New Symptom for Me

[Dawn]

Good morning all,  I woke up this morning with symptoms on the left side of my head/face which is my AN side.  I have mild pain right under the cheek bone, and what feels like headache type pain in forehead, temple and back of head....these symptoms are only on my AN Side. A little difficult to describe but I did the best I could...lol

My question is has anyone had these type syptoms?  It is a strange feeling.  My AN is small as of November it was only 1/2 cm and after testing and speaking with Doctor he tells me the location is on the Vestibular nerve.  I have a 35% deficit of Vestibular nerve.

So if anyone has had any of these symptoms and can enlighten me a little it would be great.  I am wondering if this is what the facial nerve pain is and if this now means the tumor is growing and pressing on this nerve.

Thanks
Dawn

[joebloggs]

Hi Dawn,

Sorry to hear you've had these new symptoms... I don't know about you but when I get new symptoms I'm always thinking, is it/isn't it and what does it mean?  I have had the headache in the forehead and side and back of the head on the AN side like you (only in the last two months) but I haven't had the pain in my cheek.  Having said that my face is numb, so I'm not sure I would feel it if I did.  Sometimes I also get a really sharp almost like an electrical bolt or something through my head, but it only lasts a second.  Wouldn't want it to last longer than that!  Not sure if that's the kind of pain you mean?  My AN is now 2.6cm, but I wouldn't read too much into that.  I don't think it means yours has suddenly grown to that size or anything.  Everyone seems to get different symptoms with different sizes and symptoms don't always seem to correlate with a particular size.  I'd say it probably means some kind of nerve is being tweaked by the AN to cause your symptoms, but I'm not a doctor.  I would say just maybe let your doctor know, try and manage the pain and not worry too much about it, if you can? 

Best of luck, hope the headaches don't hang around

JB

[Dawn]

Hi JB,

Thanks for the reply.  Funny you mention the electric like bolts.  I too had been having those symptoms for quite a few years.....usually when I'm straining, Like cheering loudly, laughing really hard or when I have to talk over loud noises, I would get those sharp sudden severe pain that would last a few seconds and be gone like nothing ever happened.  What got me to my diagnosis was.....While at a New York Ranger Hockey Game...it was an awesome game where Rangers tied the game with 1 min left and when I jumped up to cheer (Im an advid fan...lol)  I got another one of those bold like pains but this one lasted about 15 mins and I almost fainted.  Then ever since that time I have been "dizzy" and Nauseas and just not feeling right which led to MRI and my diagnosis.

Not that I'm glad to hear you get those symtpoms too but noone seemed to get what I was trying to explain and kept calling them headaches, which they werent.  So thanks for that.

So if your AN is 2.6 cm what is your treatment plan? 

Thanks for the reply

Dawn

[Cheryl R]

Dawn,  Sounds more like a sinus problem.   Maybe a sinus infection.              Do you have allergies or sinus trouble easily.               Try putting a warm cloth over it and maybe a shower.       See if some Tylenol helps.           I have had 3 ANs with my NF2 including a facial neuroma and never had any facial pain.     Those with trimgeminal neuralgia have made up for it.      
I hope it is something other than AN related for you,                        Cheryl R        

[cin605]

I rememer waking many a day before an diagnosed & removed w/ head feeling like someone whacked me in the back of the head w/ a baseball bat.days i woke up & could not stand up.Waliking into doorways & furniture.sideswiped 2 cars taking off the side mirror on my vehicle twice.
It really can play tricks w/ your body & mind.

[wendysig]

Hi Dawn,
I'm sorry to hear of your latest symptoms.  I never had any pain from my AN except pain behind my ear (my AN getting irritated and rearing it's ugly head according to my doc).  My ear and cheek and cheekbone would go numb from time to time and my doc told me it was my facial nerve acting up.  I don't know for sure, but  I suppose it might be your facial or (I hope not your trigeninal nerve.)   At least two people in the forum thought they had ANs but it turned out to have a trigeminal neuroma (more painful, unfortunately) A sinus infection is not so bad by comparison so I hope that's what it is. I hope it gets better soon.  Keep us posted.

