Fooled You! (it pays to do your research)

Wait for it . . . . there's a punchline coming. 

Here's the set up to the joke:

3 years ago I passed out and had a seizure while a nurse was drawing blood.  Got an immediate referral from my GP to a neurologist in town, and thus began a new chapter in the ongoing love/hate relationship with doctors in general.  We'll call that chapter "The Blackmailed Guinea Pig".

Fast forward through EEGs, MRIs, CT scans, tilt-table tests, heated arguements with two nurse practitioners, six anti-seizure drugs, a veritable plethora of anti-seizure drug reactions (including, but not limited to: killer temper tantrums, headaches, kidney stones, difficulty walking, insomnia, night terrors, fainting, seizures, palpitations, tremors, acne, and slurred speech), and a referral to a cardiologist.

In the meantime, I continue to talk myself blue in the face about inconsistencies in the diagnosis and what I know to be true for me.  I do my own research, looking for the answers I don't feel they care to know.  I play along because I have to, growing increasingly frustrated and angry with the medical establishment as a whole despite once aspiring to be one of them.  We'll call that chapter "Die, Scum-Sucking Hippocratic Hypocrites!" (co-titled "I Need A Cookie, STAT!")

And I find a series of professional articles and studies that start to answer some questions.  Finally.

This excerpt from The differential diagnosis of epilepsy: A critical review  (S. Benbadis, Epilepsy & Behavior, Feb 2009) is a great lead-in to the punchline:

The wrong diagnosis of epilepsy is unfortunately common.  Of patients diagnosed with epilepsy who are seen at at epilepsy centers, 20% to 30% are found to have been misdiagnosed.  This percentage is astonishingly consistent across centers, countries, and continents.  Psychogenic nonepileptic attacks are by far the most common condition found at referral epilepsy centers and epilepsy monitoring units, though syncope may be more common in a general neurology practice setting. . . As is true of other chronic conditions (e.g. multiple sclerosis), when a wrong diagnosis of epilepsy has been given, it is easily perpetuated without being questioned, which explains the usual diagnostic delay and its consequences. . . the delay in diagnosis remains long at about 7 to 10 years.  This suggests that neurologists may not have a high enough index of suspicion to question the diagnosis of "seizures" when drugs fail.

[At this time, I'd like to point out that 1) I reported a family history of syncope, 2) I received the cardiologist referral because of the syncope, and 3) I was forced to try a number of anti-seizure drugs solely to control the syncope.  Are we talking a low index of suspicion here or just plain medical interdedness?  One wonders.]

And now, without further ado . . . I present to you the punchline . . . [drumroll, please]

Diagnosis: NO NEUROLOGICAL DISORDER PRESENT


Die, you scum-sucking hippocratic hypocrites . . . I'm off to have a celebratory cookie!

My Sentiments Exactly (seizure stuff)

Regular readers (ha!) know by now that I think my neurologist intentionally ignores me because he enjoys using me as his own personal pharmaceutical guinea pig.  I think he's The Debbil.  I strive to escape his eeeevil clutches.

To wit, I was skimming through a peer-review report during some recent research when I came across a summary of a study about what epileptic patients think about having versus treating their "disease."  [A peer-review report is a summary of specific studies that have been done, what the results were, and may also include what needs to be done as a follow-up--either more research or a change in procedure somewhere.]

I highlighted the good, reader-friendly parts in red:

Patient-perceived risk associated with epilepsy and its medication treatment

Regardless of the expert advice of health care practitioners, it is ultimately the patient’s decision how to best manage his or her condition. This decision can be influenced by the perceived risk of both the disease and its treatment. The objective of this study was to develop a survey to evaluate perceived risk associated with epilepsy and its medication treatment. Risk was evaluated in five domains: performance, financial, social, psychological, and physical. A 40-item patient-perceived risk questionnaire was developed and administered to patients at one university-affiliated epilepsy clinic. Pearson correlation and regression analysis was used to identify significant components of overall perceived risk. A total of 64 patients completed the survey. Performance and physical risk significantly explained 34% of the variance in overall perceived risk associated with epilepsy. The overall perceived risk associated with the treatment of epilepsy was explained by performance, physical, psychological, and social risks (r2 = 0.386). Thus, the treatment of epilepsy poses more challenges for patients to maintain their lifestyle than the disease itself.  (Copyright 2009 Elsevier Inc. All rights reserved.)

**  **

The Debbil chases many souls with his prescription pad . . .

