Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

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No help

GI doc called back Monday, after I faxed her a three page note updating her on what’s been going on the last few weeks and asking her basically “wtf do we do now?”

She was not much help.  She said, in regards to my big weight loss and liquid only diet (on which I am still very gastroparesis symptomatic) “ok, well that works for you so just stick with that”.  Yeah, um, how about some nutritional counseling?  My diet just shifted dramatically, it’s clearly insufficient in a macro-scale since I’m losing weight on it, and god only knows how my micro-nutrition is doing.  But nope, she doesn’t think about or care about that.  Then she went on to her “let’s try Lyrica” thing again.  “So I know you proposed that as a neuromodulator for pain due to the idea that it’s visceral hypersensitivity, but the pain is not my most limiting upper GI symptom right now, right now the things that are making it hard for me to eat and drink enough are getting full too quickly, bloating, horrible heartburn/reflux, and regurgitating food.  So what of those symptoms is the Lyrica supposed to help with?” I asked.

“all of them” she said.

Pardon me, but I believe that is a load of shit.

The most I could find was one tiny study done using pregabalin (lyrica) to modulate esophageal pain thresholds in (a very small number of normal, healthy) subjects who were first “hypersensitized” to pain using an acid infusion: Randomised clinical trial: pregabalin attenuates the development of acid-induced oesophageal hypersensitivity in healthy volunteers – a placebo-controlled study (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04955.x/full).  Go check it out.  The full text is online.

Even with a charitable view that the results of this study are meaningful, valid, and generalizable beyond the tiny little sample they used (and to the unhealthy people who would be prescribed Lyrica for esophageal pain due to supposed hypersensitivity resulting from acid reflux), they just flat out don’t pertain to the limiting, NON-pain symptoms I described to my GI doctor.

So anyhow, I said fine, I’ll try it. She said she’d call it in that night (Monday) or first thing Tuesday.  We confirm my pharmacy.  She says to try it for a few days and then call her at the end of the week to let her know how it’s going.  Tuesday, I wait until early afternoon, haven’t heard from the pharmacy.  So I call the pharmacy, nope, they don’t have a script from her.  I call her office.  They don’t call back.  Wednesday, I call the pharmacy again, they don’t have it yet.  I call her office and talk to her (awful) receptionist.  She says she has to ask the doctor, calls me back and says the doctor mistakenly called the script in to my mail order pharmacy service, which I have NEVER used.  She says they will send it in to the right pharmacy, I confirm the right one with her.  I wait four hours and nothing.  Call the pharmacy, they haven’t received it.  I call the doctor’s office and leave a polite but terse message saying I was supposed to start this Tuesday, blah blah blah.  I get a call from the pharmacy an hour later, it’s ready.

I started it Wednesday night.  It knocked me on my ass.  So sedated, plus a screaming occipital headache the likes of which I have never had, and I have migraines and once had a concussion.  This was INTENSE.  Thankfully, I was so druggily sedated that I fell asleep fast.  Woke up the next AM with nausea, which is atypical for me even right now.  My “baseline” right now (when I’m not taking vomit-inducing zoloft, motility slowing mirtazipine, or haven’t given myself gastritis from salt tablets and fruit juice) is to wake up with an OK stomach that gets progressively worse as I put food into it during the day.  I had to break down and take a half an ativan for the nausea in the AM and another in the PM.  While the headache has eased up on subsequent doses, the nausea has gotten worse.  The sleep has as well.  The second and third nights on it, it sedated me but I woke up very early (like 4:00 AM) and stayed awake.  So that’s not fun.  It’s similar to my pattern on Gabapentin.  Oh and the lyrica is constipating me.

So here’s the icing on the cake.  I called my GI doctor on Friday even though I had only taken two doses at that point, but because we were going to check in at the end of the week.  She never called back. I’d have preferred to consult with her first for compliance’s sake, but since she can’t be bothered to return a frikkin call she told me to make, I’m just d/cing this drug myself today.  It gave me bad nausea last night and today I spent the first few hours out of bed feeling like I was going to faint.