Best wishes,
Wendy

[Cheryl R]

How is your head pain,Dawn?        Just wondering if my sinus hopeful idea for it was as  feasible as it sounded at the time?            Hope you have improved anyway.
                                         Cheryl R

[joebloggs]

Hi Dawn,

Yeah, those electric bolts are doozies...don't happen very often though, so that's good!  I can't believe you got the pain for 15 minutes - I would have fainted for sure I reckon!  At least it got you your diagnosis though eh?  It's weird, once I got diagnosed I started noticing heaps more symptoms...I'm not sure if they were new symptoms or that I was just more aware of things, you know?  I think maybe for a long time I was just ignoring stuff or not even aware of it. 

I don't get the headaches very often either, but just occasionally.  Hope yours aren't too often either.  They're not shocking headaches though - actually one was once, but the rest have just been a bit annoying, and if I drink some water and take a neurofen or paracetamol or something they tend to go away so that's ok.

As for my treatment, I'm lined up for translab surgery soon.  I'm on a waiting list, at this stage it's going to be in March, but I'll find out for sure in a month or so I reckon.  My hearing isn't that good and I'm only 31 so the decision was in the grand scheme of things it's best to try and protect my facial nerve if possible, therefore translab is the way to go.  They said I'm on the edge of being able to have radiotherapy, but because there's a cyst inside my tumour that they don't recommend it.  It's a while to wait, but hey, at least it will get done!

Hope you've managed to get some answers about your cheek pain from the doctor, good luck!

JB

[Dawn]

Hi all

I'm feeling better, have had a headache since Saturday.  If it keeps up I may call doctor for something to take.  The numbness went away late Saturday morning.  Very strange.  I spoke with one of the doctors I work with who is a Neurologist and he said it could have been facial nerve "flare up" as thats what it sounded like to him.

Cheryl - I originally thought that too but as I've had sinus infections before and have not had any allergy symptoms recently so I don't think it was that. but thank you for the thought

JB - you are the only one I've heard of that had those same pains in the head that I was getting, not that I'm happy you had them but I don't feel so alone now.  Good luck with your upcoming surgery please keep me posted....I will probably go for the Translab also but not sure of when, have MRI scheduled for March to see where we are at with the tumor.

Thanks to all
Dawn

[Dawn]

Hi Donnalynn

I am feeling better now, no more numbness but I still have headaches.  I pretty much have a headache everyday, some days are worse than others and most days I am nauseaus and again some days worse than others.

I tolerate it all b/c my Doctor says tumor is small and hearing is 100% so to wait.  I have to make appt for another opinion....I've been procrastinating...lol

Thank you for your concern,

Dawn

[Dawn]

Thanks for the well wishes

Did anyone else have these symptoms of constant headaches and nausea everyday especially in the mornings?

I take Motrin which helps a little but it never totally goes away.

Thanks
Dawn

[Kim Zingale]

Hey Dawn,
I have been getting intermittent headaches during the day, and I've been waking up almost every morning with one as well. No nausea though. I take a couple of ibuprofen and that usually clears it up, although I am careful to not bend over too much or do a lot of head movements, as that seems to bring it back on. Is this similar to what's happening to you?
Kim

[Dawn]

Hi Kim

Yes I agree, I wake up almost every morning with headaches, I usually take Motrin which does help. But especially in the morning when I'm getting myself ready for work, and making breakfast for kids and getting lunches packed I seem to get very nauseas...

My job unfortunately requires a lot of bending which does increase the headaches and nausea...so I guess its common
Sorry to hear you are having similar symptoms, very frustrating and annoying, I'd like to wake up one day without pain...after almost 2 months of this it is annoying.

Good luck to you
Dawn