fatigued I will experienced a feeling / sensation of my inner ear spasming, my hearing is being intermittently effected, I liken it to the sensation in your ears when your head goes in and out of water, this can last for a few days on repeat every few seconds. I’ve never had any clarity as to if is actually ms related or not.
I am very confident that my tinnitus—that has been going on continuously for multiple years—was either caused or worsened by my MS activity. It is always there in the background, not so much life-changing but definitely irritating many times a day. It’s like an itch you can’t scratch, and eventually you just have to ignore it or get consumed in frustration. There really is no other explanation for the ringing because I have never had any physical problems that would explain it, and I definitely never had anything rupture in my ear nor have I ever had vertigo. The only fierce vomiting I have ever witnessed has only been in old horror movies, and when I was taking cytoxan as a DMT fifteen years ago, and unfortunately my doctor wasn’t familiar with Zofran.
Have had tinnitus since I noticed it teaching back in 2001. Diagnosed MS near 1992. I can pretty much hear through it pretty good as evidenced by hearing noises around the house that my wife doesn’t, and watching TV. I readily don’t pay attention tp it and forget it, and use white noise in bed, which I’d rather focus on instead of the tinnitus. I always assumed, despite MS, that loud rock’n’roll in my heyday was the culprit. If someone said “Hey, I can make that go away”, it’d be great, but I don’t believe that’s possible. Someone please correct me if I’m wrong. Gotta run, I think I hear my wife calling…
Hi Gavin. Omicron Covid has also caused quite a lot of cases of positional vertigo, nausea and tinnitus as it seems to have had the capacity to attack the inner ear. As you know, I don’t have MS but I do have long Covid with the above symptoms as well as fatigue and brain fog. The meds you mention are hugely helpful.
Thank you for raising this as its been bugging me! I developed bilateral tinnitus 6 months prior to (6th CN palsy) relapse in March 21 which lead to my ms diagnosis (having had onset intermittent Lhermittes 14 years prior). I'd since read that tinnitus is not a commonly reported ms symptom, so had wondered whether it had instead been caused by undetected Covid (as I'd had loads of exposure working on Covid wards but no discernable infection)? I've also heard lots of anecdotal reports of tinnitus post Covid in those without ms. Interested to know your view on this. Unfortunately the noise seems to get quite a bit louder in aftermath of Ocrevus infusions too. Intrigued to know what is causing what and is there anything else i should be doing (Seems to be the endless conundrum in aftermath ms diagnosis though?!)
Interesting reading the comments left by others. It makes me wonder about my new tinnitus and vertigo.. the neurolgists want to place the blame on a recent infection ( none), head trauma ( none) or
Infections ( none). Also, have fullness and diminished hearing in the ear suffering tinnitus. Upon exam of my ear there is some fluid.. their diagnosis is vestibular neuritis/labrinthitis.
Since so many of you seem to be suffering from this perhaps I’m just moving on to a new ms symptom. Per one of your previous posts… did get some medical gaslighting! Did my best to advocate for myself.
Thanks again for the valuable information since this has never been asked as part of my exams.
Stupid question, I've just been diagnosed with RrMS, but I do have some tinnitus, it's every couple of weeks and doesn't last more then 5-10 mins, but I have noticed its harder to listen to ppl in loud spaces and differentiate noises. Does this mean I'm more likely to just have v early onset Primary MS?
I have not had tinnitus but my first symptom of MS was a sort of vertigo and nausea which was diagnosed by the GP (over the phone!) as Labyrinthitis, despite other symptoms such as a problem with fine motor coordination on one side and the feeling of time/space being out of sync, it took 10 weeks to diminish. 11 months later the same thing happened and the GP again diagnosed Labyrinthitis over the phone and offered me anti-psychotics despite no physical examination. It was only when my symptoms progressed the next day to being numb on one side of my face/tongue with balance, mobility, cognitive problems etc that they referred me to the A&E.
Clearly neurological symptoms can overlap but I would think that any neurological symptom should be assessed in person rather than over the phone. This was in 2014 and I dread to think how many diagnosis will be missed thanks to Covid changes in GP practices where in-person appointments are now a rarity.
I appreciate that you have brought this up for discussion and you are gathering more information. My first neurologist completely dismissed this as being associated with MS. However, my tinnitus came the same year as optic neuritis and the following year, an MS diagnosis. I was checked out by an audiologist and otolaryngologist who said the tinnitus was caused by age-related hearing loss, though I am under age 50 and did have a brain stem lesion. There was nothing structurally wrong with my ears. I am still unsure if it’s related but it hasn’t stopped in a year and a half.
I have tinnitus and MS. I feel sure they are related, as the tinnitus started a year ago in the midst of a period of relapses, shortly after I was diagnosed. My neurologist (last seen in Aug 2021 and then it wasn't the same neurologist who is my named consultant) didn't seem interested and my GP told me they could only refer me to ENT after a year of symptoms. I waited a year, have just been referred and have an ENT appointment scheduled for June 2023!!!! Argh, it feels to me like the NHS is falling over. My brother also has MS and tinnitus.... No idea if I have hearing issues as you can't get a hearing test on the high st at my age and I await an appointment with ent...