The Pills Sleep with the Fishes!

[cue lights, camera 2 in close, cue theme song!  We're on in 4 . . . 3 . . .2 . . . ]

Greta: Welcome back!  This is Name that Show, and I'm your host Greta von Bierstein.  With us today is faaamous blogger Beth.

Greta: Thaaank you for coming today, Beth.

Beth: No, thank yooou, Greta!
[both ladies smile falsely]

Greta: Let's cut to the chase, Beth.  In your blog, you've written a number of posts describing the various misadventures you've had with neurologists, medications, even going so far as describing--in detail--seizure episodes you've had while oooon anti-seizure pills.  Do you write these posts for personal reasons or are these part of a public awaaaareness outreach?

Beth: Well, there is a sort of catharsis in writing blog posts about these issues.  One might notice that most of those posts are listed as "rants.," largely because of either a side effect of the medication or from the near-constant frustration of dealing with doctors who refuse to believe I'm not a text book case study.  But there is also a kind of public outreach involved, if that's what it could be called.  I hope that there are others who either might be able to learn from my experiences or simply take comfort that there is someone else going through the same ups and downs.

Greta:  Fantaaastic.  That's soooo inspiring.

Beth: Yes, I try.

Greta: So tell us, Beth.  Has this "cartharsis" been the reason behind your recent "glooow?"  The public has noticed a draaastic change in you the last few weeks and we aaaalll want to know what your secret is.  The color in your cheeks, the happiness, the over all sense of joie d'vivre that just eminates from you like rays of sunshine and looollipops--what is the cause?! 

Beth: Oh, my, yes!  My [finger quotes] secret [finger quotes] is really very simple.  I put out a contract for my neurologist.

Greta:  As in you hired someone to kiiiill him?

Beth:  Yep.  I'm happy to say he sleeps with the fishes.  I've been walking on air ever since--I highly recommend it as the best stress relief EVAH.

Greta:  [laughs] You're so witty and imaaaginative!  Okay, I'll play along.  To think something so simple, so . . . so mundaaane could cause such a change!  [insert sly look askance]  Are you suuuure this is the ooonly reason you're so happy?  I have to wonder if a pair of cement shoes can also be the source of your reported sleep-filled nights, your increased activity, your laaack of dizzy and/or seizure spells?  Clearly your sense of humor has returned, aaaand on top of that you've reportedly been really, reeeally productive lately!  Are you also taking some sort of supplement?

Beth:  I should have known I couldn't pull a fast one on yooou, Greta. No, I'm not taking anything . . . in fact, I'm not taking my anti-seizure drugs at all!

Greta: Reeeally?!  But I had heard reports that your neurologist was blaaackmailing you into taking various drugs?  What did he say when you told him you refuuused to be his guinea pig?

Beth:  Oh, Greta.  [shakes head]  He didn't say anything.  Well, more to the point, I couldn't make out what he was saying between the gag and the splash!  Ha ha.  Ha ha ha!  Mwahahahahahaha!!

[the crowd goes wild]

Misadventures Pharmaceuticals open for business!

Not to keep harping on [boring, repetitive, useless] medical crap, but I just now was taking my "mid-day" drugs and realized the following:

For someone who doesn't like to take more than a couple of Advil for anything less than, say, bleeding out of my eyes, I am carrying a freakin' hideous amount of drugs.

Check it:
Betamethisone ointment (for a wicked case of poison ivy--finished up the steroids last week, btw--I got a scar, too!)
Semprex-D (for chronic allergies)
Lamictal (anti-seizure test drug)
Levaquin (to combat a suspected lamictal side effect)
Ibuprofen (also for suspected lamictal side effect)

Oh, and btw, that levaquin stuff has a possible side effect of torn ligaments . . . even months after you finish taking it!  Let me tell you (again) how happy I am to be the neurologist's guinea pig:

[edited for language]

Next Up: Test Drug #4 (lamictal)

Yes, truly.  Three months, fourth test drug.  Apparently it just isn't okay for me to say "I know what my triggers are, I average a seizure about once every 18 months without medication, I'd like to stop playing test subject to your whims and go about my life and business, thanks, because frankly, I've had MORE SEIZURES ON ANTI SEIZURE DRUGS THAN OFF THEM."

But, no.  We must press forward, apparently.

