Medication Vacation

Chronic Pain Bites

Every once in a while I take a "medication vacation".  I don't quit taking anything that would endanger my well being or vital functions, but I discontinue my pain medicaiton and any other extraneous meds that might be messing with my metabolism.  I wait it out as long as I can, and then start again.

This isn't the wisest choice.  Tonight I found myself after approximately 36 hours without pain meds in a heap o' pain.  I had some withdrawal symptoms the first day, which lets me know that I am physically dependent on the medicaiton.  The pain, which I do not medicate to the level my physicians want me to, came back stronger and stronger and stronger the longer I was off the pain medication. I always have this bizarre hope that the meds will wear off and the pain will be magically gone.  This is not based on any fact or any basis of reality. 

The medication vacation helps me realize how much pain I am actually in, and why I take the medication I do.  With chronic pain I think you loose perspective on how much pain you are experiencing.  After all, what is the difference between excruciating and untolerable?  It is a very fine line that gets very blurred.  I fear I will think I am in pain just to continue getting pain medications, I fear that my pain might be imaginary, I hope it has disappeared and fear it has not.  When I cannot discern how intense the pain is or how overwhelmed I am because of it I try to see what life is like without the medication.  It also helps my gastroparesis and my digestive system perks up for a few hours, which is the best part of stopping pain meds.

I thought my pelvic pain has increased since the cathertization marathon began but I wasn't sure.  I thought that my nausea has been getting worse but I wasn't sure.  I thought that the neuropathy and leg cramping has increased but I wasn't sure.  I am now.

Intense pain wears me out and I haven't been sleeping well the last week.  I'm not sleeping well tonight either - why I am up writing this I guess.  I caved at about 2 AM and took some medication and will put my pain medication patches on in a short while.  Some medication was left in my system as 36 hours was not enough to clear everything out so at least that gave me a bit of a jump start from my own idiocy.  I lasted longer than the previous medication vacation I took in October - only 24 hours that time.

I knew I had to start the meds back up again when I woke up from a short nap with tears running down my face on on my pillow, and I was clutching my stomach and (gasp) my pelvic region from the pain.  It is hard to describe because you can't point to a certain spot and say - THAT is what is causing the pain.  It is general and it is specific to certain nerve groups all at the same time.  It is enternal and external.

The Headache is not liking me tonight.  Seeing as The Legs and The Belly were already in revolt, not amazed The Headache decided to flare up too.  It's not too bad, so hoping I can get everything controlled before The Headache gets too riled up.

I have work to do this weekend.  I had not really planned on but that is what I get for taking two days off last week, two extra days this weekend.  Not really complaining, just very hard to concentrate.  Not sure if I should keep trying.  It gets harder and harder to work a 40 hour week, and lately just 40 hour weeks have been few and far between.  Even thought I have tried very hard to communicate what I am going through, I am sure people at work are thinking about all the deadlines we have to meet and what needs to get done - not realizing that if I am not well enough to drive, I am also hard pressed to sit or stand or do anything that requires concentration.  I don't think I can do this job anymore.  I want to keep going very badly (or is that very badly want to keep going??  I don't want to keep going if I have to do it BADLY!!)

ALL of my doctors have told me this fall to hang up my hat and go on disability.  Easier said than done.  Financially I don't know how I will be able to do it.  I thought my new employers had long term disability only to find out in December that although they had paperwork we signed that said we had long term disability we were supposed to read between the lines and realize it was not offered.  ARGH!  Well, they probably would have had a preexisting clause in it like they do in their short term disability,  so I would not have any coverage anyway.  sigh.  My health insurance is excellent, but if I go on Cobra (and we are big enough now they have to offer it) I don't know how I will be able to afford it.  I also don't know how I will be able to afford pain medication without insurance.  Another reason for the medication vacation - am I paying for something I really don't need??   Bigger sigh.

Going to drag out my fentanyl patches (I can't find my Tegaderm patches to put on top of them - where o where have they gone - two BOXES of them) and slap them on and try to sleep a little while.  Then up and at work again.  Ah well, at least its a diversion!!!

