Bad Headache Day #10 2009

Again to the Emergency Room

Tried hard today to manage The Headache, but it bested me at about noon. I had taken all the Benadryl and phenergan that I thought was safe, and The Headache was not backing down. It is never a good sign when I can't sleep in the middle of the night due to The Headache.

My brother Phil was kind enough to take me to the Emergency Room in Springfield. I tried to just get by with a shot of Toradol, but The Headache wasn't in the mood to cooperate. I then was given IV Fentanyl, and it backed off The Headache just a hair, and seemed to make it quit surging forward.

I'm back home, The Headache is still going strong, but I'm hoping that it will stay at this level for the rest of the night. I'm not sure how strong Fentanyl is, but the pain relief didn't really last very long. It's better than no pain relief at all that's for sure! I'm praying really hard that the Toradol isn't becoming less effective. It's been my lifeline for the last 12 months.

There were a slew of banged up folks at the ER. Apparently the ice storm is taking its toll in bruises and broken bones. Not a good time to be walking on ice if you don't have Yak Traks to put on your shoes!

Bad Headache Day (or night) #9 2009

Up With The Moon

The head hurts, The Belly burns, and I'm up with the moon and stars to keep me company. The Headache is under semi-control, but the old 2:00 AM wake up call from it has started again. I'm attacking with more benadryl and phenergan, but I'm losing the battle in the middle of the night. I wish there was something I could do that would just knock me unconscious. Perhaps a large mallet blow to the head??

I am tired but The Headache won't let me sleep. I feel whiney and gripey and grumpy and sleepy and dopey, but not sneezy or the rest of the seven dwarfs... What better to do than blog - typing deep thoughts into the eternal ether of the internet. At least its a distraction.

The weather is warmer and the snow and ice is melting. My head keeps hurting and I find it hard to care about the weather, about work, about anything but The Headache. I have practiced my biofeedback techniques, but when the pain gets bad enough it becomes impossible to think. I have envisioned walks throught the woods with lovely streams flowing nearby and crunchy snow underfoot or sunlight warming me from above and I delude myself that it is really working This Time! Then The Headache has its say and out run all the lovely thoughts from my head and all I can do is feel the pain.

Well! Enough feeling sorry for myself - there are persons out there in the world with worse problems. After all, I have lived nearly 50 years and have only had this last year with this constant pain in the head. It is only terribly horrible every few days and deathly horrible a few times a month and I have a few functional days sprinkled in there somewhere. It would be intolerable constantly without the indomethacin. I hope for a solution that will enable me to quit the indomethacin (saving The Belly) and still kill The Headache.

The oddest thing - there was a big BOOM this evening, and then later a firetruck and some deputies went down the private lane next to our house with their lights flashing. They came back up the lane sometime later without their lights flashing. I'm taking that as a good omen that no one in our neighborhood was hurt.

I continue to blog waiting for The Headache to respond to the medication. I always thought I was brave until The Headache hit in 2007, now knowing what levels of pain I have to endure at times I become panicky. I have hit the limit of what I can endure, and I fear as The Headache whittles down my resistance day by day by day that the limit may be getting lower each time. How can I really tell? I will try all kinds of tricks to keep The Headache at bay just so I won't have to take my measure against it again.

Sigh, I'm getting morose because the medicine isn't working. I better quit blogging while I can still type. I may try another round of benedryl/phenergan in another hour. All Praise the mighty Benadryl - doing double duty as hive reducer and headache calmer!

Weather Against Me

Durn Than Blizzard/Ice Storm

Was supposed to leave to go to Cleveland today, had to redo my appointment, cancel my reservations. Way too bad to drive today.

I tried my best to be able to go, but this AM there was a semi wreck on I-44 blocking the interstate for two hours. I waited for this to be cleared, then another semi jack knifed about 50 miles to the east of the other accident blocking the interstate. I gave up. The weather in Cleveland was clear and their roads were in "great shape" but the between from my place and the 13 hours it takes to get to Cleveland was pretty well impassable.

I'm disappointed. I took yesterday off from work to get medical records together and get my driver's license replaced (I've lost it somewhere) and today was a total loss. I'm gonna try to work tomorrow if The Headache will let me.

