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I just started having tinnitus.  I have had it before in one ear but this is profoundly different than when I had it some 2 years ago and abated.  2 years ago I had auditory tests and basically it was from some bent hairs that weren’t giving feedback.  I basically reduced my stress, listened to noise that drowned it out, and basically not thinking about it made it “go away.”  Or fade into other noises.

But as of 2-3 days ago, I hear a high pitcher whine, almost radio like frequency in both ears.  With occasional “boop,” as if sonar.  The disturbing part is I will hear words or phrases occasionally.  Like the last one I heard was “best of luck” in the voice of this person I sometimes listen to to fall asleep.

Very bizarre.  This all coincided with the same burning I’ve gotten in my limbs and hands happened in my ears.  So is it possible to get neuropathy in yours ears that damaged auditory nerves?  That seems to be the case.  Because I didn’t have tinnitus in the last 2 years and 4 months.  Then this autonomic stuff happened and everything changed.

The only positive is I was able to fall asleep before midnight for the first time in a long time last night.  I just told myself I was going to go to bed tonight.  Still.  All this is very worrying, since the tinnitus I read about on here is usually relate to BP not neuropathy or nerve damage.

Sigh.

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Hi there,

I'm so sorry to hear you're having tinnitus. I have a problem with this myself, and it definitely coincides with my dysautonomia symptoms. 

Have you seen an ear nose and throat doctor? 

I get pulsatile tinnitus in my left ear (the wooshing sound in time with my heart beat) and am currently having that investigated further. I also have a near permanent ringing in my other ear, which differs in intensity from day to day. 

I'm not sure about the voices, but do they only happen when you're falling asleep? I sometimes hear things when I'm in a half-dream state. 

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22 minutes ago, Scout said:

Hi there,

I'm so sorry to hear you're having tinnitus. I have a problem with this myself, and it definitely coincides with my dysautonomia symptoms. 

Have you seen an ear nose and throat doctor? 

I get pulsatile tinnitus in my left ear (the wooshing sound in time with my heart beat) and am currently having that investigated further. I also have a near permanent ringing in my other ear, which differs in intensity from day to day. 

I'm not sure about the voices, but do they only happen when you're falling asleep? I sometimes hear things when I'm in a half-dream state. 

I have not seen an ENT yet.  I’m in the process of having to re-see new PCPs, specialists, etc; ie—people who will take my symptoms seriously.

Thr voice or words are only upon falling asleep or in bed at night.  The ringing is pretty much constant at this point unless I put on both a fan and white noise.  In terms of the half-dream state—- I know exactly what you’re talking about.  I will hear like the trailing off of something.  Very weird.  

I want answer but I’m afraid they’re all just be bad ones.

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So interesting about the voices as falling asleep.  I was diagnosed with low B12 a few months ago and have been on treatment for that.  One of the symptoms I was having for awhile, along with severe relapse of POTS, was that same thing happening to me as I was falling asleep.  Distinctly feeling like I was hearing voices--also seeing faces or figures.  It was very disconcerting--almost like hallucination--but it was only occurring at night as I was falling asleep.  Which was making it very difficult to actually fall asleep.  I know you said you are having trouble sleeping in general. 

I also had worsening of tinnitus.  The tinnitus is improved a lot and I am not thankfully hearing voices as I fall asleep these days!

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5 hours ago, MomtoGiuliana said:

So interesting about the voices as falling asleep.  I was diagnosed with low B12 a few months ago and have been on treatment for that.  One of the symptoms I was having for awhile, along with severe relapse of POTS, was that same thing happening to me as I was falling asleep.  Distinctly feeling like I was hearing voices--also seeing faces or figures.  It was very disconcerting--almost like hallucination--but it was only occurring at night as I was falling asleep.  Which was making it very difficult to actually fall asleep.  I know you said you are having trouble sleeping in general. 

I also had worsening of tinnitus.  The tinnitus is improved a lot and I am not thankfully hearing voices as I fall asleep these days!

It's pretty awful.  I suspect I'm vit b12 deficient, but not sure if it's just I am or due to something else.  Again, my neurologist was so vague that she didn't make a distinction between "autonomic difficulties" and "dysautonomia" that she said I didn't have.  If there's loud enough other noises it's drowned out.  But sleeping, it 's another ball of wax.  I did heard b12 deficiency can cause dysautonomia.  

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My ears always ring.  And when I think about it, it gets worse.  So thank you.  LOL.  I typically can just not focus on it, I've had it for so long.  It's one of the least annoying symptoms for me.  I hope it stays that way. 

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1 hour ago, AB+72 said:

My ears always ring.  And when I think about it, it gets worse.  So thank you.  LOL.  I typically can just not focus on it, I've had it for so long.  It's one of the least annoying symptoms for me.  I hope it stays that way. 

I used to.   But it’s back with force. Think the nerve is damaged.

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My sister has these problems and it is due to circulation problems in the ear from BP changes. When she gets this ( she actually has lost her hearing in one ear temporatily before ) she gets  IV fluids from her ENT and she is good to go. 

