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Eagle Syndrome - Online Support Group

New with ES + My experience + Tinnitus

Hello everybody,
My name is Oscar. Three months ago I woke up with tinnitus. At that time I didn´t know what was that and I got really scared. I thought that it could dissapear in a few days but it didn´t.
I went to the doctor and they diagnosed me with otitis. My throat and ears were red and she thought it was an infection. I spent a few days hoping for the sound to dissapear, no sleep, anxiety and a slight ear pain. I went to the doctor again and followed new presciption but nothing happened.
After a week my primary doctor said “This looks bad. Tinnitus is horrible. It is very difficult to live with it”. She gave me a new prescription and almost told me to pray. My anxiety reached the maximum level at that time. They told me it was my fault as I was too nervous and that I needed to relax… I felt so guilty.
After two weeks, one day tinnitus increased suddenly for a few seconds. It was in my left ear. It was so loud I got scared. I could not hear anything else. I got paralised wishing it would go down again. It took a few seconds, more than usual but finally tinnitus went back to normal. After that, I felt a strong pain in my jaw with cracking sounds. It was constant, like a pulse. I got really scared. Then my jaw hurt a lot. After this pain I realized I had been having cheeks pain during the last months and that sometimes I was having pain while eating and opening my mouth. As I was used to have always some kind of pain here and there I just had not paid attention to it.
The next day I went to the doctor and suprinsingly she said “Jaw and ear have nothing in common”. I was shocked. My doctor said to me “Take a valeriana pill. I see you get really nervous”. And that was it. She was treating me like I was inventing it. I felt terrible but I was determined to know what was happening. My pain was real for me.
I went to an otorhinolaryngologist. He examined my ears and said everything was ok. He told me to go to a maxillofacial doctor. He said it could be many things but surely my ear and jaw had something in common and I had to discover it. He was really nice and explained a lot about tinnitus and how it is a big thing now as people are more and more stressed. He also told me how to deal with it (yoga, meditation, etc. which are helping me).
I went to the maxillofacial doctor. They took an x-ray radiography and a mark appeared on the left side of my neck. The same side where I had the cracking, the pain… She said, we have to confirm it but maybe… and she said no more. By that time I was feeling more pain: neck, face, head… She gave me prescriptions for the pain and then I went to a physiotherapist. Worst pain was the burning sensation in my skull. I don´t know if that is normal but I had never had it before. I was a bit desperate. I had to work and study and I could not complaint.
On second appointment I got a ferule for sleeping and doctor told me about ES. She said she was sure almost all the pain I feel is caused by it. She said I need a scan and I am waiting for the hospital to call me. She said surgery is pretty risky and that I could have some relief of the pain with medicins etc.
At this moment I am waiting for the scan. Pain has been reduced and I am not taking pills. I prefered to see if I can deal with it. Physiotherapist is doing wonders at this moment althoug the pain is still there. Tinnitus has not changed. It is my friend now. I get angry with him sometimes others I tell him I will miss him when he leaves. This has changed my life in a very personal way. Yoga teacher tells me I need to focus on the present. Live the present. Live now. Enjoy your life now. I always think about the future and that gets me frustrated. I suppose bad things can come in the future. As I read more and more about ES… but that only helps me to make the right decissions and be prepared.
This is my experience. I hope this is not too long or boring to read. I feel it is difficult for people without ES to understand the symptoms. I felt like I wanted to explain my whole experience as a start in the site. I have been very lucky to discover ES in only 3 months after tinnitus. I didn´t stop when the doctor said I was too nervous and I had luck finding other doctors who believed my pain was real.
My biggest concern right now is still tinnitus. I would like to know if there is any hope to say goodbye to it with or without surgery. I would really appreciate any comment. Maxillofacial doctor said sometimes ES causes tinnitus but she thought it is strange I hear it on both ears as ES is only on my left. Any advice or experience with this?
I also don´t know for how long could I have ES and not noticing it. I am not sure but one or two years ago I had feeling of a strange thing in my throat. It was so bad I went to the doctor but they found nothing in my throat. It dissapeared but now I wonder if that was the start of ES.
From now on I will try to keep my status updated.
Thank you for your attention and help. This site is a a wonderful discovery.
Oscar.