Wishing I had a Fast Car to Get Myself Outta Here...My body's too old for working....but I know Things will get better...

The Headache that Never Stops

Hemicrania Continua: Continually Annoying

I have a headache condition called hemicrania continua.  It is with me 24/7 and has been my constant companion since December 2007.    The pain levels for this type of primary headache can vary from annoying to excruciating.  Unfortunately mine decided right away to be excruciating.  For most of us once it starts it never ever goes away, not one second of one day.  Only one medicaton has found to be really effective.  If you can't take THAT medicine there are really very few other treatments that work. 

After struggling for several years with excruciating levels of headache agony I can say that my pain is mostly under control.  Between having an experimental occipital stimulator installed, and now having to use fentanyl pain patches and neurontin for neuropathic pain, the hemicrania continua pain has receded.  It is still there, but just at a faint memory of what it can be.  Occassionally it decides to wake up and let me know it still can cause a great deal of pain.  On those days I remember what life was like before I got an occipital stimulator.  Not so good.

Although the pain has mostly gone, the physical symptoms are still occuring at the same frequency they did from the beginning.  Inability to sleep, problems with my left eye turning in and dilating, constant nerve pain on the left side of my face, constant nausea (well, I have other reasons for the nausea so that could or could not be The Headache), sensitivity to temperature, light, and sound.  The physical feeling of cold that pervades my life is a reminder that The Headache is lurking in the background twisting my brain in directions it shouldn't go.

I say the pain is under control but I can't do much physical activity or the pain still flares after about an hour of effort.  I can't take narcotic pain killers of a certain type or the pain returns.  I am constantly having to think about how much I have done, how much I have rested.  It's a major pain in the patootie.

Since having the breakdown of the stimulator controller last fall, I worry about another stoppage of my technology.  The remembrance of bad times past makes present pain free days sweeter but also put a shadow of fear into each day.  I wish I could go back to the few headache free years I had post hysterectomy.

I try to remind myself how lucky I am to have gotten into a study, to have gotten the degree of relief I have from The Headache, and to be able to continue with my life.  When I grow frustrated with the bits of The Headache that remain, I try to remember that there are people out there suffering a great deal and unable to find relief.  I wish wish wish they can find some sort of answer that helps as much as the ones I found.

Day 1 Duragesic

So far so good

Started my day with no pain meds in my system. I kept my specialist appointment (actually saw their PA [endocrinology])and the meds were in at the pharmacy when I got there after the appointment.  The pain was godawfully horrid by then so I was glad to get the patches and relieved they are cheap.

The patches are tiny - about an inch long by a half inch wide. I also bought some tape/tegaderm to hold in it place since you wear it for three days. I took phenergan before putting the patch on my shoulder. I was glad I did because I got a chemical taste in my mouth and some dizzy feeling nausea. As the day went on I noticed these side effects less and less. No vomiting no hives so I am pleased.

The pain relief is not as good as a full dose of the dilaudid but I don't have the side effects either. It seems to take enough of the edge off so I can function. The pain has been so overwhelming that I have had great difficulty getting dressed or moving. The Headache seems to be tolerating it so far, and The Belly has calmed down a bit. Hoping this is the med that does the trick in stomping out the nerve pain.

A secret fear I have is one shared by anyone who has had cancer: what if this is cancer related pain? It seems so awful and unremitting that I find it hard to believe that there is not some dreadful disease process ongoing. I guess I will find out more answers when I see Dr. House in April.

Hoping that tomorrow the patch works as well as it did today. I feel confident I will be able to drive into work. Yeah!!!

Bad Headache No. 1 2010

Ambulance Ride to The ER

Haven't been blogging much the last few weeks as I have been traveling for work and have been very tired.  It's going to be a year for travel if I manage to stay employed.  After last weekend, I'm not sure what I should be doing.

I had a very tiring and stressful week - not bad stress, just stress of trying to accomplish my mission for work in an environment where the client's decisions impact my ability to succeed.  I am very goal oriented, and last week fell back to my old habit of doing "what it takes" to get the job done, regardless of the consequences to my health.  I did it again this week too, am going to have to give myself a pep talk about self care to bring myself back to practical goals that don't send me to the hospital.

