neuro today, gone tomorrow

I saw the new neurologist yesterday.  I saw him once before, this is someone who was trained in autonomic function and who has opened one of the only autonomic function labs at a hospital in my area.  Yesterday’s appointment was a follow up to talk about blood test results (negative) and where to go from here.  Oh and to let me know that he’s taking a leave for at least a year because his mother is sick.


I liked him.

This is the second neurologist I’ve had since moving back to Big Historic City in 2009 who has left his practice.  He’s trying to do it right.  He says that the practice is going to try to find someone with autonomic dysfunction training to replace him and that he’ll be here until the end of April, asked me to check in by phone or email before then.

So what’s new from the appointment?  Other than “Good bye new neurologist?”  My bloodwork was negative for Antiganglionic acetycholine receptor antibodies and antineuronal antibodies.  That’s good, it means it’s unlikely that it’s cancer and less likely that it’s autoimmune autonomic ganglionopathy.  Then what is still on the table, Mr. Patient asked my soon to be former neurologist.  The most likely is the Ehlers-Danlos, other than that, there’s also mitochondrial disease – it’s hard to diagnose and not very treatable.  Well, better the devil I know, so I’m going with Ehlers-Danlos.

One interesting thing that did come of this appointment.  Sleep.  I don’t sleep well anymore, had a sleep study and I saw it as relatively useless since it just said what I knew going into it:  I don’t sleep well. I fall asleep but I wake up a lot, so much that it basically turns my night into a series of small naps rather than good, restful, sleep.  My soon to be former neuro said that he’d been trying to get the results of my sleep study but failing.  “Oh I can get you those” I say.  “They recommended a follow up study with a CPAP because I guess they say I might have upper airway resistance syndrome….whatever, I just wake up every night in the middle of the night drenched in sweat.  I doubt it’s gonna help that.”  Turns out that I am very wrong about this.  I should have realized, I don’t sweat.  Unless I’m passing out.  That should’ve been a clue that the waking up in sweat was something other than being overheated.  My soon to be former neurologist explained (and I won’t do it justice here, so pardon my paraphrasing):  when you have something like sleep apnea or upper airway resistance – they’re really kind of the same thing, just a little difference in the mechanism and severity – it can activate a sympathetic response (hence the sweating).  There’s also evidence that it can contribute to the development of cardiac arrhythmia.  Hands up, who just had two weeks of intense palpitations and a racing heart rate for no good reason?  Oooh, oooh, me!  I did.

Ok, to sum up, what he’s telling me is that the waking up drenched in sweat is probably caused by the airway obstruction rather than in addition to (which is what I thought), and that this potentially has much further reaching consequences than a bad night’s sleep.  I’ve done a bit of reading since the appointment, and it sounds like it’s a sort of “chicken or the egg” thing with regard to autonomic function too.  I.e. bad one makes for bad other, although which one comes first is up for grabs.  But maybe fixing the sleep could help with some of the autonomic function.  Gosh that’d be swell.

Now, I just need to get my ass into the sleep lab in the next week or two and maybe this will all have been worth something.

Old school

Got a holter monitor on today, on account of the screwy stuff my heart is doing.  Maybe just POTS gone wild, but I need to make sure I’m not ignoring a potentially bad rhythm.  So 24 hour monitor it is.

While the monitor which records the signals from the leads has seen significant improvements since the last time I had any sort of prolonged monitoring device, the human data recording side has NOT.  I.e. there is still a crappy photocopied piece of paper that they hand out and tell you to record your activities, medications, and symptoms on.  Why is this not electronic?  Why is there not a “holter app” produced and distributed by the company that makes the monitor, that pairs with it via blue tooth and where you can record this stuff instead of scrambling for a sheet of paper and pen while short of breath and trying to remember to also push the button on the monitor?  Hell, I’d even take just an electronic log that DOESN’T pair with the monitor but at least gives you the freedom to program and then select symptoms with just a few taps.  It could be set up to do languages other than English on the patient side, to read items out loud or enlarge the font for patients with vision problems.  It could even prompt you to enter in activity if you haven’t tapped in a while, so the docs who are going to have to read and interpret your monitor’s data will have a better sense of whether you are at rest or not.

We have this technology.  For the love of god, why isn’t it in use?

