Thursday, December 31, 2009

Pancreas Pain Persists


One Year Blog Anniversary

Tomorrow is the one year anniversary of this blog. When I started this, I didn't know if I would keep it up since The Headache was still going strong. In January 2009 I had 10 "Bad Headache" days, which meant either major pain medication taken or visits to the emergency room or both. I anticipate having none in January 2010. What a difference a year makes!

The magic of the occipital stimulator has made a huge difference in The Headache intensity. The overall pain level at the end of six months post implant is minimal. I use the stimulator 24 hours a day seven days a week and I don't even notice it is on most of the time. The daily pain is still there, though becoming inconsequential, and some of the autonomic symptoms are still there but the nerve searing brain exploding type of pain is dissolving into a smokey veil of memory. I haven't had a really bad headache day since November, a record for me in the last two years! I don't know how effective a stimulator would be for a migraine disorder, but it seems to be a miracle pallative for hemicrania continua.

While The Headache is much abated, The Belly pain I was experiencing at the inception of this blog is worse. Today I went to my PCP and got a script for time released trammadol and vicodin. He said to give it a few weeks, and we may have to step up the medication again if it isn't sufficient. Dr. Gnomes office said there were three treatment modalities to use for chronic pancreatitis: 1) low fat diet 2) digestive enzymes and 3) pain medication. Surgical intervention either through ERCP or other surgical procedures are warranted if the pain persists despite the three steps. I want to avoid surgery if at all possible.

My pancreas pain is definitely persistant. Tonight I almost headed to the ER because The Belly pain is so bad. I'm not sure if I am not responding well to the new medication combo, or if I just need to go and sit for a few days on an IV drip and heavy duty pain meds in a hospital because I waited too long to see the doctor. As long as I am semi-sitting up and kinda crunched over on my right side and stay very very very still its bearable, but just barely. The nausea is pretty bad also. If it wasn't New Year's Eve and an ER nightmare night I probably would have gone. I'm gonna see how it pans out tomorrow and see where I need to go from there. I just don't have a lot of pain tolerance left in me - The Headache made sure of that.

Wishing all a great new year with hopes for pain free happiness for everyone!

Tuesday, December 29, 2009

Tired and Mouse Infested


But At Least I Don't Have Skunks

Today only worked a few hours, and had to decide not to go to my scheduled training session at a client's. It's very disappointing, but I just am not able to suck it up today to go tomorrow (which is today now I guess!).

I'm feeling very very tired, yet I'm unable to sit still because I am very definitely having Belly issues which include pain. That Belly is just a nuisance lately. Maybe I should just get a food magazine and stare at pictures of food and just imagine I was eating something. Eating isn't getting me much except pain, so maybe imaginary eating would just give me imaginary pain!

I heard back from Dr. Gnomes office about my blood test for autoimmune pancreatitis. I officially don't have autoimmune pancreatitis, just stinky old uncurable chronic pancreatitis. Their suggestion (since I did not want to take time off for another ERCP) is to keep eating a low fat diet and taking pain medication. If it gets where I can't bear the pain or feel much worse then I need to schedule another ERCP, although they recommended I have one now.

I am not eager to repeat the ERCP process since I had such a bad allergic reaction last time to the dye they use for the fluoroscope during the ERCP. I'm not sure what another ERCP would accomplish, unless they would stint the pancreatic duct. I don't want the down time for an ERCP either - last time it was a week in the hospital and a week to recover and I came out of the procedure with The Headache so heaven knows what I would come out with this time.

My pain control at this time is inadequate. I am in pain most of the time, and especially bad at night. The perscription for trammadol was just for occassional use, not for the dosages I am taking every day. I made an appointment with my PCP for Thursday morning to see if I can find some other alternative to what I am doing now. If I could get trammadol in time release form (I know they make that) it might give me better control of overall pain.