The Headache is ever present and wanted to flair up with all the activity of getting my car defrosted and packing. I've not been able to eat very much today and The Belly has been talking to me - I'm not sure if it approves of the fasting or not - eating hurts as much or more than not eating! I've been sleeping off and on all afternoon and evening from the benedryl/phenergan combination, trying to keep The Headache at bay.

I'm getting very worn out and am not sure if I can muster the energy to make it to Cleveland next week. Here's hoping for a better week next week!

Grocery Shopping Delight

Better Day Today

As usual The Headache backed off today after two days of agony. It's still there just at a more bearable level. At least I was able to do something today - spot mopped the floor, went grocery shopping, and made sandwiches for lunch.

I am hoping that I will be able to work through next week, unfortunately - Friday, Saturday - BAD, means Sunday, Monday, Tuesday maybe Wednesday good, but Thursday definitely bad. Sigh, wish The Headache could be five on two off, and I could get it regulated to weekends!!!

My brain feels bruised - wish I could rub some liniment on it to make it better...

Headache Day #8 2009 Lost in Sleep

Sleeping the Day Away

Bad day yesterday, worse day today....woke up with very bad pain several times in the night, still bad this morning, so did the phenergan/benedryl combo my KC doc recommended to put myself out.

Have slept most of the day and am feeling a bit dehydrated. So far today have taken 75 mg of phenergan, 75 mg of benedryl, and 50 mg of tramadol (this last for The Belly pain from lunch) along with my indomethacin. The Headache is better than this AM (I woke up at the pacing and "Oh God" phase with dry heaves) but very painful yet. I am waiting a bit, but will take another 25 mg phenergan and 25 mg benedryl and try to sleep more.

Unfortunately if my problems continue according to schedule, Wednesday and Thursday of next week I will be at my worst - all the way in Cleveland, and no way to just knock myself out. I dread the trip, and am prepared for disappointment. Cancer didn't whoop me but I'm thinking this headache has me down for the count.

Bad Day Around #7 2009

I've got the Blews so Bad!

Headache's bad - bad day altogether. Been able to keep The Headache under control - barely - and The Belly has had it's say today. After a great day or two - today has been a real downer.

The weather is changing from warm and sunny to cold and stormy - maybe that's why I'm not doing so well. I think my BP has been in the stratosphere too long, and I just can't get warm even tho the house is 84 degrees.

Tomorrow will be a better day. I think the realization that I may be this way for a long long time is hitting me again today. Just really tired of The Headache. Period

My Brain My Brain My Kingdom for A Brain!

Occipital Stimulators are NOT Brain Implants

Had a long conversation with my mother tonight. She was thinking I was contemplating a BRAIN implant. It took hours but I finally explained that occipital stimulators go just under the skin on the back of the skull, but they don't go through the skull or penetrate the spinal column. I also told her the appointment is just to see if I would be a candidate for this surgery/implant, and that chances were that I was NOT a candidate (I had an occipital nerve block last spring and it didn't do anything but numb my neck for a few hours...) and if I were a candidate chances are that my insurance company will not pay for it for one reason or another.

I reminded Mom that without my income we are up the proverbial creek without a paddle, so I'm trying desparately to dot all my i's and cross all my t's to make sure no stone is left unturned in my search for normalcy. I hope even if the stimulator thingamabob doesn't work out, that these high class pain specialists would have some other ideas that my KC doc didn't have.

I told Mom that for one thing, they wouldn't want to drill though the layers of bone it would take to get to my peanut sized brain - it would wear out their equipment. That's why the implant is on the outside of the skull, duh!

I have a lot of Marriott points stored up, and think I can get two nights in a hotel suite for $37 instead of $300! Whoo Hoo! All those years of traveling finally pay off....

Got to get going - got to get up in the morning and maka the doughnuts ......mmmmm.... ...doooooooughnuuts....

Appointment next week

Well its a deep subject for such a shallow mind

I have an appointment next week at the Cleveland Clinic with the pain managment department. They may or may not decide I'm a good canidate for an occipital nerve stimulator, but I'm gonna give it a try. Maybe they can come up with some other ideas if the stimulator idea won't fly.

