Hi all of you…
I feel so sick from this condition in every way that I keep wondering if this little bone could really make me feel so ill.
I have this very odd tense/ill feeling inside my whole body which come and goes all day many many times a day. But less strobg now that I am on Gabapentin. I also feel like crying when it happens. But No tears ever come. I feel like it might be sone kind of seizure. (Nothing on MRI showed on brain scans)
I have been thinking if that would be nerve related to since I cant really describe this very uncomfortable feeling very well.
Sometimes I wonder If I am going to die from this condition… Thats how bad I feel. But… I know that I am so well looked at by so many doctors. And cancer has been rejected too so many times… So I guess thats not it? The only thing they have found is that enlogated styloid thing.
Have anyone of you felt something similar?
Also this week I have been having an extreme bloodshoot left eye. Never saw anything like it… Weird Pain in the eye too when I rubbed it a little… Could that be from eagle too?
It all feels unbearable… And i am scared…
Eagle Rose,
I understand that feeling. I have told my husband for about 10 years there is something wrong with me and I can't explain it. I get blood shot eyes too and it has effected my vision in my right eye. The longer styloid side. Well not anymore the longer side:-) My eye issues started about 4 years ago. I have even had a white out in both eyes (lost sight in both eyes) for 20 min, no pain associated with it. I was at work in my work truck. Thank God I was parked when it happened. I saw a specialist for that. He called it a optical migraine and the medical field has no idea why they happen. I am going with ES for me. I have also woken up and just moving my eyes back and forth caused pain.
I thought for years it must be hormones or chronic fatigue syndrome or something genetic. At times I feel like I am vibrating. I thought after my hysterectomy in 2009 it would improve. Boy was I wrong.
I think I also have a magnetic field around me not related to ES. I have taking out 3 work computers and other machines in the last 5 years. At first it was a joke but not so much anymore. Specially when I took out the prius work vehicle. The mechanics have no idea who, why what or how. Everything checked out ok. LOL!!! I had to add this last part to make you smile.
I hope you can find some peace and a doctor to help you soon.
Hi Eagle Rose, I can relate very well to those feelings and to most of the symptoms you described in your introduction. I too have them every day - they come and go, like you mention. I sometimes wonder how to get through the day…I have two small kids to take care of and I am many times scared to be home alone with them “in case something happens to me”. Feels like I’m about to pass out or have a seizure at times - and it’s scary and exhausting having feelings like that all over the place! About a month ago I woke up with a bloodshot eye without knowing why - didn’t even know that could be ES related! I’m glad to see that you have a diagnosis. I’m still waiting for mine - I’ve heard for 6 years that whatever I have would just go over by itself and that it’s probably caused by anxiety! So fed up hearing that! I hope you get to a solution with your oral surgeon and that you can have those bones taken out and recover real soon! By the way, I’m in your beautiful country on vacation right now - in Helsingør (I’m half Danish/Norwegian myself:-)
Eagle Rose:
I have been right where you are, many times…scared out of my wits, in so much physical pain, in so much spiritual turmoil and emotionally distraught. Ready to throw in the towel. And the sad part is, I didn’t know it was two bones coming down from my skull causing all of this upheaval! For 20 years and test after test, doctor after doctor- all I heard was “Everything is normal.” I was in IMMENSE pain and had no explanation.
Two months ago I was wondering if I was going to die at my own hand from my condition 
I believe the God of my understanding placed the right people in my life at exactly the right time to lead me to the answers at exactly the right time. I would never go to the extreme option of taking my own life but 20 years of unexplainable pain was enough! On June 13th of this year I was diagnosed with Eagles. On August 9th I will have a left styloidectomy by an Ohio State University surgeon.
The pain has been unbearable. I am scared. But I am hopeful. I am fortunate to be surrounded by loving, caring friends. My sister will be driving from Dayton, OH to be with me also. I have faith in my surgeon. Faith in my Creator, the Great Spirit has never left me during this turbulent time and will carry me through this surgery and recovery. And when the time comes to take out the right “spike” my Creator will be there again!