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Have you tried taking an allergy pill? Your sinuses may be swollen from summer allergies and placing pressure on your innder ear.

 

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Tinnitus is annoying, I used to get it from time to time like most people. However for the last 2 years it has been constant on the left side. Wierdly this is after I had the entire left ear removed (they left the outside ear but cut out all the middle ear, sealed the ear canal,  and removed virtually all the cochlea ). I had to have the nerve conduction study that shows there is nothing there but .... still the tinnitus. I mentioned it to the surgeon at the 6 week check {will go away in a couple of weeks}, the 4 month check {should only last a few weeks more, not longer than 6 months after the op}, and the year check up. Finally said 'it happens’ nothing more can do, and 'live with it' the nerve is damaged closer to the brain if it doesn't heal itself cannot risk cutting the nerve again.

As the nerve was healing I often sort of heard music (like a neighbor with the sound turned up) I kept getting disturbed by this but I am sure it's like 'phantom limb' and is getting much less as the months to by.

I'm fairly sure that for me the tinnitus is not related to the pots! I am trying to convince the local pain doctor to find out about using TENS for tinnitus, but due to my circumstances he wants expert opinion before he gives it a go. According to the TENS machine it can work with some forms of tinnitus - if anyone has tried it I'd like to know how it went.

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1 hour ago, GasconAlex said:

Tinnitus is annoying, I used to get it from time to time like most people. However for the last 2 years it has been constant on the left side. Wierdly this is after I had the entire left ear removed (they left the outside ear but cut out all the middle ear, sealed the ear canal,  and removed virtually all the cochlea ). I had to have the nerve conduction study that shows there is nothing there but .... still the tinnitus. I mentioned it to the surgeon at the 6 week check {will go away in a couple of weeks}, the 4 month check {should only last a few weeks more, not longer than 6 months after the op}, and the year check up. Finally said 'it happens’ nothing more can do, and 'live with it' the nerve is damaged closer to the brain if it doesn't heal itself cannot risk cutting the nerve again.

As the nerve was healing I often sort of heard music (like a neighbor with the sound turned up) I kept getting disturbed by this but I am sure it's like 'phantom limb' and is getting much less as the months to by.

I'm fairly sure that for me the tinnitus is not related to the pots! I am trying to convince the local pain doctor to find out about using TENS for tinnitus, but due to my circumstances he wants expert opinion before he gives it a go. According to the TENS machine it can work with some forms of tinnitus - if anyone has tried it I'd like to know how it went.

That is some bizarre stuff.  That does make a lot of sense though—phantom sounds.  Hopefully you get some relief.  

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On 7/3/2018 at 12:20 PM, WinterSown said:

Have you tried taking an allergy pill? Your sinuses may be swollen from summer allergies and placing pressure on your innder ear.

 

Not yet.  But I’ll look into that.  Good to know.

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I have Dysautonomia caused by heat intolerance which causes severe tinnitus, pressure, ear fullness and pain. ENT’s think it’s all in my head ironically.

Does anyone have any suggestions for treatment?

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5 hours ago, GasconAlex said:

Tinnitus is annoying, I used to get it from time to time like most people. However for the last 2 years it has been constant on the left side. Wierdly this is after I had the entire left ear removed (they left the outside ear but cut out all the middle ear, sealed the ear canal,  and removed virtually all the cochlea ). I had to have the nerve conduction study that shows there is nothing there but .... still the tinnitus. I mentioned it to the surgeon at the 6 week check {will go away in a couple of weeks}, the 4 month check {should only last a few weeks more, not longer than 6 months after the op}, and the year check up. Finally said 'it happens’ nothing more can do, and 'live with it' the nerve is damaged closer to the brain if it doesn't heal itself cannot risk cutting the nerve again.

I am curious why did you have your middle and inner ear removed? My job is lightly related to hearing ( we do the testing at factories for hearing and pulmonary ) and as far as I am aware tinnitus actually has nothing to do with your hearing. There has been people who have cut the auditory nerve and still hear it. 

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18 hours ago, StayAtHomeMom said:

I am curious why did you have your middle and inner ear removed? My job is lightly related to hearing ( we do the testing at factories for hearing and pulmonary ) and as far as I am aware tinnitus actually has nothing to do with your hearing. There has been people who have cut the auditory nerve and still hear it. 

Unfortunately it was a tumor (non cancerous, yea!) but had basically eaten all the inner and middle ear, all the semi circular canals,  and right up to the ear drum. Since it had also eaten the bone between the ear and the brain that was when things started to go wrong...

 

Not having it removed was fairly obviously not an option. 

 

I'm pretty sure that the dysautonomia was there before but I was able to function - I keep having conversations with the doctor and physio  about stuff and they keep saying 'that's not normal' but when you have always had this stuff you think everyone is like this. Now I've lost a bit too much and can't really function.

