No More Pain Spikes

Working Towards Normalcy

Last year I spent in desperate pursuit of getting an occipital stimulator installed to mitigate my headache pain. The degree of daily nonstop pain I was in was more than I could handle, and medication did little to assist control. The diagnosis I have, hemicrania continua, only responds well to one medication [indomethacin] and that had started to ruin my pancreas so I was being forced to discontinue it with no real replacement for pain relief. By a miracle of some sort I got accepted into a trial study of occipital stimulation for headache control, and to my amazement the stimulator did what it was supposed - controlled my pain! Not 100% but close enough at this point I'm considering the daily pain problem fixed.

What I am left with are spikes of extreme pain - they come in bunches, piercing through my head on the left side, burning their way back to my hind brain where they disappear as quickly as they come. All I can do is bear down and hunker through the outburst. I don't think any medication I take will stop these, as my headache specialist, Doc Optimist, said that indomethacin is the medication of choice to control these "spikes" also.

My hope for this next year is to achieve pain control: for the daily headache, for the pain spikes, and for my now chronic pancreatitis. Last year The Headache did not respond well to pain medication, the only relief I received with pain medication was when I was given enough in an emergency room to send me to the sweet land of oblivion. With the main part of The Headache now being gently tingled out of my skull by my electronic headache zapper, I hope that the pain medication I am taking for the pancreas problem will also take care of The Spikes.

I have only been on a pain medication regimen for a handful of days, but I am getting over the sedating effects, and have noticed a decrease not only of The Belly pain but have only had one Spike episode in this time. It is too soon for me to know if this is just fortuitous circumstance or a real benefit of the medication. My worst fear is that the medication (time release tramadol and vicodin) will create the dreaded Monster: Medication Overuse Headache.

My PCP assures me that the level of medication I am taking verses the level of pain I am experiencing will not lead to addiction. He feels that even with the new regimen I am undermedicated. I prefer to take baby steps with new medication - my roller coaster experience the first year The Headache manifested has made me a cautious consumer. I only want to improve my health situation, not worsen it.

With better pain control I plan to increase my activity levels. I have let contacts with friends slide the last couple of years, as it was a struggle just trying to keep working. I miss my friends. Email and phone calls are great, but they are not a substitute for human to human interaction. I need to start getting out regardless of how I feel, but getting the energy to do so will be hard. Thank goodness my family is here and they don't care if I'm a limp dishrag some days!

Looking forward to a year full of surprises. I could not have predicted how well 2009 turned out, so I am hoping for an even better 2010.

Sad News, Good Memories

My Cousin Harold

Got news last night that my cousin Harold has been diagnosed with lung cancer that has metastisized to his lymph nodes. Not a good diagnosis. He has started treatment hoping to reduce the size of the tumor that is causing him a lot of pain. He is having difficulty breathing, which can be very scary. Harold is probably around 61 years old, but I don't think of him as being that age.

I remember Harold as he was in high school, working at the dimestore soda fountain giving me a coca cola made from real coca cola syrup and fizzy water in a tiny little coca cola glass. I remember him giving me rides on a bicycle down to where the railroad tracks crossed the road near my grandparents house. I remember him driving me and my fifty million other small cousins to see movies at the nearest movie theatre that was fifteen miles away, packed three or four deep, oldest to the youngest, on the bench seats of his father's car. I remember sending goody boxes to him when he was in the infantry in Vietnam. I remember his kindness to all of his myriad cousins and his joy about being a father. I remember his patience at still being called Little Harold even when his uncle Harold had passed away 20 years ago!

I am saddened, worried about him and his family and his brothers Don Ralph and Bob, hoping that he will be the one in a million to have remission. I work with a gentleman that had a similar diagnosis with inoperable lung cancer and survived to be cancer free, so I know it happens. I pray it will happen to my cousin. Please keep him and his family in your prayers.

