Deep ear pain and constant head pain for 4 1/2 years

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I’m a 47 year old female that has had deep ear pain  with fullness and excruciating  constant head pain for 4 1/2 years.   I’ve had 7 MRIs , CT scans , ultra sounds  with no answers all negative.    I’ve been to ENTs, primary care doctors, neurologist, neurosurgeons.  They do not know why I’m having this constant pain it unbearable.  I’ve tried multiple medications.  I’m now taking amitriptaline it is helping me with the pain but never with out pain. I also have spasms in my  tongue .  I thought I might have glossopharnageal   Or eagle syndrome.  But the doctors say no.  My neurosurgeon says I symptoms of some type of glossopharnageal  . But I have so many types of pain in my ears and head and neck that he can not pin point it... 

 I once had a cortisone shot in my shoulder and while  having the shot I got severe ear pain in right ear  I screamed out in pain but he finished putting the shot in my shoulder.      That’s the last thing I can think of that made my pain start.  All of the doctors that I’ve been to says that can’t happen with a cortisone shot..  so who knows.    

     I have major pressure in my ears and I can hear my heart beating in my ear mostly right.  When I Bend over to put my shoes on or pick something up I can hear my heart beat going faster and faster . And the pressure in my head feels like my head is going to explode!   I stand up and my pressure and heart beat slowly go back to normal.   I feel like I’m going to have a stroke .   

   If anybody else has had the same thing  please answer .  I’m desperate for help!    I will really keep y’all informed as to what happens and if I ever get relief.   Unlike everybody else on this site.  I feel I should keep you updated so I can help other people with the same problems.  This is so miserable  and the quality of  life is  zip!  Thank you I wish all of you help with your ailments!     Bbair 

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  • Posted

    Hi Bonnie I'm sorry that you are going through this. I suffer from migraines and the only saving grace is my chiropractor. Most headaches are caused by the neck being out of alignment. Also with your ear pain has anyone ever mentioned the occipital nerves that run behind your ear. You have have occipital neuralgia. It's worth checking out. It may or may not be either of these things but it's worth a shot looking into it. I hope this helps and you get some relief soon.

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    • Posted

      Oh yes  they’ve checked my  occipital and trigeminal and glossopharnageal nerve.   I honestly believe it’s the 9th cranial nerve which is the glossopharnageal   .   I honestly think it’s a combo of all three.  The doctors say.   Oh no. That would be one In a million    There is just no way I could have all three.   But I believe I  do ...   sometimes it’s hard to get the doctors to really listen to you. I mean really listen.   It seems they already have there mind made up befor the even see you 
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    • Posted

      The doctors and I have only agreed on one thing.  It’s not a migraine...     they just can’t pinpoint what I have down to one thing because I have multiple symptoms.  It’s very frustrating.  I feel I have something lodged in my throat. My ears  are killing me and full.  I also have total head pain. Total.   I have pain from my neck up constant and spasms in my tongue that come out of nowhere. Wakes me  right out of my sleep. Like no othe pain.  It’s crazy.   I’m thankful you responded.    Thank you!
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  • Posted

    Hi Bonnie,I too get ear pan,fullness in my ears,vertigo,sporadic deafness and nausea and I suffer from chronic migraine.Studies have shown that there is a link between migraine and menieres but when I mentioned it to my practice nurse(no doctors apps available!!!!) she told me very patronisingly that it was likely to be ear wax! Go back to your Neuro and insist on being heard.There is no need for you to suffer like this.Its appalling.Hope you feel better soon.
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    • Posted

      Thank you for your reply! I’ve been to every doctor out there even doctors in other states.   I just know I’m not the only one in this whole world who is suffering with this.  I’m going to try a mouth guard to see what happens!  It’s worth a try.  Thanks again.  I will keep you updated!!!! 😀😀😇

