Sunday, May 31, 2009

Brain Hives

Me and My Mast Cells

Read an abstract of a June 2009 article concerning new research on sterile inflammation and meningeal mast cells. Very interesting, as my ongoing headache occured after an operation in 2007 where I experienced an anaphylactic reaction to contrast material while under anesthesia. I thought The Headache was maybe due to positioning during the operation, but maybe it was the allergic reaction itself! The only medications which have helped The Headache pain have been major anti-inflammatory agents most of which I have trouble tolerating because they aggravate The Belly.

I have been diagnosed by an immunologist with having over-active mast cells, based on the multiple drug reactions and anaphylactic reactions I have experienced. Perhaps The Headache is just another manifestation of this mechanism. Since I have had problems with hive outbreaks that last for years, maybe The Headache is brain hives! I can envision the little lumpikins all over my thunker now - makes my brain itch just thinking about it. I wonder if they make brain scratchers like back scratchers???

Saturday, May 30, 2009

Bad Headache Day 29 2009

I wish I was a Steam Whistle

My blood pressure is through the roof and my head is ready to explode. I'm wish I was a steam whistle, and by pulling a cord all the pressure could just spew out of my head through my mouth as a great big WAHHH WAAAAAH. It works in cartoons!

I was able to work a couple of hours today, and actually got several things accomplished before The Headache interfered and I went home early. I've taken enough medication to normally knock me out for a few hours, but the pain was already high enough they aren't really working. I'm so used to my daily pain levels that sometimes the only way I can tell the pain is getting worse is by taking my blood pressure. It was plenty high, although I know I still have a way to go before I become the total quivering pile of jello that means a trip to the ER again. Hopefully I will get The Headache stopped before it gets to that point tonight.

This has been a bad week. I had forgotten what my life was like last year before I took indomethacin. If The Belly would just get with the program I might try taking daily indomethacin again. That's a pretty big if because The Belly is mad tonight: I ate some real food today and I didn't have my pancreatic enzymes with me. Silly Belly!

Friday, May 29, 2009

Bad Headache Day 28 2009

Another Lost Day

I think I'm going to have to try to start the indomethacin again. The constant pain is getting worse each day I am off the indomethacin, and the pain exacerbations are hitting harder and longer, and the benedryl/phenergan/trammadol combination has quit doing much of anything for the nausea or the pain.

I am sitting here blogging in the middle of the night, with a heating pad across my shoulders and neck, just waiting to see if the pain will let me sleep tonight. I have had only a few hours of sleep each night this week, and its catching up to me.

The Headache vs. The Belly - who is going to win this time? I chose medicating The Headache over The Belly before and ended up with a pretty bad bout of pancreatitis.

I have taken a couple of pills of indomethacin the last couple of weeks, but the stomach pain is so bad I don't think I will be able to tolerate it. Still haven't heard from the Cleveland Clinic as to when I will be scheduled for surgery. They have to get a predetermination from my insurance company before the study sponsor will OK paying for the surgery. *sigh*

I have an appointment next Wednesday with the oncologist to discuss my test results and what I need to do for the ongoing problem I have with pelvic pain. I had to call their office and ask what I needed to do to follow up, as they had told me in March that I would be told either to followup with my gynecologist concerning that or with the oncologist. Instead of getting instructions they just set up another appointment for me.

Whoopdido, yet another hurdle to jump through! I feel like a grand champion race horse at this point - going round and round and round the track on a never ending journey from test to test, doctor appointment to doctor appointment. I hope I am in the home stretch, I plan to win by a nose!

Monday, May 25, 2009

Passing on the Torch

I have wonderful Nieces and Nephews

This Memorial Day weekend is the third year in a row I have not been able to make the trip north to decorate graves. My mother and I made the trip every year, and go the rounds to clean up around headstones and put out flowers. This year two of my nieces stepped up and did some decoration for us. I ordered flowers for my father's grave and had them delivered to the cemetary, so my Mom felt that we showed that we remembered him.