At this point it's turned into a game to see which one of us caves first.  Will the doctors throw their hands up in the air in a gesture of futile disgust and say "We give up!", or will Beth (me, the patient) succumb to their devious plotting and live out the rest of her days as a chemically-induced zombie (because this is "better" than living with "uncontrolled" seizures???).  Stay tuned . . .

So far I'm 3:0--not that I think about this as a game, it's just gotten to a point of ridiculousness where I either need to laugh about it or give up and cry.  I hate this.  I hate that I have to go through this.  I know my triggers, the medicine makes me worse.  I hate playing guinea pig, where whatever these things are, I'm having strong reactions at the lowest dose possible almost immediately. 

And still, they keep having me take different meds, to see if they'll "help control my seizures."  I feel like a fish trapped in a barrel, and they're shooting at me blindfolded with whatever ammo they can get their hands on.

This week they have me starting Lamictal.  I looked it up on an NIH online resource (as I do with all of them before I start taking anything), and this is the FIRST SENTANCE:

Lamotrigine [the generic name] may cause serious rashes that may need to be treated in a hospital or cause permanent disability or death.

Should be an interesting week. . .

Oh Lawdy, I do loves a good awguement! I do!

Doctors really must think their patients are idiots.  But then they don't really take the time to get to know us, do they??

Wait.  Amend that.

Nurse Practitioners must think their doctor's patients are idiots.  But then they don't really take the time to get to know us, do they??

This one forgot to ask what my major was (Biology), as well as what any of my interests were in college (kinesiology, sports medicine, health/nutrition . . . I'll stop there).

Let me just say that anyone of proportionate educational background who takes an interest in their own health care is going to ask questions and pay attention to changes in their body when their doctors (and nurses) are using 'you' as a guinea pig. 

Case in point: the last three months I've been playing Test Subject for any number of a series of seizure meds for New Doctor and Nurse--the doctor is pretty much out of the picture at this point--all my comms are through the nurse practitioner.  When the meds don't work, we try a new one.  It's really cheesing me off, but they're basically black-mailing me into it on pain of suspending my driver's license because they can.  I just started trying Drug #3. 

I felt it was necessary to tell Nurse that I had symptoms A, B, and C within 24 hours of taking it. 

She felt it was necessary to tell me flat out "It's not the drug."  I really hate when I am dismissed out of hand like this.  It sets me off.  It is now officially On Like Donkey Kong.

In response to her response, I kindly pointed out to Nurse that the National Institutes of Health listed symtom A as a serious side effect of this particular drug, one side effect which is also clearly associated with side effect D published on the pamphlet provided by the pharmacy when I got the prescription filled, so obviously what I'm experiencing CAN be from the drug.  To which Nurse had no response . . .

 . . . but that may be because our entire conversation has occured by voice mail over the course of 5 days and she hasn't gotten back to me since I basically told her she was useless.  (I didn't really say that, but I bet she has enough edumacation to read between the lines.)

Not my fault I know more than you do, Nurse.  Just sayin'

Syncope, Seizures, Me, and a Puzzle

You know, it's been two years since I went through a pretty thorough round of tests to figure out what was going on in my head to cause the seizures.  And in the end we found out that they're always there in my brain, but when other people can actually see me have them it's secondary to something else going on that allows the seizures to escape their little brain-pen.  So, recently I've been doing a little extra research starting with the diagnosed syncope and the observed cardiac arrhythmia from my tilt table test (which, when I get my act together will be available to view under the medical stuff).  I have a feeling I'm about to add an entry for "cardiologist" to my emergency contact numbers.  Bleh. 

Anywho, here's where we start with this and how it relates to my particular situation:

For the Regular Joes:
Syncope (SEEN-co-pee) is unconsciousness caused by a lack of blood flow to the brain.  It can be caused by an irregular heart beat or a drop in blood pressure.

What Happens:
If someone is passing out from syncope they may have had other symptoms that could help determine the cause:

1.  contributing factors like low blood sugar, dehydration, overactivity, anxiety, overheating, etc
2.  unusual sensations that happen before the syncope like nausea, strange tastes or smells, weakness, etc.
3.  injuries that might have triggered a stress response like accidentally slamming your finger in a window
4.  seizure activity or other uncontrolled physical aspect like staring into space, twitching, typical seizure, or loss of bladder control
5.  post-seizure symptoms like irregular heartbeat, cold and clammy sensation, drowsiness, pain, confusion
other post-fainting symptoms like sweating, paleness, slow heart rate

Common syncope is typically caused by both a slow heart beat and low blood pressure in combination with high volumes of blood being somewhere else. . . like around the stomach for food digestion or in the legs and feet when standing. . . and the heart/veins can't get it relocated fast enough for what the body is trying to do. People who experience this kind of fainting may first:

1.  feel sick to their stomach
2.  feel tired/lethargic
3.  feel overly warm or sweaty
4.  note a decrease in hearing
5.  note a decrease in vision

A person can lose control of their bladder during regular fainting, but if it's accompanied by seizure activity, strange tastes or smells, or confusion upon waking, then the patient likely has a systemic nervous system problem > go to a neurologist.

