Tinnitus in the context of EDS

Tinnitus is not a classic EDS symptom, but may be a bit more common in EDS than the general population. We may be farther along on the spectrum towards having 'fragile ears', and secondly our musculoskeletal issues may exacerbate/perpetuate tinnitus since somatosensory input does this.

I'd like to have a discussion about this if it affects others, and am up for PMing if someone does not want to make everything public. Tinnitus has been very loud for me since 2007, and while the last 3 years have been less detrimental due to habituation and medication, it remains a nut for me to try to crack. My EDS Dx this year raises the question again, if there is not more I can do to prevent the tinnitus.

( Some people are not aware what a serious problem ongoing and relentless tinnitus is for millions of people. Some people have their lives collapse because of it.)

Edited September 17, 2012 at 2:24 pm

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I've had non-stop LOUD tinnitus for many, many years. A little over two years ago, I noticed a significant hearing loss as well. I now use a hearing aide in that ear; it helps with hearing but not with the tinnitus. I've been told "you'll have to ignore it". Ok, most days I can, but some days it's SO loud. What makes me nervous is that my other ear is starting to "ring" too....so afraid I'm going to lose my hearing.

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One of the most common sources of tinnitus is hearing loss. On the plus, often people improve with a hearing aid.

Tinnitus results from (or is at least set off) by a lack of input, and with some people this may be a dip from excellent hearing to normal in a range.

actressmouse-- is life okay with the one hearing aid though? I'd get a hearing test done regularly, and not worry too much about it per se. After all, the fear keeps us noticing it and slows habituation. That said, even having grown used to tinnitus and accepting it as ones body sound is not going to stop it from being a challenge. I filter it out for weeks at a time without paying attention to it-- but it still affects me I believe.

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i have heard of hearing "aids" which can counter the tinnitus. as i understand the exact pitch of an individual's tinnitus is measured and the hearing aid is tuned with a counter frequency which cancels out one's tinnitus

have lived with my tinnitus for seven years. most prevalent when the room is quite and i am laying down. so that ear to pillow had an amplied concerto of tinnitus

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have moderate case of eds. moderate amount of tinnitus as well. it came on though, after a traumatic csf leak which has been ongoing since. the tinnitus would get temporarily aggravated with treatment for the csf leak, epidural blood patches to the spine, and would subside to the usual level after so many weeks. epidural blood patches increases spinal pressure which increases cranial pressure which affects the inner ear

prior to the csf leak, on rare ocassion, about 0 to 3 or 4 times a year, i would get loud episodes of tinnitus in one or the other ear. it would come on suddenly, spontaneously, very loud and last for about 2 minutes until it subsided. it was more of a novelty

it is my understanding that everyone gets tinnitus. it is a matter of getting old enough. those who do not get it, have died before its onset. i also understand that with age comes decreased production of csf and decreased constant volume of csf. there is one membrane between csf and the ear anatomy responsible for causing tinnitus. the cranial volume remains the same, so w/ decreased csf comes decreased pressure upon that membrane

it is the only ailment caused by the csf leak (which was in part caused by the eds) which i have been unable to affect

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waywardtom-- Actually most people will experience some degree of tinnitus all the time, but it is filtered out. The auditory system is full of feedback loops, that contribute to this. A classic study in the 1950s put people without tinnitus in an anechoic chamber and they all started to perceive it. Obviously it's probably better not to test this out, but really most people should be able to identify it and then 'forget' it again, though pushing one's luck is not advisable.
waywardtom, from what you describe I wonder whether you were predisposed to tinnitus, and the CSF leaks started the loud cycle. It seems bizarre, but at time the source can be removed yet the tinnitus remain. It seems to relate to neural plasticity in the auditory cortex, with the phantom sound becoming rewired in a hyperactive pattern.

This thread is really more about chronic tinnitus, where it can be considered an illness. But it is important to realize it is something that occurs on a spectrum and is most often normal. I think people who have it as an occasional nuisance may still have useful insight though. I had about 4 years where it kinda bothered me but never reached a tipping point. Then in 2007 is became to loud, too persistent and I could not attribute it to anything.

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I have tinnitus intermittent admittedly but have it every day to one extent or another. It began with chronic otitis externa, followed by months of antibiotic therapy, drops and suctioning of my canal every month. The tinnitus began and with it bitlateral hearing loss, the ENT advised that when the infection cleared up, so would the hearing loss and tinnitus. It didn't. I am so frustrated with it some days and my ears hurt a lot.