The Headache is acting up today, and of all things I got pins and needles all down my right side today. It lasted about 15 minutes and is the opposite side from The Headache so would be the side controlled by that portion of the brain. I wonder if its just another new manifestation of The Headache just like the scintillating scotoma I had the other day. I am having more right sided head pain again also. I'm afraid that my trammadol might be creating a drug headache, but it could also be The Headache morphing into something else less noxious. That would be great, so I'm going to keep that thought foremost!

I heard Mr. Mouse again last night. Augie my dachshund mole hunter extraordinaire is ignoring Mr. Mouse. I think he has made some kind of deal with Mr. Mouse not to catch him just like Garfield the Cat in the comics. My sister with the ongoing skunk issue gave me a new insight into my mouse problem - at least I don't have skunks mating and living under my house. She is running a skunk bordello if you can judge by the amount of wild skunk loving you can hear under her office floor! Mr. Mouse is quiet and does not seem to be smelly, so that's a plus. And he doesn't appear to have any visitors which is also an improvement on the skunks.

Sunday, December 27, 2009

Mouse Hunt


Howling at the Moon

I have a mouse in my house. My Wilsy cat has been gone a few weeks, and already the mouse invasion has started. I don't sleep much these days because I hurt quite a bit, and the rest of the night I have been sleeping with my light on because of THE MOUSE. I feel like a predator just laying in wait for the mouse to show himself so I can sock him with a shoe and pop him outside.

Before I go to bed I say outloud to Mr. Mouse: Please don't hop up and run over me in the night... I'm not sure if he hears me, but he's somewhere around. I hear him in the wee hours making a sort of indeterminate scratching sound that I can't get a direction from hearing it to find out his hiding place. Probably knows I'm lurking out there like a wolf in human clothing with a boot ready to smack him flat.

I saw Mr. Mouse today - a brown mouse that hopped from a hiding place so quick I couldn't track where he went. I hate to trap the little fat fellow, but I don't want filthy mouse leavings in my house either. I feel like scrubbing every item in every drawer and every surface the mouse could have possibly touched.

I'm not afraid of mouseys, just don't like the way they hop about and run - very startling. I'm thinking of borrowing my brothers big yellow cat for a day or two to see if he can drive the mousey away. My brother put out a couple of glue traps to see if he can catch the crafty critter. He is a mighty mouse hunter kind of like Christopher Walken in the Mouse Hunt Movie.

At least the mouse is distracting me from The Belly. I got a good loud screetch out today when Mr. Mouse leaped out and hopped about a bit. I can still remember my grandmother jumping up in a chair because of a mouse. I never knew she was so nimble and could move that fast! I must take after her - mouse motivational movement.

Thursday, December 24, 2009

Merry Christmas and Happy New Year

Caution - this is a new application I tried this year for my Christmas Greetings, I found it takes quite a while to load. Sigh...a fitting end for the year!


Click to play this Smilebox greeting: Christmas 2009 From Emily
Create your own greeting - Powered by Smilebox

Tuesday, December 22, 2009

Saccharomyces Cerevisiae Antibodies


Yeast Antibodies and Migraine

I was researching some of the odd antibody tests that Dr. Gnome ran to see if I had autoimmune pancreatitis. A couple of tests were for immune responses to saccharomyces cerevisiae (IgG and IgA) a type of yeast known as brewers or bakers yeast - a factor in some inflammatory bowel conditions. One of the references I found stated that

A study reported over 2 decades ago that 33% of a group of patients with migraine were hypersensitive to Yeast.
Grant ECG. Food allergies and migraine. Lancet 1979;1:966-968

I also found other references to some persons having adverse headache reactions to nutritional supplementation of brewers yeast. In addition to supplementation some B vitamins have brewers yeast as a component, and I have known a couple of migraineurs complain about reactions to vitamins. Could this be a possible link?

This yeast can also be found in fermented products such as wines, cheeses, and vinegars. These substances have widely documented correlations to migraine exacerbation. It is also an ingredient in many baked foods and cured or aged meat products like sausages.