If a person faints with loss of bladder control, but is alert upon waking, then the patient likely has a cardiac arrhythmia > go to cardiologist.

For the Scientific Joes:
From the National Institute for Neurological Disorders & Stroke (NIH):
Syncope is the temporary loss of consciousness due to a sudden decline in blood flow to the brain. It may be caused by an irregular cardiac rate or rhythm or by changes of blood volume or distribution. Syncope can occur in otherwise healthy people. The patient feels faint, dizzy, or lightheaded (presyncope), or loses consciousness (syncope).

From Hurst's The Heart, 11th ed. (Fuster, et al):
In assessing the patient with syncope, one determines if there were precipitating factors, premonitory symptoms, injury with the episode, seizure activity or incontinence, or a postictal state. . .Brief, unsustained seizure activity can occur with syncope due to a cardiac arrhythmia.

The patient may be incontinent during cardiogenic syncope, but an aura, sustained tonic-chronic movements, tongue biting, and confusion or drowsiness after the event are more characteristic of syncope due to central nervous system disease.  In contrast, return of consciousness to the alert state is prompt after reversal of the arrythmia causing cardiac syncope.  The common faint (vasovagal syncope) results from bradycardia and hypotension caused by excessive vagal discharge.  It is often associated with some precipitating event such as a "heavy" meal in a warm room and has brief premonitory signs and symptoms such as nausea, yawning, diaphoresis, and sometimes the feeling of decreased hearing or vision. . .Following a fainting episode, the patient may be pale and diaphoretic and have a slow heart rate.  A history of similar episodes during the preceding several years is common in patients with vagal syncope.


Where I Fall on the Checklist of Symptoms:
1. triggers such as low blood sugar, dehydration, overactivity, anxiety, overheating, etc = CHECK!
2. experiencing strange tastes or smells, weakness, etc. before passing out = NOPE!
3. injuries that might have triggered a stress response = CHECK!
4. typical seizure, or loss of bladder control = (not consistently, but . . . ) CHECK!
5. post-seizure symptoms like irregular heartbeat, cold and clammy sensation, drowsiness, pain = CHECK!
6. post-seizure symptoms like confusion = NOPE!
7. other post-fainting symptoms like sweating, paleness, slow heart rate = CHECK!
8. preliminary common syncope symptoms of nausea, overly warm, decrease in hearing/vision = CHECK!
9. preliminary common syncope symptoms of lethargy = NOPE!

Conclusion:  Freakin' arrythmia all over the place.  The puzzle now is to find out if Keppra (which blocks calcium in neural pathways to prevent/reduce seizures) is responsible for some of the increased arrythmias (because calcium triggers the heart muscle to "squeeze" and people with adequate or overabundance of calcium don't have arrythmias).

EFF!

I'm going to have to tell my neurologist about my last seizure. (sigh)

This is not a good thing, because come hook or crook it means that I may be out of a job come January.

It works like this:

Part A) If I tell my doctor that I had another seizure (and that I think it's affecting my heart b/c I've been in/out of a-freaking-rhythmia ever since) he's going to notify the state and have my driver's license suspended for a minimum of 6 months. This is state law--drivers must be seizure-free for 6 months before they can have a valid license.

My job is 40 miles away, and there isn't anything like it in the town I live in, NOR am I willing to move within walking distance to a place that is twice as expensive to live in.

Part B) I work with, essentially, a handful of big brothers I never had. They will stop sending me out to do field work by myself, thus I become a cost- and labor-liability, and I'll be stuck playing desk jockey for the remainder of my career, even when my license is reactivated. I'll get bored, frustrated, and generally more cranky than usual and would rather quit to go shill coffee part-time at the nearest cafe.

My annual salary will take a nose-dive and I'll struggle to make ends meet for the apartment, the car, insurance, and utilities. If I can't afford insurance, then I'm up a creek with doctor's bills and medication costs.

