ear pain

[deborahgordon]

i had found some old posts on ear pain.  i am having such severe sharp shooting pains from deep in my ear.  when i brought this up to the doctor i was told this was not a symptom.  did anyone having this pain have their doctor tell them where this pain is coming from? it seems to happen when i am around alot of noise for a period of time.  also has anyone found anything that brings relief?  i have tried ibprophen, heat, ice, tylenol and am willing to try anything short of standing on my head and whistling, thank you

[moeson]

I have been experiencing facial pain, often times deep in the ear or near the jaw hinge on the AN side. I assume it is the facial nerve misfiring 5 mths after my CK treatments. In my case, I have avoiding calling my doctor for a nerve blocker prescription, but I am geting close to giving in. I wish you the best.

[deborahgordon]

thank you for your reply i wasn't aware they could nerve block this i see the doc july 16 and cant wait to bring up this option.  i avoid pain meds and the over the counter isn't working.  you have me a little giddy knowing i mioght be able to go without this pain lol ty again hagd, deborah

[Nank]

I have been having ear pain for months and months.  All doctors say it is not a symptom.   But if it was not for the pain, I would never have persisted with all of these doctors and made them do tests and then find the AN.  So I really don't know!  I also have tinnitus and headaches, but the pain is what really made me pursue it.

[cindyjarrett]

I had a lot of ear pain after having gamma knife.  It started around month 4.  My doctor finally put me on steroids and it cleared right up.  I am now 8 months out and have not had any further problems.  It was definitely related to the tumor.

[moeson]

Well, my neurosurgeon could not attribute the pain to the AN. He suggested that I look into TMJ as a possible cause since the pain is often near the jaw hinge on the AN side. He also referred me to a neurologist to determine whether it is in fact nerve pain rather than muscular. On the positive side, my 3 month MRI showed that a cyst in the center of the AN was no longer present. This should be the start of the AN necrosis.

[moeson]

My radiation oncologist recently put me on Prednisone (40 mg w/extended taper) and I have seen significant pain reduction. We had tried a high dose of Motrin, but that just served to aggravate my Crohn's disease. Fortunately, the steroids helps both health problems, although I can't wait to get off them due to the usual side effects. My neurosurgeon couldn't pinpoint the specific nerve causing the pain, so I am fortunate that both doctors have been following me.  Hopefully the pain will soon be gone for good.

[robinb]

I am 6 mos post GK.
Like Cindy, I have been having sharp fleeting pains behind the AN ear; in the bony area. My doc asked if TMJ OK and dentist confirmed no problems. Doc said wanted to wait till see MRI results in a couple of weeks.
However I went to ENT for follow up hearing test; hearing less than 40% again so gave me Prednisone. Interestingly, no pain since I started in two days ago plus no tinnitus either. Little noticeable hearing improvement however. No side effects from the Prednisone.

[moeson]

I am sorry about the hearing. Mine seems to be the same on Prednisone, and slightly worse since the CK treatments. Was your tinnitus a constant presence before the Prednisone?

[robinb]

It's been more off than on lately, but most of the time I don't even notice it.

[moeson]

While still on Prednisone (20mg), my ear pain underwent a significant change this past week. For two days, I experienced an "electrical" nerve pain in my AN ear.  The pain was very sharp and lasted for about 10 seconds during each episode. It was quite different than the previous pain which felt like something was poking around the ear. Since yesterday, this ear pain, as well as the top of the head I have long been experiencing, are both gone. I am hopeful that this new development means the impacted nerves have somehow corrected themselves, so to speak. Has anyone had a similar experience?

[nftwoed]

Hello moeson;

   You wrote: "I experienced an "electrical" nerve pain in my AN ear."
   I haven't experienced it personally but have read of pts who have. It has been referred to as "ice pick ear pain" and at the time I was reading it, was studying Meniere's Disease.
   In thinking, the exact etiology is unknown, but, this does sound electrical rather than vascular in nature.
   The ear is so very complex in itself and in it's relationship to other organs and bodily activities.

[moeson]

I appreciate the input. For the past two days I haven't had a recurrence, and I am hoping this was just a transitory neuralgia episode.

[Angie UK]

Hi there, I suffered terribly with this.  My GP told me it is Trigeminal Neuralgia (spelling might be amiss!), and gave me a UK drug called Amitriptylene.  He confirmed it is most definitely connected to the AN (it stems from interference to the nerves) & mine always happens when I have got myself stressed in any way, be it a noisy or busy environment, anything visually challenging, tiredness etc.  I am afraid I dont know what it might be marketed as in USA if not the same name, but it is essentially a nerve drug, & it works!  However, it also sends me to sleep in a matter of minutes, so is no use during the day.  This appears to be a common side effect.