New with ES + My experience + Tinnitus

Hi Oscar!

I second everything Jules said. It’s very hard when doctors are unwilling to consider that with all their medical learning, they still don’t know everything. Because every person is completely unique in body make-up & chemistry, no one, not even the most knowledgeable medical person, can definitively tell you a particular ailment does or does not cause a particular symptom. There are always symptoms that are more typical in a given case but there are often those that are “outside of the box” as well.

There are any number of reasons for tinnitus - auditory nerve compression, vestibulo cochlear nerve damage, Meniere’s Disease (which I have), among other things which could include ES. It does boil down to irritated nerves one way or the other. The tinnitus I have from Meniere’s Disease is sometimes so bad I can’t think clearly. At the moment it’s under control with the use of a daily diuretic. When it gets bad, I have to take prednisone (which makes me :japanese_ogre:).

Prolonged stress/anxiety nearly always make symptoms or illnesses we have worse as our adrenalin & cortisol levels are heightened during those times. These are two of the hormones that stimulate the “flight, fight, or freeze” system our bodies use for survival. Stress & anxiety tell our brains we are under attack & need to take evasive action thus the hormones necessary for self preservation are released which causes a whole cascade of events in our bodies. Here’s a link for an article that explains all this in an understandable way: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress/art-20046037

I hope you’re able to have low anxiety & pleasant holidays this year. I do believe in a loving God so will be talking to Him about your situation & asking for you to find the right doctor to work with you next year.

:pray:t3: :blush:

P.S. I’m also glad to hear your Keratoconus is stable.

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Dear Jules and Isaiah,

Many thanks for your replies and your concern about me.

I just try to understand why is all this happening. I know tinnitus is pretty unknown. My worry is that if all these things can happen, like Meniere, etc. I simply would like to know why they don´t search for it with me. If there is any reason I simply would like to know to eliminate possibilities. I am a person who really needs to understand what is happening. If I understand it, I can accept it better.

In the past I had vision problems. The oculist said I was fine but I complain about my vision. I kept on looking for a reason and I found keratoconus. The same with my knee. It hurt quite a lot. At that time I was overweighted so it was easy to think this was the reason. I lost a lot of weight but the pain was there. I kept on looking for a reason and I found I have Hoffitis a Syndrome caused in the Hoffa fat that there is in the knees. Beacuse of this, my personal experience tells me that if I agree with the situation I will not find what I really have. If after my first visits to the doctor I would not have looked for more I would not have had my x-ray and I would not have found ES. Does this mean I will find the origin of tinnitus? No, but I know there is a reason and I feel it is ES. Why? Because I´ve had high peak sounds related to jaw pain, cracks and certain positions. Of course, I don´t know more than a doctor and I have never entered an appointment with a doctor thinking that. I listen, I express my symptoms and that´s it. I only wait for a bit of empathy.

For me now it is over but only for this year. Hopefully I could try in Barcelona next year and simply get more information, etc. If the diagnosis is the same it will be fine. I just need some empathy and understanding and feel like the doctor is looking for the answer at the best of his/her knowledge. When I hear: ´´You don´t faint or get dizzy so we do not look for nothing more. If it causes you anxiety, control it´´. In this case I really feel they are not making the best they can and I have lived that many times before.

I appreciate so much all your help during this journey. I get very emotional at this point. I will keep on fighting. I am convinced this will lead only to a better place. Many thanks for your prays. They mean a lot to me.

I would really like to feel helpful with others so if anybody needs a chat or maybe a little help with the language I could help in Spanish for sure. Please, only ask for it.

I wish you a nice and happy day and of course a beautiful Holidays.

Óscar. :sunflower:

I hope that you do get your answer in Barcelona! I’ve been through something similar with symptoms of an autoimmune disease, blood tests seem ok so although I have all the symptoms, the doctors weren’t interested, & didn’t want to look for anything else. It did really stress me out for quite a while, but eventually I came to terms with it & manage the symptoms as best as I can; the treatment would have lots of side efects anyway, not sure if it would help enough to be worth it! I hope that you’re able to accept that ES is the likely cause for your tinnitus, but that you’re delaying treatment for a bit, without getting the recognition from a doctor. We’re here for you!