Friday The Headache was trying to make a comeback.  I had worked long long days for the last 10 days before, and The Headache had had enough!  I drove the two hours home that night just hoping I could make it there without having to pull over at a nearby hospital.  I was difinitely bumming.  I got home, and Saturday cleaned house, did my grocery shopping, cooked dinner after not sleeping at all Friday night.  The Headache seemed to go back to a simmer, but Sunday it was blazing back to full blast.  Worst headache I had had in months.  I had forgotten how bad it can get.

I had been having pain like this every three to four days last year, so I guess one day so far this year is a big big improvement (thank you occipital stimulator!!).  I had not realized how bad The Headache was getting and by the time I knew I was in deep doo doo, I was in the shape where I could not drive.  I called an ambulance, and once I got to the nearest emergency room I was in so much pain from The Headache that all I could do was shake from the pain.  I was basically incoherent, so it was a good thing I had not tried to drive.

The emergency room PA (physician's assistant) was so nice, he asked what I normally took and I managed to stammer out the list of meds - fentanyl or dilaudid (my preference fentanyl because I'm not knocked out for hours) benedryl, solumedrol, and phenergan.  Apparently phenergan is not supposed to be administered IV anymore (I never had an issue with it but I guess it's not to be given that way just IM injections) so I got compazine instead, which makes me twitchy but does stop the nausea.  Instead of solumedrol, I got decadron (dexamethasone) which is a much harsher steroid but lasts much longer, and I got benedryl and fentanyl.  It took a couple of hours but I got better, with The Headache going from a 9.9 to a 7 on my pain scale.   My sister was able to come and pick me up so I was able to get back home.

I was still working at the client's site so the next morning I struggled to get ready and pack and head out.  The decadron took my voice away - steroids do that to me.  I go from a tinny Minnie Mouse voice to a baritone Miley Cyrus voice.  Not sure why, just another example of why steroids are not a very good thing to have to take!!  I stayed at the clients until yesterady evening, and have worked a little from home today and will go back to work tomorrow.

It may be the steroids, or maybe just the shock of the intense pain, but I am very shakey today.  My legs are wobbly, and I am having a lot of trouble concentrating.  The Belly is acting up, but I know from past experience steroids mess with my pancreas so I'm guessing that is why.

I am supposed to go to the client's again next week.  Sigh.  Not sure if I am physically up to it.  You know, I found this job seven years ago and it has been a dream job for me.  Love the work, love the people, love the clients.  I'm not ready to let it go, but I'm not sure if I can figure out a way to accomplish what I need to do.   The new trainer that was hired has already left the company.  I can honestly say I didn't scare her off, as I have been at the client's all this week, but I am very discouraged because I wanted to have someone I could hand responsibilities off to so if I needed to fade off the job I wouldn't feel I left my bosses in the lurch. (Wow, was that a run on sentence or what??  I'm blaming the steroids!)

The Headache is being contrary this evening probably because I have not rested it this week either.  I am going to take a pain pill for The Belly (I haven't been taking any because they seem to aggravate The Headache) and go to sleep.  Hoping you, my friends, have a pain free night!

Bad Headache #21 2009

No Pet Scan

My day yesterday started off just fine, got to the PET scan facility, and waited and waited and waited. I had noticed the note "need pre-approval" on my paperwork I signed at the door. Apparently my doctors office forgot to get insurance pre-approval for the PET scan. Getting the pre-approval took so long the PET scan got canceled, and then found that Anthem Blue Cross Blue Sheild denied the the PET scan after going to my oncologists office. The Anthem Blue Cross Blue Shield doctor in his infinite wisdom told my onocologist that I couldn't be allergic to all contrasts and I needed to see an immunologist/allergist. Since he had not bothered to look at my extensive Anthem Blue Cross Blue Shield medical record before he refused the service, he didn't notice that I have been to an immunologist/allergist and that I have a "mast cell disorder" that became evident as I started having anaphylactic or anaphylactiod reactions to various medications and all CT, MRI, ERCP, IVP contrast materials that use mast cell reactions for contrast (pre-medicated or not) and the documented recommendation by the last radaiologist who had to deal with one of these saying "only on the threat of end of life" should I have contrast. So now I wait. I told the oncology group I didn't care if I had a PET scan or not, I needed to find out - but now they are going to appeal (another at least two weeks). They must have bought interest in the PET machine so they have to use it! :) I hate insurance company folderol, I used to be a manager for a BCBS so I know its all folderol. Anthem has a especially bad reputation for refusal of services but they bought out the local BCBS so there we are.