Thank you for sharing your story, & so glad that you didn’t give up. I hope that you do find help for your tinnitus, it does come up quite often in the discussions, so you could try searching (use the magnifying glass icon on the top right of the page), see if there are any ideas to help.
I’ve had tinnitus but very different to yours, mine was bilateral, but then I had bilateral ES. I think it has improved since surgery, but not gone completely.
It does sound like you could’ve had the ES for quite a while, given your other throat symptoms. I think members often have jaw/ ear / throat pain for quite a while before being diagnosed, & sometimes other symptoms, once they get the diagnosis & look into it more they realise it’s been ES all along…
Let us know how you get on with your scan.

Hi Oscar,

To give you further encouragement, there is a doctor is Spain, I don’t know how close to you, who has done ES surgery for several people who have posted on this forum. He might be a good person for you to contact for a more “educated” opinion. I’m glad you’re finding some relief through physical therapy & yoga.
Here’s the link to the list that has the ES Doctors for countries other than the US

I also had tinnitus similar to what you’re describing before being diagnosed w/ ES. It did become less after surgery but then I developed Meniere’s Disease after a head injury from a bike accident so it got worse again. Oh well!! I’ve learned to live w/ it.

Dear Isaiah,

Thank you for your message.

I had already found information about this doctor in Spain. Unfortunately it is not close to where I live but I had already thought about calling for an appointment and take a plane. At least for a second opinion. I already fly to Barcelona once a year because I have keratoconus on both eyes. I check my eyes in a clinic there so I might make an effort and look for an appointment with Dr. Maiz.

I have news regarding my scan. I have received a letter from the hospital. I have an appointment next 13th September. I have to wait the whole Summer and I am not sure if I will have my scan that day. It is not specified on the letter. Anyway, I am happy I have received it.

My skull hurts less. Only my jaw hurt more recently. More exactly my ATM but it has dissapear now. What worries me the most now is that my throat hurts more and more everyday. It is not a constant pain. It is like if I were going to get a cold that never comes. I feel nothing when I swallow or eat. The pain is on both sides of the throat and reflects in my ears but is more intense on the left side. I believe it is due to the ES. I have to take care with my neck and I also see that I cannot speak for too long, sing or do things like that.

Pain comes in different ways. Today it hurts this and tomorrow it is another thing.

I will try to update my situation if anything happens. When tinnitus started I had the worst moments I can remember. Thankfully you get used to it. For anyone reading this, if you are new with tinnitus you will overcome it. We are stronger than we think. Now I can even study in complete silence and concentrate which at first was impossible.

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Really glad that you’ve found ways to get used to the tinnitus. ES is strange how it gets worse sometimes, better others, & you never know why… I hope you can find out what’s happening with your appt. in September- a long time to wait, sounds like the Spanish system is as efficient as the UK!

Yes, it is very efficient… I suppose ES is not an urgent matter.

I guess I have been given a good date considering the Summer holidays are in the middle. It could be worst.

I totally agree w/ what Jules said. ES pain/symptoms can change from day to day & pain can totally go away one day then be unbearable the next or even over just a few hours on the same day.
When you go to your appointment in Sept. take any information you can find about ES from this forum (there are links to research papers in the Newbies Guide) & from any Google searches you do that support your need for surgery to resolve your ES symptoms &/or that support that the symptoms you have are related to ES. Many doctors don’t know about Eagle Syndrome & even some that do dismiss the symptoms as either being caused by something else or as being psychological. Having research to help prove you aren’t a hypochondriac is very helpful.

Good news. I think I will have my appointment soon. I received a call to advance my appointment to next Tuesday!!! Unfortunately I have an exam a couple hours later that day. I have asked to move the date. Hopefully it will be soon. I will be notified on Monday.