Now, I've got to gather medical records and of course the hospital in St. Louis tells me that my records from my stay there are in storage already. The people at KU I called just sent me to voice mail (KU is voice mail hell! you never get to really talk to anyone). I will go through the Springfield hospital and clinic for theirs - but they aren't hard to deal with - last time at St. Louis it took three months and a threatened lawsuit to get them to let loose of my records.

Money wise I will have to figure something out. Sigh - I can always drive - it is only about 13 hours from here - that would just cost a hundred dollars worth of gas - everything else is $500 or more to fly. Wish I had won the lottery so I could afford to be ill. It's a big city - I will be lucky to find a room at a reasonible rate. Sigh again......

Bad Headache Day #6 2009

The Headache Wins Today

Bad day all around - woke up with pain got worse - couldn't get warm - just shivering and couldn't sit still for The Headache makes me jittery. Different than migraines where I want to be as still as possible - the pain just makes me want to move.

Thank god, got right in at Dr. D's office, got injection of 60mg Toradol, 25 mg Phenergan, and 50 mg Benedryl - my usual cocktail for The Headache. Slept most of the day. Dr. D said I'm becoming disabled from the pain, and I agree. He did say the Cleveland Clinic is an excellent healthcare institution, and I should get my doc in Kansas City to get moving on the referral.

The Headache is wearing me down - I feel my pain threshold becoming lower and lower, or else The Headache is worsening. I think it is the threshold, I am also developing anxiety about going into the extreme levels of pain with The Headache. I would do almost anything to keep from going to 9 or 10 on my personal pain scale, yet when The Headache decides to go there I can't stop it.

The Emily pain scale (it is somewhat like the Richter Scale for earthquakes or the Fujita scale for tornados so the intervals get progressively worse between steps) goes like this:

Scale 0-10, with 0 pain free 10 unbearable:

0 No pain - haven't been there in a while
1 - 4 Not worth mentioning pain - 4 is generally where I dwell on my good days.
5 - 6 Better do something quick pain or I'm in trouble - photophobia nausea starts
7 - 8 Hurting pretty badly starting to get jitters will progress quickly dizziness
9 Crying, can't sit still, usually vomiting, keep repeating O God! Panic
10 Can't move, just shaking vomiting crying - extreme pain. Dilaudid only help.

The headache still here this evening - when from 8 to 6, now back to 7. Will try to sleep this evening. Hope to go to work tomorrow - we will be shorthanded. I feel like a big whiner (or is that weiner, or maybe winner - nope not winner, maybe loser) because there are people with much worse ailments out there.

I am extremely dizzy and nauseous and The Belly has been talking - the Toradol injection seems to upset it in addition to the indomethacin pills. Both my headache doc and Dr. D say that the IM injection should hurt it less, but I think The Belly was just feeling neglected today - haven't eaten anything all day...


Ahhh well, tomorrow is another day - it should be better!

Cleveland Clinic?? Perhaps...

Finding an occipital stimulator surgeon is hard work!

Now if my insurance will pay for it. My nurse case manager told me if the device is FDA approved (which it is - they are testing newer ones) that insurance should pay for it. I have chased leads found through PubMed - shamelessly sending emails to people I don't know and have found some hope.

Cleveland Clinic (in Cleveland Ohio) is the only In-Network provider I have found that does these, but they DO do them. Yeah!! There is a Dr. in Michigan, a Dr. in San Franscisco, a Dr. in Scottsdale, and MAYBE a Dr. in St. Louis who perform these, but they are out of network. A very nice doctor Napoor from India gave me three more names. Of course the Insurance Company is hoping I get into a study so it all would be FREE but the chances of that are preeeeeetty tiny. All the studies are about migraine or cluster headache (which really is about 99% of bad headaches - I had migraines for years) and only a handful of people with my type of headache have had this surgery, probably because Their Bellies didn't betray them like mine.

This is the only ray of hope I have had in over a year that the pain may stop someday, or just be a little bit better rather than a lifetime of BAD. I am prepared to have my hopes dashed on the same basis that all other temporary improvements have been for naught.

