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Eagle Syndrome - Online Support Group

TINNITUS DRIVING ME CRAZY! Anyone else

It’s bad enough I am dealing with migraine, TMJ type of pain, neck pain but the ear ringing is so high pitched and constant. I have ear plugs and nothing is helping me!! Any ideas or remedies???

When this happens to me, I get relief with neck stretching....front, SCM, sides, traps, and down the slope of the shoulders to the joint. If I don't keep on this, I get the high pitched air leak noise, too, and whooshing with each heartbeat. I can almost make it happen when I hold my right shoulder in tension...like holding a shrug (which seems to be my default mode). I don't think everyone's is helped by this, but it was a surprising fix for me, and worth a shot....(and kind of took some time with this...couple weeks... to make it go from 'most of the time' to almost never).

Otherwise, I run white noise (an allergy filter that has a good air noise), and it helped at night.

Amen Amy......it blows. I have it 24/7, with different pitches to "shake it up a bit" ha

Relief.........crank up Stevie Ray Vaughn, pour a good beer, sit out by the bon fire and imagine this nightmare will be over one day.

Probably not the best advice you are going to get........but what the hell, it works for me :o)

todd

LMAO!!! I have a built in house alarm system sound in between the ears!! Too bad, I didn’t get nice elevator music instead of this ringing…:)) Glad to know others get to enjoy the high pitched sounds. I will try the stretches as well. Thank you!!

If SRV isn't working.........up the beer intake and try The Eagles. A little more smooth and just might lull you to sleep.

Or just say f### it and do some patron shots ......... you will be out in no time!!!

By the way.........I have already put the pledge / promise out there: When i am cured......I am subsidizing lobster, steak and whatever the hell anyone else wants to celebrate. Going to celebrate like it's 1999 !!!!

todd

I have been dealing with tinnitus since May 2008. Yes, I have different pitches of ringing that occur because of stress, weather change and even taking certain medicines. The best way to deal with the tinnitus is to mask the sound with another noise. At night I have to sleep with some type of white noise sound like rain, a waterfall to deal with the tinnitus. If you haven't done so already, I suggest you check out the American Tinnitus Association (ata.org) web page and you might find some help and information on how to cope with tinnitus. I pray one day they will be a way to control the tinnitus even if it means wearing magnets on the side of my head (an experimental treatment they are currently using). Good luck and I wish you the best in calming your tinnitus.

There is also a 'white noise' app.....I used this in hotels like crazy, because I needed the white noise!

DONT USE EARPLUGS!! IT MAKES TINNITUS WORSE!!! Trust me, I'm an audiologist with ES. The best thing you can do is to stay busy and around noise. Not too loud of course, but avoid quiet situations and stress. You may even try a noise machine by your bed. JUST DON'T WEAR EARPLUGS!!

wadams:
Thank you for your reply. What can I do about sound sensitivity? It feels like my fight or flight system is in overdrive when I have more than one sound going on. Or, if someone is talking too loud. Also, if multiple sounds going on at the same time. Any ideas to why and what can be done?

I'm sorry, Amy. I really don't have any recommendations for that. I'm glad you pointed that out, though, I have some tactile hypersensitivity issues that i never attributed to ES, but I will have to investigate further now. Back to your question... I would certainly avoid those types of situations. Does your ENT have any suggestions? I even hesitate to ask that question, as I have found that most MDs are quick to prescribe central nervous system depressants, and those just make you feel drugged up and stupid. There is something called Tinnitus Retraining Therapy (TRT) but it is just a very expensive ($800) way to help you learn to ignore the tinnitus. There are also devices called tinnitus maskers. These are like a hearing aid, but produce a static-like sound -- so, in essence, it's trading one bad sound for another (and it's ALSO expensive). Have you tried any natural remedies? I was once taking something called SeaSilver (now called SeaAloe, it's a coloidal silver formula) that relieved other symptoms and decreased my tinnitus. Something like that might be helpful. When you google it, don't be freaked out about the links about a lawsuit. That was because they were making claims they could not prove, NOT because the product is not safe.
Amy said:

wadams:
Thank you for your reply. What can I do about sound sensitivity? It feels like my fight or flight system is in overdrive when I have more than one sound going on. Or, if someone is talking too loud. Also, if multiple sounds going on at the same time. Any ideas to why and what can be done?

Amy & Wadams

I have the ringing in the ears. It varies on on how loud and tone throughout the day.

When having a lightheaded/ dizzy spell the volume can go all the way to just left a concert level.

However since having my surgery the left side has become so much quieter. (So weird to have them out of balance)

After giving Dr. Samji my list of symptoms. He asked me if I was having any palpitations. (I didn't mention them because I thought they were just my hot flashes) He said they were also a symptom of ES.