I suppose one answer is that most cardiac patients are elderly and will be like “you want me to do what now?”  But most elderly cardiac patients also are not going to be able to easily read this tiny, degraded print on the paper log they hand out, or have arthritis and are gonna have a hard time writing legibly in those tiny little rectangles they give you to record your symptoms and activities.  How about for people without a mobile device, they give out a tablet where patients can tap in their symptoms?  It would be SO EASY.

I think another and more on target answer is that the human factor side of medicine is not always given the attention it deserves – not in a real, practical sense.  It’s so very reductionist and so very medical to ignore the patient side of things, to just say “now you need to make sure you do this difficult and pain in the ass thing over and over so that this test/treatment/whatever will work right…” and then just leave it at that.  We know that if you want better results, you need patient compliance with so many things because technology is only going to get you so far and very few tests and treatments are 100% patient-proof.  So acknowledge this, and incorporate it into the new designs. Sure, a smaller, more compact monitoring unit is going to help.  But how much better if in the next generation of at home monitoring devices (blood sugar monitors, BP, cardiac, EEG, the various gastric things they can now send you out with) used this spiffy new technology to make it easier for the patient to record their side of things?

done, for now

Well I’m all done with the three specialists that my primary care referred me to.  Liked two, disliked one.  The cardiologist was nice, I blogged about my appointment with her already.  The nephrologist was, well, I blogged about that too.   And yesterday was the endocrine appointment.  The attending was decent.  Moving slowly, he wants me to keep a food diary and record my symptoms and blood sugar.  Not surprising.  Last night, my husband and I went looking to see if “there’s an app for that”.  Yep.  The ones we found were more for exercise/weight control type stuff, but I think one can be adapted to suit my needs.  Exportable data for Excel format too, which is neat.  Follow up with him in 6 weeks, at which point he’ll decide if it’s worth putting me through tests that actually kind of suck (my AM cortisol was a wee bit low – what they do beyond that involves putting your adrenal glands through a probably unpleasant work out, from what I understand).  So yeah, I’m ok going slower on that.

What was remarkable about the endocrine appointment was the very good experience with the 1st year resident at the B.A.T.H. endocrinology clinic who took my history.  For a guy who’s been a practicing physician for at most one month, he did a stellar job.  Hell, he’d rank as stellar when put up against some people I know who’ve been practicing for 20+ years.  I’m planning to write to the folks at his residency program to tell them this (maybe minus the dig about the 20+ year people).  I was a little concerned that praising a resident for being able to respectfully and compassionately navigating a complex history from a historically, um, high maintenance patient would set him up to be seen as somehow too “squishy” for medicine.  That concern is somewhat influenced by what I saw in grad school – PhD students who cared about teaching and students sometimes found that care used against them as a reason for why they were not where the faculty thought they should be in things like research and publications.  This was a seriously raw deal, since most PhD students are chronically underperforming in those regards when there is no research money to be had and only teaching stipends, but this didn’t seem to deter some of the more obnoxious faculty.  I also was thinking of my experiences working as a unit secretary, which admittedly were usually on surgical units and thus may not transfer well to internal medicine residency programs.  Before you shake your head and tsk tsk, keep in mind that I did marry one of those bastards so it’s not like I went in with prejudices, i.e. thinking all surgeons and surgical residents are assholes.  And I still don’t think that.  But I had plenty of opportunity to see the culture, to see nice residents bullied for being too nice, to see women on the orthopedic surgery service teased and hazed, to see the bitterness that can come out when idealism-based traits clash with the sometimes very cruel realities of residency.

So what did I do?  I asked an MD, because I figured he’d have a decent idea about whether the culture of an internal medicine residency program would be receptive to this sort of feedback.  And I’ll also be asking my primary when I see him next.  Which brings me to…

