HIDA (Hepatobiliary) Scan Results - Not Good

As you may recall from this post, I've been dealing with some mysterious, intermittent abdominal pains since August 9th of this year.  At first, it was just a discomfort and I blamed a virus I'd apparently caught, since I had a sore throat for a few days after my husband got sick.  However, the pains continued and I couldn't make heads or tails of the cause or triggers.  

On Friday, August 20th, I was at work when a particularly painful episode snuck up on me that afternoon.  I headed to the Emergency Room.  The tests came back mostly normal, but the abdominal ultrasound revealed "possible sludge" in my gallbladder, which my internist doubted could have anything to do with my particular kind of pains.  The gastroenterologist I saw on his recommendation had me try skipping my probiotics for a while.  When that didn't work, he ordered a HIDA scan to check my gallbladder and liver functioning, as well as an EGD to check things out, since my blood and urine tests revealed nothing.  

Meanwhile, per Don's suggestion, I had stopped drinking the water and coffee provided in my office by my work.  Our building was built in 1976 and I noticed a long time ago that on Monday mornings, the water from the kitchen sink really stinks, even after washing and drying my hands.  Our drinking water is UV filtered, and doesn't stink, but I've learned that UV doesn't remove all contaminants from water.  I also noticed that I wasn't having episodes on the weekends or on days when I'm not at work, which we both thought was a strong case to avoid SOMEthing at work.

So, as of Wednesday, October 27th, I believe, I have been avoiding the work water (I bring my own supply in a thermos), and for the most part, I've been without my afternoonly abdominal pain episodes (that start around 2:30pm or so).  I started looking into possible contaminants that may be affecting me, though apparently not all of us in the office are doing as poorly as I am.  I'm open to the possibility that my body has some defect that makes me especially susceptible to problems.  At any rate, I brought this list of possible drinking water contaminants and their health effects to my fibro doctor and told him about the absence of abdominal pain episodes while not drinking work water.  His immediate suspicion was excess copper from old plumbing in the building, possibly causing problems in my body.  He urged me to discuss the problem with my work and get the water tested.  

(He also suspects formaldehyde in the air (from old insulation) or some other air contaminant that could be contributing to my daily voice degradations that also happens only on days I go to the office.  But that's another story for another day.)

I brought my concerns to my human resources manager and urged the company to take some action to find out if the water is safe - not just for myself, but for the entire office.  She agreed to look into it.

In the meantime, last Tuesday night, around 5pm or so, I was in the office, both shivering and sweating at the same time, wondering if I'd caught the flu or was having a fever for some reason.  I went home to rest and still felt awful in the morning, so yesterday I stayed home, still unsure what's going on.  I even had to run to the bathroom for fear of vomiting, but it wouldn't happen.  Then, oddly, for the first time after a couple weeks now of not drinking work water, my abdomen was in severe pain.  I couldn't even straighten up to walk.  I was also starving, so I fixed myself a healthy lunch salad and tried to rest a bit.

Well, yesterday was also the day I got a call from the gastroenterologist's office regarding the test results from my HIDA scan.  I expected to hear that all was normal, especially since a nurse was calling to report the results (and not my doctor), but she said my gallbladder isn't functioning  very well at all.  My ejection fraction was measured to be 16%, which is less than half of a healthy gallbladder - 36%.  She also said that I should have my gallbladder removed because of this.  I gasped.  I was so shocked to hear all this.  She couldn't tell me why my gallbladder contractions are not effective.  I had to have another ultrasound just before the HIDA scan to ensure I didn't have gallstones, so I assume I still don't.  However, nobody reported about that test.  I asked for a copy of the test results to be mailed to me so I can see all the details.

While I wait, however, I did a search on copper and gallbladder and found that excess copper in one's system can cause a gallbladder to become ineffective.  Not only that, too much copper in one's system can cause all sorts of damage, including liver problems and neurological symptoms.  Wilson's Disease also came up a lot in my research.  It's a hereditary disease that causes the patient to be unable to rid the body of excess copper, and if left untreated, can be fatal. 

I decided I need to understand what's really going on here.  Is my gallbladder just faulty for some reason, or is something causing it to fail?  Is that something too much copper?  Is this copper coming from drinking water?  Can I treat this, or do I really need to remove my gallbladder?  Will removing my gallbladder solve my problems, or only remove one of the symptoms of my bigger problems?  What the problem stems from brain damage from my concussion?  Is there any way to find out if that's the case?  Can anything be done about that, if that's the case?  Will anything else go wrong if that's the case?  Is any of this related to my other symptoms, like the new Erythema Nodosum on my legs?