Eagle Rose, times are rough, times are scary; but remember, feelings pass! Feelings are real yes, but they pass. Physical pain is real, but it can be overcome. There is a solution. Miracles happen! Miracles apply to you 
You deserve it, and you are worth it! Keep faith alive 
Oh yeah, I did read in medical literature somewhere that bloodshot eyes are an eagles symptom. I’m 43 now and have had bloodshot eyes since my teenage years. The doctors have shoved it off on allergies and prescribed eye drops but I stopped using them decades ago because they never worked! I’ll be interested to see if my symptoms are relieved on the left side after my surgery! I’m so excited!!!
Dear all of you
Thank you for taking your time to talk to me. When I read your replies this morning I had tears in my eyes. It calms me to know you are all out there. Fighters, believers and survivors. Hey… It might even end up save my life. just knowing that there might me hope and that Iam not alone
Thanks…
I am so happy for you. I hope that it will truely bring an end to ALL of your pain.
AmyBlue said:
Oh yeah, I did read in medical literature somewhere that bloodshot eyes are an eagles symptom. I’m 43 now and have had bloodshot eyes since my teenage years. The doctors have shoved it off on allergies and prescribed eye drops but I stopped using them decades ago because they never worked! I’ll be interested to see if my symptoms are relieved on the left side after my surgery! I’m so excited!!!
I am so moved by your words Amy. It made me believe that there is hope yet. I cant even imagine how it must have been for you with this condition for 20 years!!! I have only been dealing with this for 2,5 years… Thank you for your support and kindness
AmyBlue said:
Eagle Rose:
I have been right where you are, many times…scared out of my wits, in so much physical pain, in so much spiritual turmoil and emotionally distraught. Ready to throw in the towel. And the sad part is, I didn’t know it was two bones coming down from my skull causing all of this upheaval! For 20 years and test after test, doctor after doctor- all I heard was “Everything is normal.” I was in IMMENSE pain and had no explanation.
Two months ago I was wondering if I was going to die at my own hand from my condition
I believe the God of my understanding placed the right people in my life at exactly the right time to lead me to the answers at exactly the right time. I would never go to the extreme option of taking my own life but 20 years of unexplainable pain was enough! On June 13th of this year I was diagnosed with Eagles. On August 9th I will have a left styloidectomy by an Ohio State University surgeon.
The pain has been unbearable. I am scared. But I am hopeful. I am fortunate to be surrounded by loving, caring friends. My sister will be driving from Dayton, OH to be with me also. I have faith in my surgeon. Faith in my Creator, the Great Spirit has never left me during this turbulent time and will carry me through this surgery and recovery. And when the time comes to take out the right “spike” my Creator will be there again!
Eagle Rose, times are rough, times are scary; but remember, feelings pass! Feelings are real yes, but they pass. Physical pain is real, but it can be overcome. There is a solution. Miracles happen! Miracles apply to you
You deserve it, and you are worth it! Keep faith alive
Dear nenufar. Thank you. How funny that you are half a Dane and in denmark right now!! 
I think that Helsingør is a very charming city. I love to go there time to time as I have friends there. Are you living in Norway? Family in Denmark?
I do so relate to your situation … also with the children, being scared to be alone with them. It is so awfull. I really hope that you will have the eagle diagnosis and that you too can get help. So long you have been deling with your pain. Thats so cruel!! Lets go get our lives back!!!
The seizure thing/feeling… Have you been talking to doctors bout that?? Because I have so much trouble describing it. I do not think they understand what I am talking about. When did this kind of feelings start in your case?
.
Nenufar said:
Hi Eagle Rose, I can relate very well to those feelings and to most of the symptoms you described in your introduction. I too have them every day - they come and go, like you mention. I sometimes wonder how to get through the day…I have two small kids to take care of and I am many times scared to be home alone with them “in case something happens to me”. Feels like I’m about to pass out or have a seizure at times - and it’s scary and exhausting having feelings like that all over the place! About a month ago I woke up with a bloodshot eye without knowing why - didn’t even know that could be ES related! I’m glad to see that you have a diagnosis. I’m still waiting for mine - I’ve heard for 6 years that whatever I have would just go over by itself and that it’s probably caused by anxiety! So fed up hearing that! I hope you get to a solution with your oral surgeon and that you can have those bones taken out and recover real soon! By the way, I’m in your beautiful country on vacation right now - in Helsingør (I’m half Danish/Norwegian myself:-)
Hi Bigsbug Have you considered that you might be a super hero with magnetic powers?? that would be something very rare too
It sounds like you too have been having theese issues for over a decade. I think… That you are very brave to keep on believing and searching for answers. You did have a operation? But it did not work out?? Can you still suffer from eagle syndrome if the styloids are not long anymore?