One niece who lives nearby the cemetary called to say she was going to decorate Grandpa Jay's grave, and another niece and her husband decided to make a side trip on their weekend jaunt and visit and decorate most of the graves my mother and I generally did. I feel very relieved and grateful these kids (they are all around 30 years old so I guess they aren't kids any longer) would do this for their grandmother. Mom just doesn't have the energy she did since she had surgery for colon cancer, and I am just plain down and out this weekend, unable to do much at all.

My mother came from an extremely large family, and there are only three of them left now. This weekend is always a time to relflect on those no longer with us and value those who are still here. The gift of comfort my nieces gave their grandmother this weekend is priceless.

Sunday, May 24, 2009

Bad Headache Days 26 & 27 2009

Over the Flu, The Headache Takes Command!

Yesterday was a lost day. Between the pain and the medication, I was not able to do anything but be in pain and lie still. The pain was bad enough medication didn't really help, and the medication wasn't strong enough to put me to sleep. Today hasn't been much better.

When you are in the pit of pain, the walls are steep and dark and there are no handholds or stairs or ladders to get you out. You pray that the pit doesn't sink you deeper and deeper into pain to where you can't even see daylight anymore. Your mind becomes preoccupied with the pain, how to handle the pain, what to do for the pain, where to escape from the pain, to the point all other thoughts flee. At a certain point (for me at about 9.8 on a 10 point richter scale of pain) your body ceases to obey you, quivering and shivering and crying. The pain now commands you.

Each day you take the risk of inviting The Headache to errupt into the pain frenzy it loves. Sometimes it is just going to grocery store that opens the door to more pain, sometimes it is just driving to work, sometimes you don't even know what you have done to make The Headache wake up. Bright lights, hot weather, some odors, exercise, lack of sleep, too much sleep, hormones, lack of hormones, food, noise, stress - you name it, I can probably find a time when it has woken The Headache to full glory. I live a life of vigilance that only gives me the illusion of control. I'm really a servant to The Headache.

I'm not even sure what kind of headache The Headache is - I've gotten so many different diagnosis in the last year and a half. Status Migrainosus, chronic migraine, intractable migraine, paroxysmal hemicrania, cluster headache variant, hemicrania continua. The only one that didn't fit was medication overuse headache - and I was hospitalized by a smart alec neurologist for that because he was sure that was my problem, even told me I would have to be in hospital for 3-4 weeks. I guess their narcotic screening came up zilch and it was quickly established that was not my problem, and when all their multiple drug cocktails couldn't kill The Headache they were left scratching their heads. I never saw that neuro again - good riddance to bad rubbish!

Headache disorders seem to be difficult to treat. My primary care physician admitted it was out of his league and sent me to a neurologist. That was a total bust. It is difficult to find a neurologist who even wants to mess with headaches. They make a lot of money seeing people with other chronic issues that don't require emergency treatment or prompt followups. Headache patients take up too much time and need too much attention. I have found that many neurologists seem to throw medications with very high side effect profiles at headaches encouraging patients to take them even when their quality of life is ruined now both by the headache AND the medication.

I also found that finding a neurologist who would listen to you is a rarity. I had one tell me that she would not put me in the hospital for a treatment for acute migraine that day The Headache was in full mind numbing force because she didn't have a day off until the next week. I told her I was the one in pain here, and she told me that that was my problem. Yet another neuro I do not see any more. I did complain to her management, and I did complain to my insurance company about her. You can tell why that one became a physician - not out of a desire to help others!

I finally found a headache specialist who is in network at a hospital 200 miles away, and my insurance decided to make her out of network. Even she said that there wasn't much left medicinally for me for The Headache, but she did tell me to try getting an occipital stimulator, which is how I finally stumbled upon The Cleveland Clinic and the occipital stimulator study I am now participating in.

My family doesn't understand The Headache any better than I do. My responsibilities don't go away when the pain grows and return when the pain starts to get weaker. I have to balance doing as much as I can while the pain is at a bearable level (because it is with me 24/7 since December 2007) against aggravating The Headache and having more Bad Headache Days. The Headache generally wins any argument about what to do when, and the rest of my life has to wait.

Living with The Headache is a harsh life. When I start feeling sorry for myself, I have to remind myself there are others with worse problems and mine are just a drop in the bucket compared to theirs and to buck up and keep fighting The Headache with all I've got. Quitting is not an option, but sure seems desirable some days.