Worked on my sister's PC. We have all been blaming Hewlit Packard because we thought her install disks were bad. I finally figured out in the wee hours of the morning that her mother board was flaky - the longer I ran it (I almost had it faked out to reinstall correctly last night at about 11:00) the worse it got - until it started looking for drives that weren't even there - the X Drive of all things (Is that where the X Files are stored??) and then randomly asking for another letter of the alphabet....The only drives were her C and D drives - I had disconnected every thing else HOURS ago... I found a diagnostic that ran on her mother board for 3 hours and it came up with like 6,000 errors. Yikes!!! I think my response after all those hours we all have spent working on this lovely piece of equipment should have been saved on an X Drive.....

Friday and Saturday - pretty good days for me - Sunday not so bad....Monday or Tuesday The Headache is sure to rev up its RPMS - it's idling at about a 4 for me this weekend so far!

Bad Headache days 4 & 5 2009

No Doctors Only Voice Mail Hell

Yesterday and today have been bad. Headache pain yesterday not extreme but bad enough on the Emily Richter Scale of Headaches. Vomiting again, stomach pain again, not good. Today headache pain in the midrange, but stomach pain elevating and now have mouth ulcers on my lips. Not sure if its from vomiting up pancreatic enzymes yesterday or the indomethacin - at this point does it matter???

I have not found one doctor who does the occipital nerve stimulator implants, and all I get is voice mail at my headache specialist. Never confirmation that it has been received. I called today and insisted on talking to a person. Even with this got sent to voicemail 2x, hung up on deliberately 1x, and only after asking to speak to the office manager was I directed to a person. Nicole (who I did NOT leave the voice mail message with - it was jeanine) stated that she had sent an email to Dr. B*****l who was practicing at Children's Mercy on Thursday and Friday, but Dr. B****l had not returned her email. My prior experience with voice mail at this practice has not been good - one time it took three weeks and multiple calls to get a simple question answered, and the last time they said they would send off for my medical records which they never did and I got no answer in four weeks. I am out of patience.

This doctor should be the one trying to round up someone not me. She is the one who will have to do the referral. I think she knew already that there was no one. I did find there is a Dr. Dodick at Mayo's in Scotsdale who is doing a study on occipital nerve stimulators, but that my doctor will need to talk to him to see if I qualify. My luck is I won't qualify. If I get a regular appointment I have been told it may be a year before I get one. AUGHHHH!

Bad Headache Day 3 2009

The Headache Commands and I Listen

Went to the headache specialist in KC today. She was supposed to have requested my hospital records but of course none where there, but I was prepared and had a copy with me. Ha! Stunted Beauracracy! I was ready for you!

A lot of good it did me. Basically I was told what I already knew: there is no alternative medication for The Headache - the list has been exhausted unless I want to go on steroids again. They only partially helped The Headache and I ended up on insulin for awhile and my pancreas revolted AND I gained 25 pounds so not that useful. I have not had a headache free day since December 2007 and am already tired of this Thing.

The pain going off indomethacin was excruciating - a migraine at a 10 for hours and hours - and ended up with dilaudid to knock me out, and I don't like that - especially the pain part. My specialist mentioned occipital nerve stimulators and that there has been some advances in pain control with these...

I was given the name of a physician Steven Wilkinson in Kansas City that implants occipital nerve stimulators for headache control with some success. I will talk with my insurance company and see what they say - if it's experimental I'll bet they won't pay....

Another Productive Day

Yeah! I did something beside snooze today!!

Went to work for a five hour day - got quite a bit of work completed. I'm getting faster lately - maybe it's a good sign for The Headache. Haven't been blogging since The Headache and The Belly ganged up on me last Friday. I was in snooze city for a few days recovering....

Found this picture on Flickr that looks like I feel most days, just wish my hair was as silky and smooth!

Tomorrow I am off to KC to a specialist for The Headache. First my insurance wasn't going to cover them because some VP of Marketing (synonymous with Dumb Ass at that company I guess) decided it would be so and sent a letter saying so. Not wanting to take No for an answer (they had paid the prior 2 bills) I asked for case management to see if I could be case managed because I have soooo many things wrong with me. They said they would have to take it into advisement, I told them they had sent me four letters asking me to be case managed, now that they might have to kick out some money were they against it? I finally got a reply last week (the insurance company had my home phone number wrong in their database, even tho I had tried to correct them the prior week when they gave the number to me so they wrote me a letter). I called them up, yep they would case manage me, but then I got a call back from case managment saying I had a SUITCASE on my card and I was covered. I wasn't sure if Dumb Ass the VP was right and it didn't matter I had a SUITCASE or the case manager was correct and it did matter. My money was on the case manager. I called today and AGAIN reverified my coverage. First I was told I was not covered, then I was told I was covered out of network, THEN I was told I had a SUITCASE on my card and I was covered in network. Your guess is as good as mine: if this claim gets paid it will be a miracle, since I have a SUITCASE on my card it's gonna be hard to put it in my purse - I don't think it will fit!