I'm one of your MS patients, and I have tinnitus sometimes. Self-diagnosed and untreated. Tinnitus has never made it anywhere near the top of my list of problems.
I'll do the survery now, but I have a question, please. You post says: 'Please note you do need to have a new lesion on MRI to have a relapse.' I had been told a relapse can be diagnosed by symptoms even without a new lesion? Though, in practice that diagnosis would be very hard to get from most neurologists in my experience.
I have tinnitus, but mine was from an accident I had when I was a toddler climbing up a empty wardrobe. Broke both of my eardrums.
I am 48 and I am getting on with tinnitus treatment on the NHS. I learnt to live with tinnitus from a very young age. I get what you say about having a critical illness and it gets blamed. I often have to tell or ask Dr's to please treat the patient, before blaming the elephant in the room.
Its resulted in improved relationships with Dr's as a result.
I have tinnitus, but mine was from an accident I had when I was a toddler climbing up a empty wardrobe. Broke both of my eardrums.
I am 48 and I am getting on with tinnitus treatment on the NHS. I learnt to live with tinnitus from a very young age. I get what you say about having a critical illness and it gets blamed. I often have to tell or ask Dr's to please treat the patient, before blaming the elephant in the room.
Its resulted in improved relationships with Dr's as a result.
I had to laugh when I saw this in my inbox, because I’m currently sitting in a hospital bed after being admitted with severe vertigo. The Neurology team is trying to rule out a relapse so I had an MRI and they concluded the images compared to past ones look the same.. I’ve never felt so awful in my life with a severe vertigo And vomiting. I have a consult to visit with the ENT for further evaluation. This just came on very suddenly .I was fine and within an hour I was flat on my back throwing up in a bucket. I feel like I’m in a wash machine spinning around .
is there any correlation between diseases of the ear and sinus and future ms diagnosis ?
i have suffered a similar situation with ringing in ears but did have a diagnosed brainstem attack. however for years before ms diagnosis i suffered with hcp professionals and ent's passing off recurrent attacks of sinus issues and tinnitus as "seasonal bugs" which ultimately lead me to accept it. when i had my brainstem attack (which is the one that has caused most of my issues) the ringing never went away and i just assumed it had been misdiagnosed previously.
I have ear issues which i assumed to be related to ms, it began with fullness in my ears, constantly feeling like they needed to pop, this was for years prior to diagnosis, at diagnosis I had nystagmus and vertigo, the ear issues progressed to bouts of tinnitus, but thankfully short lived when they occur, and more recently when I become unwell or very fatigued I will experienced a feeling / sensation of my inner ear spasming, my hearing is being intermittently effected, I liken it to the sensation in your ears when your head goes in and out of water, this can last for a few days on repeat every few seconds. I’ve never had any clarity as to if is actually ms related or not.
I am very confident that my tinnitus—that has been going on continuously for multiple years—was either caused or worsened by my MS activity. It is always there in the background, not so much life-changing but definitely irritating many times a day. It’s like an itch you can’t scratch, and eventually you just have to ignore it or get consumed in frustration. There really is no other explanation for the ringing because I have never had any physical problems that would explain it, and I definitely never had anything rupture in my ear nor have I ever had vertigo. The only fierce vomiting I have ever witnessed has only been in old horror movies, and when I was taking cytoxan as a DMT fifteen years ago, and unfortunately my doctor wasn’t familiar with Zofran.
Have had tinnitus since I noticed it teaching back in 2001. Diagnosed MS near 1992. I can pretty much hear through it pretty good as evidenced by hearing noises around the house that my wife doesn’t, and watching TV. I readily don’t pay attention tp it and forget it, and use white noise in bed, which I’d rather focus on instead of the tinnitus. I always assumed, despite MS, that loud rock’n’roll in my heyday was the culprit. If someone said “Hey, I can make that go away”, it’d be great, but I don’t believe that’s possible. Someone please correct me if I’m wrong. Gotta run, I think I hear my wife calling…
Hi Gavin. Omicron Covid has also caused quite a lot of cases of positional vertigo, nausea and tinnitus as it seems to have had the capacity to attack the inner ear. As you know, I don’t have MS but I do have long Covid with the above symptoms as well as fatigue and brain fog. The meds you mention are hugely helpful.
Apologies for sloppy grammar:
I meant to say (er, write) that the only fierce vomiting I ever EXPERIENCED…
Thank you for raising this as its been bugging me! I developed bilateral tinnitus 6 months prior to (6th CN palsy) relapse in March 21 which lead to my ms diagnosis (having had onset intermittent Lhermittes 14 years prior). I'd since read that tinnitus is not a commonly reported ms symptom, so had wondered whether it had instead been caused by undetected Covid (as I'd had loads of exposure working on Covid wards but no discernable infection)? I've also heard lots of anecdotal reports of tinnitus post Covid in those without ms. Interested to know your view on this. Unfortunately the noise seems to get quite a bit louder in aftermath of Ocrevus infusions too. Intrigued to know what is causing what and is there anything else i should be doing (Seems to be the endless conundrum in aftermath ms diagnosis though?!)