Friday, May 22, 2009

Still Sick

Tired of Being Tired

Woke up this morning determined to go to work. The Headache was roaring but I thought I can tough this out, it's not to my I can't work anymore point. I felt pretty good and had for quite a few hours. I headed into work a little late because I wanted to see if I could keep down breakfast. I got almost all the way into work (about 38 miles driven) when the nausea started up again. I pulled into work, stopped at my desk to disinfect everything I had touched, and left again with the blessing of my coworkers who had no desire to be sick on their three day weekend. I threw up my partially digested breakfast in the parking lot of a defunct restaurant I was driving by on my way back home.

I was running a fever again by the time I drove the 40 miles back home. What a waste of time and gasoline! I was so sure I was better. I am worried about my Mom because she is looking a little wan today. I'll take her to the ER tomorrow if she still doesn't feel well. I tried so hard not to expose her to whatever the heck I have.

The Headache was better this afternoon. I have noticed there are definite fluctuations of pain during the day, and still the ever present exacerbation of pain every three to four days. I am still holding out from taking the indomethacin, but am paying the price with decreased functionality and increased pain levels. The indomethacin never totally killed the pain, but it did bring it down to where I could function most days (truthfully I guess it really was just "some" days not most).

I swear my IQ is dropping as the pain increases. I think the synapses are so tied up sending pain signals my thunker signals are getting rerouted to some nether region. As I used to say when I was a stupidvisor, "let me sit down for a minute - if I not sitting on my brain I can't think!"

Besides the IQ droppage my empathy meter is hovering near zero. My tolerance tank is empty. My fatigue basket is full with new items to add to the ones already there. My fun settings are set to low. My humorometer has switched from hilarity back to tragedy. My compassion is compressed. My "why me" wattage is through the roof and I think I've got "optimist's block" where my glass has suddenly become half empty. Where did my half full part go?? And who can I blame all this on? Do they rent scapegoats by the hour?? I don't know if I could afford a full day.

Wednesday, May 20, 2009

Flowers Are Blooming

Ready for Summer!

The flowers are blooming in the yard. I love iris flowers, and have several different types and colors. Not as elaborate an assortment as my next door neighbor, who has planted iris in about every color in the rainbow.

We have had flocks of gold finches and indigo buntings feeding in the yard, with some sassy woodpeckers and nuthatches thrown in. A very shy pileated woodpecker is in the woods back of the house, and occassionally lands close enough we can watch him through binoculars. We also have our usual flocks of cardinals, orioles, and blue jays.

I hope the same mamma deer that has had her fawns in years past in the hollow behind the big brush pile comes back this year, and has another cute baby. Last year she and her fawn ate all my green beans from the garden, but they were so interesting to watch I was glad to sacrifice the beans. In the fall we sometimes get little herds of deer moving through the back acres, and they will come up and drink the water from the outside dog dish.

We have a fat groundhog living in the brush pile, and I see about six cottontailed bunnies every morning being herded by my old border collie mix doggie Bingo. She doesn't kill them, she just very gently moves them away from the garden area.

Grey and red foxes run in the woods at night yipping away, and coyotes run in the field across from the house. The raccoons play over there at night; we can hear them "talking" to each other from the house. I saw a weasel last year, but no sightings so far this year. Weasels are shy and hard to sight because they are sooooo quick and low to the ground.

The annual turtle exodus has not started so no box turtles in the yard. I see armadillos in the area, but Bingo herds them away from the yard. For some reason she does not like armadillos. When I moved here 23 years ago, there were no armadillos - they have moved in recently and are quite the diggers. If I find one, I catch it in a garbage can and relocate it down at the creek where it can dig to its hearts content and bother no one.

No sightings of copperheads yet and I hope not to see any. I don't mind friendly snakes like bull snakes or black snakes or garter snakes, but I draw the line at deadly vipers.

