Falling

2012 Not Starting Well

I haven't been posting - too sick or too hurt or too stressed or working too many hours that I shouldn't.  Members of my extended family have been ill, or have found out bad health news, or are just stressed too.  Hoping that their conditions will work out for the best, if mine worsens so be it.

I went to the A-Team (my headache specialist and the headache clinic) this month and they were as kind as always and had some more options for me to try. Every time I go in, my doctor takes the time to review my case and research to see if any new studies have been published before my appointment.  You would think all doctors do this, but in my recent experience I have found it a rarity, so I am pleased that Dr. Hannibal Smith and his team do this consistently.  He also wrote a letter for me to have with me when I do have to go to emergency rooms that gives some basic guidelines to the ER docs on how to treat my hemicrania continua during an extreme pain flair.  He also gave me some literature on HC to go with the letter.  I am hoping this will help both me and the ER docs.  There are so few hemicrania continua patients that the ER docs and nurses treat it as a migraine because that is the headache condition they see most often.

I fell really really hard last Friday down some stairs while I was mopping the floor.  Missed work, and my sister was kind enough to take me to the ER to be checked out.  My lower lip and chin are still numb from the fall - how I hit this I don't know but I broke several of my front teeth and knocked part of a filling and crumbled the side of a tooth in the back.  The docs thought I might have a mild concussion also - I threw up several times during the night while I waited to see if I should go to the ER.  I knocked ribs out of place and was able to crank those puppies back where they should be while I was still numb from hitting the floor.  I have a problem with my ribs going out dating back about 20 years to a fall on the ice.  I think once you injure yourself bad enough the old injury keeps popping up when you try new acrobatic tricks when falling.  I must be made of rubber and bounced pretty well since no bones were broken.

The pain from the fall has been really bad.  I don't seem to be bruised badly - there are a couple of spots that show bruises - but the pain seems to be coming from the pelvic region and my right hip and leg.  My incontinence issues have gotten worse yet again, perhaps from bruising the nerves?  I am going to have to start using protection at night if it doesn't clear up soon, as it is happening in my sleep since my fall.  My teeth hurt but I have a dentist appointment Friday to see what is going on there.  Maybe my major medical will cover part of the repairs - that would be a big WooHoo!!!

I see my PCP this morning to see what if anything can be done with the increased pain and incontinence.  Maybe it will calm down after a week or so.  I seem to only have the sensation of pain, and am not aware that I am having incontinent episodes.  I will just have to move forward and hope that this latest set back goes away after my body gets over the shock of the flying leap and the splatted landing.  Note to self - do not fall with a three gallon bucket full of dirty mop water again!!!  Not only did it through me off balance I had to lay there in that mess and then clean it up and finish mopping.  My feet are so numb I am not sure what made me fall - I suspect mop water sloshed out and I stepped in it.

I plan to go into work today after going to the PCP.   Not sure how I will be doing, but I need to make the effort, because it is not work's fault I am a clumsy oaf!  I also have an appointment Thursday with my urologist to see if I need to continue the intermittent catheterization.  I had a very bad UTI since starting the self-cathing but  this could have been from fecal incontinence or not being careful enough with the catheters.  Makes me cringe to think about it.

I am somewhat drugged - the pain has been horrid in my back and in my abdomen.  For some reason my liver and kidney hurts on the right side and my spleen on the left are terribly sore.  Just what I need, another part/piece deciding it doesn't like me and leading a revolt of the innards!!!  Maybe you can bruise your insides as well as the outside - maybe that's why the ER docs gave me literature on deep contusions??

I hope this post makes sense, as my mind hurts.  I'm going to have to retire from the circus and stop the acrobatic stunts while mopping.  This is the second time I have fallen at the same spot on the same stairs while mopping.  Maybe the root cause is mopping the floor.  Sounds good - I can quit mopping and won't every fall again!  When I win the lottery I can hire maid service to come in and mop and fall for me.  sigh.

IV Practice Pincushion

No Fluids For Me

Have been feeling ill all week.  Just thought it might be the new medication (cyclosporine) or quitting an old medication (plaquenil) or maybe fatigue (because I have been working some longer hours).  Started being nauseous on Wednesday, very nauseous on Thursday (to the point of quitting eating), and thowing up at work Friday and leaving early.  I tried to make it out of town but got sick again a couple of times, and decided I'd better go to urgent care.


I was able to be seen at urgent care right away, and they decided I truly am dehydrated, with orthostatic hypotension and elevated heart rate.  I told them I think I have a UTI but I can't tell because the radiation therapy messed up my nerves so the pain shows up in the wrong places or doesn't show up at all.  I also said it could be pancreatitis but it didn't feel painful enough.  The doctor ordered an IV and zofran in the IV for hydration and nausea control and some blood tests.  Then the circus started.

