Sad today

I didn’t wake up with racing thoughts today, but I woke up sad.  I cried in bed several times before finally getting up, asking my husband to hold me to comfort me some through it.

It’s been a really tough couple of months, and the return of the anxiety has been hard to take.

I got through yesterday ok though, I managed to not take any ativan even though I woke up with nausea.  It resolved as the morning went on.

Today, I’m sort of on the edge of anxiety, I can feel it tugging at me in the background.  I know if I had something to do today, something I could do and that was more engaging than some solitary pursuit, I would feel better (emotionally) about the day and have some sort of hope that I won’t be spend the day alone fighting bleak thoughts and fear.  My stomach’s not too upset this AM, but I feel weak, dizzy, and my vision is spotty even just sitting up.  I’m sure my BP is way down.  I don’t even want to check it.  Too depressing.

My GI doctor called back yesterday after a third call.  She wants to do a Ph study and an esophageal manometry test. I explained how the last esophageal manometry test went when I was a teen…i.e. the doctor couldn’t get the probe down my nose because it’s too narrow up in there, so he ended up putting it down my mouth.  I got the distinct impression from my current GI doctor that dropping the probe down my mouth would not be an option.  “We’ll try it…” down the nose, was her comment.  Oh that and take a (whole) ativan before I come in for the procedure.  Um….okayyyyy.  Obviously she doesn’t get that it’s not just a matter of upset, it’s a matter of anatomy (which leads to pain, which leads to upset).

Still beating my head against the wall with trying to get in to a new GI doctor.  Still calling every morning and getting the news that there are no cancellations.  I wonder if I should call later in the day?

A friend is supposed to come over later in the AM for coffee/cards.  I hope that goes ok, I hope I stay well enough to do it.  I really could use the company and distraction.

I was planning on starting/trying the evening primrose oil and flaxseed oil today. I got them Monday to try to help supplement my way out of the essential fatty acid deficiency my labs showed back in June (and that was only one week into the starvation diet I’ve largely been on since then).  I worry about trying them…side effects include upset stomach, abdominal pain, nausea, and diarrhea.  So basically, more of what I already have.  Errrrg.

anxiety better this AM, stomach worse

Yesterday was pretty stressy, no retching at least.  So no ativan.  And I did go out briefly, to the health food store to look for supplements for my essential fatty acid deficiency.  But there was lots of easily upset and concerned, far out of proportion with what was warranted environmentally.

And there was the growing discomfort and nausea.

And there was the GI doctor not calling me back again.  I’m wondering if she’s on vacation.  I would not be at all surprised.

This AM, I woke up with a little bit of that racing stressy thought shit, but I was able to control it more effectively.  Nausea and abdominal pain aside, I actually was in a nice mood this AM.  Slightly less now that I’m up and remembered I have to call the possible new GI doctor’s office in a few hours and go through that whole “cancellation/hopes up” crap, but I’m not majorly down about it.  Just slightly deflated.

Had some juice yesterday, tiny amounts, very diluted (mixed some watermelon juice in with my first liter of water, mixed some spinach juice in with my early afternoon broth).  I am wondering if last night and today’s extra upset stomach is due to that.  I hope not.

Bad day for eating

Yesterday was not a good day for eating.  I managed to have only two shakes.  I think it’s because I pushed it and tried to have a small amount of peeled, baked potato in the early afternoon.  It did not sit well.  I was so bloated and full from just the small amount I ate, which was about a 1/4 a potato.  Prior to starting the mirtazipine, I was able to eat this, but between the mirtazipine, the ?gastritis?, then the lyrica, I guess I’ve lost that ability.  For now.  That is what I am telling myself.  That it’s just for now.  The lyrica constipated me, and I never do well when I’m constipated, it’s like things are backed all the way up.  Or maybe it’s just a more obvious indication that something has slowed everything down.

I’m hoping that this improves as the lyrica gets out of my system.  I’m trying not to get too upset about it.  It’s tough.

I also tried the “three PPI” dose yesterday, well, sort of.  I took my AM dose, and then a half hour before I ate the potato, I took another.  While I didn’t have bad heartburn in my usual pattern (2 hours after eating), I did get it at night and woke up with it this AM.  I’m not sure dosing with PPI three times a day is a great idea.  I would think, if anything, upping the zantac to three times a day and maybe changing PPIs would be a better idea.  In all the papers I’ve read on PPI treatment for GERD, I’ve never seen references to trying patients at three times a day for PPI refractory reflux/heartburn.  Twice a day, yes.  Changing PPIs, yes.  But three times a day?  No.  If someone reading this knows otherwise, please let me know.