The audiologist said hearing aids would help but would need to be not in the canal as would set off my sensitive ears again and then would be unable to wear them anyway. My ENT suggested BAHA implants, but only when my hearing loss got MUCH worse. It is very frustrating and until my EDS dx he had no idea why I had such sensitive ears, now he looks at me and says it makes sense now.

I am not sure what will happen but I am super keen to hear well again and lose some of the tinnitus but no that in the ear hearing aides will not be an option for me so I guess I have to wait to become very deaf. What a great thought!!!!

Do you have a history of ear infections too?

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I've had tinnitus for 17 years. It seems to have started after a really acute migraine attack. I went to the Emergency Dept at a nearby hospital for help--some young resident wanted to try a "new" medication that was specifically for migraine. I cannot remember the name of it but basically, it stopped the pounding in my head but left all of the rest of the symptoms still going. My ears started to ring and just never quit. I've dealt with this on a daily basis ever since. I find that I can hear everything okay, but my brain cannot distinguish the words I hear or make sense of them. It's like I hear so much that I can't separate out the individual sounds. I can't be in large crowds or noisy spaces. Then, I recently began having a strange "electrical current" feeling throughout my body. So now, between my ears ringing and feeling like my toe has been stuck in an electrical outlet so my whole body vibrates, I have some really nasty days. I feel physically anxious even when I'm not worrying about anything. Anyone else experiencing something like this?

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Frosch -- I know that hearing loss can bring on tinnitus; however, my loss occurred many years AFTER the onset of the tinnitus. Initially, it would "come and go" but when my headaches became severe, the tinnitus became constant.

I do benefit from the hearing aide and, yes, only in 1 ear. I've asked for "masking devices"; however, there isn't such a device (according to my ENT who, by the way, monitors my hearing EVERY 3 MONTHS) that attaches to a hearing aide. The goal is to amplify my hearing in the speech range (which is where most of my loss is) and, by doing that, focus my brain on hearing the words being said to me and not the tinnitus. I've also seen a neuro otologist at Columbia Presbyterian in NYC and received the same recommendation: hearing aide in the affected ear - no masking device available.

I'm a singer and and work in an high school as a counselor. My hearing is very important to me. If I lose it, I will not be able to do my job. I'm sure you can appreciate how different we all are and therefore, how different our priorities will be.

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This is interesting. I've had tinnitis for years. When it first started many years ago, I got up in the middle of the night and went to the piano to try to identify which sound it was I was hearing. For me it was middle G and that seems to help me. Identifying it. It gets worse when I'm in an enclosed space and afterwards. My husband has it normally with the hearing loss(from artillery) and it was interesting that he complains about it more and one day I heard a noise similar to what i hear and said so and he was surprised because his is so much less loud. I know this isn't scientific, but found it interesting that mine is much louder than his, but maybe because I identified the tone I can handle it better. I hear it all the time, but it only bothers me after being in a car with the windows closed or something like that. And I have the electric feeling every once in a while, but don't associate it with tinnitus, I associate with very inflamed nerves. Might be way off, but that's how it feels to me. I've watched people mouths when talking all my life because I don't quite hear what they say and need the confirmation but my hearing tests fine.

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actressmouse-- I am not surprised your tinnitus came first. It can be a very sensitive indicator of hearing deterioration. Say you had excellent hearing in a range, and it declined but was still not a "loss" per one size fits all, this could have initiated the tinnitus.

Otherwise something like autoimmune inner ear disease could explain this order of things, but I imagine you had blood tests. I was tested for this stuff in 2007, and actually came back positive for Lyme disease-- IgM, and to make a long story short, I got treated robustly for it. Lyme disease has been linked to tinnitus by some, though seems to not to be deemed chronic after treatment. The research links are tenuous, and in my opinion if tinnitus has been initiated and carried on for a while, in some of us it is just perpetuated. I think I have an intermittently hyperactive hearing system. Unless there is something we have to learn, I am no LESS likely to get Lyme disease with EDS than not. But some docs, may suggest it was not Lyme or was not EDS, when probably it was both. EDS could increase vulnerability to Lyme in any number of ways. ( Oh, and I am such a tick magnet and have had so many, that perhaps it's more likely in my case.)

Tinnitus is initiated by damage/irritation to the auditory system. This statement is nonspecific but probably is about as much as can be confidently claimed. It's frustrating, but I neither believe 1) that there is nothing we can do about it, or that 2) Tinnitus Retraining Therapy (TRT) is the holy grail. I'm irked by claims that because our reaction to an aversive stimulus (tinnitus sound, pain etc.) determines suffering (to some extent), that proper habituation is the solution. It still can/will be a challenge if the symptom is potent enough. And the inference that follows, and is espoused by some, is that reaction/attitude is the problem in itself. This is also linked to older notions of tinnitus being an ear problem (vs. evidence is is in the brain often).