I sure hope medical students are required to take some detective classes in med school, because I  require some deduction and thinking to be done.  I'm not willing to go under the knife so easily.  I've read that up to 40% of patients who have had their gallbladder removed continue to experience abdominal pain and nausea.

I would love to have an easy, cut-and-dry diagnosis that makes sense and for which removal of my gallbladder would solve my problems, but I'm not convinced of this yet.  Stay tuned as I learn more about this all.  If you have any experience with any of this, please feel free to share.

Fright Morning

I just survived a harrowing ordeal.  It has nothing to do with Halloween or the various seasonal pranks or visions of ghosts or demons or anything like that.  I just experienced an awful episode of sleep paralysis.


The Real World:
Here's what happened.  I got up just before 6am today to go to the bathroom.  This is not unusual for me, but getting up does frequently interrupt some of the best possible sleep I get, which occurs in the morning hours.  This is why I tend to get up for work around 8am and usually still feel a bit like a zombie for several hours while my stiff muscles thaw out a bit.  

Anyway, after the pee break, I got back into bed and tried to get comfortable.  It has been raining all night, but softly.  The wind, however, was still howling wildly outside in frequent gusts.  Today is also garbage day in my neighborhood, so the trucks' brakes can be heard in the distance.  

I woke Don up with my pee break, so he decided to start his day.  After a half-hour or so, I finally fell into a very light sleep, waking up periodically with Don's moving around the house and showering and such.  At 7:30, Don gave me a kiss good-bye and went off to work.


My World:
Sometime after the kiss, I fell asleep again, knowing that I only had a few minutes before having to get up for work myself.  I dreamt some usual nonsense, then "awoke" to realize I was in bed, looking at the door, the ceiling, my own outstretched arm.  

I tried to move but noticed that I was not only numb, but tingling.  My ears picked up sounds that I knew couldn't be Don's voice, but somehow sounded a bit like it - like he was talking to someone on the phone, from another room.  I tried to call out to him to help me and heard myself struggle to get sounds out.  I recognized this as sleep paralysis, but felt unable to shake free of it.  I fought and fought to move my arm, only to see it lying there in its original position, despite my firm belief that I had managed to move it just a bit.  My ears screamed with tinnitus and I felt the cold numbness and tingling in my entire body.  I looked around the room, seeing changing spots on the walls, shapes that weren't what they should be, and knew these were signs that I was not fully conscious.  Nonetheless, I fought and fought to move and scream.  

The strong winds worried me, as I thought our patio furniture might break a window.   I worried that I would not wake up in time to go to work or at least notify someone that I'd be late.  I worried that I might choke myself on a heating pad cord that was not even in the bed, but that I "saw" and "grabbed" with my hand.  I tried using the smell of a hallucinated lotion bottle to wake me up.  I tried waiting patiently for the paralysis to end while my ears and eyes experienced things I knew to be false.  I kept drifting off and coming back into what I thought was consciousness, only to realize each time that I was still trapped in my own corpse-like body .  

My patience wore out after a few times and I struggled again, determined to break through the paralysis and get myself out of bed, to no avail.  This went on for what seemed like ages, but could not have been more than an hour, as my release finally arrived at 8:20am.  There was no mistaking this for paralysis.  The tinnitus was gone, the tingling, cold numbness was gone, and the room looked a lot less surprising.  It was almost like the end of a violent storm.  I was finally awake.  What a relief!  If there was a way to kiss the ground of consciousness, I am going to be doing that soon.




Have you dealt with episodes like this?  What do you think is the cause of it?  I was sleeping on my back at the time.  The amount and quality of my sleep varies from night to night, and I have plenty of stress with all the pains, fatigue, responsibilities at work and home, weight gain struggles, and new, yet-undiagnosed symptoms for which I will soon have more "fun" tests to go through.  I've had a concussion, too.  I'm also on plenty of prescriptions to try to treat my many symptoms of Fibromyalgia.  

Some or all of these could be contributing to this.  Or it could just be a fluke thing.  Whatever it is, I'm not looking forward to the next one.

What's Better with Me & Magnesium

We, chronically ill folks do a lot of focusing on the things that go wrong in our worlds.  I think it's time to address what's actually going right, despite my health problems.

Firstly, I've noticed that the tinnitus has improved recently.  My ears are not "ringing off the hook," as I like to say, the way they used to for weeks on end.  I had a very hard time hearing and concentrating with all that racket in my head.  I also worried, however illogical it may be, that the increasing instances and volume of the ringing meant that I would eventually progress into a single, solid, ring - deafness, essentially.  I would hate to miss out on all the great sounds I am able to hear now.  Having sustained a concussion, along with having Fibromyalgia, I'm not exactly certain why the tinnitus got so crazy, or why it's better for the moment. 