I’m starting to get stressed about this.  I feel like without adequate control of my slow gastric emptying, there is no hope for controlling the reflux, i.e. the reflux and heartburn are symptoms of the gastroparesis, not separate entities to themselves.  And I am out of medication options for the gastroparesis.

Feeling a little hopeless today.

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”.

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.

Not quite an emergency…

But in the emergency room nonetheless.  I chose carefully, avoiding the BATHs since it’s July and they are awful unless you have a really good reason to go there.  I don’t, or didn’t yesterday.  I do not go to the ER under circumstances like these to get answers.  That’s what your outpatient docs are for, or if you’re really fucked, that’s what a few days to a week of inpatient is for.  But ugh, inpatient at a Big Ass Teaching Hospital in July?  No Thank You!

Then there’s the big community hospital where my primary is on staff.  He’s only marginally on staff, he’s more appropriately “affiliated” which means i suppose he can write orders on me.  If I thought I was going to be admitted, I’d go there, but I’d prefer it as a direct admit than an ER conversion.  And again, I have a sense of how these places operate and of the “sick person” narrative from the doctor’s perspective, and I did not yet seem to need inpatient.

So given that I just needed urgent management of fluid status (for the floor falling out of my blood pressure readings, yikes, that systolic of 69 was a wake up call, and I’d have thought it an anomaly if my other BPs around it hadn’t been 77, 75, 72, and 70).  And given that my strategy of managing it with PO fluids at home hit the skids when the nausea and vomiting started yesterday, and given that I was feeling worse and worse, my brain was just not firing, I was stumbling when I walked, walking into things, not able to open bottles I normally can open, getting dizzy even laying down flat on my back with my feet propped way up on the leaning tower of pillows, I decided that yeah, it’s time to go.

I chose the little community hospital in the affluent town where I live (I live in the not so affluent side of town, and I rent, so I am not affluent but I can take advantage of it’s ED services).  If you watched the show Parks and Recreation, think Eagleton.

So off I went to the Eagleton ER with hubby yesterday afternoon.  Hard to give my history, what with all the chronic crap, so I didn’t get into it too much except to say “I have a connective tissue disease that has a lot of autonomic symptoms….I have POTS, neurally mediate syncope, I don’t sweat appropriately in response to heat, I pee all the time, and I have gastroparesis.  So, with that all said, these last few days, my blood pressure has really tanked bad – lower than it’s ever been when I’m not passing out.  I’ve been trying to manage it at home with rest and PO liquids, juice and water, gingerale and water, and electrolyte tablets, but today I woke up with abdominal pain, intense nausea, and vomiting and retching.  I only vomited once, but I’ve been having dry heaves all day.  I can’t get enough fluids in, and I can’t eat, and I feel terrible so I think I need to get checked out and try to get some IV fluids at least.”

Then, when triage was over, I hopped up, and promptly sat right back down with my head between my knees saying breathlessly, “Oh, that was dumb, I need a second”.  One quick wheelchair ride later, I was laying flat on a bed in a gown with a competent nurse hooking up the monitor and IV line.  Do not pass go, do not go back to the waiting room.  Go directly to a bag of IV saline, wide open.

My BP didn’t do anything too funny in there.  Of course.  Because I am stressed when I’m in the ER.  My systolic did drop to 38, which won me a commode rather than a walk to the restroom.  “Because then you’d fall, and that’d suck, plus it’d make me look bad…” said my nurse.

So two wide open liters of fluids, one dose of IV valium (for the nausea), and a little bag of IV protonix later (mmmmm, thank you, says my hurting belly), I was feeling much less dizzy.  The nausea went from a 10 to a 3, although by the time I was leaving it was back up around a 5.

And this AM when I woke up, it was back at an 8.  So I took an ativan.

Because Zofran isn’t touching this shit.  And I’m not taking another dopamine-affecting med again, not since I’m pretty sure that all of this mess started with a dose increase of Reglan that gave me some of the nastier Reglan side effects.