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1 hour ago, GasconAlex said:

Unfortunately it was a tumor (non cancerous, yea!) but had basically eaten all the inner and middle ear, all the semi circular canals,  and right up to the ear drum. Since it had also eaten the bone between the ear and the brain that was when things started to go wrong...

 

Not having it removed was fairly obviously not an option. 

 

I'm pretty sure that the dysautonomia was there before but I was able to function - I keep having conversations with the doctor and physio  about stuff and they keep saying 'that's not normal' but when you have always had this stuff you think everyone is like this. Now I've lost a bit too much and can't really function.

Can I ask how you found out that you had this ear tumor? What symptoms prompted your doctors to check for something like that?

How are you worse now than before? 

I need testing to check for this too. I’ve had tinnitus since I was 12 or 13, though and nobody knows why. 

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6 hours ago, GasconAlex said:

Unfortunately it was a tumor (non cancerous, yea!) but had basically eaten all the inner and middle ear, all the semi circular canals,  and right up to the ear drum. Since it had also eaten the bone between the ear and the brain that was when things started to go wrong...

 

Not having it removed was fairly obviously not an option. 

 

I'm pretty sure that the dysautonomia was there before but I was able to function - I keep having conversations with the doctor and physio  about stuff and they keep saying 'that's not normal' but when you have always had this stuff you think everyone is like this. Now I've lost a bit too much and can't really function.

Wow! I see why it wasn't an option. Have you looked into artificial replacement? Or was too much taken out? I know they have a Teflon like material that they can artificially make the inner ear bones. It is expensive but it gives back about 50% hearing. 

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16 hours ago, 2sick2long said:

Can I ask how you found out that you had this ear tumor? What symptoms prompted your doctors to check for something like that?

How are you worse now than before? 

I need testing to check for this too. I’ve had tinnitus since I was 12 or 13, though and nobody knows why. 

Don't panic but was just headaches, dizzyness and hearing loss. Until the CT scan was not really worrying. However my case is unusual and bad luck the symptoms don't normally indicate anything like that!

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12 hours ago, StayAtHomeMom said:

Wow! I see why it wasn't an option. Have you looked into artificial replacement? Or was too much taken out? I know they have a Teflon like material that they can artificially make the inner ear bones. It is expensive but it gives back about 50% hearing

Really there is nothing left, cochlea implants require more than I have left, a brain stem implant is perhaps a theoretical possibility but as I still have ok (not great but I don't have a hearing aid) on the other side so not worth looking at.  

 

As regards the inner ear bone replacement, I already had this done twice, for me I got about a 20dB improvement. This faded over time which is why I left it so long with the hearing loss before going to the doctor's I wasn't enthusiastic about going under the knife again. 

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5 hours ago, GasconAlex said:

Really there is nothing left, cochlea implants require more than I have left, a brain stem implant is perhaps a theoretical possibility but as I still have ok (not great but I don't have a hearing aid) on the other side so not worth looking at.  

 

As regards the inner ear bone replacement, I already had this done twice, for me I got about a 20dB improvement. This faded over time which is why I left it so long with the hearing loss before going to the doctor's I wasn't enthusiastic about going under the knife again. 

That is interesting. Have you heard of the hearing aid that uses bone conduction that makes it seem like you are hearing from the damaged side?

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Those voices are hypnogogic hallucinations. I get them when my sleep apnea acts up and I become severely sleep deprived over the course of a few days. I hear people having conversations about me and birds chirping, once I heard a pack of Harleys reeving up. Then I wake up and no one is there. It is all quiet outside. I also have Tinnitus. I hear loud pitched ringing in both ears, especially when the night time comes and all of the ambient noise is lower. Most days it is always there, faded away into the background. But some days it is screaming so loud; especially in my left ear that it sounds like a diesel truck idling, or a steam whistle blowing. I do notice that I have louder ringing an pulsating ringing whenever my blood pressure is higher. In my case having thick blood antibodies are also known to cause damage to the ear because of poor circulation in the blood vessels. It is hard for bloods to pass through the blood vessels in the ear, because they are so small. So when blood is thicker than usual because of these antibodies, it is known to damage the ear. I might try a white noise maker one of these days. Some people have committed suicide because of their ringing. I guess it can get that loud. Any sound you can perceive by actually hearing it can be reproduced by the brain even if there is no external stimuli. The mind and body can do some crazy stuff to us. It's quite scary when you think about it. I hope you all feel better soon.

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I believe tinnitus from Dysautonomia isn’t related to damaged nerves in the ear, but from rather heart rate and pressure issues. It’s pretty common - I think I’ve had it all my life and don’t notice anymore.

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I agree with @yogini - I thankfully do not suffer from tinnitus but my sister - who also has POTS - does. Her's is caused by circulation issues in the inner ear from BP changes. IV fluids fix her problems.  

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I get tinnitus but general doesn't last for more than 10 minutes at a time. It is usually when my symptoms are most active. I head feels full of pressure when it usually happens so I imagine it is due to BP changes. 

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