I am not easy anymore to "stick" for blood or IV's - and I am worse when I am dehydrated.  I know I need IV hydration BUT it is an ordeal to get a vein just to take blood for a blood test, and when they try to thread an IV it is impossible! 

The first nurse tried my right hand - I told her go for it.  She failed after partially threading an IV and blowing the vein (she was a beginner at putting in IV's so incorrectly blamed herself) and called in a second nurse.  That nurse looked over my arms.  I tell them the last time they used a pediatric IV set to start an IV.  I am ignored.  The nurse pokes my left arm and digs, no go on that vein.  Tries another vein on the left arm - gets blood enough for the blood tests (barely) and then tries to thread an IV.  Blown vein again.  Sigh.  Tries a third vein on the right arm this time, it disappears as she approaches it with a needle.  A fourth try in my right wrist that is extremely ouchy but dry hole.  Calls the parenteral nurse with the ultrasound machine.  I tell them - ultrasound techs couldn't do it last time, it was a pediatric IV set that did the trick. 

A third nurse who comes in and looks at my arms decides to get one of the pediatric nurses in to see if she can get an IV started because I am a small person with small veins.  I didn't have to tell her about the pediatric IV set.  The fourth pediatric nurse comes in, looks at my arms, said she probably could get a pediatric IV set started in my left arm BUT the parenteral nurse appears with her ultrasound machine and long long needles so the pediatric nurse does a fade while the fifth nurse tries to get an IV started. 

The fifth nurse tries three times on my left arm and twice on my right arm to get a vein to start an IV- some very deep.  As soon as she would get close to a vein it would disappear.  She got one partially started and tried to "float" it in and blew that vein.  Very interesting - she showed me the difference between veins and arteries on the ultrasound.  Very painful - at this point it is 10 unsuccessfull tries to get an IV in and over an hour of being messed with.  I told the ultrasound nurse I could have had antinausea medication and sucked down 3 liters of water by then, even if I barfed some of it back up!   She gets the hint and goes off to tell the doctor they can't get an IV started. 

I was shaking and my teeth were chattering - I think it was just too much digging around for me.  I can handle about 7 sticks and after that I get really shakey.  It is worse when I am dehydrated to begin with. Big Sigh.

The doctor comes in and says well you won't be able to get any IV fluids today even though you are dehydrated, unless I wanted them to go for the neck veins which he could order. Nope I said - had that tried before as bad as the other veins.  THEN he says - next time you are dehydrated go to the ER don't come to urgent care - they are better equipped to handle someone like you.  He said I appeared to have a UTI and he would prescribe Zofran and an antibiotic.  Boy they were really glad to see me out after that!

I now feel like I flunked Urgent Care.  Kicked out of class for being unruly. I'm in the "somebody like you" remedial course.  Poor nurses all felt bad because of my bad veins.  I felt bad because they had to try to poke my bad veins.  Not sure why my veins are bad and getting worse.  What is more, I started hiving in the arms they kept constricting with tourniquets and poking, and then my face started breaking out in long hives. My face is still swollen and I still have hives on my cheeks, but at least the Zofran has enabled me to keep liquids down and take my antibiotics.  I am more Rene Zellweger tonight than Angelie Jolie because I have puffy cheeks instead of puffy lips.

I am some better today (after a day of antibiotics) but the nausea is still pretty bad.  The Headache was not so good yesterday or today, but I think the dehydration is part of the problem.  Hoping tomorrow will be better!

Saw the A-team this week for a three month checkup on The Headache.  No new recommendations (yeah!) but Dr. Hannibal Smith suggested I see Dr. Jock Biodude again for further biofeedback training.  Told to practice my biofeedback on planes, because I reported issues flying.  I am not a nervous flyer - I spend most of my flight time sleeping.  I think the problem has more to do with carting luggage, getting through security (have to have a manual pat down because of the stimulator), and hurrying to catch a flight, and perhaps a pressurized cabin than any anxiety I might have.  I am sure Dr. Jock Biodude would say otherwise - I must have a deep seated desire to be ill and puke in a stinky airplane bathroom and biofeedback will stop it.

I guess Dr. Jock Biodude needs to make a living somehow but I am not sure if I will make an appointment with him or not.  I missed the last one because I forgot when traveling for work.  I think it was a subconscious desire not to have to sit and hear sports analogies for an hour.  I will have to check my insurance policy - I am not sure if it covers biofeedback, so its a convenient excuse for avoiding further sports talk annoyance.  Three strikes - yyyyooooouu're OUT!