The immune response is development of antibodies to this common food ingredient, not from the opportunistic overgrowth of the yeast in the body. The research article states there is debate whether elimination of yeasts from the diet assists in reducing the immune response.

I have measurable amounts of both types of antibodies in my blood but not exceptionally high - if I was not already taking a mild immunosuppressant would there have been higher levels? This is the first time in my life I have been tested for this so it probably has been there for quite a while. I wonder if it could have been a factor in my almost thirty years of migraines?

I guess I'm still searching for the unified field theory for my overall unwellness and major headaches. My mind goes down these paths which are probably just dead ends, but it does make for an interesting evening of intellectual investigation. Maybe I will try an elimination diet of foods that use Saccharomyces Cerevisiae and see how it works. Maybe it will help The Belly and The Headache at the same time. Could I be so lucky?? I'm not eating much at the present anyhoo so eliminating a few more condiments/foods won't make a lot of difference!

Sunday, December 20, 2009

I Have Kaleidoscope Eyes


Scintillating Scotoma

For the second time in my life I have experienced a scintillating scotoma. This is a spreading writhing twisting spinning moving area in your vision that can be an ocular migraine or an aura for a regular migraine. It is very trippy but also very weird. It blots out or covers an area of your vision - for me it was in both eyes. It reminds me of the after image you get after staring at a light for too long, but it moves - for me it was in a counter clockwise direction.

I have friends who have migraines with aura that always see scotomas, but with almost thirty years of migraines I never experienced one until I had The Headache, and was put on Topamax. While still titrating up on the Topamax, one weekend I had an entire day of scintillating scotomas PLUS the added benefit of double vision and seeing trails of colors following anything that moved. Very beautiful and very disturbing. The neuro who put me on Topamax said to quit taking the Topamax, as in addition to the vision disturbances I was experiencing extreme eye pain and had very bad balance issues and was in brainless jabberbox mode. It didn't do squat for The Headache either. Hemicrania Continua just doesn't respond all that well to drugs that help migraines, which is not a good thing.

That was in February 2008. This is December 2009 and I have just had my second episode. This didn't last as long as the ones I had when taking Topamax, just a tad over an hour. I have waited to see if I will get a bad headache from this but so far so good. I have not been taking any new medications, and though The Belly has me under the weather other wise The Headache has been behaving itself. Not sure what to make of this. My left eye that is effected byThe Headache feels kinda strange - not focusing correctly. I have to drive to a client tomorrow to do more training, and hope the scotoma stays away and my eye behaves itself. No time for medical emergencies tonight or tomorrow!

I did turn up the occipital stimulator and put it on a different program to see if that would be prophylactic for a possible migraine.

Not sure what I will be able to do for Christmas. The Belly is trying to bring me down, but I'm fighting back! I have done no Christmas shopping whatsoever. If The Belly has its way there will be none done this year. Part of my enjoyment of the holiday is shopping for others, so this is the most disappointing part of feeling poorly. I have learned in the past couple of years to let go of what can't be helped and move on, so I am not worrying about it. People in my family and my friends understand. Maybe I will feel better by Christmas Eve day and do some last minute shopping.

Just too tired to care about anything but staying out of the hospital at this point. I'm trying to hold it together for work because as usual we are understaffed going into a major install. The new positions haven't been filled yet, and they won't be trained or up to speed for some time after they start.



Saturday, December 19, 2009

Good Day Bad Night


Stomach Stress

Worked a full day today and then some, have another client visit Monday to train. Needed to prep my materials, print the handouts, setup examples in the training database to train on - a pretty full day in normal circumstances. So today was complicated with an unplanned meeting, helping a coworker out with a problem, and a large support issue that was almost impossible to complete because the secure vpn connection I needed kept going down. AUUUGH!

Maybe that's why The Belly and The Headache are going gangbusters tonight. Despite taking anti-nausea medication I have been tossing my cookies (quite literally - I actually ate a cookie at Christmas desert day at work!). My hives are breaking out big time to boot in spite of taking antihistimines to decrease them. My plaquenil doesn't seem to be helping this outbreak much.