** **

I thought I might have two months (the time to my next follow-up appointment) to think it over--to tell the neurologist about my last seizure or not--but I think the issue may be out of my hands now. I think whatever has changed this year with the post-seizure shock stuff may be adversely affecting my heart and I'm going to need to have it checked out. I've been dealing with chest pains, irregular heartbeat, and light-headedness almost everyday since I had that last seizure--two weeks now.

I always knew I'd be checking out early (50s maybe), but this is ridiculous.

Eugene Banks told me that there is no easy transition from full-time career to full-time artist, that I might have to go "cold-turkey" and give up one in order to do the other as I've been working toward. I just thought I'd have a choice about it.

It's Not the Earthquake, It's the Aftershocks (seizures)

I had another seizure last Monday night (10/5/09). . . a mere 6 months or so after my last one while on anti-seizure medication. And it was, to date, the worst time I've ever had with post-seizure recovery. So much so that I remember, specifically, laying there hoping to survive it and feeling like I was truly at the end of the line if I had another one like I felt I was going to.

The irony of having more frequent and progressive seizures since I've been on anti-seizure meds does not escape me.

The added worry of not being able to tell my doctor because my driver's license would be taken away for a minimum of 6 months . . . thus jeopardizing my job and the snowball effect that would then have on my home, insurance, and family . . . also did not escape my notice.

** **

This time the stressors were heat (same as last time) with syncope from a two-fer of up/down motions in a short amount of time (down for a hot bath, up to dry off and get dressed in cool air, sit in front of the heater to put on my socks, up to turn off the heat and head to bed). Just as I turned off the heat blasting out of the window unit in the kitchen, darn thing started my stomach rolling in that particular way that it does before I pass out. I lay down on the cool floor in prone shock position to stave it off and give my heart a freakin' hand and the rolling continues. It's coming whether I like it or not . . . rolling, nausea, my torso feels like there is a film of stretchy tissue paper just under my skin being twisted into a spiral knot somewhere near my stomach and it pulls at the edges of my sides like crinkly spandex. I feel it moving, spreading out toward my legs and shoulders and I'm past the point of no return. Head off to the left side, close my eyes, let it go to get it over with . . . hope that I wake up . . .

. . . I don't know how long I was out, only that I'm now curled up on my right side, my forehead is pressed hard against the junction of the floor and a cabinet door, my left shin is feeling bruised and crushed against the kitchen door jamb. Tired, but okay. Just lie here for a minute, assess if anything is hurt more than that. . .

. . . and then it starts. The after-effects of having a seizure. These are the worst. The chest ache like a hollow spot where my heart should be, the slow build of pain in my lower abdomen (uterus, bladder, lower abs) that grows from a little twinge until it feels like I'm being disemboweled with a spoon ("But why a spoon, cousin?" asks Michael Wincott in my head. "Because it'll hurt more!" says Alan Rickman as he storms off.), guts and stomach trying to evacuate the last molecule of whatever out the nearest exit while I'm weak and tired and cold and ready to pass out if I try to sit on the toilet and simultaneously lean over the sink or tub drain . . . hoping that I don't die and end up like Elvis: purple, bloated, face-down on the floor with my naked ass in the air.

And this time again I got the sweats (second time). The usual cold clamminess slowly warms into a glistening shine then I'm slowly burning up as sweat drips out of every pore in my body, hair soaked and dripping, and I hobble over to the toilet and maintain a sitting position long enough to rest my head on my arm where I can hear the slow methodic thump of my heartbeat as I'm leaning on the sink. I'm coherent enough to count the time between beats . . . one one-thousand . . . two one-thousand . . . three one-thousand . . . four one-thousand . . . (thump). I'm too tired to sit like this, have to lie down for a little bit longer . . .

One hour elapses between the time I hit the floor to keep from passing out to the point that I'm strong enough to get out of my (literally) soaking wet clothes and stumble to bed to sleep the rest off. Off to oblivian and the usual dreamless sleep.

How to Tell You've Forgotten to Take Your Memory Pill More Than Once (recently)

I know I've been a little remiss in taking my head meds every time I'm supposed to this weekend. Here's the dead give away:

10 minutes ago I pulled out my morning dose (1 head med pill, 1 sinus pill) and distinctly remember the sinus pill rolling off my daily planner and onto the floor when I turned to put my purse away, cursing the pill (and myself) roundly because it does this almost every time, but only when I'm not looking at it, and yet I still fail to learn to put the darn things somewhere more secure/level/appropriate.