I am relaxing on a beautiful spring evening, glad to be feeling better. I think I am over the flu or whatever I had. It was nasty and I got awfully dehydrated, and my blood sugar got way out of whack, but I'm rehydrated now and tomorrow should be a work day!!! Yeah! The Headache is still with me - I was irrationally hoping it would disappear with the flu. :( I'm thinking maybe Joe Biden was right - avoid public transport if you want to avoid catching what's going around. My fellow travelers shared a little too much with me. I just hope I haven't passed it on to someone else.

Monday, May 18, 2009

Surviving the Flying Petri Dish

I Hate Flying with a Bunch of Coughers

I have been sick all weekend. The Headache has not been cooperative, and I have hives, AND I finally figured out I was sick - as in ill. I feel like I've been beat with a stick, with sore throat, fever, nausea. Just slept and slept and slept!

I flew back from Cleveland last Thursday via Memphis. The plane from Memphis to here was full of coughers. I hate flying with people who cough and don't cover their mouths! You can't tell if they are sick or not, yet you must breath some of the same air in tight quarters. Everytime I fly with a bunch of coughing sneezers I seem to catch something. The airlines tell you they sterilize the recirculated air at high altitudes with cold, but what about the air you are breathing from the sick person sitting right next to you??

The Headache makes me hypersensitive to smell, and I couldn't tell if the gal sitting next to me just smelled like ick because she was coming off a vacation drunk, or because she couldn't keep anything down. She tried to keep turned away from me, but I think I caught it anyway. She was moaning off and on through the flight, and again - coulnn't tell if it was the flight (we had a lot of turbulance) or if she was sick. Based on my experience this last weekend she was sick. I hope I don't pass it on to anyone else!

Since a lot of the people on the flight were returning from a cruise or some such thing, you wonder what communal disease they were sharing from the petri dish they just came from!

Didn't work last Friday, didn't work today, and the weekend was a total bust. My fever seemed to break this morning, so I hope I am not contagious. I definitely don't want to bring this into work. Will go to work tomorrow!

Saturday, May 16, 2009

Itchy and Scratchy- That's Me!

Hives are no fun

Bad day, bad night. It seems that removing the stimulator and healing is causing some awful burning at the back of my neck and head. The Headache just continues unabated.

I slept most of Friday away. My mother told me she called into work for me (Yeah Mom!). For me the day is a pain filled sleepy headed blur. In addition to The Headache, The Belly is trying to get riled up probably because I have eaten some real food in the last week. I am broken out in fine hives in various spots from head to toe so I'm itchy and scatchy too!

Not sure what is causing the hives. It could be the trammadol or it could be the clindomycin I am taking/finishing up because of the implant trial. I hive pretty easily and carry an epipen with me because I have anaphylactic reactions at times. Hoping these go away in a few days since I have had some bouts last months and months.

I am going to have to start taking the indomethacin again as the pain just keeps growing and growing. I wish there was some kind of alternative effective medication. I've been taking the megadoses of B12 vitamins again. Those did help just a tad last summer but haven't noticed a difference yet.

We have some new birds coming to our yard birdfeeder. A flock of goldfinches has been stopping by, and a rose breasted grosbeak is snacking on the sunflower seeds. We have some indigo buntings and of course mamma and pappa cardinals. It's a colorful bunch this year!

The squirrels have been sneaking bites at the feeder when the birds let them. I prefer the smaller grey squirrels but the red ones are sassier. My fierce dogs try to chase one up a tree now and then, just for appearences sake, but the squirrels aren't very scared. I also have a flock of cottontail bunnies that are wanting to eat the garden up. My outdoor dog Bingo has been herding them away every morning.

Just a few miles away is Marrionville the town that has a bunch of white squirrels. The white squirrels pretty well just stay in town getting lots of treats from the residences. I have been to Marysville Kansas and they baby their pretty black squirrels just as much as Marrionville does their white squirrels!

Friday, May 15, 2009

I've Got Hives

My Brain Needs Flossing

The Headache is wanting to kick up a fit this evening. I'm trying to go without indomethacin because The Belly is feeling so much better with a week's vacation from it, but I'm not sure if I can. I have some dilaudid as a rescue medication and am debating if I should take it or not. Delay too long and I can't keep it down yet it is so strong I hate to be knocked out for so many hours!