I’m so done with her.  I hate finding new doctors, and finding new GI doctors is like extra hateful, but I will do it.  I know it’s difficult, I know I’m a complex patient, I know that I’ve pretty much exhausted all my options for medication for gastric motility.  I know finding a miracle worker is not going to happen.  But I am not looking for a miracle worker. I’m a realist.  I am looking for a knowledgable, creative, supportive ally in my fight to stay well nourished and to have some quality of life. She is not that.

confounded

I stopped the zonisamide last week.  I also stopped the florinef.  I had to, the nausea and crappetite (that’s “crap(py)” + “appetite”) made it hard to take a med that I was told to take with food to avoid an upset stomach. Upset?  After the last few weeks, I’m amazed my stomach’s even speaking to me.  But it is.

So, I stopped them close together.  And I started them near each other too.  I wasn’t going to because it violated all my training in experimental method but this was my god damned head and the vertigo and headaches were just too much.  So I had been on the zonisamide for just over 1 week.  5 days at 100 mg and 2 at 200 mg.  And I was still having the headaches (a couple of powerful ones at that) and vertigo.  I recall feeling quite horrible and thinking “you know what, I’m going to start this florinef (prescribed after I’d already started the zonisamide, everyone was all on the same page).

And some time later, I noticed I wasn’t having as much vertigo.

And now I’ve stopped both drugs.  And been off both for close to a week.

Guess what’s back.

So…did it
a)  Go away on it’s own
b)  Go away because of the zonisamide
c)  Go away because of the florinef
d)  Go away because of a combination of zonisamide and florinef

My money’s on A.  And not because I like that answer better (although it’s a tie as to whether that one or B sucks more), but because it fits my body so much better for this to be some completely random, unregulable event.   So I’m back on florinef to see what I can see.  Wish me luck.

back from the doctor, or “salt, salt, and more salt”

A woman sits in a doctor’s office on a hot day.  It’s been hot for nearly two weeks without much break – a day here and there where it goes below 90.  She gives her history which includes that she’s been feeling dizzy, off balance, for nearly all of the last 2 weeks (give or take a day here and a few hours there) when she overdid it in the heat the Friday before the July 4th.  She’s not sure that the two are related, but that was the only precipitating factor she can think of.  Migraines don’t last this long and she’s not having tinnitus or hearing loss. She doesn’t mention all this stuff about the migraines and the tinnitus because then she’d sound like a know it all Mrs. Snottypants and possibly annoy the doctor.  After she’s been talking for a minute or so, she feels unwell.  Beads of sweat form on her upper lip, she hunches forward instinctively – not in a sudden movement but a slow lean down until her torso is almost but not quite parallel to her thighs.  God only knows how many times she’s adopted this pose without anyone remarking on it.  She assumes that if anyone notices it, they assume she simply has horrible posture and is perhaps a little odd.  The doctor says “are you ok?” “Oh I just feel a little, uh, sick” she says.

And thus began my visit with the cardiologist today.  What ensued was her checking my blood pressure then getting my ass promptly up on the table, having me lay down, and calling for “anything salty” to the staff.  lol.  So I spent most of the rest of the history lying on my back eating some kind of super salty pretzel and chip snack mix.  And drinking two cups of ice cold water quickly (“there’s a reflex that is triggered by that – it gets your blood pressure up” she told me later).

So…I need salt.  She needs my tilt table results (those bastards still haven’t handed over the data!).  It sounds like I have “neurocardiogenic syncope” (I’m pretty sure that’s could be seen as a very fancy way of saying “you faint”).  I have enough crap/symptoms to make her want another echo (I showed her the two I’d had previously, 2006 and 2009), and when my “blood pressure stabilizes” a stress test.  For now it’s salt, compression hose, and a vasoconstrictor, “if you don’t mind that we try a medication,” she added.  I was rather taken aback by this, in a good way.illustration of person putting on compression hose.  Image from the Mayo Clinic.

“Will that make me feel worse at all?”  “I don’t think so, it shouldn’t” she told me.  “I’m mostly concerned because I get migraines.  Is a vasoconstrictor ok to take with migraines?” “Oh yes, actually, a lot of the migraine meds are vasoconstrictors” (oh now she’s excited) “this might work out pretty good for you.  Let’s start on a very low dose, and if you don’t feel well, stop taking it.”  Ok, so I like her.  I may not like where we end up, but I like her approach.

