Tinnitus anyone?

In the opinion of my neurologist, my tinnitus is not related to MS, but it began during the same period when I was having real exacerbations (optic neuritis, trigeminal neuralgia) just before I was diagnosed. Some days now it is louder than others, and recently I have reacquired the startle reflex that is seen in infants. The noise doesn't have to be loud to startle me, just unexpected. More disturbing is that I seem to have also picked up an aural memory (I don't know how else to describe a remembered sound) that I "hear" though I know it isn't real at the moment, e.g., a train whistle that wakes me from sleep though the nearest train track is many miles away. If MS can damage the optic and facial nerves, why not those of the ear?

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  • goatgal

    I get the tinnitus, right side hearing loss, exaggerated startle, and. Hyperacusis (amplified sounds) sometimes all at once other times independently.

    Although the startle and hyperacusis are ever present.

    My neuro says not MS. My neuro nurse practitioner and 3 ENTs say it is MS. My hearing tests are normal but my husbands hearing aid helps when my hearing vanishes .

    ๐Ÿ˜œ MS symptoms are so strange

  • erash Thank you so much for sharing your expertise. I was feeling crazy because I have never used power tools, always protected my ears when I mowed the lawn with the riding mower, never attended loud music events. And I do remember one hot afternoon long before I was diagnosed when suddenly as I was walking across a school campus my hearing and vision simultaneously faded and dimmed. It was so sudden and dramatic that I sat down on a bench to wait for help. After a few minutes, everything was back to normal and I got on the freeway to go home. Because I was so frightened, I went to my doctor the next day,who gave me an EKG as well as the impression that he thought I must have imagined it. Since then, I've never experienced this sudden fading as dramatically or simultaneously but it has occurred separately.

  • Hi goatgal l had my hearing tested here in hickville, by doogie hosier. He said yes to tinnitus being connected to MS. But as you can see, the amount of trust in that isn't exactly there. ๐Ÿ˜’๐Ÿ˜Š So lm going to the University Hospital for a proper one as soon as l make the appt. ๐Ÿ˜…

    J ๐ŸŒ 

  • jesmcd2 Thank you for reminding me to make an appointment with Doogie at the audiologist. On days when the tinnitus is roaring, I want to withdraw from the world. If we have normal hearing, yet suffer the effects, it's another one of those hidden symptoms of MS. And no matter what my neuro thinks, I believe it is MS related.

  • No problem goatgal ๐Ÿ˜Š can you make mine also? I need an MRI appt made to๐Ÿ˜ Thanks! ๐Ÿ˜…

    Jes๐ŸŒ 

  • My oldest son, who also has MS, has issues with tinnitus. He's had his hearing checked several times, and his audiologist has come to the conclusion that it is his MS.

    I'm fortunate that my hearing is still excellent at 57. I didn't attend loud concerts or turn my stereo up when I was younger.

  • No tinnitus, erash, but when my MS symptoms first began So did my strange stereo sensation...like all of a sudden it shuts off on the left ear, then someone switches it back on a few minutes later. It drives me nuts at times. My hearing is fine. My neuro never really said much about it when I mentioned it. I just live with the speakers switching off and back on from time to time.

  • That's weird ๐Ÿ˜• Tutu they never looked into it?

    J ๐ŸŒ 

  • No. I just racked it up to another weird sensation and never mentioned it again after the weird look I got when I told my doc about it.

  • I'm glad you mentioned this. I don't have tinnitus, but the are times when I "hear" a vague ringing as though a phone is ringing in the distance. I've gotten up to search for my phone, only to find it in my pocket.

    Our pastor suffers from tinnitus and has hearing loss. His hearing aids have a setting that eases the tinnitus. I don't know if hearing aids are used for only the tinnitus.

  • Reading all these comments reminded me of my mom. A few years before she passed she was on some med. (a muscle relaxant I think) and it made her a bit loopy for awhile. During this time she kept hearing two songs that kept playing in her head. I don't remember what one of the songs was, but the other was "Nearer My God to Thee"

    My point is, could meds. in any way be the cause of your problems??? You never know.