Follow up with Primary, follow up with (useless) GI doctor.  I called both this AM.  They love getting these calls on Friday, right?  ;p  Well, I’m not looking to do much more on this until next week.  I want to know that I can take something like Ativan for the nausea, at least until my gut heals (I think I fucked it up with acidic juices and salt/electrolyte supplements.  it’s happened before, but I was in denial and so worried about my BP that I went ahead and took them anyhow….booo, stupid, bad idea…I know).  I also stopped the herbal remedy for my gastroparesis that I had been taking, Iberogast.  Because I looked it up and it has “9 different herbs” in it, 8 of which I think are considered to be ones which can lower blood pressure.  So maybe taking that is not such a great idea.  At least not right now.

holding on, holding out

I’m increasingly thinking I need to be inpatient, and I don’t say that lightly.  I spent yesterday, day two of the massive hypotension, sucking down juice all day and trying to lay with my feet up to keep my resting BP up.  Nope.  The only things that reliably bring it up are stress/anxiety and being up and moving around, both are temporary and the up and moving also jacks up my heart rate to my high POTSy levels.  So that’s no good.  Plus, I’m dizzy while I’m up.

The two days of juice have taken their toll on my stomach I think.  Well, that’s what my theory is for why I woke up this AM with stomach pain which quickly progressed to nausea.  Took a zofran.  An hour later, I was vomiting.  I swear, all zofran does for me is constipate.

The juice, white grape juice, is less acidic than gatorade, but it still is sharp on my stomach.  I am hoping two days of high acid in my stomach is what it was that set things off today…I’m pretty unhappy that I’m puking now too, on top of all this blood pressure crap.

My husband leaves tomorrow for his conference, which he is already planning to cut short since I’m so sick.  A good friend (out of state) is coming up to hang out with me while he’s gone.  I’m not accustomed to having company while I’m so sick, basically she’s going to have to minimally baby sit me (and possibly take me to the ER and watch my cats until my husband gets home) and I am not looking forward to that.  I had been hoping this would be more of a visit, but the last few days are not looking good.

So my husband’s coming back Sunday night, cutting his conference attendance short, which sucks.  But I’m glad.  Because this sucks too, and it’s scary, and the only reason I’m not pushing the doctors to admit me is that I don’t want to be in the hospital while he’s out of town.

I was supposed to check in with Neuro today, about the mirtazipine.  I’m sure they’re going to be unhappy that I discontinued it, but I really feel I had good reason to do so.  Of course, today’s nausea and vomiting doesn’t help my  case that without mirtazipine, I can at least tolerate a liquid diet.  😦  But up until today, I was doing much better OFF the mirtazipine than on, stomach-wise.

Got through

Got through yesterday.  I felt pretty bad, physically but did great emotionally.  My stomach was better too (so some support for the idea that the mirtazipine was a no go on account of unexpected stomach side effects), until I decided to slurp down too much soup all at once for dinner.  Yesterday was hot, hottest day we’ve had so far this season.  And my head was swimmy.  Dizzy, headachy, and the occasional blast of blue flickering flashes.  I think I spent the day with a mild migraine.

Well, I’ll take a mild migraine over a king sized freakout/meltdown.

Today, it’s therapy and primary care.

Tomorrow, my husband’s going out after work, so I’ll be alone all day and most of the evening.  That’ll be interesting.  If I’m feeling ok, I’ll try to go out.  Hard to plan to drive somewhere when you don’t know if you’re going to be too dizzy/migrainey though.  Once I have on migraine, the next is often right around the corner, especially in the summertime.  I have a friend who says he can come over for coffee Tuesday, so that’ll be a short interlude in an otherwise lonely day if I can’t get out.

This being physically sick was shitty enough.  Having the mental health stuff on top of it is just too much.

Nope

Looks like the mirtazipine might make the gastroparesis worse.  Yesterday, I felt like nothing I ate left my stomach all day.  Lots of reflux, heartburn, and even some regurgitation of what I ate, and I had a pretty mild diet (smoothies, Carnation shakes, fat free yogurt…I did push it and have some chicken and rice in the afternoon, I was hungry despite feeling so full and sick).  Better when I woke up, including better in terms of sleepiness.  I took the mirtazipine much earlier last night, which meant falling asleep on the couch watching shows in the early evening, but that’s not unheard of for me anyhow.