The cardiologist wants to see me in a month to see if I’m doing better on the drug and with hose.  “I know wearing compression hose in this heat would be hard,” she told me.  Hey, it was good of her to think of it.  I told her I’d try wearing them at work since I keep my office very cold.  We’ll see what we can do.  This is me being a good patient.  I have no idea if it will work but I figure hose can’t hurt….um, right?

One week

My follow up app0intment with the nPCP is a week from today.  I mean, it’s scheduled for a week from today.

I am hedging, as should be clear from my hesitancy to even commit to declaring the date as a certainty.  Experience has taught me to hedge these encounters, and I could say that is the “reason” I say it’s scheduled instead of it is, but that’s not the whole explanation.

The whole explanation is something bigger and uglier, more painful and scary.  The whole explanation includes why I don’t want to say without caveat that I like my new primary.  I think it can be best described as waiting for the other shoe to drop.  I was wondering, is it just superstition then that keeps me qualifying and amending and equivocating on allowing myself to believe things like when my appointment will be (i.e. just because it’s scheduled for next thursday doesn’t mean it will happen next Thursday)?  Do I think if I commit to the knowledge, and state it as certainty, that I am somehow inviting a failure?

I think it’s a safeguard against disappointment.  If I let myself trust, then that trust is betrayed, I feel beyond hopeless.  But allowing myself to swing too far the other way and thinking that there is no hope at all, that the outcome is going to be entirely negative, brings me down too.  It removes my motivation to keep trying to get answers, to get better.  I become bitter and non-compliant.

So I take some comfort in supporting a doubting optimism.  I do this sort of thing a lot.

PEG

I’m having my second ever colonoscopy on Friday. Or I’m supposed to at least.

PEG is such an innocent sounding word. Reminiscent of what is at the moment a sort of ironic song, or an ironic bit of lyrics. “Peg, it will come back to you…” And indeed, it may if what might be coming back (up) is your clear liquid dinner.

Really, it should be PEIG, which stands for “Plastic-like Emesis Inducing Gunk”. Why a PE(I)G prep? Why indeed.
From EndoNurse
In a recent attempt to assess which bowel preparation agent is most effective, researchers conducted a meta-analysis by pulling studies that were published between January 1990 and July 2005.2 The meta-analysis discovered that sodium phosphate (NaP) was more effective in bowel cleansing than polyethylene glycol (PEG) or sodium picosulphate (SPS). Patients showed more difficulty completing PEG than NaP and SPS. All three were comparable in terms of adverse events, with PEG resulting in slightly more adverse events than SPS. NaP resulted in more asymptomatic hypokalemia and hyperphosphatemia than the other two, leaving the researchers to conclude that “the biochemical changes associated with a small-volume preparation like NaP, albeit largely asymptomatic, mandate caution in patients with cardiovascular or renal impairment.”

I have no cardiovascular or renal impairment. So, ummm, why am I getting the PEG prep? My theory is that I am getting the prep which is standard when the clinician assumes the patient is likely to be overweight, hypertensive, and possibly older (male). Sorry if that sounds mean. Any hostility comes from my irritation that male is still too often the medical standard, and I have some issues about which populations are sampled and then generalized to in research in general.

Anyhow, I’m not in that set – the set being people who you should give a crappier prep to because the crappiness of the prep is overshadowed by the need to not pump this person full of salt. I’m a skinny, hypotensive mid-thirties woman who fills up so fast she usually can’t eat a whole meal at a time and who has a history of low Na levels.

Is this an example of one size fits all medicine or does my GI doctors office know something they should perhaps share? I’m too tired to push the issue. I’m going to try to get this shit down and keep it down, but if I end up not adequately prepped because my doctor’s office insisted on a crappy prep for crappy reasons I’m probably not going to be feeling terribly compliant…at least not for a little while since I already asked once “er, do I really have to do the PEG prep?”

My prep instructions tell me that “if vomiting persists, stop the prep and call our office for instructions”. When my GI’s office calls back about the Donnatal/anticholinergic/antispasmodic issue, I’m planning on asking exactly how many times a person must vomit before we consider it to have persisted.

PGY-?

It’s July. This means it’s national “how the fuck do I order that?!” month.

