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.

rebound or relapse?

The anxiety is officially back.  It’s not terrible yet, but it’s there and it sucks.  I struggled yesterday to avoid taking any Ativan…I had been off it for a while, and had not had anxiety.  But the possible gastritis two weeks ago brought nausea, so I took it again at about 0.5 mg once or twice a day for a few days.  Then I started the Lyrica, and I stopped it again for a few days.  Then the lyrica brought nausea, so I started back on it at 0.5 mg once or twice a day.  The anxiety started a day or two after I stopped the lyrica, and I’m wondering if this is some kind of rebound from the lyrica.

Or if it’s just a relapse.  Or if it’s a dose tolerance/interdose withdrawal/rebound anxiety from the ativan.  I didn’t think I had been taking it too much, and I had gone a whole week without it prior to the gastritis…then went 4 or 5 days without it, then started again when I discontinued the lyrica and had the nausea (Saturday).  But I’ve kept it to 0.5 mg since then, and never more than twice a day.

This is very frustrating.  I don’t want to end up addicted to ativan, I’ve read that you can end up with pretty bad rebound anxiety from that, and the “rebound” includes when your body builds up a tolerance to it and your blood level dips between doses.

If this is rebound from the lyrica, then I should be able to either stick it out, maybe take the ativan very sparingly and judiciously over the next few days and it will lessen and pass, I hope.  If it’s some kind of rebound or dose tolerance from the ativan, then I’m just kind of screwed because I do need the ativan for nausea right now, so I can’t totally stop taking it right now.  And if it’s a relapse, I’m screwed because it means that I’ll be stuck taking escalating doses of ativan to help control it since I can’t tolerate the other meds we’ve tried for it.

In the meantime, I am trying to get in to see the potential new GI doctor.  I’ll be calling today to see if they had any cancellations.  Wish me luck.

Update:  no cancellations.  Trying not to be too bummed out about that.  I’ll try again tomorrow.  It’s all I can do.

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.

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.

something funny

That’s what I needed this morning.  I thought I’d turned a corner on the nausea since it hadn’t been too bad for a day or two.  Yes, more evidence that I am – despite outward appearances – actually an optimist.  But last night, it was back in a big bad way – it woke me up twice – and I woke up again this morning to it.  Guess the zofran wore off.  So more zofran this AM and some Onion.

photo of red onion

No, not that kind.

This kind:  Procrastinating Surgeon Putting Off Coronary Bypass By Cleaning Entire Hospital

(Photo credit: Killiondude, September 29, 2009, Whole onion.jpg, via wikimedia commons Creative Commons)