My Internist said (during my pre- op) the Vagus Nerve is located in the same area as the styloid process and could be getting irritated triggering varying levels of fight or flight symptoms. She did research on what I had been diagnosed with and wanted to be able to go over it all with me.

Is it like an overstimulation feeling? Even over the smallest amount of things? My insides would shake like I was having some weird internal seizures and I had to get away from whatever was triggering it.

Take Care,

Sheila

Sheila,
You have just described what It is overstimulation if the noises are too many or too loud. I have been diagnosed with hyperadrenergic dysautonomia per positive table test as well. Also, my body feels shaky all over as well. I go into escape or fight mode when its bad. Glad to know I am not alone.

@Amy & Sheila,

You guys just nailed me (my issues with tinnuitis) to a "T" !!!

If I only dealt with ringing ears, I think it would be annoying / aggravating issue, but could have lived with it.

My ears ramp up with the ramp up of my symptoms.......like my brain is frying and singing a horrible opera song when I am symptomatic. When I am not so bad, the ears are quieter.

To me, I think they are more of a product of the brain trying to get these damn signals figured out, but what the hell do I know

Todd

Leila and Go Cougs!
Well this confirms that we are not crazy!! :)) Next Monday is surgery date with Dr Samji, I can’t wait!! The shakiness in my body is like feeling every pulse in my body beating (pounding) at the same time. I have a regular heart rate and just had a normal echocardiogram. I bet its my vagus nerve and styloid causing this. I have hyperadrenergic dysautonomia from positive tilt table test. I wonder how many of us would have a positive tilt table test??

You will do fine Amy .........take your mind off of the surgical worries. It was a piece of cake compared to the crap we go through.

On day 1..........stoned out of my mind like bad weed from Canada.

Day 2......Probably could have gone out to dinner with my wife, but just chilled in the room and kept icing.

Will be thinking of you and saying a prayer!

Todd

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How nice, I will need all the prayers and well wishes! Thank you! I know Mary Jane lives in CA and that is one positive thing about flying out of texas…lol :slight_smile:

I have had this for years. For relief, when I sleep I use a "white noise" machine. When it is quiet the ringing is more pronounced. Sometimes it is so loud I can't understand what people are saying to me! When I am awake, for some relief from the sound I put on my headphones and listen to good music. Choose music from a time in your life when you were the happiest, or make a cd of your favorite songs...... ones that remind you of happy memories. It won't get rid of the sound but for a while you won't hear them.

Amy,

Is hyperadrenergic dysautonomia a type of pots thing? (seen other members mention the pots one here on the board)

I think you are on to something....... I bet there would be quite a few of us that would get the same result with the tilt table.

I was diagnosed with stage 3 adrenal exhaustion and thyroid disorder (hypo by the numbers.....( Tsh t3 t4 rt3) but presented with hyper symptoms). Really gave my docs a run for their money :)

As far as the tinnitus..... none of the white noise or sound machines worked for me. In fact they would make my symptoms worse!! Almost like it would try to compete with it...... instead of drowning it out.

Congrats on your upcoming surgery date!! I would/ will do it again if needed!! You are in good hands!!

Praying you get relief and a speedy recovery :)

Take care,

Sheila

Yes, it is a form of POTS. I just had to look again at my tilt table test results for exact wording. I guess I used the wrong wording. The results say BP dropped significantly with inappropriate increase in heart rate. Suggesting abnormal adrenergic sympathetic and normal parasympathetic functions.

Also, I don’t completely pass out, (near syncope). This is probably why I feel tired all the time. When i am about to pass out I lay down before going head first…:slight_smile: Anyone else here?

I wish I had advice for tinnitus…I don't :( I don't have it often, and it's not a big deal when mine kicks in, because moving my head around, stretching the neck and shoulders tends to stop it.

About to pass out: I have had that and use a trick that fighter pilots use when they are pulling G's. If you feel the blood pressure drop, and the outside of the vision is darkening inwards (basically you know it's coming), tighten your ab muscles to keep the blood in the top half of the body. This happens when I stand up, and the trick works if you remember to do it quick enough.

Who told you about the adrenal exhaustion, Lalei; it sounds like something a naturopath would be more willing to look into. I saw a few things written somewhere that unless you have Addison's, that adrenals weren't typically given much attention.

I know the thyroid can oscillate between hypo and hyper, and depending on which phase the testing happens to occur in, you might be misdiagnosed and treated (or not treated) in a way that could cause more problems. It's good you got the full panel done.

I get palps- hate when it happens. Seems to happen leaning over or taking a deep breath. I had an echo and EKG just to check the heart. All is good, so I thought vagus, especially since I also seem to get randomly nauseous.