BigsBug said:
Eagle Rose,
I understand that feeling. I have told my husband for about 10 years there is something wrong with me and I can't explain it. I get blood shot eyes too and it has effected my vision in my right eye. The longer styloid side. Well not anymore the longer side:-) My eye issues started about 4 years ago. I have even had a white out in both eyes (lost sight in both eyes) for 20 min, no pain associated with it. I was at work in my work truck. Thank God I was parked when it happened. I saw a specialist for that. He called it a optical migraine and the medical field has no idea why they happen. I am going with ES for me. I have also woken up and just moving my eyes back and forth caused pain.
I thought for years it must be hormones or chronic fatigue syndrome or something genetic. At times I feel like I am vibrating. I thought after my hysterectomy in 2009 it would improve. Boy was I wrong.
I think I also have a magnetic field around me not related to ES. I have taking out 3 work computers and other machines in the last 5 years. At first it was a joke but not so much anymore. Specially when I took out the prius work vehicle. The mechanics have no idea who, why what or how. Everything checked out ok. LOL!!! I had to add this last part to make you smile.
I hope you can find some peace and a doctor to help you soon.
You are all Hero’s in my book! Please forgive me for not getting back sooner. My family wants me to be better and well and done not feeling well! I’m post op my anterior Spinal Fusion of C-4 through C-7 fusion. The procedure has helped many problems. Then about 6 weeks post op. headaches are getting worse as well as earaches mostly on the ® side. The next day I can’t chew on my ® side capped root canal molar in the back. The DDS, uncaps a 2007 horrid infection! Two courses of Antibiotics and two weeks later? I think that’s cleared up? Still had a horrid headache today? I’m still having lots of pains on neck turning, swallowing, earaches, pressure in my head! In my gut I knew this fixing of my neck was step#1 and Step #2 is going to be fix my ES! Just they make me feel like a Hypochrondriac!
Hi Eagle Rose. I love coming to Denmark on vacation. This year we have done Dyrehavsbakken and the Zoo in Copenhagen:-) My girls of 7 and 4 loved it! I have family in Elsinore and Copenhagen. I grew up in Norway, but have lived the past 10 years in Spain (Tenerife). I think it’ll be hard to find doctors with first hand experience with ES where I live. It was actually my ENT who first had me checked for eagles in 2009(don’t know if he has had any real cases). He sent me to do a normal x-ray, but it didn’t show. At the time I didn’t look up what ES really was and didn’t think more of it since the test was normal. However, my symptoms and pains have remained and are gradually getting worse… I have been to all kinds of doctors, taken all sorts of tests (MRI’S of head/neck, scans of throat/head, x-rays, blood work) - all come back normal. A couple of months ago I stuck my finger down my throat and could feel something like a sharp bone poking out under the skin right under the tonsil area on my left side. I started to google that and my other symptoms and ES came up. I was quite shocked to see all of it coincided with what I’m experiencing. Then I found this place and now I don’t feel so alone in this… Last month I specifically asked for a scan to check for ES. It was done without contrast and came back “normal” as well. I’m getting quite frustrated getting nowhere! How did yours show? Like you, I find it hard to describe all my symptoms to the doctors. They will look at me like I’m crazy or a hypochondriac at times… The seizure like feeling started about a year ago, and is coming on and off. Do you also experience dificulty breathing at times? When I get these “feelings” I sometimes feel like it’s harder to breath as well. I really hope all of us will be cured from all this!!! If you have good doctors in Denmark I wouldn’t mind going there if I can’t find help in Spain. It will be interesting to follow you on your journey to get well!
Hi Nenufar!
I am not Eagle Rose but I hope it's okey ;).
My styloids are 3 cm long on both sides. I also stuck my finger in my throat because i felt something "was there" and felt the big sharp bone. It felt like a tusk!
I went to the Karolinska University in Stockholm ( I live in Sweden) and they saw the styloids on the CT scan. Said they are 3 cm long and sent me home. They did not show me the scan pictures. They said they do not do any surgery because it is too dangerous in this area.