I had to turn off all lights in my light box of an office today. I practiced my biofeedback techniques and tried to conjure up the electrical feeling I had last week to get past The Headache today, but no go. Only got a few hours of work done. It must be fluorescent lighting week - one blogger was complaining about lights at work, another was posting about light covers for the compact fluorescents, and that reminded me of research I did several years ago for ergonomic light restriction when I supervised a crew that ranged from 30 to 75 persons over several shifts. I quickly googled fluorescent filters and found this site (I am sure there are more out there): They aren't too expensive, and maybe I will get myself a few to knock down the glare. The light only bothers me when The Headache is misbehaving but that's quite a bit of the time!

Hard day today mood wise also. I strive to build empathy for others and if you have ever worked in the IT industry you would know that empathy for others can be in short supply. If your work's primary function is to be logical, empathy does not necessarily compute. Today was a struggle for me because I was in pain and the urge say "stupid user" as an explanation for everything is always there. Stupid user, stupid associate, stupid checker at grocery store, stupid doctors, stupid headache - stupid me. I was able to discern my over-reaction to others and I decided to go sunny side up, seized control of my mood and got past my own stupidity to work with my clients and coworkers in a positive and outgoing manner.

I wonder if ongoing pain removes your funny bone - a funny bone-ectomy?? Sometimes when the pain gets really bad I almost lose my sense of humor, but I find it again. I'm afraid one of these days it will get lost in the pit of pain and then I will be bitter grumpy and mean forever.

I guess until then send in the circus wagon and I'll keep clowning around. Maybe I'll buy some brain floss and clear out my head!

Wednesday, May 13, 2009

Home Again!

No Rechargeable Battery for Me

Back from Cleveland, with no wires in my head. The trial lead was easy to remove, and it only took a few minutes. I was surprised at how long the piece they had implanted was - about three inches long. Didn't feel like that under my skin!

I talked with the study representative and with the P.A. who removed the lead about my trial experience. I did find out I AM eligible for surgery, that the trial was considered successful, and I WON'T get a rechargeable battery implant. :( At the beginning of the trial I was told that I could be given one of six models of implants, but the implant study rep said, no there was only one model. That seems much more scientifically valid, with less variability. She just didn't say what model!! I guess that's why the study guarantees lifetime replacement surgery for the batteries for its participants.

Got a great cabbie in Cleveland. He charges a flat rate from the airport region to the Clinic, or vice versa. Since I was in no hurry to get back to the airport and the meter wasn't running, he took me on a quick scenic tour on the way back. We drove through a park built in the late 1800's - a curving greenway with sculpture gardens all through it. I found out that the Rockefeller family came from Cleveland and that Bob Hope was from Cleveland. I haven't fact checked the cabbie, so I am just repeating the tour monologue!!! I'm keeping his number for the next trip!

Turbulent flying on the way home. I tried to switch to an earlier flight but they were booked up. For some reason, every time I fly into Memphis there is a great deal of turbulance right at the airport. Is it me, or is it Memphis?

The Headache is pretty strong this evening, as I had to drive from the airport to home and didn't dare medicate too much. I'm planning on working a full day tomorrow if I can! It's sticky and humid and hot so I've turned up the air at home so The Headache won't get worse.

Monday, May 11, 2009

Back to Cleveland

At Least the NBA Playoffs are Away this week

I'm not a follower of professional or college basketball, although most of the guys at work are, so I was surprised last week when all the flights were overbooked to and from Cleveland. A taxi driver had to tell me that the NBA playoffs were going on, and that the Cavaliers were on a winning streak. So back again I go, but the Cavaliers are playing in Atlanta I think this week, so the plane rides should be a little less crowded (I hope!).

I talked with the study coordinator and she asked that I think about when to have the surgery. I told her - at the earliest opportunity! No telling what that date will be. I fly out tomorrow (luckily got a cheap local flight so no drive to/from St. Louis!) very early and fly back Wednesday in the evening. Wednesday morning I have to be at the Cleveland Clinic to fill out what I think is their on-line general anesthesia questionnaire, and then have an appointment at 2:00 to have my stimulator pulled out by the roots.