I did do the happy dance at work today because I whipped out a couple of special reports for clients in spite of the chaos of my day. I'm pretty fast when all my brain cells are firing.

All my blood tests seem to be in that Dr. Gnome ordered, and hopefully his office has them by now. Cholesterol and triglyceride levels are great - not surprising since I haven't been able to eat much fat in my diet for years! I show signs of systemic inflammation, no surprise there. I have low levels of some weird antibodies but nothing looks significant to me. To my layman's eye it doesn't seem that anything pops out as a cause of the chronic pancreatitis. I was hoping it would, because it is simple to treat autoimmune pancreatitis, and once treated it sorta goes away. Guess I have common garden variety chronic pancreatitis which has no cure. I will follow up with Dr. Gnome's office Monday if I have time.

I've taken the maximum medication I can imbibe for the next three to four hours. Wish I was tougher, and The Belly was less touchy. Need to improve because I have things I need to do this weekend.

My older brother was so nice, he went into the garage and put up some of my Christmas decorations including a couple of trees with lights and some wreaths. He didn't seem to find any ornaments, and I'm not sure what happened to them last year as The Headache was going full tilt when I put up the decorations in January. Our mom was quite pleased with the Christmas decor. My younger brother has been playing Christmas songs all week to try to get us in the mood. Maybe I will get in the spirit but right now don't have the energy required.

Thursday, December 17, 2009

Resolution: I Need Happy Feet


No More Gloomy Gus

Like Steve Martin, I am going to wait until the drugs take effect, and then I'm gonna get me some happy feet and do the dance of joy. I'm tired of being tired, grumpy about my grumpinees, unhappy about my unhappiness. I should be concentrating on preserving my happy nature instead of letting life's circumstances get in the way.

For the next week the plan is to maintain a happy mood. I'm feeling kinda down physically, just not up to the challenge of an eight hour work day yet as I am having to medicate fairly regularily. I'm just going to have to get more used to the medication so I can function better when I take it, and not be bummed out because I have to take it. I think undermedicating and trying to work through The Belly pain is not working. I'll try tomorrow to maybe take half doses during the day and work my way up from there. Perhaps I should take a big dose of Pollyanna-esque cheer with the medication. I'll bet it tastes like sunshine and flowers.

I am going to cultivate my old goofy attitude and regain my positivity (is that even a word??). Happy street I'm heading your way!



Wednesday, December 16, 2009

December Blog Carnival


Dianna Lee has done it again!

The December Headache Blog Carnival has been posted. Terri Roberts is this months hostee (or is that hostess?), with help from the ever organized Dianna Lee.

The theme this month is Advice on and experiences with reducing holiday season stress. There is plenty of interesting reading and helpful hints, so click on the link and enjoy!

The Belly Blues


Another Lost Day

Stayed home today. The Belly didn't want me to do much but take pain medication. I tried all morning to get going without any medication, but finally at noon realized that I needed to just give in to the inevitable and take my trammadol. I have slept most of the day, and the trammadol is just able to take the edge off The Belly pain.

The Headache is still bothering me but I also have the stimulator turned down to the barely there settings. The muscles in the back of my neck are finally feeling normal again, so I will turn up the stimulator tomorrow and see if I can corral The Headache.

The Belly is really kicking a fit today. Wasn't too great yesterday afternoon. Hoping that maybe resting today and tonight will put it back to normal. If it doesn't get better tomorrow I will go and have my enzymes checked. Taking a vacation from eating should help.

I had hoped to work from home Monday night, but The Belly interfered. I medicated last night hoping to be able to work today, but lift off was not acheived. Hoping to go to work tomorrow!

Last year at this time I was recovering from a bout of acute pancreatitis AND The Headache was not controlled. I was considering trying for disability because I was in so much pain. This year The Headache is almost under control, and The Belly is my main concern. Wonder what will be my main concern next year? Hoping it won't be health related! I think it would be great if next year I just have to worry about where to go on vacation!