I know I ask a lot about tinnitus. For any of you is it related with any pain you feel? My tinnitus is constant. It never stops but sometimes it changes. It goes louder and then it goes back to normal intensity. When that happens I usually get really scared because it suddenly happens. Most of the times, when that happens, I have a certain pain after. Sometimes it is a pain in my jaw. Today it has been pain in my throat and ear. Only the left side, where the sound went higher and where I have my ES. Does this happen to anyone else?

This make me think that tinnitus is due to ES and not because I am stressed but it frightens me that it may get worse with time. I try to be very positive with my tinnitus. I have made great advances the last weeks but today it got really loud for a few seconds and I am still scared. I feels like my heart stops until the intensity goes back to “normal”. I will be scared the rest of the day…

Mine would get louder & louder, then suddenly drop, but I’ve never noticed pain afterwards. Really good news that you should hopefully get an appt. earlier! Hope your exam goes well too & that you’re able to put aside the worry. Good luck! :four_leaf_clover:

Hi Oscar,

This is not a diagnosis but just some information. I believe one of my styloids was pressing on or irritating my vagus nerve (one of the cranial nerves). The vagus nerve helps control digestion, heart rate & even anxiety. When I would exercise, my blood pressure would drop & my heart would race (the opposite of your problem). I would feel like I was going to pass out for a few minutes then everything would get back to normal again. This didn’t affect my tinnitus one way or the other, but if you feel like your heart rate changes when your symptoms flare, it is possible that your vagus nerve is being irritated by your elongated styloid & thus, when you have your styloid shortened, both symptoms - tinnitus & the feeling of your heart stopping may go away. It’s something to hope for & look forward to.
I’m glad, too, that your appointment was moved to an earlier date. Please keep us posted as to what you learn.

You sound like you’re pretty young (college age). If so, you’re lucky you are getting diagnosed this early. I’m 58 and looking back I believe I’ve had this since college. I too get tinnitus. It used to be only in my left ear but now it is in both. It comes and goes. I also get a feeling of my ear being plugged. This too can happen all of a sudden and like the tinnitus will suddenly go away. When I say your “lucky”, I don’t mean lucky to get it, but lucky that you found out early so that maybe you can get some relief early.

Good luck!

Dear all,

Many thanks for your messages.

I had my appointment last Tuesday. I didn’t have the scan done. They took a radiography and asked for the scan. I am waiting for the new date. Hopefully during this Summer. It has been ordered as urgent. I will tell you if there is any update. Radiography showed the ES again.

Regarding my appointment: I saw the same maxilofacial doctor that I had previously consulted. When I found about my jaw problems and my primary doctor didn’t want to check anything I went to a private doctor. She works also on the National Care System. Now that I convinced my new primary doctor to get the scan I got my appointment with the same doctor. I cannot be luckier. She said she trully believes all my problems are caused by ES. She needs the scan to confirm. She said she will study my case until me know what happens and then she will propose a solution. She talked about having surgery buy she said only when we get the scan. I was happy. She listened to me as I explained my recent throat pain and the changes on the intensity of my tinnitus. I think I am lucky as I don’t have to convince her about anything. Right now I feel things are going ok.

I am not feeling too much pain these days. Neck and elbow and sometimes my jaw cracks or I feel pain inside any of my ears… little pain here and there but I am feeling ok.

About my age… I am currently studying but I am not that young :slight_smile: I am 36 years old. I work and I have been preparing to be a teacher at the same time. I had my exams this week. The first exam was the same day I had my appointment at hospital. I don’t know since when I have ES. I guess a few years maybe but my symptoms haven’t been obvious since now.

I appreciate the information about the vague nerve. I have practiced sport again and I have felt ok. I don’t feel my heart rate changes when symptoms change. It is really good to know this can happen. I can be aware of it. Doctor said to me I have to know exactly what I have so I can identify the symptoms and not panic. She said it is good to get information etc.

