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….


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.

Dr. Not Impressed

I called my psychiatrist yesterday to ask him if he would be willing to speak with the neurologist.

See, I figured neurology’s input might make a difference in the approach to my treatment.  Among other things, the covering neurologist had said that the SSRI was not a great idea if this was akathisia, and I wanted the neurologist and the psychiatrist to be able to talk it over rather than to have me in the middle trying to explain the arguments for or against an SSRI here.

Oh but no, that was not in the cards.  The psychiatrist felt there was no need for him to talk to the neurologist, said if he spoke to him it would only be to say that he “respectfully disagreed” that an SSRI can cause or exaccerbate akathisia “if that is the word he used”….

Now see, it’s little things like that.  Little things that say “I don’t believe you” or “I am invalidating what you are telling me”.  Little things like “if that’s the word he used” or the sighing (yes, there were exasperated sounding sighs from my psychiatrist), or the tone of voice that sounds, quite frankly, peeved, fed up, sick of listening to something stupid.  You know the tone.  I’ve heard it from him before, and I figured that maybe I was projecting.  But on top of the sighing, and the phrasing he used in speaking about whether it made sense to talk to the neurologist and about akathisia in general, about whether it made sense for me to stay on the SSRI, it sort of adds up to one ugly percept.

I was pretty upset after talking to him.  I get like that with doctors, when they get like that with me.  So needless to say, yesterday was not a stellar day.

It didn’t help that yesterday, I felt like I was on the verge of fainting or just plain old falling over *all*damned*day*.  It was like I was way too heavily sedated.  I had taken an Ativan yesterday, at about 6 AM, 1 mg, no more than I’d taken in past days.  Because I felt so fogged, I even waited it out and didn’t take any more (another .5 mg) until 5 PM.  Didn’t matter, I spent the day in a sick-flu-like fog.  It sucked.  It made me a little panicky too, on top of the distress after my call with Dr. Not Impressed, which sucked because I didn’t want to take another Ativan to deal with the panic.  So I just sucked it up and dealt with the shaking and retching.

So this AM I tried not taking an Ativan, on account of the fogginess yesterday.  I got to 8:00 with leg shaking and pacing, then finally the retching started.  I need to be able to eat and keep my food down, so I just took an Ativan.  It feels like a failure to do so.  I feel so lost right now.  I wonder if I will ever feel normal again.  For a short period this morning, I did.  Between waking up at 4:30 and laying in bed with my mind racing on stressors, my legs shaking (trying not to, I can consciously stop them from shaking, stop myself from rocking, but as soon as I lose focus, I start again), and getting up at 6:30, I was in a state.  I was ok for a time after getting up.  Taking care of the cats, feeling sad about the cats (that’s just ever present now, that seeping, aching sorrow), looking for jobs online, reading facebook.  I sat in the living room for a moment and pictured it as a safe welcoming space, a place where I am safe.  And that worked for a while.  Then I got up to do dishes, to start making food, and the retching started.

Akathisia? I don’t even knowah!

Yesterday, I wrote about having found a term that seemed to describe my experience since increasing my dose of Reglan to 40 mg/day.  The term was “akathisia”.  I was nervous about calling my GI doc and my neurologist.

The GI call.  Went about how I thought it would.  She blew off that this continuing effect could be due to the Reglan.  I suppose that some of this is ignorance due to the fact that the articles about these effects of D2 antagonists (Reglan among them) do not appear in GI-specific journals so much as neuro, psych, and pharmacology publications.  You’d think a really good gastroenterologist would be on top of that, about a drug that has a black box warning and which she prescribes and increases rather often.  But see, there’s the rub.  A REALLY GOOD gastroenterologist, and while this doc I see is listed as a top motility specialist, I have not found her to be a really good doctor.  She worked me up, dx’ed me, but all along the way she kept forgetting what my main complaints were (to the detriment of my care sometimes, e.g. prescribing nortriptyline to “desensitize” my gut for pain and nausea, which sounded like a swell idea for someone with chronic diarrhea, except that I had told her that the chronic diarrhea I’d had for years changed nearly overnight several months prior into chronic constipation.  I didn’t tell her this just once, I mean constipation was a major topic of our discussions and appointments for MONTHS.  And yet she prescribed a constipating med, and was surprised when I ended up impacted and syncopal on my bathroom floor, and eventually in the ER).

She forgets dosages.  She cancels appointments only to reschedule them months later.  She runs so late for her appointments that you can’t plan to do anything else the entire day, and her office will not be up front about it and give you an honest estimate of how late she is.  You call and ask and they always say she’s on time, even when she’s not.  My last appointment with her was her second appointment of the day.  She was over two hours late.  She was not with the first patient for two hours.  She was late getting in.

So the GI call back last night left me in a bad mood.  I woke up feeling despondent, the old Deep Dark Despair, on top of the agitated anxious racing negative thoughts that are happening right now.  Not a good combo.  Took an Ativan.  The DDD is because if this doesn’t go away with SSRIs and Ativan, what then?  Is throwing an SSRI at it even the right thing to do?  And how can I trust my continuing care and management of my sometimes tricky gut to someone who is just so either checked out or in denial?  It leaves me feeling abandoned and scared.

But then a miracle happened. A young man called, (Dr. F) saying he was the covering for my neurologist (Dr. H).  So what’s going on? he asked.  I rambled.  I apologized for rambling.  I explained that I saw Dr. H only recently for autonomic issues secondary to Ehlers Danlos, and one of those issues is slow gastric emptying, and I’m on Reglan for that.  And that in late March my GI doctor increased the Reglan to 10 mg 4x/day (how much were you taking?  10 mg 2x) and that slowly over the months after I started getting these restless, agitated feelings, feeling what I guess was anxiety, but also with some leg restlessness that I thought was just a magnesium deficiency, then about three weeks ago it just sort of blew up and I started having this all the time, intensely.  I started to go on, and he interrupted me.  “Well I can tell you that sounds like something that can happen from Reglan and those medications that affect dopamine, we call it AKATHISIA.” he even spelled it for me.  He went on to say it is primarily considered a movement disorder but that it can come with emotional feelings or restlessness, agitation, anxiety, and depression.  I told him I had stopped the med but it was continuing.  He said “typically, it takes a few weeks to a month to clear up” but that if it continued, I can make an appointment with their clinic.  He then went over my med list, stopping at the Zoloft and said “how long have you been on that?”  Just about a week, I said.  “It can trigger or worsen akathisia, I’d consider stopping it for now, at least until this clears up.”

If I could have reached through the phone and hugged him, I would have.  “Um, I’m happy to try to convey this to my psychiatrist who prescribed that, but I know that sometimes its better if communications like this are directly between providers, is there any way I can put you in touch with him to discuss that?”  He said sure, gave me his email address and said that my psychiatrist can email him to set up a time to talk (no private info over email).

I’m also going to call next week and see if there is a note on the phone call that can be sent to my primary and GI doctors.

And I think I should send this guy flowers or something.