System Down

Missing my Electricity Fix

My stimulator controller is officially broken.  I can have the stimulator set at HIGH, which after a while causes pain from "over stimulation",or I can turn it off.  It is now off.  The Headache pain has returned in all its glory without the stimulator to fool my brain.  I'm trying to go without any medication tonight so I can go into work tomorrow.  Not sure if this will work as I'm not certain I can bear with the pain very well.

I missed work today.  I have been up and then back to drugged slumber most of the day.  I didn't even catch on to the time until a friend called and I happened to hear the phone ring.  It was almost five o'clock - where did the time go?  Strong medication is not always my friend.

My new stimulator controller won't be in Springfield until MONDAY.  That means it will be 4 days until I can get my headache back in submission.  Luckily the A-Team and Dr. Hannibal Smith are on the short list of people that St. Jude works with so the controller is going to be Fed-ex'd to them. 

I may call Dr. Smith and see if anyone there has a suggested strategy to get me through the next few days without a stimulator.  I hate to be just zonked out of my mind for four days - but if the alternative is unbearable pain, I'm going to zonk out!  I'm using antihistimines tonight to see if the pain can be controlled with out the heavy hitters, but it's like trying to put out a forest fire with a water pistol - not too effective.

Hoping everyone else has a pain free Friday and a good weekend!

I Love It When A Plan Comes Together

New Headache Clinic: The A Team

Saw my new headache specialist this week, I think he's gonna be a keeper.  Long interview process for the first visit with both the nurse and my new doctor.  I think I'm going to call him Dr. Hannibal Smith, after the A-Team leader, because he definitely has a plan for treatment.  Instead of giving me the Mission Impossible speech or the One Flew Over the Cuckoo's Nest song and dance he came up with not one, but four different strategies for us to look at!

He knew about my condition (hemicrania continua). He didn't have to look it up in a book or tell me it didn't exist or that isn't what I have.  He said the pain is on the very severe scale of headache pain (which I already knew) and there aren't a lot of medications that work with it, and that it was doubtful that any new ones would be developed because there just aren't enough of hemicrania continua patients to make it profitable.  However, he is going to some big headache conference in a couple of weeks, and he is going to ask some other headache specialists that deal with more hemicrania continua patients to see if there are other treatments that might work, and check on how effective a couple of his ideas might be for HC.  He also said he would check to see if there were any clinical trials I could participate in that might be of help.

A medication change, the addition of Klonopin (clonazepam) at night, is already helping my sleep.  I did wake up at 2 AM like always, but I was able to go right back to sleep - a big improvement over most nights. Hoping I won't have many adverse side effects from it.  I am also going to try taking phenergan/benedryl on a schedule proactively before The Headache gets out of hand.  I have a headache diary to keep, and will start checking to make sure The Headache is still in the three to four day pattern it has had for the last three years.  If so, I will take my phenergan/benedryl combo on the projected bad days not waiting for The Headache to wake up and ruin my day.

The Headache tried to get worse last night, and between taking the phenergan/benedryl pretty quickly and then the Konopin I was able to keep it at a distance.  Hoping that it will stay that way for a while!  Not so good this evening, but maybe tomorrow will be better!  The Legs are better tonight and are not hurting quite as much.  Hoping they will be even better next week.

A couple of the strategies he spoke of I am not so sure I want to try - one was getting Botox injections in my supraorbital nerve, and in my forehead and neck.  Another was getting another stimulator installed in the supraorbital nerve; if I got that I would so electrical I think I would need to get a direct feed from the Hoover Dam to keep going!  He said that Botox helps headaches not only by numbing the nerve, but also prevents the nerves from exuding an enzyme/chemical messenger that tells your brain to have a headache.   Didn't know that, but I don't really want to have a limber neck like Stephanie at Head Wise ended up with!  My Bone Head is too heavy for my wimpy neck already without the help of Botox to make it worse!

They gave me all kinds of information about migraines (even though I no longer have them) which was nice.  I was told to avoid all artificial sweeteners except Stevia, as they all seem to contribute to headache pain.  I don't use artificial sweeteners so I think I am OK on that score. I am sure about 98% of the patients they see are migraine sufferers and they sure give you a lot of really good literature to take home about migraines.  It was very interesting reading, and I learned a few new things about migraines from their booklet.

I give this practice an A+ (so far) and hope that I will be going there for my headache care well into the future.  No perfumed magazines in the waiting room, no perfumed personnel, and no perfumed patients to ruin my morning.  A very quiet and orderly place to go.

I am up late tonight because I delayed taking my medication because I was busy.  Time gets away from me when I am doing something that requires concentration.  Must be my Bone Head at work again!