I’m sad that the mirtazipine might not be working out.  I had high hopes.  I’m trying not to be too disappointed by this, telling myself that the akathesia/anxiety is getting better (it does seem to be, a bit, but I haven’t had a med free day since Thursday, and while Thursday wasn’t the worst day I’ve had this week, it sure wasn’t the best).  I’m sitting here at my computer with my legs working away under my desk like I’m marching double time somewhere.  I can stop it if I want to, but it keeps starting back up again.  This is the pattern, the jigginess first, then some general agitation, then the anxiety.  I’m going to try riding my bike in a few, then it’s time to try to eat something again.  Blurg.  I wish food wasn’t being so unkind to me right now, it’s sucking the energy out of me (and I’m already pretty low on energy to start with) and it’s depressing/alarming in its own right.  One more thing to focus on when I’m feeling anxious.  Like I needed that.

I’ll call Neuro Monday to let them know, in the meantime I think I’m going to skip the dose tonight and see if at least my stomach is better tomorrow.  Fingers crossed.

Tuesday, Wednesday stay in bed

Or Thursday, watch the walls instead.

You got that right Mr. Smith.

Tuesday wasn’t too bad, it was awful in the AM but then the clouds lifted and aside from feeling a little physically bad (mild nausea, headache), I was feeling good.  Actually good, energetic but not crazy energy.  Like me.

Wednesday was not ok.  Today was right up there too.  Both days have had much more nausea, vomiting, and retching.  Sometimes I know it’s coming, sometimes it just comes up out of the blue.

Wednesday was so bad that I woke up this AM feeling the dread again.  I had been doing pretty well on dread, it seemed to be retreating a little bit.  But I woke up this morning at 4:30 (as usual) but instead of staying sleepy-dozy and managing at least to go back to a light nap, I was wide awake riding the anxiety train.  Racing thoughts, worry about how long this will go on, what I will do to eat, I barely ate yesterday (and today turned out to be even worse).   Worry about what I will do in July when husband goes out of town.  This is where a paucity of family relations really shows up in spades.  No mother or aunt to call to come help me out while I’m alone.

Today I started the Zoloft, half a 25 mg pill.  On top of Zofran (for the nausea, for what it’s worth).  My appetite, which started waning even before I stopped the Reglan (I think on account of the Reglan induced depression) is just flat out gone now, so each bite is a chore of unpleasant sensations, from sight to smell to taste to feel.  Feel and smell are the hardest.

I called my GI doctor today to tell her what’s going on.  She will recommend going back on the Reglan, and I know this because she already did recommend it.  I will not go on that again, I’ve seen down that dark hole, what I saw was bad enough and I’m convinced there’s worse lurking.  Dangerous psychosis, suicidal depressions, the like.  Maybe for someone who was all sunshine and puppydogs in their head to start with, it wouldn’t be so dangerous, but my head is not full of sunshine and puppydogs, at least not exclusively.  There are some mighty dark corners in there already. They don’t need a big chemical boost.

So after retching for 20 minutes a short time ago, so hard that I feel like things in my chest are giving away, I took another ativan.  I was trying not to take too many of them, but I’ve been getting keyed up, agitated, my legs won’t stop shaking, and so I figured I would take one and maybe it would help with some of the nausea and retching.

Jeez, I hope so.

And the last thing I did today, before calling it “a day” and coming over here to blog, was call my local “pot doc shop”.  See, medical marijuana is legal, in theory, in my state.  It’s just finally getting to the point where certified patients can buy it.  Not quite, but we’re assured that any old day now….

So, now would probably be a good time to at least start the process of getting certified.  My god, it’s like I have so many things to choice from, which symptom/syndrome would I want to base it on anyhow?  The gastroparesis with it’s prescription drug failure, appetite killing, nausea inducing, vomiting set of upper GI symptoms?  The chronic pain from my connective tissue disease?  The migraines?  The insomnia?  And now, the anxiety?  We have a lot to choose from.  If it helped even a little with the eating and sleeping, it’d be worth it.  And it’s pricey.  You have to see the special pot doc, and you have to establish that there is a genuine patient/doctor relationship there, which means getting your old doc to copy and send records ($), then having your record review at the pot doc ($), and your initial consult ($$$).  There may be a second consult too, I’m not sure.  Then if you want the pot doc to help you navigate the process of transferring their say so that you’re certified into a state card saying you’re certified, that’s more ($).

But so are these shakes that I buy in bulk from Amazon and throw up every morning, and so was the medicine i bought from canana last fall in the hopes that it would work as well as the REglan without all the side effects.  So are the doctor’s appointments where they do everything short of saying “we can’t help you, you’re just fucked”.  So is watching my life slip away even more. My god, it was small enough, then smaller, then unbelievably smaller still.  Now?  I find my life is barely larger than the skin stretched over my bones.