All my vacation time has been spent being ill the last couple of years. I would like to go on a real vacation and sit on a sunny beach listening to the ocean and feeling the warm breeze....or maybe up in the mountains, in a cabin near a clear stream with the air scented with cedar. Ahhh, just thinking about it makes me more relaxed!

Monday, December 14, 2009

Exhaustion


Ready for a New Week

I muscled through my client visit last week. I was in training mode, which for me is a high energy type of performance. When you train you are sorta dragging everyone along with you down a certain path. Some want to skip ahead and get lost in the forest, and some are just not physically up to the task and lag far behind. The skill is keeping all my little trekkers together and pointing in the same direction. You have to convey interest and energy to keep them grouped together and you have to pay attention to what they are doing so they don't lose their way.

Pacing is another energy expending effort. In order for the class to feel confident in their computer skills AND to get them up to speed, you change your pace of delivery. At first it is slow, then faster, faster faster the longer you train the same session, hoping by the end you can have them almost up to a normal speed.

At the best of times, training is very tiring for me. I tend to stand and walk around the training room so I can observe and help the students. Since the radiation therapy many years ago if I exceed standing for a half hour (and generally I am on my feet eight hours when training) the nerve pain starts up. Then having The Belly hurting, and The Headache hovering, and not daring to eat anything much I pretty well wore myself out. Hopefully my students didn't notice! I took great pains (literally!) so they wouldn't know how tired I was.

There were plenty of people to observe from work - two programmers, and two developers working on a new product - hopefully they absorbed enough that if I fall apart physically before the middle of January they can pick up the slack! My students at this client were wonderful, a true joy to train. They were interested, they were quick to learn, they brought up pertinent questions, and they had a positive attitude - all I could ask of a client and a class!

I am very tired and exhausted today. I have not been able to do much this weekend except rest, but hope I am finally on the mend. My left eye is droopy and my face hurts and The Headache is trying to attack but I am medicating it to keep it in its place. The Belly is hurting but not as much as last week. I am optimistic even though it is past 3 AM and I hurt too much to sleep that tomorrow will be better yet! Looking forward to a great week next week. Belly don't disappoint me!!

Tuesday, December 8, 2009

Return of The Cankles


The Horror!!

Trying to work this week and get a full 40 hours or more in, so far it has been successful. The biggest drawback is I am retaining fluids and my cankles have returned. Oh, the humanity!! Will the cankle torture never end?

It seems the sicker I feel the canklier my ankles get. I wonder if there is a pancreas/cankle syndrome out there somewhere?? I'm rankled about my cankles. I always had thin ankles and very small feet, now they are turning into stubby cankley blobs that won't fit into my shoes.

While I'm ranting - shoes are a very sore issue with me. I wear American size five shoes. Apparently all the retailers of shoes have gotten together and have decided not to stock my size shoes. I have been told by countless clerks to shop in the little girls section. I'm 50 years old - do they think I want shoes with hearts and shiney stars and Hannah Montana on them?

It's past midnight again, another sleepless night. Very productive day at work - did a three hour lecture on medical business practices and organization this morning. Wishing The Belly pain would go away. The Headache is behaving since the cold front whistled in last night. I'm feeling more upbeat - getting back to work always makes me happy. Have I mentioned before that I love my job?? The boss is recruiting to fill two new positions - one for my area of responsibility. Yeah! Wish I knew someone who would fit the bill - I know people, but either they can't travel, or they don't work well with others, or they like the job where they are at now.

Going to take another pill and see if sleep will come...The Belly burning gets worse at night for some reason. Working towards making it to Saturday without going to an emergency room.

Work Day - Yeah!!!!


Dammed Demand

I waited out the pain this morning, and got myself to work. I was able to work until five, and then come home and work some extra hours this evening. Today I fielded a lot of questions while trying to catch up at the same time - it was like a torrent of flood water flowing over a dam drowing me. I was glad I was able to make sense having been off so much! I didn't take any type of pain relief with me since I knew I would be tempted to take it so tonight I am paying the piper and the pain meds are not keeping up. Ah, wishing for a perfect world where The Belly behaves!

