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.....

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

Postby Blaadyblah » Wed Jul 13, 2011 4:52 pm

Hi, yes my ears have been blocked for years. If you do a search within this topic (top left box) for eustachian I think you might find the results helpful. :)
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Spireite » Wed Jul 13, 2011 6:23 pm

Yes Little Miss Whoops,

I've had a very bad hypermobile neck for 11 years leaving me lying on the floor all day. I also had a lot of eye, ear, sinus problems, numb cheek, tinnitus, intensely itchy ears etc. I used to have problems hearing with a stethoscope too as that closed my ear off.

But as I have treatment for my very bad neck and as it gradually improves and becomes less hypermobile, so do the ear and other symptoms above melt away. As I have more neck treatment and it is temporarily aggravated, then the symptoms temporarily come back. So there seems to be a clear connection to me between my hypermobile neck and also jaw, which is closely connected, and hearing loss, tinnitus, intensely itchy ears and other ear problems.
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Little_Miss_Whoops » Fri Jul 15, 2011 5:22 am

Thanks Blaadyblah and Spireite!

I'll look up eustachian and see what goodies I can find :)

Spireite - It's so great to hear you're having some success with your treatment! I've had about 16 treatments of prolotherapy in the base of my skull but there has only only been a slight improvement overall and no progress anymore (maybe I need it between vertebrae instead). What treatment are you having (if you don't mind me asking)? Interesting that the jaw has an impact on the ears too - my jaw is quite mobile so that would make a lot of sense!

Thanks again! :D
28 years old with chronic neck/head pain (amongst other aches and pains)
- Coeliac Disease diagnosed 2006 - HMS diagnosed 2008 - Astigmatism in both eyes from birth -
- Loose hips as a baby - Severe Vitamin D Deficiency (<10) - TMJ Dysfunction -
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Spireite » Fri Jul 15, 2011 9:29 pm

Yes Little Miss Whoops, I've had prolo in the base of my skull as well as the rest of the vertebrae, neck and all the rest, SIJs and most importantly feet. What doctors don't seem to realise is that bodyparts are connected. Per my experience doctors and physios don't study or understand biomechanics. For my own body, it seems to me that for each body part, half the problem is local to that bodypart and half the problem stems from faulty biomechanics from other bodyparts. So just addressing the one particular bodypart is never enough for me/us methinks. That will lead to a suboptimal result.

In fact, the last prolo I had nothing above C2. I had every vertebrae down starting at C2, SIJs and then extensively feet and ankles to reduce my severe overpronation. And yet that temporarily affected my ears again, with temporarily hot and painful ears, tinnitus, couldn't hear with a stethoscope due to gunged up sticking ears for two weeks and the C0 area became very tender also. Now at 5 weeks and all that has gone and all is great again (thank goodness cos I had an exciting drama with an unwell cardiac patient yesterday). I shall continue to attack my feet and ankles to improve my head symptoms and leave the base of skull alone for the time being.

So if you have bad ears, how are your feet? If you are not pronating correctly, then it seems clear to me to address that to improve your ears. I could explain the biomechanics how that works from legs, to pelvis to spine all the way to the skull, but I have already in several posts on this forum. Or it could be a weak link anywhere in the kinetic chain. Bodyparts are connected even if doctors and physios don't know it.
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby Little_Miss_Whoops » Sat Nov 05, 2011 6:57 am

Sorry for such a delayed reply! I have just been diagnosed with tmj dysfunction which I believe is causing all my problems (plus the hypermobility of course)! I wish I had thought of this years ago :duh: I'm starting treatment next week with a neuromuscular dentist so I'm quite hopeful that I will have some relief from all my pains and blocked ears :D

I think I'm pronating correctly but my body might be a bit out of alignment from the tmj issues so I'll get that checked out at my next physio appointmnet too.