Thursday night, I had an appointment with my therapist (psych).  We spent a big chunk of time talking about how shitty I’ve felt this entire month.  The dizzy/vertigo/off balance thing has plagued me nearly every day of July.  How horrible!  Truly.  It sucks.  I had been struggling with whether to call my primary and say “hey I know I’ve got all these appointments and tests and shit to deal with the intermediate-long standing crap that’s up but right now, I’m having this new thing and can you help me?”  My therapist thought that was fine to do and encouraged it.  We talked about why I was struggling with this (afraid I’ll be “that patient” who’s always got a new complaint and what that means for me, afraid there will be nothing they can do) and after going over some “how can I say this/what’s the best way to express what is going on and what I want from them?” scenarios, I decided I’d call the next day.  On my way out of the therapist’s office, literally, I was halfway down the hall, my phone rang.  It was my primary care’s office. “We’d like to see you,” said the nurse.  “Wow, I was just going to call you tomorrow!”  “Well great minds think alike,” she said.  “What time do you have next week?”   So I have an appointment on Monday.  Here’s hoping that it’s not just “we looked at everything so far and there’s nothing new to say or do.  You’re just fucked.  Have a nice life.”  They haven’t given me any reason to think that they would take the attitude expressed in that last part, but many other doctors have.  And the first part, well that’s just my chronic worry about all this rotten health stuff.

Tonight, I have a sleep study.  And Thursday, I have the capsule endoscopy.  And then maybe next weekend, the fluid deprivation test that the nephrologist ordered – maybe.  And then maybe I’ll be done for now, maybe no more filling up jugs with pee or passing out on tables for a little bit while I celebrate my husband’s 30th birthday (yes, he’s a young’un).  Wouldn’t that be nice?  Ah well, this is what I signed up for when I said “work me up”.  Let’s hope it leads to some answers and/or treatments.

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?

a little help

This week, I’ve needed a lot of help.  I got rides in to work from my husband, rides home from two different co-workers, and today my little brother is going to drive me to the doctor.

I’m not so great about getting help.  I have a hard time convincing myself that people will not resent needing to help me.  I mean, one or two “favors” is one thing but every day?  Multiple times in a week?  I have this basic, deep rooted assumption that it will be too much.

I have had this for a long time. I’m not sure where it came from.  On reflection just now, I was thinking that the guy I was with before my current husband might be part of the cause.  This boy’s name was Tom.  I say “boy” because although he was only a few years younger than me, he had the maturity of a 18 year old.  An immature 18 year old.  When I got sick with Lyme, he went from freaked out to useless in pretty much no time.  The relationship staggered on for a few years like that, but by the time it ended, him and his useless, immaturity enabling family had decided that I was malingering.  They didn’t say that, they said I was “no fun”, a “granny”, and many other worse things in private I’m sure.  By the end, it had gotten so bad that I was being blamed for any conflict between Tom and his family, and I do mean any.  Tom failed a class (in grad school, you don’t fail classes) and he and his narcissistic father got into a fight about it.  As his dad hung up the phone on him, he yelled something about Tom having “a problem” in his relationship with me and that Tom “needed to fix it”.  Let me just say for the record, I had been nothing but deferential to Tom’s family initially.  It wasn’t until after they promised help with things like a move and two surgeries Tom had and then left us high and dry that I started to voice any objection to their behavior, and even then, I tried very hard not to put Tom in a position where I was pushing him to damn them all.  I was careful not to trash talk them, even when they had done something really, truly rotten.  And believe me, they did do really truly rotten things.

Now I should mention that this is the boy who had type 1 diabetes and who treated it like a chemistry experiment.  That is, he’d eat utter garbage but dose with insulin to “cover” for it.  I had a suspicion that this probably was not a great way to manage diabetes, but it was his life and his body and I’m all about the autonomy.  Or at least I was.  Right up until he got gallbladder disease which announced itself with a nasty bout of pancreatitis late one night.  He was admitted to the hospital after many hours in the ER with Wendell (I don’t recall the ER doc’s last name, just his first) the Wonder.  Wendell the Wonder loaded Tom up full of barium and sent him off for a CT scan – a probably unnecessary CT scan (no other films, no no, just the barium blockade and the extra high radiation exposure CT).  Wendell the Wonder kept Tom in the ER thinking his pain would recede and abnormal labs would resolve just because Wendell was paying attention to them.  No luck.  Tom remained ill.  The CT didn’t show anything interesting.  Tom was admitted.

