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.

getting by

I’m back on the ativan, for the nausea and vomitting.  I think I caused the nausea myself, trying to hydrate up my super low BP, I drank fruit juice and took electrolyte tablets.  I am thinking the electrolyte tablets were too much for my stomach.  If this is what it is, and if it holds to the pattern (I think this happened before, it feels very similar to the cycling nausea from January to March), it’ll take about a week for my stomach to heal.  In the meantime, I’ve lost more weight and I need to be able to eat (and hydrate) so I don’t end up back in the ER.  So I am taking low doses of my ativan.  I was prescribed 1 mg three times a day.  The most I’ve taken is 2 mg, divided doses, i.e. one mg in the AM, then a half in the late afternoon when the nausea comes back and another half before bed.

Yesterday was tough.  I was feeling better BP-wise, and had the nausea under some control, so I went out to do an errand and visit a friend (I have a friend visiting while my husband is away, she drove us out and around yesterday, I’m still not up for driving).  Healthfood store for vitamin K supplement and licorice supplements (I figure it’s supposed to help your stomach and I could, quite frankly, use the blood pressure elevating side effects).  Then over to my other friend’s house for a short visit.  Very short.  I got dizzy, headachey, super fatigued, and nauseous and had to leave.  Unfortunately, as short as it was, I waited too long and forgot we needed to stop somewhere to get my visiting friend dinner.  That was a bad ride home.

Some retching that evening.

And less food that I’d like.  I’m down over 10 lbs now.  About 15 total since this shit all started in early June.

And my GI doctor still hasn’t called me back.  Not that she’s much use, but I figured I should update her and let her know (she told me to call).  Jeez she really sucks.

Husband’s coming home early from his conference tonight.  I’m deeply grateful, since my visiting friend can’t stay as long as she’d initially thought, which was going to leave me all on my lonesome tomorrow and I’m still feeling crappy enough on and off throughout the day that being alone really sucks.  I know there are people who have no other option, but if you did have the option, you’d take it.  So I’m taking it.

It’s probably going to be a long medical week next week.

Wish my good luck and some extra spoons.

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.

crash

My blood pressure has crashed.  I had noticed that it was tanking in the evenings, down in the mid 70s a few times.  I mentioned it to the neurologists.  Not even a raised eyebrow.

Well, yesterday my systolic got down to 69.  And for the record, no I did not feel at all well.  But I didn’t go to the hospital or call my primary care (who would have just said “go to the hospital”) because I know how you get treated in the ER, i.e. like shit, if you’re a woman with a psych history.  And I now am.  And if I’m stressed and anxious, which I am just thinking of going to the ER, my blood pressure goes up.  So it’s a catch 22.  If I go for my super low blood pressure, I’m going to be so keyed up about going that my blood pressure will look low/normal (like, 101/55) and not crazy hypotensive (69/45).

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.

Anxious Sunday

Went without the mirtazipine last night.  And I’m trying to forgo the ativan today.  It’s going to be tough.  I woke up stressy and anxious, and it’s just lingering.  Usually, it fades for a time in the AM after I get up (if it’s there….it had been a constant but had faded this past week) then resurges again in the late morning/early afternoon.  Today, it was there when I woke up and it’s remained and built since I’ve been up.  I’m very disappointed.  I doubt it’s a lack of mirtazipine, it’s not supposed to have psych effects this quickly.  If anything, it’s probably just a lack of general sedation that’s affecting me right now.  The mirtazipine truly is very sedating, especially this early on and at this low dose (it has a funny response curve, apparently at lower doses, the antihistamine/sedating effects are stronger…go figure).

So I’m down that this is happening today.  Today, my husband is going to pick up my good friend’s teenaged daughter from camp and we’ll have her at my house until her grandparents come at some point (this afternoon?) to pick her up on their way to Canada.  I’m stressing about my husband driving the hour up a busy highway, stressing about what I’ll do to entertain a teen, stressing about whether her grandparents will come in to visit, whether they’ll have all their pets with them (I believe they usually take the whole menagerie up to Canada with them) and where they will stay if my friend’s parents come in to visit (it’s supposed to be the hottest day of the year so far today, highs in the 90s, not ok weather to leave pets in a car).  So stress stress stress and anxious anxious anxious.

Got this song in my head….

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.

Trying Mirtazipine, again

Saw Neuro yesterday.  We’re giving Mirtazipine a shot.  It’s worth it, since although the fellow said that he thought that the movements/fidgeting might be more a product of the anxiety than a co-symptom of akathisia, mirtazipine is used for akathisia.

An amusing side note about that, a good friend of mine has been saying “just do whatever they do in Israel, they always seem to get things right” about the akathisia/anxiety/whatever this is.  The  paper where results of using mirtazipine for akathisia were published, the authors are from Israel.  That made me laugh.

So I started the mirtazipine last night.  Because it’s not just for akathisia, but for sleep and appetite (both of which I am sorely lacking in).  I did not sleep well, but I am soooooo sleepy today.  Which is affecting my writing, I’m sure, so apologies to anyone reading this and wondering why it’s so stilted and error-filled.  I’m hopeful that it will help.  I know it’ll take a while for the psych effects to kick in, at least that’s how it usually is with meds for anxiety and depression, so I’m going to try to be patient.  I hope I don’t get any acute anxiety today, because I’ll be on the floor if I take even a half an ativan on top of this mirtazipine induced sleepiness.

Thinking of showering while Hubby is still home this AM.  I’m worried that if I try later, I’ll fall.  Yeah, I’m that sleepy.  Checked my vitals this AM while laying sleepily on the couch after getting up, 80/52, hr 52.  So concerns about falling are not overblown, not with vital signs like that.

And I still have to call the psychiatrist.  I’m not really sure what to say.  “I don’t want to see you again” seems like a good place to start, and end, I suppose.  Minimally, I need to cancel my appointment for Monday.

Terrible weekend, better Monday

This weekend was awful.  Despite taking the ativan, I was really not at all ok.  Some of that is my own fault, on Sunday I thought “I’m going to wait on taking the ativan, I don’t want to keep taking it when I first crack open my eyes….so I’ll get up, have some (decaff) coffee, feed the cats, do stuff online, and then if I start feeling jumpy, then I’ll take it.”

Well it turns out that’s a good way to let it all get on top of you and while the Ativan works (some) to tamp things down if I take it when I first wake up, it does far less good when I take it late, after the agitation and retching and jumpy legs have started, like on Sunday.

Monday was better.  Yesterday was better than the weekend but not as good as Monday.

Monday I called the neurologist and asked for help.  Begged for help is more like it.  No call back Monday, I called again Tuesday AM and got a little attitude from the BATH office (this doc has two offices, one en route to the Irish Riviera as we call it up here; and one at the BATH in the city).  But I persevered, left the message with my doctor’s nurse, Keith.

And resolved that if no one called me back by 4:00, I was calling the BATH to confirm that Keith is not on vacation, and to leave him another message.

At 3:30, the nicer sounding lady from the Irish Riviera office called and told me the doctor can see me on Thursday.

Big sighs of relief.  Still apprehensive, not sure if I should skip the ativan that day.  I feel like it doesn’t work great but it does tamp things down some, and maybe the doc should see me unmedicated.  Also, if this is akathisia, and tardive akathisia at that, I’m not sure there’s much to be done.