As a unit clerk, I dreaded July. Sure, it meant some new fresh folks to replace the ones who had been worn down and frayed by February. But it also meant too many over-eager interns and inflated residents strutting their stuff through our halls, sitting at my computer, walking off with my pen, running away with charts, and sleeping through pages. Overall, I saw July as one big pain in the ass. However, I hadn’t really thought about what it meant for the patients until 1997.

Back in 1997, my brother was admitted to a big city hospital, one of those mammoth teaching/research jobs, the first week of July. Depending on your perspective, he presented either a mess or a mystery. That is, there were several paths you could have gone down to try to come up with one explanation for all the symptoms.
Here’s the most obvious stuff. He was a recently HIV positive 25 year old male who came to the emergency department with renal angle tenderness, vomiting, diarrhea, fever. Oh and he was quite overtly jaundiced too. I don’t know the meds or the lab values – this was years ago now and if I knew this information I’ve long forgotten it. Long story short – here’s the important info which a good history would have elucidated. My brother had spent the weekend before this illness started at a Pride celebration which apparently entailed the mandatory drinking of many Rolling Rocks in the sun for the better part of two days. He had tried to keep up a good (non-alcoholic) fluid intake since one of his HIV meds came with stern warnings about fluids and what could happen to his kidneys if he didn’t get enough with the med. However, the intentions for decent hydration were shot when he ate some bad yogurt which resulted in vomiting and diarrhea and fever. Oh and he has Gilbert’s syndrome.

Needless to say, my brother’s hospital stay was a fucking disaster. He was bounced from one service to the next in the attempt to come up with a single diagnosis which would account for each symptom, sign, and lab value. His primary care doc (ID) was on vacation, a fellow was covering in the office. No one knew who was authorized to talk to whom. The various services couldn’t keep my brother’s coverage straight, and the nursing staff didn’t know which doctor was on what service and what service was on call when. Labs which were ordered didn’t get drawn because they weren’t ordered right the first time (and sometimes second), peaks and troughs were inverted or totally missed. Unnecessary imaging was performed, biopsies were ordered and then canceled at the last minute. Follow up on any error was somewhat expectedly poor given the many, massive cracks for something as apparently minor as bloodwork or a CT scan on a stable inpatient to slip through. Like I said, fucking disaster. But we stuck it out. We did so by constantly leaning on the primary’s office, keeping our own notes about what had been ordered when, and getting to know the interns and residents really well. Yes, we were the pain in the ass family, but keep in mind, my brother’s HIV status was still new and his doctors had been going down the path of kidney infection so we were scared. Eventually, the multiple, cascading causes of my brother’s presentation were elucidated and addressed (more or less) and after only three false starts (“hey, he’s going home today as soon as they do rounds and write the order!”), he was finally discharged.

I’d like to think that hospital and residency administrators had identified the little mini-catastrophe that a service-wide medical staff change like this causes every year, that they’d learned some tricks like staggering schedules so that radiology, anesthesia, internal medicine, surgery, emergency medicine, and infectious disease didn’t all completely change staff at the same exact time, but I’m guessing this is more of my boundless optimism. I’m guessing that because my aunt just checked herself out AMA from another (different) big city hospital last night after being juggled, bounced, and rescheduled around for days. She was admitted Friday night for a Monday AM bronchoscopy (looooong history of heavy smoking – PET scan showed a mass). The scope was postponed all day Monday due to a back up. Then Monday night, the team changed its mind and decided on a needle biopsy (placement of the mass), but it was impossible to schedule with radiology through Tuesday. Tuesday evening, a nurse told my aunt “yeah, this kind of thing happens all the time”. I understand why she said it, and I expect her intentions were entirely good and even sweet. Unfortunately, my aunt had been cooling her heels inpatient for too many days so she could undergo a procedure to confirm that she has lung cancer – at least this was what was going on in her mind no doubt. And while she waited, patiently or not, she was witnessing the hospital screwery that is July. I think the conversation with the nurse was the last straw and also an excuse to run away. Within an hour she had signed herself out AMA and now plans (or says she plans) to have her primary care doctor set up the biopsy outpatient through Local City Hospital, which has earned the nickname of “Local Shitty Hospital”. But who knows, maybe Local Shitty (not a teaching hospital) isn’t so bad comparatively speaking, at least in July.