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Oscar
I hope you are able to enjoy the holidays despite your frustration with the medical professionals. There comes a point when you have to make peace with it and move on down the road with hopes of something better coming. That’s basically what I have done at this point. I am so worn out with this thing and all my symptoms! I will be seeing my neuro surgeon next Tuesday and taking my laptop and dental 3D pan am with me. First I want him to tell me if there is anything he can do to give me some relief with my cervical spine issues and secondly I want him to tell me if he sees calcified ligaments on the scan. I’m quite sure that is what I see, but I am not a doctor. I have tinitus as well and I believe it is a symptom of the eagle. My ears - especially my right one - itches like crazy way deep down inside. This is a daily thing along with so many other symptoms. I just have to really make an effort to not let this thing get the best of me. Some days are successful and some days are NOT! However, I do take tramadol on a daily basis…some days only one and some days 2 or 3. Happy Holidays to you and your family!

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Dear kiZe6159,

Thank you for your support. I really appreciate that. It feels good to know there is so many people who understand your feelings and frustration. I definetly have to move on with it to get something better. If not I will get stucked in this circle.
I really hope you can find an answer or a bit of light at your appointments. I am so sorry you have such terrible symptoms. I truly believe you’ll find a solution because you are determined to get it.
I understand when you don’t have a succesful day. It is perfectly normal. Our mood depends on various things and you have to have a very strong mind.
Have a nice Holidays. We have to learn to enjoy the moment. Live the present.

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Great thoughts, Oscar! It is true. Live in the moment, don’t worry about the next hour, day, week or year. When in a tough situation or lots of pain, find the light that exists in its midst. There is a silver lining in every dark, stormy cloud.

:blush:

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Dear all,

Sorry to bother you. I am not feeling good right now. I am hearing a second noise in my right ear. It is louder than the first noise and it is driving me crazy. It is the second time this happens to me in a couple days and now i am sacking. I am so nervous. Could anybody give any advice??? Is this normal? Will this last??? I know it is impossible to tell. It is just that I am literally crying. I should go to sleep right now and i cannot go to bed. I fear to not been able to sleep or wake up in the middle of the night.

This week I have had some issues with my ears. I have felt a lot of pressure inside. Last Tuesday I was walking on the street and suddenly my left ear got blocked. I almost couldn’t hear nothing. The feeling was like when you are on a plane and you cannot hear because of the pressure but I was on the street and it happened in less than a second. I recovered it in about 5 seconds but i got so scared. And then I’ve felt pressure inside my ears. Today it is been the same, a few pressure and now I hear a second noise only on my right ear.

If somebody could say anything. Sorry I feel helpless right now. I don’t know if I can deal with this. The night has come and I am so afraid to go to sleep. I am very anxious. What about if tomorrow the noise is still there???

Sorry, please excuse me, I try to be strong but I can’t with this right now. I just want to run and cry.

Thank you for listening. Thank you from the bottom of my heart.

Óscar.

Hi oscar! Im 29 years old. I just had both surgeries done this past year. Right than left. I have the tinnitus. What does urs sound like? Mine is just in my left ear. I hear my heart beat. It sounds like my heart is pounding in my left ear. It gets worse when i lay down or bend over. After surgery its been about 3 months post op left side and the tinnitus has quited down. It hasnt gone away but it is quite- not as loud and not as often. I had an ultra sound of my neck showing the interior jugular vein was compressed on the left side which is what wS causing the tinnitus in the left ear. Right side i dont have tinnitus but i did have some severe pressure and ear pain in right ear. The pressure in my right ear was caused by my jaw. I clenched my teeth so much from stress i displaced the disc in the right side of my jaw. That caused the severe pressure in my right ear. Please look into getting tmj treatment and into eagles surgery. If your veins are compressed by ur eagles causing tinnitus i would not leave the eagles in there. Its dangerous and they should come out. Let me know how u are doing. Hugs n prayers

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P.s. i did a lot of crying. Every single day. I went to work and home and doctors. And just cried all the time. Its okay. Do what u have to to get uself thro this. Its an awful experience and i am so sorry ur going thro this too. I wouldnt wish this on anyone. Pls stay strong. You can get better with the right help. Keep searching!