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I'm 60 years old, recently diagnosed with HEDS and have had tinnitus since childhood. I remember lying in bed listening to "crickets" as a very small child...when there were no crickets or singing frogs, etc. My silly brother never could hear those crickits. I can't say that it's bothered me all that much. Mostly I just need to keep some white noise going (the slight hum and whoosh of the A/C is perfect for this!) or I start to be bothered by my tinnitus.
About three years ago I started to notice that I was loosing some of my hearing and went to an ENT for an exam. He had an audiologist in the office that also tested my hearing. I did have some loss of mostly higher frequencies, normal for age. No other pathology was found. I still have the tinnitus that I've always had but the doctor just kept saying that it was normal for my age despite telling him that I had it since childhood. <sigh>

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Most regular ENTs are not very helpful for tinnitus, except that many will prescribe benzodiazepines that do help some people. I went from the DC area to Boston in 2009 to see the only tinnitus specialist I have seen.

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Needless to say, I've been tested for everything under the sun....including Lyme. Everything negative.

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Tinnitus is common in the general population but I think more so in EDS. My son is young and has had tinnitus for years. It must be difficult to live with.

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Sandfeather -- Too funny...I love that you tried to identify the pitch of the ringing...I did too!!! Mine seems to be right around yours (middle G) but I also have 2 more (in the same ear) 1 is a third above middle G, and the other is an octave above. What makes me nervous (even with all the testing, monitoring, etc.) is that my other ear is starting to do the same thing...ring intermittently. If it follows the same path, I could be looking at more loss in my now "good ear". Ugh!!!

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I started having tinnitus 9 months ago when the rest of my neuro symptoms started. I have it "in my head", not in my ears if it makes sense. It's constant and I hear it the most when there is no white noise. It bothered me at the beginning and I slept with the White Noise app on, but then I got used to it. The amazing thing happend yesterday -- I'm trying this special chiropractor treatment called Atlas Orthogonal. They don't do manual adjustments, they only re-position the Atlas or the first vertebra using precise x-rays and their special device. So yesterday was my first treatment and when I woke up during the night, the first thing I felt was ... quiet. It took me a bit to realize that my tinnitus was not there. Hopefully it will stay this way and doesnt go back, we'll see.. I'm trying this treatment for dizziness, so the fact that it had an impact on the tinnitus gives me some hope.

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actressmouse-- I matched my tinnitus too. It's the sound of an old CRT TV or computer monitor, especially one on the fritz. That's about 16kHz. I have used tone generators on the computer. There are free iOS and probably android apps.

I've had people seem amused that I match the pitch, describe it, as if it is totally bizarre and quirky of me. They fail to appreciate it's a percept just like other sounds, at least for me. Also, while the tone of ones tinnitus is not highly informative, it actually can give insight to the origins. Tinnitus brought on by NSAID medications tends to be a high-pitched squeal. The one tablet of Celebrex I tried send my tinnitus into overdrive, and 24 hours later I was thinking never again! On the other hand I get away with light ibuprofen usage.

Ht888-- I am most intrigued by your cool development, and plan to follow up with you in some days. I wish you improvement with the dizziness.

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Ht888 I just looked that up and it sounds really interesting. It sounds like it would relieve so many of the issues. I think I'm going to look up someone locally that does that. I haven't done chiropractor for years because I had my brain hemorrage a couple of days after a manipulation and my husband turned freaky about the idea of chiropractors after that. He feels that it somehow caused my problem. I think it was coincidental but since I now have osteoporosis, I wasn't sure about forcing anything. That doesn't sound like it's forcing anything and sounds promising. Thanks for the info.

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Hi sandfeather, yes there is absolutely no force, you don't even feel the adjustment. These guys are very knowledgeable -- they were able to pick up Chiari 0 on my MRI. The radiologist report came in clear, but this chiropractor pointed out that the cerebellum tonsils have to be 2 mm above the line, but mine are 1 mm below. So he thinks that some of my symptoms are because of that. He explained that sometimes they see that the tonsils can actually move up after this adjustment. So I hope. It's a 6 weeks treatment, but I may require more follow ups because of EDS. He was honest upfront to say that this adjustment may or may not help.

Look up someone in your area who is preferably on the board of their organization. I go to Dr. Colavita in NJ. He works with Dr. Rossa in NY on several trials regarding CSF flow in Chiari, Parkinson's and MS patients.

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Thanks so much. Hugs.

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