I then went to work, and the boss had decided to "shake things up a bit" by rearranging our decidedly unworkable work areas. Yeah for me I get a private office area!!! Boo because everyone else gets moved to communal work areas, including the guy who had my new office. I know it is because we are ramping up to a new platform, and I am supporting the old platform. Life moves on - but since I won't be here for moving day, I packed up my desk so someone else would not have to.

Maybe that's what set The Headache off. In spite of the goof with Anthem (bless their stingy hearts while they outsource American jobs to the Phillipines) I was in a pretty good mood yesterday, but I know that physical activity can set me off, and boy did it!

I left work at around 4:00 pm because The Headache was pounding, but I thought I could make it home. Nuh uh - I was halfway through town when The Headache pounced, ramping up to full glory in four quick throbs. I drove myself to the ermergency room, and I'm not quite sure how I got there. The pain was so severe, I debated pulling over and call 911 but remembering where I live I thought it would be quicker to drive to the ER, which was 30 minutes crosstown. I was at the "Oh God Oh God Oh God" level of pain and threw up all over the interior of the car just a block from the ER. I was in bad enough pain and unfortunately looked bad enough that the other ER patients waiting in line to sign up parted like the Red Sea for Moses. One sweet lady actually told the ER clerk that I needed to be seen first. At this point I was in such pain that my arms were shaking and my legs were starting to go and tears were dripping down from my bad headache eye.

Generally at this point I am at home where I am not under the observation of others. I have trouble talking and thinking when The Headache is at full pain. I have been hoping that The Headache had lightened up, but no deal. This was The Headache telling me I was a fool! Bless the emergency room people they got me back to triage and then to a room, but it was another 30 minutes (at least it seemed like it) until they got medication to me. They tried oxygen through a cannula because they thought it might help the pain, but it was too little too late. Then I had a headache cocktail of phenergan, Benedryl, torradol, and fentanyl. This allowed me to lay still, but the pain kept pounding on, just a little under the maximum. I think that is when the doctor came in and asked me what else they could do (this aggravates me somewhat - I know they don't see a lot of people with hemicrania continua - probably none - but I am in such pain when The Headache peaks out I can't think). I beleive we decided in consensus for some solu-medrol and more fentanyl. This brought The Headache down below a nine on my personal pain scale, and dropped my blood pressure a little. At least I could think! And I had some self countrol - not rolling around in pain for all to see!

My brother got a friend (thank you Bean!) to drive him to Springfield to pick me up, and drive me back home in the vomit car. I was discharged from the ER at 7:00pm and I slept off and on most of last night and have gotten up this morning early because The Headache is at the bruised brain stage. It hurts to look out of my left eye, it hurts to move my head, and it hurts to think. I have a meeting this morning at 10:00 that I need to attend and I am hoping I can make it.

I am thinking of getting a MD visit with my personal physician this afternoon and seeing if I can get a couple of extremely strong pain pills to carry with me. With the nausea issues, I'm not sure if I would be able to keep them down, but I fear being in places I can't get to medical care in (such as airplanes) when I am get in such pain so quickly.

Sigh. I think The Headache is up to its old tricks, two bad headaches in a few days, one off the scale. Guess I am glad I passed the psych eval.

Oh, and by the way, artwork that I use that is derived from someone else I generally (if The Headache is cooperating) put a link on the artwork to where I found it. So just click on the artwork if you want to see in original context.

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!