Hello from Newbie :) Grab a coffee.. long post most likely :)

Hi all

FaceAche derives from a nickname given to someone who is a bit sour/grumpy faced in Scotland .. just so you know lol

I have had ongoing head pains for over three years now but ongoing headaches for 20+ years which was more than likely due to having APS. I also have Fibro too.

It started with an ache in my neck around the jugular area. Not painful but just annoying and a warm scarf would ease it. I did have one episode of extreme pain slightly lower in my neck which I can only describe as *white pain*. I never got that checked out but I do remember being doubled over kitchen sink balling my eyes out with it :(

It seemed to stem from there on. Jaw/temple and up onto scalp and a pain in my cheek. Now it has spread to occipital/base of skull to rear scalp area across the bridge of my nose/roof of my mouth and just under my eye (this is all right sided).

There is a routine to it all and I noted that the face pain etc came on around day 4 of my period and lasted up to 20 days but now it appears I am menopausal and although there is still a link, it has changed somewhat to just before I start to bleed. I also get an annoying humming in my right ear (bit like when you hold a bottle up to your lips to take a drink while outside and the wind catches it and makes a humming noise). I get a weird headache prior to the face pain kicking in also for days. Only way to describe it is that the area between my brain and my skull feels metallic (abit like when you lick a battery - if that makes any sense at all lol)

The pain my cheek I can feel stemming from what feels like a tendon that links my jaw upwards.

I have seen a neurologist and a Max Fax Consultant. Neuro says its Atypical facial pain and/or facial migraine but does not seem to be typical TN. The Max Fax guy says its due to over chewing.

I dont dispute any of these diagnosis's but they dont feel right at all and I have always held my belief that its inflammation linked and possibly vascular.

I have many questions but dont want to overload this page too much.

I have had CT as unable to get into MRI which apparently was clear. I dont hold much faith in docs due to how I was treated when I took ill with APS and so I question everything and do my research.. the only thing that I have come across to date that fits is Temporal Tendonitis.

Sadly my appointment with the Max Fax Doc didnt go as well as I had hoped and he shot me down by making an inappropriate comment of how I should be able to hold down a job with APS when asking me why I didnt work.. he was rude, abrupt and well, I felt awful at being judged by a medical professional, so I didnt get opportunity to ask him if that is what he thought it could be.. I dont know if i have the strength at moment to fight it.. Neuro is also a bit of a waste of space.. arrogant.. but aren't most of them?

Nice to meet you all .. prob missed out tons.. but am tired and in a bit of discomfort atm :(

Awwww. Welcome, but sorry so much pain… Have you read the book we read? THE book where we learn much of our own…and coming here…STRIKING BACK. BY DR. KEN CASEY

Also,go to google images… Type in atypical face pain…see what it looks like there…any same as you?

Also get over the counter or prescription LIDOCAINE … Wonderful topic on face…

One woman here asked her doctor for it…and he said no…that won’t help you… I bout came off the page here!!

…what was going to hurt, for this person to ask for some damn cream?

some docs are not the ones you need, get a new one if you can…

Keep researching…and look at the tab above that says groups …might be one you would like to talk to there also…

Kimberly

Thank you Kimberly.. Lidocaine.. I have never heard of it. is this a US or a UK thing? I have tried ibuprofen gel & bonjella in the mouth at same time.. along with usual painkillers.. not sure if it worked or not ..

Our Canada friends get EMLA cream over the counter…we have to have prescription…



USA here is prescripts of 3

and also found elsewhere ?

other places you can find



LIDODERM patch…put it on face ahhhhhh

LIDOCAINE cream…less strong and is clear



lidocaine mouthwash…



Go to groups called topical group … Patch is my favorite

None are pain killer type

Another I remembered is ketamine ! Maybe mixed with lidocaine?

face ache I’m in wales and have been prescribed lidocaine by pain clinic. Your pain sounds like it has lots of parallels to mine. Lots of love x

Hi all just an update since I was last here.

After a visit to the docs in tears after a particular bad bout of pain early hours of morning I have relented and started to take propranolol.

This is just day one.. two tablets down (40mg each time) and although I am not feeling pain.. I am feeling what causes the pain rage underneath.. its very disconcerting and its messing with my brain messages because its telling me I should feel pain..

does this go away or is this how it is.. you can still feel what causes the pain but not the pain itself?

Many thanks.. :)

Wow…I’ve felt lots of mental and body weird stuff with TN… I know that the meds do not
stop the TN… just kinds of masks it…your vessel is still screaming inside. Try to relax the rest of you for now!

another good over the counter thing is called capzasin. its a cream that comes in a tube with a soft applicator tip. If you can't find that anything that has the capsaicin in it, it works to calm nerve pain. Its not a cure all, but I carry it in my purse in case I have some pain while out and about places. it smells a bit harsh, and will make your eyes water so try to not get it too close to your eyes. I use it a lot. It can help though to relieve minor pain. As far as doctors go, research and find a good neurologist. A family doctor won't tell you much. I have had bad experiences too where they never believed me. Till I found a good one that sent me to my neurologist who is amazing. You just gotta listen to what people are saying about local docs. I found mine because my best friend recommended the office and they really listened to me. Also I have read online that vitamin B helps with nerve problems. I have no idea if it works or not, I just take it anyhow, ya never know when a natural remedy will work better than a chemical one. good luck, I hope you find some relief!