Thanks for all your ideas! I hope everyone's ears are bahaving themselves :)

Gentle hugs :hug:
28 years old with chronic neck/head pain (amongst other aches and pains)
- Coeliac Disease diagnosed 2006 - HMS diagnosed 2008 - Astigmatism in both eyes from birth -
- Loose hips as a baby - Severe Vitamin D Deficiency (<10) - TMJ Dysfunction -
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby PhoenixRising » Sat Apr 06, 2013 11:36 am

I searched out this thread as I have been noticing some hearing issues. I first remember thinking my hearing wasn't as good as it used to be in 1996 after having my first baby, which is also when I started having ongoing pain and fatigue. Recently it seems to have got worse- the main issue is picking up dialogue on TV. I have to turn it up really loud so the music and sound effects are often too loud, and still sometimes have to work hard to pick out the speech. Lately I have noticed some tinnitus at night (unless there really is an unidentifided humming thing in my bedroom but I can't find anything!

At the same time as that I can be noise sensitive and notice small noises that others don't hear, wake up if the dog huffs in his sleep etc.

I have had recurrent problems with inflammation in my eustachian tubes (and also sinuses, and asthma), I used to have attacks of it where I would hear loud rumbling in my ears and had a sensation of pressure in my ear, along with dizziness and nausea, and the GP said my eardrum was bulging due to the pressure. I still get a feeling of blocked ears, and a travel sick kind of nausea sometimes. I also have itchy ears and recurrent swimmers ear in one ear.

Going gluten free seemed to help reduce the inflammation but hasn;t got rid of the problems completely.
HMS (diagnosed Feb 2012, aged 38): food intolerances incl gluten, allergies, asthma, IBS, GERD, RLS, hypoglycaemia

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

Postby misosoup » Sat Apr 06, 2013 2:16 pm

Until I came on here I never thought my ear problems were possibly joint related.

I've always had a clicky jaw and nose and ear fulness. I put it down to adenoids and stress.

But a few years ago my ear problems became unbearable. I developed vertigo, really bad ear fulness and pressure, hearing loss, ear pain, tinitus and I could only be in a car for more than 10 minutes before throwing up. I would feel nauseaous just from walking around. It got so bad I became suicidal. I had so many ear tests- Menieres, balance, checking for fluid, and nothing. I even had an operation on my nose to widen the nose passage to see if that helped, and they noticed that my adenoids were fine. I also have problems with pain in my saliva glands, dry mouth and sores and ulcers. I also get pain in my neck and shoulders.

So I'm guessing that it's down to the joints rather than the actual ear, which makes sense.

Do your symptoms get worse in humid weather? When the air is damp, I have to sit with a bag of peas on my jaw and ears to relieve it, and massage my face. Not that it helps much.

Giving up dairy and lessening gluten helped with the stuffiness in my nose, but I still get the swelling and pain.
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby bendyneck » Wed Apr 10, 2013 11:42 am

Hope you are enjoying the Easter hols, we even have a little sunshine today! Over the school holidays I have not been setting my alarm clock which means I have been waking up naturally, lovely! When I wake up though, in that moment when I am awake but have not moved or opened my eyes I am even more acutely aware of my tinnitus. A worrying symptom though is that every minute or so the tinnitus completely stops. It is like someone has turned off a waterfall and all of a sudden there is complete silence, then fractions of a second later it starts again. I have been looking up tinnitus on the web and think I probably have pulsatile tinnitus, I am worrying that the silent moments are when I am skipping heart beats. The silences don't happen during the day even if I sit quietly and meditate there are no gaps in the rushing/ringing sound in my ears, just happens when I am asleep. Sometimes though I wake up in the middle of the night with a racing pulse. This used to happen every night before I started taking amitriptyline, now just once in a while. I am on the waiting list for the autonomic unit but it could be many months until I get an appointment, should I bother my GP with it or is he just going to think I am coming up with another made-up symptom? How urgent do you think it is that I get this investigated?
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby PhoenixRising » Sun Apr 14, 2013 5:22 pm

Can you feel your heart doing anything funny at the same time? I get ectopic heartbeats sometimes- where there is a pause and then an extra big flup, my pulse skips a beat at the same time. Sometimes I get bouts of it happening every 3rd beat or so for a while.