I am trying to hold it together this week because Thursday we are going to a client to do some training. This time I will have a group going with me to observe and document the training for support purposes and future training sessions. Thank heavens! In the last two years we have had two different persons who were supposed to be my training backup and neither one worked out. They just weren't good travelers - since sometimes we are on the road for days at a time so being a good traveler is pretty important. You have to play well with others when you are stuck for days in the same sandbox as a bunch of other people.

I can travel by myself or in groups, doesn't phase me either way. When I was a project manager I traveled quite a bit by myself and it never bothered me. The worst part of traveling in groups is sharing transportation - you don't have any autonomy. I'm thinking of travel because my boss told me that we have a bunch of installs already lined up for next year, and they are strung all over the U.S. Trying to get the old pancreas back in shape before the marathon starts because I need the stamina. Hopefully we will get some new persons to help, that way I won't have to be gone as much. Hopefully I will still be able to work...sigh....

The Headache is trying to rabble rouse this evening - there is a weather front coming in and I am sure that is why it is worse. The stimulator is keeping ahead of it so far! Hoping that tommorrow will be better.

Sunday, December 6, 2009

Excessive Misery


Blues on My Mind

I'm thinking "Gloom despair and Agony on Me..." Well, maybe despair is going a little too far, but I'm definitely in the gloom and agony category tonight. Debating on whether or not to go to the emergency room. I really don't want to, but the pain and nausea of The Belly is pretty bad. It started getting worse this afternoon despite my attempts to medicate it. I will wait and see what it does later today as its 5 AM and I have not slept yet despite mucho medication.

I've missed a week of work last week, missed a week two weeks before that, and really can't afford to be off another week. But as sick as I am right now, I won't be able to get into work anyway. What a situation.. Darned if I do, and darned if I don't. Dagnabbit!

I have things to do at work that need to be done NOW not in two weeks when I feel better. I know I am not indespensible, and that work can go on without me, but I love my job. I take pride in my work, I enjoy the people I work with and for - I even enjoy the commute! Even though they are very kind about how ill I have been, I feel like I am letting them all down by not being there and fulfilling my part of the team work.

Just trying to stay upright (it seems to help The Belly) and keeping a heating pad warm and tucked in close to the old pancreas. Maybe I'll be able to go to bed in a little while, this will be the second non-sleeping night in a row. If I could catch up sleep in the daytime it wouldn't matter so much, but apparently The Belly hurts regardless of night or day so no sleepytime for me...



Saturday, December 5, 2009

Headache Better, Belly Worse


More Tests More Waiting

I realized today it has been about 44 days since the last "Bad Headache Day" posting. I've had some flare ups since then, especially when I was in hospital with pancreatitis, but the pain is much less than it was. I still have daily head pain, but now it is around a two on my pain scale most days. Compared to this time last year the pain was staying at about an eight to nine on my pain scale all day and all night. I was contemplating having to quit work because I was so non functional from the pain. Now The Headache has receded to a tolerable level I am optimistically hoping it is whipped. Yeah Occipital Stimulator!

Was able to do a phone interview for the occipital stimulator study intead of flying to Cleveland. Lilly the study coordinator went to bat for me - she's such a nice lady! I have two more visits after this one - the next visit will be in the spring, I will get the headache diary back and keep it for another month. Hopefully by then the ever present nagging headache may have disappeared. I realize that my range of disability from the headache has improved sooooo much since I got my buzzer installed. Now if I can just get The Belly to cooperate.

I have been home sick almost this entire week. I feel like I am letting my bosses and my work mates down because this stinky painful pancreas is flaring up. Dr. Gnome's office called and said I may have to have another ERCP, which I am NOT looking forward to. I am severly allergic to the dye they use with the fluoroscope during these procedures. The only time I had one done, I came out of it with The Headache that never goes away!