Next, my migraines have finally calmed down enough that I'd forgotten a bit about them.  Several weeks ago, they were coming and going so frequently I might just consider them one, long migraine with off and on pains.  I blamed them on weather changes, hormonal fluctuations, and some other factor that was the straw that broke the camel's back and triggered them.  

Another problem I'd been having for weeks on end is an underlying nausea.  I blamed the meds and supplements.  I take lots of both of them every day and can only imagine I have a bunch of little pills sitting around in my stomach after taking them.  I take my supplements right after breakfast, so they have a bit of a softer landing in my stomach, in the hopes that I won't be so nauseated.  Sometimes, though, I still have that awful feeling that I might have to vomit.  I've learned to recognize the "fake nausea" feeling - one that will not likely result in any vomiting - and distinguish it from the "real nausea" feeling - one that gets progressively worse until some vomiting is done.  The latter recently came with a terrible migraine headache, and I sure did puke from it!   

When I switched up my medications last February, it seemed the adjustment period affected many of my symptoms, including the quality and quantity of my sleep.  There were a couple of completely sleepless nights, and many nights of only half a night's sleep or less.  However, today, I feel that my sleep has finally improved for the past few weeks.  I'm taking Sonata instead of Ambien, because the Ambien seemed to keep me sleeping far too long in the mornings.  I could just blink and start dreaming in the mornings, but in the night I was still kind of wide awake until the drug kicked in.  With the Sonata, however, it seems the morning "hangover" is not a problem for me any more.  (Of course, this morning was an exception - I felt so sleepy, but I had a full night's sleep.)  My body is finally adjusting to all the medication changes and able to sleep.  It's lovely to be able to sleep again.

The pain in my upper back on the left side is finally starting to feel better, although I'm not quite through with it yet.  Each sneeze sets me back with excruciating pain that lasts several hours all over again, but after those episodes (I had one last night) I seem to be doing okay with it.  It's there, but it's diminished.  I'm still not sure if there is or was a crack in my ribs, but with my FM pain amplification, I wouldn't be too surprised if it was simply a minor muscle issue.  Perhaps a pulled muscle in a specific spot, between a couple ribs is causing this problem.  At any rate, it seems the treatment for either of these is pretty much a wait and see thing, especially if it's not an emergency situation.  I'll continue to wait and see on this.  Hopefully I won't be sneezing too much. For some reason I can't get away with a single day without at least one or two sneezes, but at least I'm not dealing with all the allergies or a cold, like my poor husband is right now.

I would like to claim that taking the Magnesium Malate twice a day is helping me with these and possibly other symptoms.  I've been on it for months now - perhaps it's finally making a difference.  I've been researching magnesium recently and there is a lot of relevant information about it, especially with relation to various health problems, including: Asthma, Migraines, Fibromyalgia, Diabetes, various heart problems, high blood pressure, Epilepsy, Autism, ADD & ADHD, various digestive disorders (including IBS and Crohn's Disease), Multiple Sclerosis, and Premenstrual Syndrome.  

I can only wonder why magnesium supplements are not the first order of treatment for all these health conditions!

My guilty pleasure, a daily spoonful (or so) of natural peanut butter is also adding to my magnesium intake as well, along with a healthy fat to help my body absorb it, too.  I also like olives and olive oil, avocados, and salmon, which also contain healthy (unsaturated) fats.

Certain conditions deplete magnesium in the body, causing a deficiency and further problems.  Calcium supplements usually include some magnesium as well, to help you absorb the calcium.  Calcium is apparently an antagonist, which means that if you have too much of it in your body, your magnesium levels get lowered, so I also stopped taking the calcium supplements recently, as a little experiment to see if the magnesium I'm taking could be put to better use in my body and help alleviate some of my symptoms. 

I am no doctor, but I know that I'm most responsible for my health, so I do research on my own and do my best to interpret and apply it, with the help of my professional medical team.  Nobody is going to care more about me than my own self and I don't expect anyone to.  Everyone has to look out for Number One before they can help others.  Do your homework and see what works for you.  

I share whatever I learn with my readers, so they can start thinking about the things that might be helpful for them.  Use those search engines and definitely discriminate based on the motives of the writers.  If they are trying to sell me a product, I move on to the next resource. 

If you have any information you'd like to share, please feel free to comment and provide your links.  I'm eager to learn how best to take care of myself.

Dyslexia & Dyscalculia

I've been accidentally flipping numbers around at work like mad lately.  I'm finding myself spreading "sorry"s all over the place because I keep referring to the incorrect reference numbers in messages. 

