My Hair Hurts

Painful Face

I am proud of myself - I made it to work despite not hardly being able to walk once I got there, and I was actually productive working on three or four projects.  I didn't finish them, but I got close on a couple.  Woo Hoo!  Put the smackdown on those pesky Legs today!!!  I think my theme for the next year is going to be DISTRACTION!!!  I think it will work just as well as what the doctors have been dishing out.

Still no word from Dr. Kildare about his "plan" for my care.  I fear March 2012 may come and go before they call.  Oh well, it was a long shot at best.  In January I will have to see if I can get an appointment somewhere else.  This is excessively tiresome, but in the year of DISTRACTION maybe I can tackle The Legs and get the problem under some sort of control.  Or maybe not.

I think because of all the pain I am already experiencing today (my cup o' pain is chock full) The Headache is trying to revive.  I guess it is still the old three day cycle, as Friday was horrid, so I guess Monday has been horrid, then Thursday, then Sunday.  Yeah!!!  Christmas Eve and Christmas are not in the horrid cycle bad days, so I may get to enjoy a bit of holiday yet.

Sometimes when The Headache gets to going (like today) I experience a lot of facial pain, and anything touching it (glasses, hair, wind, me) sets it off worse.  I was told this is a type of allodynia - experiencing pain from non-painful touch.  It is a symptom that goes with the diagnosis of Hemicrania Continua, but I think most headache conditions have this as a possible symptom.  Tonight even my hair follicles seem to hurt when I move my hair.   I wonder at times like these if I need a Sinead O'Connor hair cut.  Probably the irritation of shaving my head would hurt worse than the irritation of the hair.   Dang!  Can't win for losing!

One of the problems with having too many health problems is that the problems from one distinct issue (i.e. allodynia from a headache condition) cross over and create different problems for another health issue. 

I have mild sleep apnea (diagnosed by Dr. Dense in 2008 after forcing me to take a sleep study in her freezing torture chamber / sleep center combo) and am supposed to use an APAP machine to assist with this.  Dr. Dense insisted I get this study done when first trying to treat me for The Headache, and refused to prescribe any medication until I did this. I am sure this is because she could charge several thousand dollars for reviewing a report spit out by a machine instead of just a few hundred dollars for my office visits, but I guess I'm being cynical aren't I??  Anyway, I could barely stand the wires strapped to my face for the sleep study, and THEN boy howdy try putting an elastic band tightly across some region of your head that does not like to be touched to hold a mask on.  The allodynia from The Headache prevents me from wearing the mask to assist with nighttime breathing which is supposed to help The Headache.  Impossible!

The cankle situation got totally out of hand this weekend.  I not only had cankles, but I couldn't even stick them in my big ol' cankle shoes.  I called the endocrinologist Dr. Kid to say I need a new diabetic medication, Actos is not for me or put me back on Avandamet.  The last time I took Actos I swelled up like a puffer fish, and I'm doing it again.  So this is how it works.  Called at 8:00 AM, talked with medical assistant who put a note in the system.  She said they would call the new prescription in and give me a call back.  In the meantime I make it to work, and get busy distracting myself.  At 2:30 I call my pharmacist and they have not received a new prescription.  I then call Dr. Kid's office and speak to the medical assistant who apologizes that they have not called me yet. Dr. Kid won't prescribe Avandamet, even though I had taken it for two years no problems found, so he wants to know what I want to take.  Huh??  I then tell the MA that I can't take sulfonylureas because I had had an allergic reaction to them, and I couldn't do metformin alone because I was at the limit I could tolerate.  She said they would call back or call in the script.  I wait until after 4:00 and call the pharmacy, no new script.  I call Dr. Kid's office.  They are closed.  So I guess I will try again tomorrow morning.  Big Sigh.

The lunar eclipse is starting, and I am going to run out and see what I can see.  It is very foggy tonight, so hoping the full moon is enough to burn through the clouds and the fog.

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.