Dr. Gnome ordered a bunch of blood tests, which I had done at the lab they faxed the orders to. Several of the tests will need to be sent out to Mayo's (they must be weird ones) so I don't know when the results will come in. The lab techs thought some might be in by Monday. My arms are still bruised up by the blood tests and IV's from being in the hospital and the blood tests I had about a week ago, so the poor lab techs had a hard time finding a vein. I try to be very patient about the blood testing process as my veins seem to know they are being stuck and either dissapear or dry up when a needle gets near. I can't figure out how my body does this. It is extremely frustrating!

The blood tests seemed to be looking for an inflammatory or autoimmune or hereditary cause for the chronic pancreatitis. Dr. Gnome's PA had told me if I have autoimmune pancreatitis they won't need to do an ERCP - that they can treat me with prednisone. I don't like the side effects of prednisone, but would be happy to avoid an ERCP.

I want to get whatever I need done over with, so I can get back to work like a real person and contribute. I have been soooo sick feeling this week and taking pain medication and anti nausea medication that my mind isn't working very well. We are a small company, and right now they need all hands on board. I'm at the point just like last year with The Headache I am almost ready to throw in the towel and quit trying to work. I keep hoping that something will fix The Belly the same way something fixed The Headache.

Well, tomorrow is another day and next week may bring answers to The Belly dilemma or it may just create more questions. I will try and behave myself, and eat very little this weekend so I will be at my best come Monday.

Wednesday, December 2, 2009

Blast That Pancreas!



Don't Poke The Pancreas Please

Went to work Monday for a short time. Had an appointment with my PCP that afternoon, really just wanting to get a referral back to my local GI. My PCP told me that he thought I was out of the realm of the local specialists to treat, and perhaps I should stick with my St. Louis docs. Sigh. However, my PCP did write a new persciption for Creon (the enzymes I have to take with meals) which was the primary reason I wanted to see the local GI anyway.

He did a physical exam, which included pressing on the abdomen. Afterwards, the pain just started to build and build and build. I am thinking the pancreas is sorta bruised so any pressure makes it worse, internal or external. I wasn't able to go to work Tuesday (its now early AM Wednesday) because I had to take too much pain and nausea meds. My PCP wanted me to go back to the ER if the pain continued to build, but I would like to avoid it if at all possible - they tend to keep me lately!

The study coordinator called from the Cleveland Clinic. I need to return for another evaluaton (I think I have two more after this one) but I asked if this one could either be postponed until I am feeling better, or if it could be done over the phone. She is such a nice lady, she said she would talk with the study sponsors. She also said she had to report the pancreatitis as an adverse event. I told her The Headache and the occipital stimulator were NOT the cause of the pancreatitis, that the stimulator is working excellently.

It is now over four months post implant, and the pain control gets better each day. The improvement now is more subtle because the pain is much better controlled, so the differences are smaller. The stabbing headache pain seems to have disappeared, and I haven't had a right sided episode for quite a few weeks. I am so grateful for the stimulator. I would not be doing as well as I am now if the stimulator wasn't there. I would still have pancreatitis AND I would have an uncontrollable headache.

I was woken up at 2 am with pancreas pain, took some tramadol and phenergan, but two and a half hours later the pain is still present - a little dampened but still making itself known. I'm starting to get spasms which is not a good sign. I am going to take some more tramadol and phenergan in about 20 minutes and see if I can stomp the pain back.

I am very very tired and sick feeling. Besides the location and intensity of the pain, this is a big difference from The Headache. My PCP says that malnutrition from not eating is contributing to this and to watch out that I'm not dehydrated. It's so hard to stay hydrated because The Belly hurts no matter what hits it, food or liquid. I am doing the Ensure at least three bottles per day, but that probably isn't adequate either. He also said I should not return to work until the pain is under control, but that would probably mean not returning to work at all! I'm trying to be tough and work anyway but yesterday just wimped out. Hoping today will be better, but its not starting out very well. They make tramadol in an extended release tablet, maybe that is what I should be taking.. Sigh again...