The Headache Bad Day #2 2009

Bad Day All Around

The Headache fought back today and won. Perhaps my sister is right and it gets stronger when the weather changes - since it is raining tonight and due to get colder. The Belly also kicked in so I was in Ouchy shape. Wasn't able to work today.

Called the doctor, and instead of Zofran, he prescribed a medication called Reglan. Similar yet different, eh?? My experience in asking a doctor to prescribe a certain medication is that I don't ever get what I ask for...but I have to say the Reglan is helping the nausea...

I have added a sad trombone button at the bottom of my blog because that describes my mood lately - wah wah wah....

Another Sleepless Night Another Busy Day

Augie Tries Mom's Patience

Augie my little dachsund was on the warpath today because there were some visiting friend dogs visiting my brother's little beagle. Augster's sharp barking was getting on Mom's nerves so she let him out to investigate and/or play with the other dogs. THEN she tried to call him back, and he ignored her. I went and just said "Augie time to come home!" and here he trots in. Maybe Mom just doesn't have the sound of authority I do :D

The Stomach and The Pancreas has ruled this week, but maybe there will be some good news tomorrow. A friend, Amber Lietz, who is a nurse, recommended a drug called Zofran for the nausea. I will call my GI doc tomorrow and see if I can get it prescribed! I'm getting a bit dehydrated, and that always gives me quite a problem with charley-horses. Just one more thing to hurt and keep me from getting any sleep. I haven't eaten very much today - hopefully that will prevent the nightly nausea marathon.

I had another busy day at work, but The Stomach was creating much havoc because I tried to eat some food yesterday. Tramadol helped, but didn't get rid of all the pain. Maybe the enzymes will kick in and The Belly will Behave!

It was so sweet of Amber to suggest a solution to the yucky belly problems. I remember Amber when she was just a little gal in high school. Mom helped her make the cutest prom dress, and a beautiful wedding dress. Now Amber has beautiful children of her own looking all grown up and it doesn't seem possible. To us, it just seems like yesterday she was a teenager! I stole her picture off Facebook - and she doesn't look a day older to me from the last time I saw her.

It's a good thing when you can get advice from a pro, especially when your parts are so old they can't be replaced anymore, and your warranty is expired! Thanks Amber!

Bad Night Busy Day

Puking Again!

No sleep last night - very nauseous even after taking phenergan. Vomited until I couldn't vomit any more.... So many things are wrong with me, I can't even tell what the cause was. I get so shaky after these episodes. My mother, bless her aged heart, heard me in the wee hours of the morning and brought me a chair to sit in, because I was too shaky to walk.

I was taking the enzymes at full dosage, so today I cut the dosage in half. The nausea could have been from The Headache since The Headache really woke up half way through the yucky stuff, so every dry heave was another notch up on The Headache pain scale.

I was able to go to work for 5 hours today. I had a billable project to finish, and wanted to get that out of the way. Luckily The Headache calmed itself down in the afternoon, and I was able to be a little more productive. I even got an attaboy_girl from the boss man!

My sister and her husband came over this evening. My sister has been fighting the Battle of the Bad Computer Restore Disks. She had purchased some software at Wal-Mart that seemed to have a virus embedded in it, and then got very poor advice from a tech line she called. She needed to use my connection since her PC isn't up an running yet. Hopefully maybe tomorrow.

We had chicken burrito's and my brother-in-law really enjoyed eating them! He has some serious health issues, and I made low fat burritos especially for him. My sis is a full time caregiver for him, and I was pleased that tonight she got to eat something she didn't have to cook! Of course, my own cooking skills are negligible, so the components of this were easy to buy and assemble...and I have discovered no fat sour cream! Even The Belly approved, although I couldn't eat very much.

