Thanks to the nudge from dogs_n_rodents , I am finally completing an update that is long overdue. I have thought many times about writing and have even written bits and pieces about what has been going on for the last several months in my life. The truth of the matter is, I have been physically unable to write for the last several months. I have been continuing to work at my job as much as possible, but have had to take at least 200 hours of leave from work within the last year. Many other things in my life, including the typical acts that I perform as a mother and wife have been neglected. I have spent every lunch hour for the last nine months in bed resting and/or napping in an attempt to escape pain or relieve it temporarily. I have spent many, many hours after work lying either on the couch or in bed...... unable to interact with my family or complete my typical responsibilities of cooking dinner and other household chores. I have given up driving except for the drive to work and back which is only two blocks from my home. I don't even go grocery shopping alone. The reason.... I have had debilitating headaches that have been unrelenting-- daily--- since October of 2009 from the moment of waking in the morning until I go to sleep at night. (Actually the headaches started as three times a week or so and moved to a daily thing around January 2010). Even sleep has been unachievable without medication to help induce it. Pain has been inescapable except with the use of narcotics(although many other medications and remedies have been tried). I have rarely had an hour of more free of pain in this year without being medicated. Even with medication, I rarely reach a moment that is entirely pain free. Rather, I have moments(and sections of days) that are bearable. I have always had some headaches.... some debilitating headaches, but nothing this frequent or unrelenting. If you saw me in person during this time, you may not have been able to see the pain in my face, but I assure you, it was there. I have gotten really good at hiding/masking it.
I am not recording this entry for sympathy, but rather as a record to myself of what has actually happened over the course of this year so that I will have a place to go back and see the numbers in black and white. This entry is to help bring some order to the chaos of my life over the last several months. Hopefully this entry, just the act of writing it and that I am able to sit up, stare at the computer and compose this entry means that I am on the path back to being headache free. At this point, I don't even hope for a pain free existence, but just less pain on fewer days and what my husband and I refer to as "being more like a human again".
Here is a list I have of the procedures, doctor's visits, medications, etc that I have undergone in the last 12 months:
17 doctor's office visits
with 3 different neurologists, an eye doctor and a neurosurgeon.
36 medication prescriptions filled
38 doses of self-injected subcutaneous pain medication
8 small vials of pain medication dosed via nasal spray
1 outpatient visits for IV pain medication
2 ER visits for IV pain medication
5 days of hospitalization for IV pain medication and demerol PCA pump
6 days-- 8 hours each day of IV chemo-type medication given to work on brain chemistry to try to break the cycle of headaches
3 occipital nerve blocks(needles inject lidocaine and steroids directly into nerves in the head)
8 visits (or so) to a chiropractor
2 CT scans
X- rays of the head, neck, chest and abdomen
1 split lamp eye exam
1 radiographic guided spinal tap
$500.00 copays for medications-- would be much more without insurance
$1060.00 copays for doctors office visits and testing- again, would be much more without GREAT insurance
All the doctors and testing revealed nothing unusual (except a previously diagnosed case of mild hydrocephalus for which I was fitted with a VP shunt as a child). They all diagnosed migraines and tried multiple medications to help them. At first, some of the medication seemed to help some. Recently (within the last six months of so, at least) the medications led to more and more word finding difficulties and fogginess and no real pain control. I began having more difficulty with nausea and lost about 20 pounds from not being able to stand the thought of food. I started seeing a chiropractor who helped, of all things, my appetite, but not the headaches. The headache specialist recommended a round of chemotherapy-like medication that works on brain chemistry to stop the cycle of headaches, since no other medication seemed to be working. I spent 6 long days in his office getting the IV therapy. On the last day of the therapy, he reviewed my CT scans from June again and immediately referred me to a neurosurgeon. The neurosurgeon finally had an MRI completed to see if the CT scans missed anything. He found small areas of bloods clots on my brain. Technically, subdural hematomas. He thinks there was bleeding at one time, but the bleeding has stopped now. He feels the blood clots may have been there since the beginning of the headaches. If the blood clots were more acute or larger, they would have to be surgically removed immediately. Since they aren't, the plan is the monitor their appearance with another MRI in three months. At which point, they will hopefully be improving on their own (which is a possibility) or may need surgery to remove at that point. The more sypmtomatic I am, the more likely surgery will be necessary. Ironically, I have had some good days since the diagnosis. I don't know if I have some type of relief from knowing what the problem is, if the IV chemo meds are helping, or if it was just time to stop having so much pain. Either way, I welcome the good days with open arms, and try to deal with the bad ones the best I can. I stopped taking the medication that was causing the word finding problems(Topamax) and am now on a similar medication (Zonegran) that should help reduce migraine and seizure tendencies.( I have never had a seizure, but the bleed increases my risk.) I am also on Verapamil that is a heart medication, but is also used in migraine patients in which traditional migraine medications fail. I still have to take something to help me sleep at night, but hope this will not be needed once the pain is better. I truly feel that I am on the right path now toward being a whole person again. I hope to be back to journaling frequently soon. I have so many stories to tell.