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Oscar, try not to panic; I know it’s hard, but if it is caused by ES then getting stressed can make it worse. My tinnitus is alot better than it was (like cupcakes, it was caused by jugular vein compression from the styloids), but I find if I’m stressed then it does return more.
I know you’ve been trying to control your anxiety, have you tried relaxation exercises? My physio suggested yoga nidra, on youtube, I would listen to that & do the exercises in bed which did help.
Of course it might not be anything to do with ES; it could be a cold or another virus, & may pass quickly. Because we can get weird & varied symptoms with ES, it’s easy to think it’s causing everything bad with us, but hopefully for you it’ll go soon… Thinking of you…

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Hi Oscar,

I’m not diagnosing you, but it would be worth it to see an ENT again & ask about Meniere’s Disease. Your symptoms sound very similar to what I get when my Meniere’s Disease flares up. If my symptoms are bad enough, they make my brain all foggy, too, so I can’t think straight (this doesn’t always happen though).

Meniere’s is thought to be caused by a virus though in my case, it came on after a head injury. The symptoms are often treated w/ a daily diuretic & then prednisone when the symptoms flare. Vertigo can go along w/ Meniere’s but doesn’t always. I get it at the end of a symptom flare-up but thankfully mine has almost always been very mild so I can function normally even though I feel a little light-headed.

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Dear all,

Thank you for your answers and excuse me for my panic attack. It has been the second time this week I noticed a different noise in my right ear and it lasted hours. I was very scared.

Through this process I have always tried to manage my anxiety. Tinnitus is by far my worst symptom and I knew I had to control my anxiety. I really try but this week it has been too much. I suddenly lost my audition for a few seconds and then I have had a different noise on my right ear.

When I woke up the next morning the noise was not there. If only I knew why this happens I would be better. I cannot control it and it really scares me. It is like a phantom in my head that I don´t know when it is going to appear You know what I am talking about. This is not new for anybody. This is just that I am tired these days. Thankfully I have almost no physical pain. I feel pretty good compared to a few months ago.

I would like to describe you what I´ve been feeling these days. My tinnitus is a constant noise. It hasn´t stopped since February. It is like when you go to a concert or a disco and you stay a couple hours with loud music. When you come out you hear a beep sound in your ears. That is what I hear. Since the very first beginning I have had higher peaks that happened suddenly. These days it has been too much of it being not a louder version of the same noise but a new one only in my right ear. It means having two different noises.

I remember having the same noise of my tinnitus before but it was very low. in fact I always thought it is normal to listen at something inside your ear when you are in total silence. I remember talking about this before everything started this year. My concern is if I may have something different from ES.

When you talk about vertigo I know it is usually related with Meniere´s Disease. A lot of years ago I had a long period of vertigo. I had two strong episodes, like I couldn´t walk and stand straight. Then I had a long period with micro-episodes. I got a bit dizzy in the morning. They lasted a few seconds. Then I could do my normal life but feeling like my head was lighter. This happened for about a year when I finished University. It was like 12-13 years ago. At that time I went to the doctor. Nobody checked anything and I found no relation with my ears. Could this be related? When I went to the ENT last month I told it to her. She gave no credit to it so maybe it is not related. I really think about it now. Maybe this is just that I want to find a connection.

Right now I don´t have vertigo episodes or anything like that. This is the reason why the ENT has not checked anything else with me. She said they don´t look for nothing more if I have not vertigo. I will try to read something about Meniere. I would like to go to another ENT. I was thinking about it but I wanted to go to Barcelona next year. This week has been so scary that I don´t want to delay it anymore. I fear they will say there is nothing but symptoms are changing and getting worst. At least what is related to my ears.

I also feel another new thing. This happens for quite a few weeks. I hear like a blup sound in my left ear. It is like something moving inside. Like a bone or an air bubble moving. It can happen constantly for a few time. Then it dissapears. I also mentioned it to the ENT and again she said it was nothing.

I thought these symptoms are nothing but now… let me say I doubt it. They are more and more frequent and more scary. I know this is my mind, this is subjective, this is something I have to control in my head… but I really now what I feel. I know how I felt before. One year ago I didn´t feel my ears blocked all the time, I didn´t hear a blup or bones moving and I had no tinnitus or different sounds in my head. Something has to happen.

The maxilofacial surgeon said ES is not related with tinnitus. If there is no relation then there might be something else. I don´t want to accept nothing happens because it is happening. Symptoms are clearly changing. That is a fact to me.

I appreciate so much your answers. When I wrote last day I was home alone and scared. It was my way to say how I was feeling. Sorry if I sounded too scared or if it was inappropriate.

I will try to have an appointment with a new ENT. I have been given a new contact and I have nothing to lose. Maybe it will be just check my audition, look inside my ears and good luck, like the others but if I tell all these symptoms don´t you think they should look for something more???

