Monday, September 27, 2010

Facial Pain And The Headache

Working on A Pain Action Plan

I was told when the occipital stimulator was installed that there could be some "crosstalk" between the occipital nerve and the trigeminal nerve, the supraorbital nerve and my facial nerves.  These nerves do not touch the occipital nerve network, they sorta interweave their nerve networks with the ends of the occipital nerve network.  The idea was that as the occipital nerve received stimulation it could somehow influence (chemically?, electrically?) the other nerves and problems I have with facial pain could be improved.

Now that I have not had my electricity fix for a couple of days I realize that the facial pain had been reduced.  The pain on the left side of my face at present is at the "let me rip the nerves out with a pair of pliers - it couldn't hurt worse" stage.  I'm also noticing my left eye is turning in at times - I'm sure this is a side effect from the burning nerve pain that bisects my entire face beginning at midline and extending back to my left ear and ending under my chin.  I think of those cliche German officers in the old WWII movies who have saber cut diagonally over their eyes and down their cheeks: I feel like there is a big saber cut running down my face too.   I guess it will go well with my Ms. Peanut monicle.

I am not feeling very with it today, but yesterday wasn't too bad - so one good day out of four! Yeah!!!  Trying to figure out pain management vs. driving tomorrow because I will need to go get the controller and reprogram my new one.  To medicate or not medicate - that is the question.  To drive or not to drive is the next decision.  Big Sigh.

I was looking up allodynia (which is an exaggerated pain response to normal stimulus) and stumbled upon a link from the National Institute of Health (NIH) to a site called PainAction.  I have signed up, and I'm going to see if I can formulate a pain control plan utilizing their tools.  There are four main sections:  Back Pain, Migraine Pain, Cancer Pain, and Neuropathic Pain.  I definitely have Neuropathic Pain, and I think some of the information under Migraine Pain will be of assistance with The Headache.  Too bad they don't have a section called Belly Pain!  Then it would be like the trifecta of pain websites! 

There is a pain tracking tool, and a section on self-help, and information on alternative therapies.  I have downloaded their pain management booklet, and am going to read up on chronic pain and how to manage it.  Hoping to get a few new tips that I can use in addition to my daily stretches and biofeedback.  I know I need to get back in physical therapy - it did help my endurance this summer as I was able to be on my feet longer without pain intervening.  Also the myofacial release decreased some of the sensitivity (allodynia) I have in the radiation fields where I received treatment, so physical therapy definitely is a winner in my world!!

The hives are dancing across my skin tonight, here, there, and everywhere.  They are bigger than they have been, and I fear I may be allergic to dilaudid, which I have been taking for The Headache when it is at its worst the last few days.  I will be extremely sorry if that is the case, as I will be almost completely out of pain medication options.   Plus I will be back to having the Big Lips.  My ears feel like they are swelling and are extremely itchy.  My digestion quit working earlier today, so The Belly is having its turn while all systems are out of operation.

I am having trouble sleeping between The Headache, The Belly, and The Hives.  The Legs are behaving which is a plus.  The weather has cooled to a nice fall temperature, and I have started the furnace because my mother (who will be 80 in another month or so) has a hard time staying warm.  I personally keep my bedroom at about 68 in the winter because since The Headache came along I can't sleep in a hot bedroom. 

Hoping this next week will be better than last.  I have things I need to get done at work, and did not plan to have a health crisis.  No repeats this next week.  Am predicting smoooooth sailing and a productive work week!  I want to be able to pull some long days, as I know exactly what I need to do - just getting it done is another matter.


  1. Winny I am soooo very sorry that you are experiencing all this pain. Here listening and with you.... ((((Winny))))

  2. Thanks JBR:Hoping to hear from my occipital repairman this morning. Will be very sad if it is another day of waiting, but it is survivable just very unpleasant.