Tom had a HIDA scan which, the very bad GI doctor informed us, was “within limits”.  The bad GI doctor diagnosed Tom with Gastroparesis Diabeticorum.  I wanted to say “golly doc, I can assign fancy Latin names to shit too.  How about this one?  ‘medicus blennus“‘  Long story short, Tom had gallbladder disease and it took a month and an MRI to diagnose it post discharge.  In the intervening month, Tom would eat like an idiot and ask me to excuse it.  I had already said “I think your gallbladder is fucked.  You get sick every time you have a high fat food.”  I made low to no fat foods for him.  I knocked myself out doing this, but the family fed him things like pasta primavera with cheese and cream sauce.  We’d go out for dinner and Tom would say “Do you think I can get a bacon cheeseburger?”  I finally had had it with this shit, and started saying “I think you should decide for yourself.  I think I don’t want to deal with you being sick all night tonight if you do eat it, so if it were up to me, no – you shouldn’t.  But it’s your body Tom, and clearly you want the bacon cheese burger.”  I was not being passive aggressive, I had been very clear with Tom about how worried it made me when he got sick.  A puking type 1 diabetic is not ok.  I was just completely frayed – I couldn’t understand why he would put this choice on me.  It’s like someone who is stumbling drunk holding up the car keys and saying “do you think I should drive?”  I mean, what are you supposed to say the fifth, sixth, and seventh time they do it?  What do you do when you keep saying “no, I don’t” but other more important people convince him that he’s fine, that it’s not a big deal, that to cave in and limit himself is a sign of weakness not just of body but of mind and basic worth?

During this time and beyond it, I was struggling with endometriosis and the Lyme Disease left overs.  I had doctor’s appointments.  I got sick at work and had to find a ride home.  I passed out.  I missed deadlines in my PhD program.  I knew I needed Tom’s help in the day to day, especially during high volume work times.  E.g., I was scheduling my preliminary exams (for the PhD) and I asked him what month would be good for him.  We get two weeks to take them.  He and I decided on a period when he said he would not be at high work load and could do more of the day to day like shopping and food prep.  “Ok,” I said, “but please don’t start your dissertation proposal until I’m done, ok?  Because I know if you do, you’ll be immersed in that and you won’t have time for food and stuff.”

My prelim time came and about 1/2 week before it, Tom lets it drop that he’s going to start writing his proposal.  His advisor had recommended he do so.  What about our deal?  Well it seems Tom didn’t remember it.  Or didn’t give a shit.  Or didn’t think I needed that much help.  Or thought he could do both.  What he claimed was to not recall, but I had noticed by that point that he “forgot” pretty much anything that was inconvenient to remember or which created the kinds of conflicts that learning to handle is part and parcel of being a grown up.

Our relationship had been strained by his not taking care of himself throughout the gallbladder period, by his family’s just god awful behavior, and by his “forgetting” so many things.  We didn’t fight about my needs and what they meant for us as a couple.  He just shut down.  Ultimately, I and my neediness were blamed for the problems in the relationship.  By “neediness” I mean practical, physical things but also my reaction to finding myself not only without help but supporting this overgrown boy during a time when, for the first time in my life, I did not have extra energy-based resources.

So, this years long experience has not helped my belief that I can need too much for people, that people can burn out, that stressors like a chronic, unexplained illness can create resentment and distance and fractures in what was – under better circumstances – a rather nice, rewarding relationship (and what it can do in the not nice, not otherwise rewarding relationships is another story entirely).  But I know that all this just plugged into an issue I had prior to getting Lyme and not getting better, prior to the endometriosis going into overdrive, prior to the chronic diarrhea and weight loss and malnutrition, prior to the sudden but now chronic hip pain.

I’m not totally sure what that issue is.  I suppose this is what therapy is for.

Today, my brother is taking time off of work to come take me to a doctor’s appointment that I am ambivalent about.  It’s to see a cardiologist.  I have seen a cardiologist before.  But the new PCP is chasing down leads and one of them goes to cardiology.  I’m doing it, and it may win me another day on a monitor or stress test or whatever.  I doubt that it will show anything though, so I’m having a hard time feeling really committed to this.  And I feel like I may be “wasting” a favor, I may be burning through what I can’t help but assume is a limited supply of good, helpful intentions from the people around me.

“What’s going on?”

A friend recently asked this with regards to the health stuff.  She’s been a great friend through this.  She’s busy with her kids and her life several states away, but when we talk about my health problems, she listens and she asks questions and she expresses concern, support, and empathy.  I am so grateful for this.  Especially today, since it contrasts so sharply with some family of mine – specifically, my sister.