I am in constant pain and it feels like if the bone .will penetrate through my tonsillar fossa inside my throat any minute...
My english is not so good but if you want you can leave a message in norwegian on my inbox.
I wonder why I can feel my right styloid in the tonsillar fossa if it is only 3 cm long? I think the styloid must be longer than this to be felt in this area?
Hi Ringblomman. I just wrote you something under your discussion:-) When I have better time I’ll write you in Norwegian to your inbox!
Hi Nenufar
I am so glad to hear that you and your girls have had a great vaccation here! It must be so lovely to have a little sense of home in three beautiful countries!! I just love Spain! And norway… Well it is SO pretty. I have been on a boat cruise to Oslo that took my breath away
I am very sorry to hear that you can not get the diagnosis from your scans. I have had an normal x-ray of my neck/left jaw area, an MRI of brain/neck a MRI (with contrast) of neck/throat and at last this CT scan of my styloid process area only (no contrast). So I have had a lot of scans too, but this time they only looked for styloid enlogation. I do not know how accurate the scans are. Have you asked about that? Do you know how long your “normal” was measured to be?
I recognize the “gradually getting worse” tendency and have like yourself been to an endless number of specialist doctors (ENT and neuros) who all have made a lot of tests and all have given me the same sceptical look saying “its all in your head”… I think that part is just as cruel as the beeing ill. I do not have difficulties breathing… But a couple of times I have had an odd sound to my breathing. Hollow. And one time I have made an exhale at a time when I expected an inhale. I have been very scared of this. But… I have had a lung scope with exrays as well… And it came out clear too. So I guess my body is just acting up. No explanations or signs of illness other that the styloids that is now finally caught on tape!! 
I have been attending a heaven sent ENT who have kept on trying to figure out what has been wrong with me. The first time I came into his consultation he ordered a MRI without hesitation. No other ENT had bothered to do so. So… I have chosen to stick with him. He has been puzzled like everyone else, but it has not kept him from trying. A year ago I asked him if it would be fine with him if I had a control check in his office every month. This way I would feel more save knowing that it would not develop into cancer… And maybe he would get new ideas to try out as time went. That were fine and this way it came about that he clled me this summer to tell me that he had been thinking about styloids and would like me to have a CT of this area. It showed 3,7 cm on my left side (the main pain area) and 3,1 cm on my right. He said that it could possibly explain why I have also felt a beginning pain on the right side. He also ment that it should be operated. But that will be decided by hospital ENT and oral surgeon. Fingers crossed… I will post anything that might be of help to you. br/>
Nenufar said:
Hi Eagle Rose. I love coming to Denmark on vacation. This year we have done Dyrehavsbakken and the Zoo in Copenhagen:-) My girls of 7 and 4 loved it! I have family in Elsinore and Copenhagen. I grew up in Norway, but have lived the past 10 years in Spain (Tenerife). I think it’ll be hard to find doctors with first hand experience with ES where I live. It was actually my ENT who first had me checked for eagles in 2009(don’t know if he has had any real cases). He sent me to do a normal x-ray, but it didn’t show. At the time I didn’t look up what ES really was and didn’t think more of it since the test was normal. However, my symptoms and pains have remained and are gradually getting worse… I have been to all kinds of doctors, taken all sorts of tests (MRI’S of head/neck, scans of throat/head, x-rays, blood work) - all come back normal. A couple of months ago I stuck my finger down my throat and could feel something like a sharp bone poking out under the skin right under the tonsil area on my left side. I started to google that and my other symptoms and ES came up. I was quite shocked to see all of it coincided with what I’m experiencing. Then I found this place and now I don’t feel so alone in this… Last month I specifically asked for a scan to check for ES. It was done without contrast and came back “normal” as well. I’m getting quite frustrated getting nowhere! How did yours show? Like you, I find it hard to describe all my symptoms to the doctors. They will look at me like I’m crazy or a hypochondriac at times… The seizure like feeling started about a year ago, and is coming on and off. Do you also experience dificulty breathing at times? When I get these “feelings” I sometimes feel like it’s harder to breath as well. I really hope all of us will be cured from all this!!! If you have good doctors in Denmark I wouldn’t mind going there if I can’t find help in Spain. It will be interesting to follow you on your journey to get well!