I think this is it by now. I would like to thank you again for your messages.

Have a nice weekend an holidays if you have some days off.

Oscar.

Glad that you’ve found an understanding doctor, hope that you have the scan soon, & hope the exams go well!

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Great news that you’ve found a supportive doctor who seems to have heard of ES. I too hope your scan appointment is soon!
In the US we have our 4th of July Independence Day holiday on Wed. this week. There will be lots of fireworks set off that night in the US. Some of the displays are quite spectacular!

:fireworks: :sparkler:

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Thank you both for your answers. After my exams I got a few days off which I really needed.

I am still waiting for my scan. August is like a non existent month here. Lot of people is on holidays. Hopefully I will get my appointment on September.

My exams didn´t go too good but also not too bad. Hard to explain. I didn´t pass them but I got a pretty decent position so maybe someday I could start working as a teacher… Anyway, I still have energy and I will continue studying on September. Next exams are in 2020… like the Olympics :slight_smile:

Regarding my health status: I am feeling better. Obviously I had a lot of pressure due to my exams but I still feel pain in my neck. It doesn´t dissapear. It is there all day since I wake up. On the left side where the ES is supposed to be. As I wake up it goes a bit down to my shoulder. I also feel from time to time a bit of throat and skull pain. In general everything is better than before except tinnitus. It is by far the hardest symptom. I had a few bad days the past weeks. Not because it was louder, but because my mood was very low. I got tired of it but these days I try to connect with it, give it a space in my head. Hopefully I will be able to keep on studying. I need silence while I study and it was hard to concentrate before my exams.

I will try to update soon. I hope you have had enjoyed your holidays.

Thank you!!

Oscar.

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It’s good to hear you’re feeling better & are finding ways to cope w/ your symptoms. Your shoulder pain could mean your accessory nerve is irritated by the Eagle Syndrome. It’s not an uncommon symptom of ES.

So glad your exams are over & glad you can re-take the ones you feel are necessary. Teaching is a great profession. I bet you’ll be a wonderful teacher! I hope you’re able to have your ES taken care of so when you take your exams in 2020, you have no tinnitis to distract your studies. I applaud you for finding ways to cope w/ that as well. I think you’ll get used to it in time. I’ve had it for years & some days barely notice it. I do understand how distracting it can be when it’s quiet & you’re trying to focus because mine seems to be louder under those circumstances as well.

We appreciate your update, Oscar, & look forward to hearing the results of your scan.

:+1: :sunflower:

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Hello everybody!

Just a quick update. I will get my scan done this Friday. I will let you know if I get any information.

Lately I’ve been feeling like if I had something in my throat. Day by it was more obvious. Yesterday I got pretty anxious. I got scared as if I could not swallow or breath. I don’t know if that is possible but I got pretty stressed about it. Today I am better.

I will keep you updated.

Hi Oscar -

So glad you’re getting your CT scan in a couple of days. I’m sorry to hear about the symptoms you had yesterday. ES symptoms do come & go & are worse some days than others. If the feeling of not being able to swallow or breathe happens again, try putting your head in a different position to see if it helps the feeling go away. Icing your neck(15 min. on & at least 45 min. off) might also help as it will reduce inflammation that might be making you feel those things.

We will look forward to hearing the results of your scan. I’ll be praying for a proper diagnosis for you.

:sunflower:

Thank you for the tips. I took an ibuprofen and the symptom dissapeared. It has not comeback yet.

I hadn’t thought about putting ice on my neck. I will try next time.

I had my scan last 7th September. My next appointment is on 16th October. I hope I will finally get my results.

I have contacted Dr Maiz in Barcelona. I am thinking about requesting an appointment to have a second opinion and also see if diagnosis is the same and, of course, if there is any solution.

I will keep you updated and I wish you the best for you all. Many thanks for your support.

Oscar.

Sounds like the UK with the long waits… hope that you find out the problem at your appt. in October…

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