My hair is getting icky - I want to wash it sooooooooooo badly. It is getting flatter and flatter and flatter every day. I bought some waterless shampoo type things at the local drug store and am debating about trying one. I don't know if it will just make my hair yet flatter and skankier! eeeeeeew Yuck!!!!

Today I turned on the stimulator whether I was supposed to or not: I wanted to give it a drug free try out at work. Not as good a result as I had at home, probably because I was much more active and also was overdue for a bad day on my own headache cycle. I could turn up the voltage and I could ignore The Headache - not sure if it covered up the pain or just allowed me to focus past it, but the minute I let the voltage drop The Headache was back. The Headache has stalled out at about a 7 to 8 on my personal headache scale which is good - generally it would just keep going on up to a 10 and an ER visit! I will be medicating in some form tonight

My bosses are so nice about the absences - we are gearing up for several installs/projects and they really need my man hours but are being patient about the "I don't know" factor of this.

I'm going by myself this time. I was told there was no need for a "companion" to accompany me for removal of the stimulator trial. Personally, I would have taxis and planes - don't have to drive even when you go by yourself but I guess they want someone there if something goes wrong????

With my luck the timing of the surgery will be during the NBA finals with The Cavaliers playing in Cleveland and it will be extremely costly to have two people there and I won't be able to book a flight. I guess I can always drive!

Sunday, May 10, 2009

I've Been Sneaking Voltage

Shhhhhh - Don't Tell!

The official trial of the implant was supposed to be over last night, and I guess I was supposed to disconnect everything. But I have to confess I have been sneaking me some voltage today. I haven't been doing heavy duty voltage like all day like yesterday, but it was Mother's Day, and my sister had a lovely shindig at her house for our Mom, and I wanted to go and not have to worry about The Headache.

The Headache is still ever present. I turn down the voltage, turn off the machine and The Headache pops right back up. If the machine is off too much, The Headache goes back to its old tricks and starts hopping up the pain scale. I am going to be very sad Wednesday when they remove this dealybob of an occipital stimulator. I actually read the manual and was able to turn the average gain up on certain settings and ones that didn't work day 1 started to work when I had the amperage hiked.

The best part - my medication usage has been waaaaaay down, and my pain levels (still spiking throughout the day) seem to be under my control for once. Biofeedback didn't give me that, accupuncture didn't give me that, medication didn't give me that, chiropractic treatment didn't give me that, massage therapy didn't give me that, nor did nerve blocks or trigger point injections. Two hospitalizations and uncounted emergency room visits didn't give me that. Thank heaven for electricity!! Thank heaven for the stimulator trial!! Thank heaven for St. Jude Medical!!! Thank heaven for Cleveland Clinic!!! And most of all Thank Heaven for Dr. Mekhail and the Pain Management Department, because without he and his crew deciding I was a candidate for this trial I wouldn't have been able to afford this device.

I've done all this thanking ahead of time and may still be premature. I am hoping that I will be a candidate for surgery. That is still up to the study sponsors. I hope my insurance company cooperates some with the surgical expense, but they have basically told me that this is considered investigational and they will not pay.

I also hope that I am just not wanting help so badly that I am imagining the results. When you have been in pain long enough sometimes you grasp at straws, and although I have been in pain a lot shorter period than some folks its been plenty long enough. I have tried to be extremely careful with myself - letting The Headache take over and then trying to knock it back with the stimulator and then turning the stimulator off to see if the pain comes back - to eliminate wishful thinking. I also did some activities I knew would wake The Headache and then tried the stimulator during the activity to see if it would make any difference, then turned it off to see if The Headache was still there. I'll have the say this, The Headache is extremely persistant! As objectively as I can be, I think the stimulator is doing the job.

One of the strangest side effects is I have been dreaming a lot. I suspect I have not been hitting REM sleep as often as I should because The Headache likes to wake me up at night or not let me sleep until exhausted. Perhaps the amount of medication I was taking was changing my sleep cycles also. I guess its like the title of the Philip K. Dick novel - Do Androids Dream of Electric Sheep? : Do Electronic Stimulator Users Dream of Electric Zaps??

There is a blog of another headache sufferer that tried the trial and convinced herself that it did work when it didn't. The surgery was a great disappointment to her, and reading of her experience I definitely have tried to be objective. For me there has to be a good reason for going under general anesthesia. If The Headache quit tomorrow I would be grateful, but realistically I don't think it is going to do that.

