Ears and hearing loss..(inc hyperacusis/Tinnitus)

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Re: hearing loss

Postby mo123rabbit » Fri Sep 11, 2009 10:36 pm

hi why is it cant you get an a appointment these days next tuesday before i could get one :wall: i will try the olive oil thanks.well i better go to my bed as i have loads to do tomorrow.bye take care everyone :dance: :bday: :hug:

Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby SAMMY » Sun Nov 08, 2009 4:00 pm

Hey lovely people. I have in the past few months developed very noticeable tinnitus. I have a lot of pressure in my head and listening to my blood rushing drives me insane especially at night. This is especially in my right ear. If this is to do with hms is it worth bringing up with a rheumy? I was under the illusion that tinnitus was caused by loud noise :o certainly not my case. I had a hearing test a while back because of wearing a head phone on telephony and was told it was perfect but I have to turn the phone up full volume or I can't hear. How is that perfect? My ears are sensitive to noise bit difficult to hear at the same time. Any advice please.

Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby jax » Sun Nov 08, 2009 5:47 pm

Sammy, I also get the blood wooshing one and it always
seems to come on just as one is going to sleep. Then I
also get a heartbeat sort of one. I also had tests for hearing years
back and hearing was fine. I've no idea what it's all about!
My other "sound" is like a TV signal.

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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Amanda » Tue Nov 17, 2009 7:12 am

Hi I've had ear infections galore as a child and then started getting infections which went straight to burst eardrum and generally getting worse including hearling loss this last 2 to 3 years. I went to ENT at Huntingdon and guy there said yes my drums were sucked in and to go back if I had an ear infection which would not clear - well I did at the beginning of this year and told the GP this and he would not refer me back!

I went privately and found that I had a cholesteatoma in that ear. We have just moved to the US (5 months ago now) and when I finally saw the otolaryngologist here I was told I had one in the other ear too! Had to have a tympanoplasty (ear drum rebuild and graft) a couple of months ago. I should have had it done back in May but was worried the EDS/healing issue would mean me and 5 yr old in one country and hubby in the other. Wish now I'd had it done earlier.

Anyone else with this?


Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Amanda » Wed Nov 25, 2009 1:30 pm

Hi not a pointless post at all, sometimes it just helps to get it out there.

When you go to the Doctors - can they see your ear drum?

I would get them to check for a cholesteatoma - symptoms probably apply to a number of things but this is what I have and believe me there is no doubt :( One has been removed and the other one left to go. Have to have follow ups very regularly now. I had ear infections as a child and onwards. Recent few years have had a lot of pressuree problems and instability etc.


Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Amanda » Wed Nov 25, 2009 2:30 pm

Sorry you feel so rotten :hug:

I would go to get your ears checked just to be sure. I kept putting mine off and then it turned out to be serious and in fact in the end I said enough is enough, this is not right. Luckily for me hubby had private medical insurance so I decided to get it sorted - had to stump up £80 which was another reason I put it off but am very relieved I did in the end! I am definitely not saying you have a cholesteatoma so don't worry - there are tonnes of things with the same symptoms. For me - the c/toma was a shock - it is a growth which eats everything in its course - why the hell the doctor didn't spot it don't know - he had even attended a seminar on the naffing thing - what a plonker! They hadn't been able to see through my ear drum for the last 3 years....

C/tomas can be caused by pressure in ears / not being able to equalise - so as I say it IS worth a check up.

Big hugs and hope ya bod starts behaving itself

Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby SaucyAlysoon » Wed Nov 25, 2009 4:48 pm

I just wanted to pop in and make a post to clear some things up. I'm in my second year in a doctoral program of Audiology here and I see some things on here that people have said that just don't make sense.

As far as I know, there is no connection between EDS/HMS and otosclerosis. Otosclerosis by itself is pretty common, though, and there's really no way to confuse it with joint hypermobility in the ossicular chain of the middle ear on a hearing test. And again, I have never seen evidence of the link between hyperacusis and HMS, but I can see how it could happen with the anatomy of the ear. A true cochlear loss and HMS have no connection, though. I can see nothing that would link them at all. That said, some hearing loss is quite common, and I think us being in tune with our bodies so well has let us notice hearing loss sooner than most people.

Tinnitus... oh where to start. Scientists haven't the slightest idea what causes it, but they are getting close to a treatment that will help some people. It is most often associated with people with hearing loss, but you can have it with no hearing loss present. I've noticed that people with normal hearing and tinnitus often have a parent with tinnitus, too. Genetic component? Maybe.

On to middle ear issues! Eustachian tube dysfunction is what it seems like a lot of people have been complaining of. The fullness and inability to "pop" their ears. I definitely think this can be linked to HMS, as I have it myself. I either get stuck with negative pressure in my ear and reduced hearing (which you definitely CAN hear) or with an open tube, where you can hear yourself breathing. I also have horrible sinus problems, which are the root of the issue.

I've seen a lot of people saying that they can't hear well in background noise... I don't want to burst bubbles, but that's really normal. You're reducing your signal to noise ratio (or how loud your signal is compared to the background noise), and that's going to make it a lot harder to hear for anyone. So here's one thing you can say is normal! That said, I think auditory processing disorders are highly underdiagnosed and often written off as ADHD.

Seems the audiology system in the UK is extremely different than here, which really makes me sad. So I hope those of you that need hearing or balance help can find a good audiologist to help you. Finding someone with a membership in a professional organization really helps. Anywho, I'll hop off my soapbox now! Hope I could explain some things :)

Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Amanda » Sat Nov 28, 2009 5:00 am

Hi Saucy Alysoon - you post was great and I really hope people are feeling much clearer. I would hve liked to have know how common cholesteatoma is with EDS bearing in mind the sinus dysfunction - can you expand on that.



Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby SaucyAlysoon » Sat Nov 28, 2009 4:22 pm

I have never heard of cholestatoma being associated with EDS... but it is more common in people who have had chronic ear infections. Ear infections often are more prevalent with chronic sinus issues because the membranes in the ear are connected to the sinuses through the Eustachian tube. I hope that makes sense. They're pretty rare anyway and often don't cause issues until they are quite large. I'm very interested in keeping an eye on my own hearing (as well as 2 other people at my school that have EDS) to see if hypermobility becomes an issue.

Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Amanda » Sun Nov 29, 2009 11:30 am

Hi thanks, yes that did make sense. It would seem I just happen to be blighted with yet another rare issue!


Hearing impairment in EDS - mechanism of action?

Postby Clarabel » Thu Mar 04, 2010 10:08 pm

Does anyone know in which particular way EDS causes the possible hearing impairment? I have read a great deal of literature that they are linked, however there is a lack of clarity over why this is the case. I have a few theories, that the eustachian tube valve doesn't work properly so the middle ear doesn't drain, that the eardrum is stretched out of shape or malformed, that the bones don't vibrate properly because the joints are too loose, or that there is a dilation of the vestibular aqueduct, leading to "shock" that should be caught by the middle ear being able to travel down the aqueduct and cause damage to the inner ear structures.

My daughter has an appointment with ENT, and with the risk of keloid scarring they are not touching her with grommets unless she is going to have an exploding eardrum anyway, and they can confirm it's not an EDS progressive loss, cos if she is going to have hearing aids later anyway they can forget putting her through years of pain and infection first. Specially if it's the vestibular aqueduct thing, as the problem from the infection could travel into her ear and cause twice the damage.

How does EDS make hearing losses happen?


Re: Hearing impairment in EDS - mechanism of action?

Postby Stone » Thu Mar 04, 2010 10:17 pm

Don't have any answers, but you missed 'impaired healing of hair cells' and 'neurological defect unspecified' off your list of possible mechanisms :)

I've had tinnitus since I was about 12 but it's not been getting a lot worse (other than after chemo) so I'm guessing it's just another one of those things. My money's on something nerve-related, the nice lady I saw in electrophysiology mentioned people with HMS can have trouble with demyelination so that would fit in. Speculation only though!


Re: Hearing impairment in EDS - mechanism of action?

Postby barkingmad » Thu Mar 04, 2010 10:27 pm

You are so wise to check this out!

Unfortuantely I was not diagnosed until years after repeated grommet surgery on my daughter. Each time they had to surgically remove them and then re-inplant them I was 'told off' about getting water and soap in her ears because of the scarring and tissue damage, I knew it wasnt me but they didnt believe me.

When they diagnosed me and then her, they were very surprised but the damage had been done. She hasnt got a serious hearing loss but there is significant impairment. She also has speech and language issues some of it because of the EDS and vocal cords, and some through the fact she cant hear properly.

As far as I know, its is a combination of issues including extra movement that is the problem. :bye:
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Re: Hearing impairment in EDS - mechanism of action?

Postby Clarabel » Fri Mar 05, 2010 8:48 am

Thanks, there doesn't seem to be any of the research evidence (limited though it is!) that points to a direct effect on hair cells or neurological issues except in connection with the vestibular aqueduct dilation. The aqueduct dilation does seem the most likely, as what always seems to happen is it starts out with a chronic case of conuductive ("glue ear") type of hearing loss, progressing to a sensori-neural hearing loss in late childhood/adolescence. She was certainly born with all her hair cells so if they have developed a fault somehow then there is a mechanism by which they have done that, which I need to be able to tell them else they will say it's nothing and let's see if she magically grows out of it just like I didn't and my mum didn't. :wall:

What concerns me is that the dilation may not be seen on an MRI, as there's no reason to believe the EDS aqueduct is too wide all the time, just that it is too "stretchy", and in the same way that barotrauma and such can travel down the physically dilated aqueduct it can also travel through the EDS aqueduct just by stretching it on the way. It has only been with the introduction of high accuracy MRI scanning that it's been possible to check for this, so I am due to have mine checked. There is no other known hearing loss consistent with an initial conductive loss followed up by a sensori-neural loss of unknown cause, but that doesn't mean that's what it is. I am dreading that they look at the scan and say OK it's not that therefore it cannot be anything. :wall: :cussing: No, you just mean you don't know what it is yet, because I'm certainly still deaf!

We keep getting snarled up in waiting lists, she was meant to be referred for 3-month waiting list in November, and they actually forgot, and they will not put her higher up the list so the appointment is in June. She was initially referred from community screening in Jan 2008, if you can believe that! And who even knows if we are seeing anyone good, it could be the same useless woman as last time, or the guy I went to see for continuous postnasal infection causing chest infection who said "there are many other causes of headaches" and sent me out with a presription for the same thing I came in with, ignoring my protestations that I hadn't come for headaches in the first place!!

Meanwhile back to fighting the education authority and the NHS as one says she cannot have hearing aids she needs a different type of system, the other says she's too deaf for that system and must have hearing aids. :wall:

Blocked ears from neck issues?

Postby Little_Miss_Whoops » Wed Jul 13, 2011 11:05 am

Hi everyone!

Does anyone with a hypermobile neck have problems with blocked ears? I seem to be getting them a lot lately whenever I have to do much housework or need to reach things above me...very weird!

I have problems with chronic neck pain so maybe the vertebrae are squishing an ear blocking nerve or something?

Curiouser and curiouser!

Thanks for any ideas on my zany ears! :D


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