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  • Posted

    Hi Bonnie, I am so sorry you are suffering like this...I have a few things for you to try or see if they answer any questions, there are multiple symptoms you can tackle to be sure it ISNT one of.....Do you get pain in front of your ear? running nose? vision issues? Some of these sound like TMJ issues(can be caused by tooth alignment, chewing certain types of things, laying on one side, tooth grinding, injury, anatomy of jaw, all are things to consider)...inflammation, pain, pressure on your nerves can actually cause migraines(not a typical migraine) or regular headaches...also some allergies & blood pressure can cause similar issues, inflammation can come & go so wouldnt show up on tests, inflammation in ears can cause vertigo, pressure when bending over, partial hearing loss, ringing & pulsing in your ears and pain(that can radiate..which is important to remember)...a neck issue should have shown up on one of the tests unless it is a nerve issue(sometimes they do nerve conduction tests to trigger/track specific nerves)..my doctors only send people to chiropractor for lower body, not having a CAUSE for neck issues(injury &/or disease) they dont like to refer for manipulation....like I said there are different things to try, having MULTIPLE CAUSES can make it hard to diagnose...these are just ideas, it cant hurt to try: ASK YOUR DOCTOR ABOUT MEDICATION BEFORE YOU TRY ANY MEDS, EVEN OVER THE COUNTER(esp. since you are taking OTHER meds)....if either warmth or cold on your neck/jaw/ear area helps, an anti-inflammatory either orally(w/food) or topical on your painful areas, try wearing a mouthguard, lie on your back to sleep & try sleeping in a different place w/other pillows for a few nights, just sleeping or sitting/laying in certain positions & etc can start a chain reaction of symptoms, sit down or squat instead of bending over to do things, an anti-histamine(try medications one at a time)keep a journal and see if there are common things that make you feel better or worse & you can document your symptoms(making it easier to explain later)...I wish I could be of more help but maybe you have some other ways to determine WHAT ITS NOT?? Amitriptyline is ALWAYS the go to medication when they have a patient with symptoms w/o a cause, it has many uses, if it helps stick with it, after a few weeks you will get the best benefits....Best Wishes💟I really hope you get answers or at least some relief

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    • Posted

      Oh thank you so much for your reply!!!!no runny nose or eyes.     I am going to try sleeping with a mouth guard.  It’s worth a try!   I never thought my head would be hurting for four in a half years!   It’s crazy!   Thank you again!!!! I will keep you updated!!!!   Oh I don’t get dizzy or have vision problems. Or light sensitive . Nothing triggers it.  It’s just constant pain. All day everyday   At the end of July it will be 5 years....   
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  • Posted

    Hi bonnie I have exactly the same issues as you,have been for the last 12 years all day everyday has never gone away,have you had any luck at all ? X
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  • Posted

    Hi Bonnie! 

    I know your post is from 5 months ago, but I figured I would share with you my experience as I have gone through the exact same thing for about a year. I have been to nearly every doctor trying to figure out why I have these symptoms and have had all of my test results come up short. I was diagnosed with chronic daily migraine, occipital neuralgia, POTS disease, CFS and fibromyalgia (intense pain and pressure in ears). I was given Elavil (like yourself) and sent on my way. I was sad that I had to take the elavil and was afraid of the side effects, but I felt like I had no choice because the daily pain ruined my life. At 30, I lost my job, I lost my social life, I stopped going outside and frankly, I didn't see a reason to live if I was going to have to suffer like that every day. 

    I had been on a standard american diet all my life and was told to help with the pain I should adopt an anti-inflammatory diet (No animal products, no sugar, no gluten, no alcohol, no caffeine). This does not sound like a lot of fun and I started the diet kicking and screaming, but I figured I had nothing left to lose and I would do anything to get part of my life back. I started slow, every week cutting out something new. I have been drinking coffee since I was ten....thats a whopping 20 years as a coffee addict and man was that so so hard, but I did it. 

    After 3 weeks into the diet, the pounding stopped, the cloud of fatigue lifted and I had a finally smile back on my face. Was I 100% cured? No, but what I am saying is I tried this out as a last ditch attempt before settling for a life of heavy drugs and it worked. 

    When I started, I had zero expectations because as an American, I grew up thinking, "Oh I need meat for protein and iron" and "Oh I need milk for calcium!" , but now I'm realizing that I was poisoning myself and my body was retaliating. Some people are more sensitive to chemicals and hormones than others. Now we are finding that meat eaters have higher rates of cancer and drinking milk and eating dairy products causes high levels of inflammation and actually CAUSES osteoporosis. How can the SAD be healthy if 75% of Americans are overweight? 

    I'm sorry if I sound preachy, I'm not one of those crazy activists,  but I came across this thread because this is exactly what was plaguing me and I hope that my story helps anyone else going through this issue. 

     I'm not sure what your diet consists of, but I would say give a whole foods, plant diet a try. If you can't quit meat, at least quit dairy - once I quit the dairy the pounding in my head stopped. 

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