Severe headache and desperate!

[Flo2009]

I am very curious as to what is the norm, dealing with these tumors.
I was diagnosed in August. I had the basic symptoms, ringing in one ear, some hearing loss, change in headache pattern and some facial numbness. My tumor is small. 9mm x7 mm.  I also started having a severe stabbing pain, directly in front of, and just behind the ear on the affected side. It stops me in my tracks but, thank God, it doesn’t last long. My headaches have increased in both severity and frequency. I now have a headache, all day, every day. It varies in severity, throughout the day. It is getting so bad that I am now only able to work for about 2 hours at a time, maybe once a week. The pain gets to migraine level, at least once a day. I have extreme fatigue (from the pain?) as well as the ‘brain fog’. My daughter thought I was getting dementia. My cervical lymph nodes are swollen, I have fevers and night sweats.
And recently, I have noticed ear ringing on the other side, along with the occasional stabbing pain. (Not as severe but very similar to the pain on the diagnosed side).
Is anyone else having these symptoms? I guess the main symptom I’m asking about is the pain.  It has taken control of my life!
One doctor told me that the tumor shouldn’t be causing any pain.
Please, if anyone else is experiencing pain or headaches from their tumor, let me know I’m not alone!
Is this all normal?

[Kathleen_Mc]

I suffered extreme headaches, if fact that was my major symptom, although the doctor's always say "the tumor doesn't cause headache" ....to those doctor's I say " grow one yourself and then say that".

[Joan Mingo]

I have been having sudden dull, hard pain just below and slightly behind AN ear. Lately I have been getting similar pain in non AN ear also. Also, getting stabbing pains in both ears. Not sure why in non AN ear. Little worried AN in other ear but nothing showed in MRI. Due to have next MRI in June. I don't have the headaches, thank goodness. So sorry you have such problem with them.
My biggest problem is 75% hearing loss and only 12% word recognition left, but also balance and cognitive issues.
Hope they can do something about your headaches.

[Patti]

I definitely had bad headaches and they were relieved after surgery. I hate that doctors' say that AN's don't cause headaches.  That being said, You sound like you have an additional problem going on.  I've never heard of fevers and swollen lymph nodes with ANs.

[davebanninga]

For any new people reading this, i just want to add that i have headaches aswell, the surgeon also says its not caused by the AN, i tried explaining him that i feel a stabbing pain in the side of my head at the exact spot the neuroma was at its a stabbing pain that comes and goes.

after taking 1 ibuprofen, some turmeric, melatonin and some other vitamins i dont have the stabbing pain anymore but the pain moved more downwards at the back of my head and its especially bad when crouching or lifting heavy stuff.

Reading symptoms and stories of other people i would def. say headache is a symptom of course i'm not a doctor but i do not agree with "headache is not caused by a AN"
but then who am i, i can only share my personal experience, but i know the feeling you have something in your head which grows, the uncertainty while in wait and scan is already scary having them tell you the headache inst a symptom makes you worry that they might have missed something or that it could be malignant.

You are not alone, and i shouldn't worry to much about it

[davebanninga]

Update, i went to my general practitioner today to tell her i have had bad headaches. She wanted to refer me to a physiotherapist because she figured it was stress related but first wanted me to go to the Neurologist, since the Neurosurgeon said it wasn't caused by the AN i hope the Neurologist might do some more research and hopefully find the problem, if the neurologist also gives the same conclusion i have had a 2nd opinion and can ease up and go start physiotherapy.

I will post if i have the results, if it was something AN related or if it was just my body tensing up under stress.

[mwatto]

I am 4 years out and stabbing pain is my only symptom post CK in that ear- especially annoying as it wakes me up. Also in eye and back of throat- due for next MRI but so far some shrinking and stable. Mine is near the trigeminal nerve so dont know if its that or radiation damage (my team said def its not that tho) in any event- also looking for solutions have tried melatonin, herbs, blood thinners...was told its maybe neck issues but a neck physio said its not. Had eyes checked a few times- not much there except dry eye and blurring. Havent lost much hearing...so really I dont know. Still cannot sleep on the side tho without triggering the stabbing pain. Not much re member feedback on this issue. UPDATE: mine turned out to be TMJ - dentist been telling me that for years. In any event mine has gone- I do TMJ exercises (You tube) and am mindful to relax my jaw all day with correct tongue placment. At noght a full spectrum CBD THC (13%) has helped so much. I take it with my 2mg compounded melatonin troche. Lemon balm tincture is an add on at times.

[donjehle]

The one thing I have learned about acoustic neuromas is that everyone's journey can be a little different, and it is not wise to discount a symptom because it doesn't fit into the typical AN pigeon hole.  My initial symptom was my tongue was burning and shortly thereafter, I started losing my hearing.  My ENT said that my burning tongue had nothing to do with the acoustic neuroma, and that it was just chance that they occurred near the same time.  But since joining the forums, I have found a few other people who also experienced a burning tongue alongside their acoustic neuroma.  Is that a common symptom?  Not at all.  But no one can convince me that it cannot be associated with an acoustic neuroma.

And that is how I see the headaches.  While I have not experienced an increase in headaches in my journey, I have read on the forums about too many people having headaches to say that it has nothing to do with an AN.  Acoustic Neuromas can cause many symptoms, and we do not individually suffer from all of them (Thank God!).  But I refuse to accept a specialist's opinion that a certain symptom has nothing to do with an AN when I see that symptom repeatedly on the forums.  That is one of the advantages we have when people post their experiences here.  We can see how our symptoms are different as well as how our symptoms are similar.  And it is okay for us to have different experiences in our journeys.  Michele has stabbing pain but not much hearing loss.  I have terrible hearing loss, but no stabbing pain.  The forums are here for us to support one another no matter how our symptoms may vary.