Interesting reading the comments left by others. It makes me wonder about my new tinnitus and vertigo.. the neurolgists want to place the blame on a recent infection ( none), head trauma ( none) or
Infections ( none). Also, have fullness and diminished hearing in the ear suffering tinnitus. Upon exam of my ear there is some fluid.. their diagnosis is vestibular neuritis/labrinthitis.
Since so many of you seem to be suffering from this perhaps I’m just moving on to a new ms symptom. Per one of your previous posts… did get some medical gaslighting! Did my best to advocate for myself.
Thanks again for the valuable information since this has never been asked as part of my exams.
Stupid question, I've just been diagnosed with RrMS, but I do have some tinnitus, it's every couple of weeks and doesn't last more then 5-10 mins, but I have noticed its harder to listen to ppl in loud spaces and differentiate noises. Does this mean I'm more likely to just have v early onset Primary MS?
I have not had tinnitus but my first symptom of MS was a sort of vertigo and nausea which was diagnosed by the GP (over the phone!) as Labyrinthitis, despite other symptoms such as a problem with fine motor coordination on one side and the feeling of time/space being out of sync, it took 10 weeks to diminish. 11 months later the same thing happened and the GP again diagnosed Labyrinthitis over the phone and offered me anti-psychotics despite no physical examination. It was only when my symptoms progressed the next day to being numb on one side of my face/tongue with balance, mobility, cognitive problems etc that they referred me to the A&E.
Clearly neurological symptoms can overlap but I would think that any neurological symptom should be assessed in person rather than over the phone. This was in 2014 and I dread to think how many diagnosis will be missed thanks to Covid changes in GP practices where in-person appointments are now a rarity.
I appreciate that you have brought this up for discussion and you are gathering more information. My first neurologist completely dismissed this as being associated with MS. However, my tinnitus came the same year as optic neuritis and the following year, an MS diagnosis. I was checked out by an audiologist and otolaryngologist who said the tinnitus was caused by age-related hearing loss, though I am under age 50 and did have a brain stem lesion. There was nothing structurally wrong with my ears. I am still unsure if it’s related but it hasn’t stopped in a year and a half.
I have tinnitus and MS. I feel sure they are related, as the tinnitus started a year ago in the midst of a period of relapses, shortly after I was diagnosed. My neurologist (last seen in Aug 2021 and then it wasn't the same neurologist who is my named consultant) didn't seem interested and my GP told me they could only refer me to ENT after a year of symptoms. I waited a year, have just been referred and have an ENT appointment scheduled for June 2023!!!! Argh, it feels to me like the NHS is falling over. My brother also has MS and tinnitus.... No idea if I have hearing issues as you can't get a hearing test on the high st at my age and I await an appointment with ent...
Have filled in your survey. Thanks.
I'm one of your MS patients, and I have tinnitus sometimes. Self-diagnosed and untreated. Tinnitus has never made it anywhere near the top of my list of problems.
I'll do the survery now, but I have a question, please. You post says: 'Please note you do need to have a new lesion on MRI to have a relapse.' I had been told a relapse can be diagnosed by symptoms even without a new lesion? Though, in practice that diagnosis would be very hard to get from most neurologists in my experience.
I have tinnitus, but mine was from an accident I had when I was a toddler climbing up a empty wardrobe. Broke both of my eardrums.
I am 48 and I am getting on with tinnitus treatment on the NHS. I learnt to live with tinnitus from a very young age. I get what you say about having a critical illness and it gets blamed. I often have to tell or ask Dr's to please treat the patient, before blaming the elephant in the room.
Its resulted in improved relationships with Dr's as a result.
I have tinnitus, but mine was from an accident I had when I was a toddler climbing up a empty wardrobe. Broke both of my eardrums.
I am 48 and I am getting on with tinnitus treatment on the NHS. I learnt to live with tinnitus from a very young age. I get what you say about having a critical illness and it gets blamed. I often have to tell or ask Dr's to please treat the patient, before blaming the elephant in the room.
Its resulted in improved relationships with Dr's as a result.
I had to laugh when I saw this in my inbox, because I’m currently sitting in a hospital bed after being admitted with severe vertigo. The Neurology team is trying to rule out a relapse so I had an MRI and they concluded the images compared to past ones look the same.. I’ve never felt so awful in my life with a severe vertigo And vomiting. I have a consult to visit with the ENT for further evaluation. This just came on very suddenly .I was fine and within an hour I was flat on my back throwing up in a bucket. I feel like I’m in a wash machine spinning around .
is there any correlation between diseases of the ear and sinus and future ms diagnosis ?
i have suffered a similar situation with ringing in ears but did have a diagnosed brainstem attack. however for years before ms diagnosis i suffered with hcp professionals and ent's passing off recurrent attacks of sinus issues and tinnitus as "seasonal bugs" which ultimately lead me to accept it. when i had my brainstem attack (which is the one that has caused most of my issues) the ringing never went away and i just assumed it had been misdiagnosed previously.