Working as Much as I Can

Almost Too Tired to Write

It's pitiful that my idea of a long day at work is from 9:00 in the morning to 2:00 in the afternoon. Where is the woman that was able to work 20 out of 24 hours, then turn around and do it again??

The Headache is at it again today, creeping out of the shadows to ruin my day. I had a good day at work - accomplishing a lot. That seems such a rarity for me nowadays, so I was glad to feel useful.

The pancreatic enzymes make me more nauseous than I already am. Hopefully this is a side effect that will disappear as I get used to them. So far, they are not helping the pain very much - but I am exceedingly gassy. I'll have to get someone to hang on to my tether ropes so I don't float away, I'm that gassy.

To top my day off, I got a speeding ticket today - 43 in a 30 mph zone! Just wasn't paying attention - when The Headache starts working on me, I get a little absent minded...guess this is a reminder not to drive when The Headache is in charge...

Yet Another Doctor Appointment

The Belly Rules the Day

Yet another doctor appointment in the maze of doctor appointments my life has become. Whatever happened to one stop shopping for medical help? I have so many specialisits that coordinating care between the specialists and my primary care doc is a full time job.

I now have some pancreatic enzymes to take to try to fix The Belly, which got upset because The Headache likes medicine The Belly doesn't care for. I'm just waiting for The Pooper to chime in and demand its share of attention. Who would think that such an ugly looking thing as the pancreas could make The Belly hurt so much?

I told my nieces that I am going to have a Pancreas Party when I get this thing working right - the way its going it will be a couple of years.

Not a bad day, The Headache was resting today - just a sour undercurrent of headachiness waiting for another day to pass before livening up again. I was able to work a few hours. My bosses are saints, but one of these days they are going to need me full time again and I don't know how the old body will take it, and then I suppose it will be goodbye bosses hello unemployment.

One part breaks, puts stress on another in a roller coaster of medication and problems - I don't have a warranty on any of it anymore and its too late to buy the extended one!

Company At the Homestead

Tired Old Ladies

We were visted yesterday and today by a hoard of great-nephews and a niece and an ex-sister-in-law who is now my first cousin (don't ask it's too confusing to explain!). The boys flowed through the house like a river of fish, taking different streams everytime they went from the front door to the back!!!

Their grandpa (my brother) took them to a movie today, and one stayed behind and played Playstation games all the while the rest were gone. They were all good boys and hopefully had a really good last weekend for their vacation. For all of them, school starts tomorrow! I found a picture of one of them - Trenton - but they all four were equally cute!

I didn't have to cook for them, as we had pizza yesterday and grandpa brought sandwich fixin's today. Thank goodness, because great-grandma and I are tired old ladies and keeping up with all the comings and goings was plenty enough for us. I can see why child-rearing is for the young and spry! Their momma/aunt and grandma kept pretty good track of them - it's just that we aren't used to all that quick movement!!

Note to self on the pizza: Don't think the pancreas likes pizza yet - remember not to try to eat any for a few weeks! Another broken part, another piece with no extended warranty!

Caught Napping

Headache Day 1 2009



Today was "headache day" - I have bad days every three to four days from a headache condition called hemicrania continua. I came home early and took some benedryl and phenergan to help stomp down the headache. I was trying to nap the rest of the day away, socked out on the couch with my pup Augie keeping watch, when what happens but the phone rings!


How is it that everytime I try to catch some winks in the daytime, the telephone rings??? I'm not too grumpy because it was a call from a friend, but the headache proceeds on unabated by anything....

The Headache (I think of it always in capitalized letters) has ruled my life for a little over a year now, and the only medication that works for it is adversely effecting The Belly. When your warranty is out, and no extended warranty is available - your parts start failing in bunches....

A New Year

New Year's Day 2009

My family and friends are hoping for a better 2009 than the last few years. Our aging bodies are breaking down too quick to fix, and I'm afraid the pieces to fix us are in short supply.

I am looking forward to seeing what the new administration has in store for us with respects to healthcare reform. If my family and friends are any indication, most middle class Americans are just one illness away from disaster.

Other countries provide care for their citizens without the maze of regulations and beauracratic barriers we are so good at. How much cost is added to healthcare just to support governmental regulations that were intended to reduce cost? As someone once told me, who's drivin' the bus??