A timely article

Since I was just writing about compliance (to medication regimen), Medea, and Large Marge, this seems to be an appropriate reading for the day. I’m supposed to be writing a lecture on hypothesis development and testing, but ow.

And my attention is less than razor sharply focused.

I’ve gotta say, after looking over the abstract, I find myself quite curious about the “pictorial blood loss chart” used in this study.

Also, I can’t help wondering – where’s the imaging man? Here I am looking at stuff on muh-muh-muh-My Mirena (see, it’s not just the Macarena it fits with – it’s a quite musically handy word) and finding a long term study on side effects of the blasted thing and it seems they didn’t collect data on ovarian cyst formation in women using The Device.

Can I get a hearty wtf?

bitter pill

When I was taking doxycycline for my acute Lyme infection many years ago, I developed a serious aversion to it. I had to force myself to swallow each twice daily dose. So great was the desire not to take it that I sometimes gagged on it and had to spit out into my hand, take a moment to visualize that it was a large tic tac, and then pop it in for another go. I often forgot to take it when I was supposed to. There were many, many nights when I had to get up out of bed, eat some crackers, and take the damned pill because I had totally “forgotten” to take it before I brushed my teeth and settled down for sleep. How did I remember after I got into bed? I had finally taped a sign to my bedroom ceiling to remind me to take the pills.

Why was it so bad? Because within two hours of taking it, I would feel HORRIBLE. It wasn’t an upset stomach. It’s hard to describe…I felt like my brain had been scrambled. My head felt like I had taken a blow from a 2×4 right dead center on the forehead. My eyes ached. I couldn’t stand light and sitting up or standing made me feel like I was going to puke and pass out.

This happened every single time I took a pill. The time frame on it might be off. It’s been a while since I was on the doxy and I tried so hard to forget the details. Some of them will stay with me for a while I’m sure but stuff like “did it start in two hours or was it peaked and falling off by two?” is information I can and therefore do forget.

When I was on the IV rocephin a year later, I had another sort of odd psychological reaction. This one wasn’t based in any physical aversion training. It was the creepiness of knowing that little port not far above my elbow was the leading end of a line that went smack into the superior vena cava. The exact placement of the end of the line was quite apparent to me since for a few days after I had it placed, every time I crossed my right arm over my chest – say to brush the teeth in the left side of my mouth – my heart would go “ka-chu-u-unk” instead of the usual “ka-thunk”. I had them pull it back some. (Yeah, like I said, I’m that patient.)

Point is, I knew it was there and I sometimes had to think really hard about not thinking about it so I wouldn’t get skeeved out. About the second week in, I noticed that if I successfully accomplished this goal, I’d forget about the line maintenance routine. So it’s flushed twice a day, once after the drug and once again about 12 hours later. On the days when I’d managed to not be thinking overly much of my PICC and where it went, I’d forget to bring my supplies with me if I was out. It was sort of a catch 22 – think about it and fret but remember to be prepared to take care of it or not think about it and be so blissfully unaware that I got caught more than once without my syringes.

These days, when I miss a pill or forget if I took one, I can’t help wondering if there’s some kind of aversion issue happening. The ones I forget now have none of the obvious displeasures associated with the doxy or the PICC line, but there are two in particular which I consistently forget to take or forget if I’ve taken. Unlike my elavil, which I seem to hardly ever forget to take and never forget if I have taken, I far too often find myself standing there looking at the package of PPIs or bottle of NSAIDs in my hand and wondering “crap…did I take one of these already?” or realizing many hours later (usually when the symptoms get raging) that I can’t remember having taken one.

I’ve considered that there may be some regularity to this pattern. The one which has worked the best and without which have an eventual visible, marked effect (weight loss) is the one I am good about taking. It’s not a simple cause and effect thing though. I don’t feel immediately or even directly better after I take the elavil. It’s a cumulative thing on a much longer time scale than I would have thought necessary to induce such an association. So what’s going on with the others then that makes them so readily forgotten?

I was thinking about this today after I got off the phone with a friend who’s been doing chemo every other week for about many months now. She’s been switched to a once every three weeks course now, but says it still sucks a bunch. I also thought of another friend who had to administer Hepatitis C treatment to herself at home (this woman hates needles) and my brother who’s taken various HIV and psych meds, all with various side effects and the occasional adverse event.

How the hell do they face each dose?