5 minutes ago I think to myself, "I need to take those before I forget," and start to reach over to my planner only to discover that the pills are no where in site and I have absolutely no recollection of taking them.

He Said/She Said (medical record frustration)

I finally got a copy of my current medical file from the neurologists and read through it last night for the first time. My suspicions have been confirmed:

1. Nurse practitioners (the ones who take down your history) only listen to 1/2 what you tell them

2. Doctors don't actually read what the nurse practitioners record

3. Diagnoses are made according to a randomly generated set of test results and a consultation with a psychic monkey

"You have phasing in right T4 and a splinter in your finger! Lucky numbers: 2, 12, 42, 43, 68"

Dentistal Visits Make Me Unhappy (a theme, by beth)

Dentistal Visits Make Me Unhappy
by beth (age: 32, going on 6)

I had to go to the dentist today for a check-up before I came to work. I saw 4 different people there.

The first lady was the receptionist and she said that I had to sign a new "receipt of statement" (it was pink!) because the office was now going to file my insurance for me, which is nice. She had blonde hair.

The second lady I saw at the dentist office was mean and made me bite down on this red thing that is too big for my mouth, and it cuts the inside of my mouth and makes me gag. She yelled at me because in order to bite down on this red thing in my mouth I have to move my teeth but if I don't move my teeth I can't bite down and it falls out of place. She yelled at me when it fell out of place, too. Then, when she tried taking an xray, I gagged (twice!) and got xrays in my brain. I didn't get to see that picture.

The third lady I saw was the dental hygienist and she cleaned my teeth with a pick that made my teeth and gums hurt, even though she said my teeth were already pretty clean. But this time she used cinnamon polish instead of mint. I like cinnamon better, even though my teeth hurt more. She gave me a turquoise toothbrush!

Then the doctor came in and said everything looked really good and that I should think about Invisalign for my bottom teeth, which are crowded on one side, but I said no. The dentist is very quiet and nice. He has white hair, and blue eyes, and very light skin, and a white jacket. He's like a ghost!

Then the mean lady wanted to make me come back again in six months, but I said no, I'll come back in a year (because I don't like her but I didn't tell her that).

And I'm not doing any more xrays again because they make my mouth hurt for DAYS. And also my teeth hurt, too. And last night I bit my cheek when I was sleeping and that hurts, too.

The end.

A Much-Needed Interruption

**We interrupt your regularly-scheduled apartment wall fixer-upping, sanding, and general Stuff Mayhem to bring you the following announcement . . . **

I'd been having trouble sleeping, breathing, constant headaches, general tiredness and blehness for a long time, though if it got too extended I'd go to the doctor to get checked out and drained of fluids to find out that everything was normal. Did the usual medical circuits to try to figure out the culprit(s) and ultimately ruled everything out except possible new allergies.

I mean, really, I can't breathe! It's like I'm breathing through a straw all the time . . . surely this has to contribute to the headaches and tiredness and general blehness, right? Oxygen is important or something, I understand.

Anywho, I went last week to the allergist (and I SWEAR TO YOU I'm not a hypochondriac at all, it's just medical issues are not that big a deal to talk about for me, and it's been a weird health year or two, so it's kind of front-line, plus the was the LAST doctor visit for all this stuff) and I got retested for just about everything. Third time in about 10 years:

First time (1996-ish): moderately allergic to dust mites and highly allergic (with 4+ delayed reaction) to cats.
Doctor: "Get rid of your cat."
Beth: "No."

Second time (2005-ish): moderately allergic to dust mites but not cats
Doctor: "It's entirely possible that with just the one cat and your following allergy-reduction procedures that keeping the cat was like having an allergy shot every day."
Beth: "Cool."

Third time (2009-ish): highly allergic to dust mites
Doctor: "Since you've been following all the allergy-reducing procedures, you basically need to step it up a bit and dust every week, as well as greatly reduce any dust-collecting surfaces or activities in your home, particularly the bedroom. My advice to you: think "sterile room."
Beth: "Hahahahahahahhahahahahahahahahah!"

So this week my sister and I are taking our semi-annual sojourn to IKEA, where we will both stock up on stream-lined crap we can live without but are going to buy anyway because this year it comes in blue or something . . . and I'll also be loading up on bookcases and glass doors and storage boxes of all types so I can rearrange and address The Worst Offending Areas of My Apartment (also of note, they are in my bedroom--the area where I haven't started stripping the walls . . . yet):

Allergies--Hate 'Em

I. Can't. Breathe.

Stupid turbinates are all swolled up . . . as usual.