The stimulator doesn't kill all the pain. The stimulator doesn't cure The Headache. If The Headache decided to go full force, I think I would still end up in the emergency room even with the stimulator. What I want would be less medication, fewer exacerbations, and a reduction of my overall pain levels. If I can accomplish those three goals I would be very grateful.

Saturday, May 9, 2009

Stimulator Works but Headache Still There

No Indomethacin for Four Days!!!

I think I'm going to be a candidate for surgery. The study coordinator called yesterday to see how I was doing. I told her that the stimulator seems to be 60% to 70% effective. I have had to use some trammadol, phenergan, and Benedryl but not like I have had to in the past, but I have used no indomethacin for four days. The Belly is starting to recover already. Yeah!

I had planned on going to work yesterday, but tornados ripped through our area just as I was planning to leave the house, and work had no electricity. I was fortunate because I recognized the warning signs - ominous purple sky, still silence and intense greens in the landscape and didn't start out on my 45 minute commute. I associate the intensity of the green with the amount of hail in the clouds, and the amount of hail with the possibility of tornados! The day before had been very warm, and when hail drops in quantity it gets cold very fast and tornado rotation starts with the cold air pushing the lighter hot air in front of a fast moving storm. We didn't get a tornado, but one hit just a few miles down the road, and we got terrible straight line winds for several hours. Trucks were blown over on the interstate and it generally wasn't good driving conditions that morning.

I took a nap at noon to early afternoon. For some reason I seem to be sooooo tired with the stimulator on. It may be because I am sleeping very deeply, even dreaming, and not waking up in pain in the middle of the night! I tried grocery shopping in the early evening. Physical exertion is still making The Headache ramp up, but I was able to turn up the juice on the stimulator and partially short circuit it. I had to take some medication later, but The Headache had stopped at an eight and hadn't gone any further.

I find that the most effective settings stimulate the branch of the occipital nerve that circles the side of my head and the ear. After quite a while on high settings I do have to change the program because it seems to fatigue that area and doesn't work so well. After a few hours I can change it back and it does great again. I wish I had a setting that could stimulate the branch that goes up by the center of your head in the back, but none of them seem to hit that one. The coordinator said that the permanent implant will have more complete programming. I only have one lead and they can have two so maybe they could use a second lead???

There is quite a bit of difference in how I am positioning my head/neck as to the degree I can feel the stimulator work. The coordinator said that this gets better with the permanent implant. I am putting on the picture of the battery implant I WISH I get. It is rechargeable and very small. I was told at the beginning of the study that there were 5 or 6 stimulators that could be used, so no telling which one I will get. Rechargeable would be great because that means you don't have to endure battery replacement surgery as often.

I hope hope hope that I don't get the "dud" stimulator (1 out of 3 implants in the study are turned off or just not a working stimulator for the first three months after implant). All stimulators get turned on after the third month, but I have a big work project I am trying to gear up for that will be impossible if I keep going like I am. My luck is that I will get a dud. In reality that means that someone else who is suffering gets a good one, so if I get a bogus stimulator I will try to endure by being happy for the unknown person(s) who got the working ones!

Another silver lined cloud - I haven't heard anything from the oncologist about my MRI's. In my experience you get told bad news very quickly, but good news comes very slowly. Slow is good, no cancer is good (with endometrial cancer you are almost considered cured at 5 years cancer free).

Thursday, May 7, 2009

I'm Wired!!! (Only temporarily)

The Trial has started!

Yesterday had my "wiring" installed. Got home in the wee hours of the morning today. Still working with the 7 programs that were installed. Some work much better than others, and some eat up more battery than others. The picture is of the control unit where programming is done for different uses of the stimulator lead. The white wire is connected to a smaller lead wire which is installed under the skin at the back of my head (where the occipital nerve is located)

I have not taken any indomethacin for the last 36 hours. I have a noticeable headache, but it's not at the point I feel I have to medicate. Some of the programs actually seem to knock The Headache back several notches. I am having some post surgical pain, but it really is just an annoyance at this time. Yesterday I took some medication for the pain, but today I haven't.