What's up with this? I've never been plagued with dyslexia as a kid.  In fact, math was probably my best subject through high school.  (I aced every year, including the AP Calculus I took in Senior year.)  I can only wonder if this is yet another way my concussioned and fibrofoggy brain has decided to vex me.  With the supposed ADHD affecting my concentration, should I consider this number flipping an extension of that problem?

During my self-analysis, I found this interesting term and article: Dyscalculia. Particularly, I notice "Dyscalculia can also occur as the result of some types of brain injury."  Under the symptoms listing I also notice difficulty with judging time, which I have also noticed in myself lately (or for all I know, maybe it's been going on for years now).  I also noted in my journal recently that I had repeatedly noted the right side, instead of the left side, had been bothering me lately.  Repeatedly.  Who gets left and right confused as an adult?  I guess it could happen to anyone. 

I could be reading too much into this.  I'm one of those kind of people who tries to be vigilant, but sometimes ends up being neurotic.  That's all a matter of opinion, though, right?  Can you relate?  What's your feelings on this?

It's Time for Some Changes

I went to see my neurologist this morning.  Basically, since the end of December, when I last saw him, I had one great month (remember when I was giving away my "spoons"?), and now a kind of shitty month (now it's more like: "hey, brother, can you spare a spoon"?).  

In my little fibro-world, when things are mildly acceptable, I am elated about it.  I get to smile and laugh and joke and even enjoy some things.  But there is some sort of threshold in my pain tolerance - and I guess everyone has one - when I keep trying to just buck up and "make it, Champ!" but end up sort of a quivering mess.  

I know it may seems silly to most "normals" out there that a backache or some jaw pain or some insomnia can cause me to have a major meltdown, but throw a few of these symptoms together, multiply the intensity several times, and leave them to worsen over a period of not hours, not days, but weeks and even months on end of constant, chronic, unrelenting symptoms, suddenly retaining sanity becomes a real challenge.  Throw into the mix the fact calling in sick for several weeks straight is simply not an option, especially with medical benefits for both myself and my husband riding on my performance and full-time status.  Let's just say it's a character builder (and I've got character oozing out of my ears).

Anyway, after a somewhat less snarky explanation of the above, my doctor offered me some options, which I agreed to try.  

Since my Tramadol doesn't seem to be helping me with pain any more, and since there is a danger of serotonin syndrome if I increase the dose and continue taking Pristiq, I'm now going to try Darvocet for pain.  Darvocet, I was promised, would perform much better on all kinds of pain, but it may cause side effects, especially in sensitive me.  After the description, I told him that it sounds just like the "magic wand" I need!

Since the Ambien I've been taking (only 5mg per night) always seems to want me to sleep for 12 hours (no exaggeration), and also since I've had problems properly waking up after those 12 hours (I have these weird, lucid dreams in the mornings), the doctor is having me try Sonata.  He tells me that Sonata will allow me to wake up more nicely in the morning, while still helping me to get to sleep in the evenings and in the middle of the night when I toss and turn from pain. 

Finally, and this one was the most difficult decision for me, because of my severe concentration problems at work and my tendency to be easily distracted, my doctor offered me a prescription for Ritalin.  My job as Senior Business Analyst in IT requires a lot of abstract thought, sometimes with multiple steps having to be played out in my head before taking action.  I've always been a diligent worker and am proud of my career progress.  However, at times I feel like a completely different person, trying to do Benia's job.  All it takes is one, quiet side conversation, whether it's about work or personal stuff I don't even care about, I cannot help but hear a word or two, then POOF! - situational amnesia sets in.  I can't remember what I was doing or what I was about to do, or why I picked up a pen or what I wanted to type or anything.  I stare and stare at my workspace, hoping something will come back to me.  Sometimes, it does, but other times, I have to let it go and do something else until I find my way back to it.  

That is so unproductive, and since I tend to have a lot of tasks assigned to me (as the expert or specialist, or person assigned to a project, etc.) I become this bottleneck for projects.  When my whole department has to delay a software release because I'm two days behind, I feel the stress.  I'm not a slacker and I can't tell what my coworkers think of me.  Not all of them know or understand about my health problems.  Well, at any rate, because this is such a big deal to me, I decided I should try the Ritalin, once and for all, and see if it's good, bad, or doesn't do anything for me, just so I know, once and for all.  The Ritalin is not replacing anything I'm already taking, so, unfortunately, this is adding to my mix of drug treatments.  However, if it helps, it will make a world of difference for me.

Each new drug will be tried one week after the previous one, so I can judge its effectiveness without having to guess too much which drug is doing what to me.

Wish me luck.  If you're a fibromite (or someone who has had a concussion, like I have), and you've tried any or all of these medications, let me know your experiences.  Every patient is unique, but I'm interested in knowing what they did or did not do for you.