My Poor Dachshund

Looking for his Mamma

I took my 79 yo mom (who lives with me or I with her - however you want to say it) to the doctor today. We had to be gone awhile for that, and then awhile longer when they wanted her to get another chest xray instead of a CT scan. My brother was dog sitting for us, and he took this video (and I'm sorry if it's slow and long - don't know how to edit this format!) of what my dachshund Augie does when we both leave the house.

He carefully crept up on Augie (ignore the mess in the kitchen please - I haven't felt like picking everything up lately) and video taped him as he howled in loneliness in the living room. Now Augie was home with my brother and his dog Beans and my outside dog Bingo and the two parakeets, but to hear his howling you would think his world is ending. He does this everytime my Mom leaves the house for any length of time. He was supposed to be my dog, but I really think heart and soul he is my Mom's dog. I'm just someone who plays with him.

At about 50 seconds into the video is where you can see Augie just howling with his little head tipped back. We think he looks like Snoopy on Peanuts when he howls. My brother said he caught him in different rooms doing the same thing, including sitting and howling on my Mom's bed. When Augie noticed he was being watched, he would try to act like nothing was happening and he was just being his normal happy go lucky self. My brother said in between howling sessions Augie would position himself near a window where he could watch the road.

My pancreas pain has been better today, and I am getting past the sedating effect of the medication. Having some piercing pains tonight, but I ate more today because I felt better. The vicodin is taking the edge off, but it really isn't strong enough this evening. I guess I don't have my regimen down to perfect yet.

My boss (have I mentioned lately that I love my job??) had rescheduled my client visit last week to this week, and bless his heart decided that we could schedule it for another week later in the month. I was going to go without any pain medication tomorrow (because I'm not sure about driving so far because I already have problems with sleepiness and driving) and just bear the consequences of the pain to get the job done. I am relieved that I don't have to test my endurance this week. Some days I am not so tough as I like to think I am!

Winter Weather

Icy Winds Do Blow

1923 New Hampshire
Dust of Snow
by Robert Frost

The way a crow
Shook down on me
The dust of snow
From a hemlock tree
Has given my heart
A change of mood
And saved some part
Of a day I had rued

A snowy day, an icy night - dreaming of warm summer breezes. Still up at three in the morning, medication not much help tonight. Hoping tomorrow will be better.

I am growing more used to the pain meds, not nearly as drowsy feeling. Could use some medication drowsiness this late or early in the day. Am thinking of taking another dose so I can lay down in some comfort without The Belly interfering and sleep. The Headache is acting up tonight - may just be the weather, or it could be the new medicine. I think I am ruing tomorrow already.

A Lost Day

Pancreas Pity Party


Very sick today. Emphatically


Wishing I felt better. Definitely


Would like some energy. Hopefully


Reaction to pain. Negatively


Feeling sorry for myself. Partially

Not sure if the new pain meds are making me sick or my pancreas is making me sick. A problem, because I don't want to spend the $150 emergency room copay if I'm just making myself sick by taking new meds, but if it's my pancreas making me this sick it can be serious. I waited out today, but have been very nauseous and sick. I hurt through and through and it is becoming harder to inhale deeply because the pain goes through me and around my chest.

If tomorrow is the same or worse, I will probably make a trip to the ER. I am almost to the point I would welcome better pain management even if it means sitting in a hospital room for a couple of days. I wish I was a drinker or a smoker so at least I could have the standard pancreatitis excuse. As it is, I'm not sure why my pancreas decided to quit working other than the medications I was taking. According to what I have read, medication induced pancreatitis subsides after quitting the medication and I haven't taken any of the problem meds since May.

Hoping that this new year will be a good year. After the last two years I could use a good year, but the start of this one is about as bad as the two previous years. I feel like I'm moving in a thick fog - can't see where I'm going or where I've been just trusting that I will get through it somehow.

I'll try and get some quality sleep tonight and maybe in the morning I will wake up bright and cheery, my regular self. The pain is just getting me down today. The fight I fought against The Headache and won last year is now being waged against The Belly this year. Sigh...