Holiday in the middle of nowhere has confirmed I have tinnitus, could hear it all day and night when at the cottage, same hum seemingly coming from my left ear. I also have mild fullness at the moment. I really ought to try stopping dairy again, gluten free is good but from past experience I know that gluten and dairy free is even better.
HMS (diagnosed Feb 2012, aged 38): food intolerances incl gluten, allergies, asthma, IBS, GERD, RLS, hypoglycaemia

"Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor." Thich Nhat Hanh
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby bendyneck » Mon Apr 15, 2013 11:41 am

Hi Phoenixrising, thanks for the reply, glad you had a holiday, its so nice to get away.

I have had the tinnitus for a long time, I can't even remember when it started, but the silences I have only noticed over the holidays as I was not setting my alarm clock. The silences feel like 'hiccups' in the rhythm of the tinnitus, so I guess that could be a 'flump' I think they are only happening at night and am wondering if its something to do with sleep apnea of as you say skipped heart beats.

If you are suffering with 'fullness' in your ears I would definitely give the gluten and dairy free diet a go, I also have to avoid soy so I have now use unsweetened almond milk, it doesn't split in tea or coffee.
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby PhoenixRising » Tue Apr 16, 2013 7:10 pm

Thanks bendyneck. Have been gluten free 5 years this month (yay for gluten free fish and chips in Whitby!), for some reason I find it easy to stick to, but dairy is totally different, I just can't seem to stick with it. I think it is partly because the symptoms are quite mild compared to what happens if I eat gluten, and also because taking dairy out when I am already gluten free makes my diet feel so restricted, and then I start messing about more. Well, I am an ice cream, chocolate and cheese addict :lol:

I don't know about the tinnitus thing. When I have ectopic heartbeats I can clearly feel it happening in my chest. My tinnitus is pretty consistent. At home the drone of the main road (or the yelling of the kids!) drowns it out!
HMS (diagnosed Feb 2012, aged 38): food intolerances incl gluten, allergies, asthma, IBS, GERD, RLS, hypoglycaemia

"Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor." Thich Nhat Hanh
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby loosebones » Wed Apr 17, 2013 11:59 am

Both my Eustachian tubes are blocked and I have fluid behind my ear drums. Because of this I get really frequent ear infections and over the winter had to have 5 sets of antibiotics for ear infections that wouldn't resolve. I asked my dr what, if anything can be done about my ears but she said unless I have hearing problems they can't do anything. I've not had a hearing test but do struggle to hear certain things and if I'm somewhere with lots of people I can't hear what anyone is saying to me. So far the only advice given to me is to pop my ears 3-4 times a day but this isn't helping.
Can anyone help?
Thanks
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby bendyneck » Thu Apr 18, 2013 12:47 pm

Hi Loosebones, not that I want to 'teach my grandmother to suck eggs' :lol: but are you on a gluten free diet? Before I went gluten free I used to have constant post nasal drip, blocked sinuses and horrible amounts of phlegm in my throat, this led to me picking up every cold and infection going.
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby loosebones » Fri Apr 19, 2013 12:16 pm

I'm dairy, wheat, gluten, eggs, sugar, nut, yeast and other food things free. I can't really cut anything else out :S
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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Re: Ears and hearing loss..(inc hyperacusis/Tinnitus)

Postby bendyneck » Fri Apr 19, 2013 12:35 pm

I thought I might be stating the bleedin' obvious! :oops:
migraines, fatigue, multiple chemical sensitivities, gluten and lactose intolerance, bursitis, ulna nerve pain, hypermobility, and possibly POTS.
Finally Diagnosed with HMS/EDS on 5th September 2012 by Professor Grahame
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