Feeling More Like Myself, Finally

So all this time I've been feeling tired and run-down, wearing my Cranky-pants a lot more than any single gal should be . . . generally suffering from malaise and a good case of the Blehs.

Went to the GP, the neurologist (actually, his nurse practitioner), my ENT doc, the chiropractor, and the organic produce section of the grocery store all in an attempt to figure out what's going on and fix it.

Turns out I have a node on my thryoid that's probably nothing (but that I'm supposed to keep "an eye on", even though I end up choking myself from pushing on my windpipe--haha), new allerigies I'll need to be tested for (since the Astelin only works for about 30 mins before I'm all breathing-through-a-straw again), and apparently not sleeping well because my bedroom is too bright.

The one thing I can control right now--the light. Broke down and bought a sleep mask (paid a dollar for it at Michael's--it's Icky Green--my favorite shade), and I feel like such a dork wearing it, but oh. my. god. I'm out like a light and stay that way until the alarm goes off in the morning . . . I feel so much better!!

But you know what this means, don't you? I've found a new fun accessory and now I have to have about 20 so I can coordinate with my pyjamas AND my mood!

I want this one, and this one, and definitely this one . . . to start! lol

Bleh (seizures)

Had another seizure Monday night--the first one since I've been on Keppra, and about a year and a half since my last one. I was in the bathroom, sitting down (on the toilet--the only seat next to the sink) to drain out a blood blister I got on my finger from catching my knuckle in the window sash. For those of you who don't know, there's a huge window next to the toilet . . . I was lucky I didn't go straight back, through the glass, and sever something important in my neck on jagged shards. Scary.

Two new seizure effects this time:

1. Woke up with both my arms tucked against my torso, fists under my chin (this is called "tonic" contraction). The first known observance of this particular action was during my tilt-table test. I wonder if it's significant that I came to still tucked up like that.

2. Came to dripping with sweat--an all-new experience, boys and girls, and one I hope to never have repeated. Even field-working 15+ hours in July in North Carolina I've never actually had water pouring down my skin like that. Yuck! I wasn't sweating before I went out, stopped sweating as soon as I came to, but too tired to do anything but sit there pushed up against the corner on my left shoulder and hope for more breeze to blow through the 3" window opening to help cool me down. What in the hell happened that now I'm sweating with a seizure??

As usual it took a little while to recooperate--those things really wipe you out. Usually I'm okay after 1/2 hour or so, at least enough to move around without assistance. The bad ones keep me out. This one I recovered from fairly quickly, but I was wretchedly tired for the rest of the evening (which is also typical), but the next morning I was still tired, had the shakes and sweats that eating breakfast didn't cure . . . and thus I earned myself a trip to the emergency room.

We don't know what happened. I think the seizure went into a new part of my brain and seriously messed it up for a while. I had high (for me) BP and normal blood sugar when the EMTs picked me up that morning, I practically slept the entire time I was in the hospital, I ate the entire tray of food they brought me for lunch, and just after my meal they tested my blood sugar again . . . now low (but just under normal) and with lower-than-normal BP. They discharged me. With low blood sugar directly after a meal. And BP 96/56.

My neurologist doesn't seem to be concerned. TWO DAYS of physiological weirdness, brought on by this seizure, and he says (via the nurse pract'r) it was probably a one-time thing but to call back if I have another seizure with sweats.

I'm still tired today.

I hate doctors.

Keppra vs. Generic (pay attention!)

Meant to add this a while ago and just now thinking about it WHILE I'm on the Internets.

People who are on Keppra or other anti-seizure meds: do not accept generic from the pharmacy unless it's been approved by your doctor!

I've been on Keppra (brand-name) for over a year now, and I noticed at my last refill that I was automatically given generic meds (Levetiracetam) instead of my usual little orange pills--I had not asked for generic, but we'd switched insurance providers at work and I thought this was perhaps what they'd approved. Figured I'd give it a go to see if it's worth the $20 savings--I had a follow up with my neurologist in just over a month and I'd check with them then.

The interesting thing about me being on seizure meds is that I don't take them for seizures as one may suppose--I'm not an epileptic, but a portion of my brain IS. When that particular portion of my brain is seizing (which is nearly all the time), I have trouble recalling information at best . . . at worst if I'm physiologically stressed (like hit with a dizzy spell from low blood sugar/pressure) the seizures can escape into other parts of my brain like a firestorm and I can be thrown into a full-out body seizure. Basically, though, I think of my anti-seizure drugs as 'memory pills' or 'head meds'.