The settings that seem to help me the most are the ones that seem to stimulate the nerve branches that go towards my ear and the top of my head. Ones that go down my neck don't seem to do anything at all except make my neck tingle. There is one that doesn't seem to do anything even tingle. I can tell differences in the angle I hold my head as to the degree of tingle or snapping/tingle I am getting besides the intensity level I have set on the stimulator.

If you have used a tens unit or muscle stimulator the feeling is very similar, but less "surface" sensation.

The stimulator representatives said the study has shown so far that you should try to use it as much as possible - preferrably 24 hours a day. Since The Headache is there 24 hours a day I have no problem with this. I used it all night and had no problem sleeping.

I am including a picture of the dressing on the back of my neck. This is kinda yucky looking and the tape is sticking to my hair that hasn't been shaved off.

I was supposed to get a "get out of being patted down at the airport" free card saying I had an implant, but I think they forgot to give it to me. I have instructions on how to use the stimulator and I have a card from the stimulator rep, but I ended up having to be patted and swiped down at the airport just to make sure I wasn't a crazy terrorist. At least they checked! I am not looking forward to the return trip but will just allow extra time for pat down.

I didn't make it to work today because I got home way too late. I didn't go to sleep until around 4 AM. I feel frisky enough to go tomorrow though!!

The connection from the stimulator to the leads is kinda flimsy and has already disconnected 2 times - once on the plane going back to my seat on boarding (got caught on someone's stuff and disconnected) and once at home where my puppy jumped up to see me and got tangled. It wasn't hard to put back.

I am going through batteries (9 volts) but the reps warned me of this. They also asked if there was any precipitating event to make The Headache start, and I said yes, it was a week after I had an ERCP under general anesthesia. They didn't seem surprised. Hmmm, wonder if that is a factor that should be studied.

Saturday, May 2, 2009

I've Consulted the Magic 8 Ball

MRI Jitters

My doctor had appealed Anthem's decision to not authorize a PET scan, I followed up this week with Anthem since the appeal was mailed to them April 2nd. The appeal is nowhere to be found. I had a denial of an appeal letter sent to me, but it could have been from the peer to peer review. I left voice mail with the appeal department and no-one ever got back with me. I talked to customer service and they didn't know what to do. I spoke with radiology precertification and they couldn't find it. No one at Anthem could tell me what the denial of appeal letter was denying - the peer to peer appeal, or the doctor's appeal. I think the appeal got sucked down into that giant black hole where all unpaid claims go.

I then called my oncologist because my GI doc had already ordered and completed an abdominal MRI because of the pancreatitis. I was hoping I wouldn't have to have any more testing and they could use this instead of a PET scan. They would use it, but I then needed to have a pelvis scan. I had that done yesterday. I had a tremendous headache but I got my brother to go with me to the MRI center so someone could drive.

Got the pelvic MRI done, and now the MRI center has called me asking me to come in first thing Monday (like 6:30 AM) to have some additional studies done by the request of the radiologist. When you have had cancer just having the radiologist need extra studies is anxiety provoking. I am trying to not panic (Serenity Now!) and have consulted the Magic 8 Ball on the internet, and the answer was encouraging.

The Headache is fairly bad today. I delayed taking some medication so I could make sure I could fill in at work for a gal who is off today. I'm paying for that delay this evening. I am sure that hearing from the MRI folks this evening is helping The Headache along. I threw up twice at work and there is nothing worse than puking in a toilet that your co-workers asses have been sitting on. That alone makes me nauseous thinking about it - and I'm full of phenergan!

The Belly is complaining also. It didn't like emptying in the work toilet either!

I am resolving not to obsess about the new studies at the MRI center. What will be will be, and what is already is, and worrying about things that may never happen is counter productive.

In one of the internet groups I belong to someone with the same headache type as I have said a combination of drugs is finally working for her - time release morphine and baclofen and parafon forte. She said her headache specialist thought that the baclofen and parafon forte would change the brain reaction to pain (sorta short circuit it) and it seems to be doing the job. She is young and has had this headache for years and years. I'm so happy she found some combination to help the pain!