  • bavery207 Thank you for your suggestion. It's a good one as so many meds have side effects as well as interactions with other meds. But, it's probably not the answer as I take no DMTs, just meds for blood pressure (and I've had the tinnitus longer than high blood pressure meds). Tinnitus is the least of my problems, but it sure is annoying!

  • To say the least goatgal โ˜บ I just put on ocean sounds when it gets to bad now.

    J ๐ŸŒ 

  • Yes, only my right ear, and present when I have flares (towards the end of the day when I'm exhausted) or a relapse. It's been there since my second ON episode, probably 5yrs before being diagnosed. I've read this same msg on other boards, it's not a common symptom. I've never had it checked out by an audiologist to say it's something besides MS, but then I don't hear trains!!!! ๐Ÿ˜ต

  • I forgot to say one thing about my ear, I can hear L'hermittes. It sound like when they give you gas to put you out before surgery.

    Or I'm totally nuts.

  • Hi Goatgal, mine is permanent in left ear - a low rumbling sound. Arrived a month into 'suspected brain infection' 4 years ago. Occasional in right with high pitch - makes an interesting duet ! A few seconds of deafening juggernaut noise in left sometimes, like an agressive inner ear muscle spasm. I've forgotten what the sound of silence is like ! : ) x

  • Don't have tinnitus or hearing loss, I actually think my hearing has improved. I keep turning things down. I am very sensitive to loud noises, you would think I had PTSD the way I react. I am a veteran but have never been in or near combat.

  • Dear goatgal: I had pernicious anemia/b12 deficiency and I had very persistent tinnitus. In reading general summaries on b12 deficiency/pernicious anemia, it doesn't always mention tinnitus. But, in looking more deeply into the subject since being diagnosed, I have come across studies and lots of personal stories which do mention very high rates of tinnitus among those with b12 deficiency and/or pernicious anemia. I am not diagnosed with MS, but I have concerns about persistent b12 deficiency symptoms so I joined this list and searched for people with both b12 deficiency and MS. I noticed you mentioned you had b12 deficiency at one point in a different post. So, just though I would mention it for you to add to the list of possible causes to consider!

  • addie18 None of my blood labs have noted anemia, but the first of many since diagnosis did show very low B12. Since then (2010) I have been on B12 injections. The tinnitus began sometime in the 90s, intermittently at first, varied in types (clicks, quacks, swooshes) and now just a high pitched whine. At my internist's suggestion, I also take an oral supplement. I really don't care what neurologists think. It makes sense to me that it is nerve damage caused by the MS since I do have flares of optic neuritis and trigeminal neuralgia. If my optic and facial nerves have been affected by MS why not the auditory?

  • I didn't have anemia either, but I was diagnosed with pernicious anemia because my labs showed intrinsic factor antibodies, high homocysteine and low b12. This combination is now considered to meet the definition of pernicious anemia by some doctors even in the absence of anemia. Apparently when the condition was discovered at the turn of the century, they thought anemia was the fundamental characteristic, hence the name. But the medical community now recognizes that intrinsic factor antibodies are more the cause. Anyway, this may all be moot to you since you take b12 injections anyway, and b12 injections are the main treatment for pernicious anemia. Tons of materials I have read on the subject of b12 deficiency talk about 'sub-acute combined spinal degeneration', which can be seen on MRI. So, a person who is an MS patient and receiving regular MRI's I figure would probably be informed if they had this condition. Demyelination of the nerves generally (including those outside the brain and spine like peripheral, cranial) is often mentioned in passing in materials talking about b12 deficiency. My MRI's were clear, yet I still had symptoms including tinnitus. So, I am thinking maybe some kind of demyelination of the peripheral portion of the cranial nerve (rather than demyelination of the spine/brain that could be seen on MRI)? Obviously I am not medically trained, just throwing things out there. It seems like, after an MS attack, some people's systems would burn through extra B12 since it is involved in nerve repair, thus causing a deficiency if intake is not increased.

  • addie18 Thank you for your clarity and well expressed responses. The first neurologist said I was lacking in intrinsic factor but no one has ever been interested/willing to go through my labs and explain them to me. I've never been able to take someone to appointments to help me ask the right questions when new vocabulary and unfamiliar concepts are being tossed out at great speed. Again, thank you!

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