My sister knows I had my big follow up appointment on Thursday.  She called me Thursday and Friday, both times leaving a long voicemail message all about her.  Ok, whatever, she’s got her own stuff going on (looking for a new job to escape her PI who has modified the animal research protocols in her lab in bad, bad ways and who is truly an awful boss).  My sister and I talked today and we spent about 3 minutes out of the 45 minute phone call talking about my health stuff and then the rest was all about her.  And not anything new about her and her job search, but a replaying of the top ten greatest hits of what I call “fear and loathing in the biomedical research job hunt”.  She’s massively PTSD from all the family crap, and she has a tendency towards obsessive behaviors.  This was not a fun conversation.  Her transition from hearing about my medical news to the many minutes too long rehashing of the same old shit about her was quite abrupt:  “So, I don’t know if I told you but…” and then on to the thing she has told me nonstop for the last week.

Ugh.  Draining.  I’d understand if I was always unloading on her about my health problems, but truly I am not.  Part of why I blog so much on this shit is that aside from my husband, I don’t have anyone else in my day to day life that I do talk to about it.  Not honestly and unguardedly at least.  Privacy issues, stigma, and the emotional nature of dealing with chronic, disruptive health problems all keep me skimming the surface most of the time in my day to day.  I am very conscious of not wanting to “go on” about this stuff with people.  But I thought at least that my sister would give a shit about the outcome of all that testing.

Sometimes I’m such a blithering optimist.

So here’s what I wrote to my friend who asked “What’s going on?”  The topic started out because I asked if she had a suggestion on glucose meters (her husband’s got type 1 diabetes).  I figure this is a decent update for the blog too.

I got a new doctor who is doing an exceptionally thorough work up. So…had a glucose tolerance test and I’m hypoglycemic. I’ve been dizzy all damned week so he wants me to get a glucose meter to see if the dizzies go with blood sugar. I did a thing called a “tilt table test” a few weeks ago too. It’s meant to test autonomic function, which I guess in this case is really just about looking to see if your nervous system and your vascular system talk to each other right. And I failed it. They put you on a table and hook you up to a heart and BP monitor and you do all sorts of strange breathing exercises. Then they tip you upright to about 60 to 70 degrees so you’re basically “standing” without having gotten up and with most of your weight being borne by the table you’re strapped to. If you nervous system and your vascular system coordinate properly, you might get a little lightheaded but you don’t pass out. I passed out.

This wins me a cardiology consult and a nephrology consult (kidney). Cardio is to make sure it’s not an arrhythmia which has me feeling like shit all the time and which would account for the whole passing out/shittty vascular response I showed on the tilt table. Also, the doc heard a mitral valve murmur when I was in for my follow up (with dizzies).

Nephrology is because I guess I keep testing out as being dehydrated (that whole orthostatic hypotension thing, I stand up but my blood doesn’t) but having low sodium – that plus the feeling like shit plus the passing out on the tilt table might mean my body’s not balancing fluid properly. Apparently nephrologists check that.   Or this nephrologist checks that.  And hey, funny story – the nephrologist was a wee resident I and my sister worked with at the hospital wayyy back in the late 80s/early 90s.  Small world.

And then there’s an endocrine appointment. This is for the hypoglycemia and the feeling shitty.

I also have to pee in a jug for a day and do horrible things with poop and cups and vials and whatnot.

The common element in all of these appointments is the feeling shitty. The new primary care is being remarkably thorough about following the leads, which, while a bit of a pain in the ass to go through is good because I truly do feel fucking shitty and I’ve been dealing with this shit for years now. I’d like to know if there is something that can be identified and treated and he’s the first primary care I’ve had who seems to be interested in leaving no stone unturned before handing me the “well you’re just fucked, I have no answers, enjoy feeling shitty all the time, bye!” answer.

I signed myself up for this. After I discovered my boss was not going to be ok with me having surgery this summer and after I realized how much my (former) primary care largely was not good, I decided to (a) postpone surgery until winter break and (b) spend some time in the meantime finding a new primary care and hopefully getting a handle on some of this feeling shitty all the time shit.

So it’s finger sticks, cups, vials, and jugs for me for the next month or so.

That’s what’s up. And that’s also what happened to your care package that I said I was going to send you before the family road trip west. Once I saw this new primary in June, it was kind of like the staring pistol for a marathon….I had the tilt test and a round of cups and vials the week I was going to get stuff together for you. It ended up a bit of a mess. Sorry. I felt bad. Which is also why you haven’t heard much from me.

a rare heart condition