Anywho, 4 days after starting these generic head meds I noticed I started having trouble recalling when something occured in recent time. A conversation I had that morning was referenced as having taken place "yesterday". A "few days ago" was actually "last month". I was no longer able to recall specific, or near-specific conversation details and had to fall back to my old habits of describing something said in the past in terms of general meaning and contextual cues.

So here I was with generic meds that didn't seem to be working all that well. Being a natural curiosity seeker/scientist type, I took it one step further and stopped the head meds for a week just to see if there really was a difference being on them vs. not taking them at all. Without going into detail, yes there was. So, the generic seemed to be working, but not as effectively as the brand.

Generic medications usually contain identical ingredients as brand-name, but by law they are required to be formulaically different so long as the brand-name is on the market. For things like cholesterol or blood-pressure medications the body sees no difference, but seizure meds are specific to brain function and even a slight change in medication can have widely different effects. I checked in with my doctor and learned that anti-seizure meds should never be substituted for brand-name; in my case, and for most folks on seizure meds, the gap between 80% effective (generic) and 100% effective (brand) is so large it's closer to being on NO medication at all.

Pay attention to your prescriptions, and if you're on head meds too make sure to ask about or inform your doctor if you're taking generic.

For me, at least, it's worth the extra $20 a month to be "normal."

I Feel Better Now!

Turns out I wasn't sick afterall--pulled some muscles in my back and didn't know it--the growing aches and pains in the following days all related back to it. 4 days out from work, 2 trips to the chiropractor--better now but functioning under the motto "have heating pad, will travel."

I read, I watched movies, I knit scarves like a maniac--got 3 done in as many days and wondered if it was possible to get tendonitis from it . . . knitting elbow.

Tuesday was a freebie day--technically I could have come into work, but I had already scheduled that day for a couple of appointments (car repairs, hair cut and color), so I continued to rest my back while I could. Had Electric Blue color streaks put in my hair in the afternoon--the color makes me think of superheroes and spandex.

Just Because There's No Steam . . .

Note to Self:

don't cram a toaster pastry fresh from the T.O. into your mouth until the insides have had a chance to cool

And Then God Said "Take Five!"

So work slowed down and I was cruising along at a normal pace for a week or so, Thanksgiving and Black Friday came and went with hardly any activity (I stirred enough to visit mom for a few hours), and then Saturday I spent 1/2 the day in an intro wire-wrapping class and the other 1/2 painting pottery for xmas gifts. Sunday Pam and I took the kids to IKEA (we both needed some storage items and a few xmas gift things).

I'd been eating well, but I knew I was dehydrated (can't seem to stay on top of it with the weather and the dryness of the house combined) and I was just tired all the time--figured it was from doing nothing for a couple of days.

Monday I went to work. Tired. Dehydrated. Guzzling Gatorade and water didn't help. Monday night I did a load of laundry and carried it all of 30 feet from the car to the house and up one flight of stairs. Stopped to talk to my neighbor Meg and couldn't catch my breath from just the stairs.

Tuesday morning I had some dizziness and obvious arrythmia and by 9am completely ignored a very credible sign that I was having a heart attack. The vice on the left arm. It's like that pressure-pain you get after the pins and needles when some appendage is recovering from being asleep. But there's more pressure. It hurts. Had this happened to anyone else, I would've smacked them on the head and said "Get Thee to a hospital, NOW!" Guess that's the funny thing about having stress-induced arrythmia throughout my life--one can get a little jaded about what is passing and what is not.

I slept most of the day. Because I was too exhausted to do anything else.

** **

Wednesday I was feeling better, but still having trouble--called in again and went to the doctors to have my blood pressure checked. 114/60-something and 72 bpm--normal. EKG and 24-hr EKG ordered (no problems while wearing it, of course), blood tests for thyroid, anemia, other stuff. Ordered to stay home (out of the car) until Friday. If the tests all come back normal, it's back to the neurologist. Again.

Today I'm better, I'm at work. My chest still twinges, was practically humming like I imagine is similar to what people describe as caffeine jitters, but no obvious arrythmia that I can feel. No thumping. No dizziness. Still winded with a flight of stairs, though. Everyone tells me I look so tired. I AM tired . . . my chest hurts and I just want to take a nap . . .