Pre-op Headaches

[Cindyswart]

Hello to all!!

Does anyone suffer with headaches that you are being told are not brought on by your AN? I have now been told that by 4 doctors. Yet the entire side of my face on the AN side aches like a toothache all the time. The last doc told me that it was fatigue kinda blew it off. I also suffer from active Herpes Simplex I and less active Epstein Barr, both of which I am being treated for. Finally yesterday I called my neuro and asked for a steroid thinking that swelling may be causing the pain. Thankfully he listened and phoned in something. Why are the docs always so sure that you cannot have pain from something that is growing in your head and taking up precious space. Please chime in , I refuse to give up!

Cindy

[mk]

Do you suffer from headaches in addition to the "toothache" - like pain? The latter could be trigeminal nerve pain, so technically not a "headache", but still AN related, because the AN may be pressing on the trigeminal nerve. A steroid could help by relieving the swelling, but there are also drugs like Neurontin/Lyrica that some doctors prescribe.

Marianna

[Cindyswart]

Thanks! I have the Prednisone and will give it a few days. I have actually had this pain since before I was diagnosed. At that time I was being treated for Bell Palsy.

Cindy

[nftwoed]

Hello;

  You have a medium size AN. To my knowledge, HA/facial pain cannot always be attributed to AN. The space occupying lesion does not always, or even usually cause pain unless compressing the trigeminal nerve.
  HA/facial pain is usually considered "idiopathic" in AN pts. but never the less, many experience it.

[Cindyswart]

Prednisone is working.... trying to step down the dosage now- down to 15mg AM and 10mg PM- the headache pain is in the area behind my AN ear and throbs/stabs.  Working on it...

[Cindyswart]

okay, Tried to step down on the Prednisone, the pain came back like gangbusters. they uped my dosage again and I see the neuro tomorrow for advise. I have also noticed that the numbness became much more pronounced when i tried stepping down the Pred. Hmmm, wonder what that means...

[FLsunshine]

I'm sorry for your pain and your frustrations.  I too suffer from headaches and was told they are not AN related.  But instead of focusing on the cause of the pain (and what it is or is not), I focused on finding solutions for the pain itself.  That helped me from going crazy as I got tired of hearing "its not from the AN".  All I know is I didn't have the pain before and when I was diagonosed the pain was there -- mornning headaches at the skull base -- that continue today into my 5th year of w&w.

I also have the jaw and face pain which are new just this past year.  Frozen veggies on the face/jaw really helps.   

Find a doctor that will listen and try any combination of meds that help.  Anti-inflammatories and steriods did the trick for me.  Good luck and keep the faith!