I will let you know and again thank you thank you thank you. Your answers are trully a ray of light for me.

Hoping for a bright New Year 2019 for everybody. :sun_with_face:

Hi Oscar,

I disagree w/ your previous ENT doctor. Vertigo is most often associated w/ inner ear imbalances, so for her to say there was no relationship to your tinnitis & other symptoms, I feel was incorrect. She should have looked for a relationship even if you’re not having symptoms now.

As you know, tinnitus can be a symptom of ES. Just depends which cranial nerves & vascular tissues are being irritated by calcification or elongation. The maxilofacial surgeon you saw obviously has a set of symptoms (s)he thinks identify ES & anything else is unrelated. Again, I believe any doctor who limits ES symptoms to only a certain set of symptoms is ignorant of the scope of symptoms ES can cause, and sadly, there are too many doctors out there who fall into this category. It is possible that all the ear symptoms you have are related to ES. There are people who don’t have massive pain from ES but suffer from other types of symptoms which can be just as debilitating.

The anxiety you get when you’re having the flare-ups in your tinnitus or the “blup” sound in your ear could also be beyond your control. When Meniere’s Disease first started for me, I also went through a period of feeling panicked & out of control. It’s as I said, it made my brain feel sort of scrambled, & I think that brought on panic/anxiety. It does help once you have a diagnosis of some sort because then, when symptoms start, you know what to expect & hopefully how to take care of it to get the symptoms to subside. When my Meniere’s symptoms are very bad, & I have to take prednisone to make them stop, it usually takes 3-4 days for the prednisone to work so even that isn’t an instantaneous solution.

I’m so glad to hear you have a new ENT referral. I will be praying that this doctor will really listen to what you say about all the symptoms you’ve had & will look more deeply to see if perhaps they’re all somehow related. Our bodies are so very complex, & it’s easier for a doctor to dismiss odd symptoms than to try to weave them together to discover what’s really going on.

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With all the symptoms of Eagles and doctors who do not help, we all experience anxiety. I have tinnitus, it causes anxiety. I have learned to avoid telling the doctor about tinnitus because they quit listening. I have learned that I discuss ear pain, itching deep in the ear, jaw pain, something stuck in my throat even burning tongue. I do not talk about back and neck pain.
The reason, I only tell them the symptoms that are Classic, most doctors only listen to a few sentences, make your time count.
I have said that, but I believe that many of us have had neck and back pain and even some tinnitus relief after surgery. However, those symptoms may or may not be attributed to Eagles, so the doctors do not listen. After, I noticed what they listened to and what they ignored, I focused on what they were expecting to hear. Hope this helps.

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Great advice, Emma! SO GLAD to hear how well you’re doing now! You should continue to notice positive changes as the months pass.

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Hi. I have calcified elongate styloids on both sides which were picked up after having a CT scan of my sinuses in 2016. I have constant tinnitus/pressure in both ears 24/7, it’s there from the time I wake up until I go to sleep and it is hard to get off to sleep with it but I’ve been told it’s not related to ES, that ES causes pain. I also have neck pain at the base of my skull. The first doctor I saw, when it was picked up on the ct scan said all my symptoms are related to ES, however every doctor I’ve seen since seems to dismiss this.

I agree w/ your first doctor. In my personal opinion (I’m not a doctor), the other doctors are wrong. Most doctors do not know, or at least do not think about, the far ranging symptoms that can be caused when cranial nerves get irritated (which is what causes ES symptoms). Vascular compression can also be a problem & that causes another set of uncomfy symptoms.

The cranial nerves often affected by ES are the trigeminal, facial, glossopharyngeal, hypoglossal, accessory & vegus nerve. If you Google these nerves & what they affect in the body, you will learn a lot & may be able to explain the cause of at least some of your symptoms to any doctor who doubts they’re caused by ES.

I don’t know if it’s possible for you to travel, but Mr Axon at Addenbrooks in Cambridge is very experienced, & he has a special interest in tinnitus too. He might be more understanding, if you’re able to get a referral? He takes styloids back to the skull base, but if there’s calcified sections on the ligaments I’m not sure that he does that surgery.

Where is Oscar going?

We haven’t heard from Oscar in awhile & don’t know what he ended up doing. Did you check the doctors’ list for doctors in your country as they came fairly highly recommended from the members who had ES surgery done by them. Here’s the link in case you haven’t looked at the list:

https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us-2019/4753