Doctors: POTS is not a thing

I’m pondering this week why it is that doctors mostly seem to disregard POTS and any symptoms of POTS. Why is this such a battle?

My PCP sent me to the ER a few months ago because I had more bizarre symptoms than usual: worse chest pain, increased dizziness/confusion, and sudden all-over pain except for my hands and feet, which were numb and occasionally blue. That visit was harrowing even at the time. The doctor was, simply, a bitch. She didn’t let me finish a single sentence and when I couldn’t produce a photo of my blue hands she rolled her eyes and just walked out of the room. Nobody asked for a health history or med list. Not surprisingly, nothing helpful happened and I went back home feeling exactly the way I did when I went there.

Well, it’s not the first or even 10th time something similar has happened, so I was pissed off about it but resigned. UNTIL. I started getting bills my insurance would not pay because the ER said I went there for a non emergency. In what universe are those symptoms a non emergency? I have bizarre symptoms on a daily basis and would not bother wasting my time unless I was seriously concerned. Even just common sense would dictate an EKG and orthostatic vital signs at a minimum for those symptoms. But on top of that I spent years as an ER nurse and can state with some assurance that those symptoms would warrant cardiac enzymes and at least the suggestion of a neuro workup of some kind. Confusion and numb limbs are kind of scary.

I found out not too long after that that I had serotonin toxicity, if not serotonin syndrome, and that is a Bad Thing that really can kill you.

This situation has pissed off my PCP and she is writing a letter to my insurance company, so we’ll see what happens there. At least I have SOME doctors in my corner!

But why do so many of them roll their eyes and get so hostile? I have theories. The main one is that particularly in an emergency room, if they can’t easily identify a possible cause of symptoms that they can’t see, it’s too much of a hassle and much easier to decide you’re just nuts. That’s pretty obvious. And if you actually HAVE a history of anxiety, you’re doubly screwed.

And what do they do when you go to an ER? They put you in a bed. If you have POTS, being put to bed solves the problem temporarily. The longer you lie there, the better your vital signs look. To your average doctor, a good-looking monitor means the patient is fine. What I can’t explain is why, when they’re told you have passed out or have an ORTHOSTATIC issue, they don’t even check this out. Orthostatic vital signs should be the standard of care with these complaints, but failing that this is a very easy thing to verify: just let me stand up and then watch what happens to my vital signs. My own doctor even told me “the next time this happens make them watch while you stand up and let your vital signs get all crazy.” It’s too bad this is her best idea and that I have to do this, but it probably is the only way to “prove” that I’m not nuts.

The problem with that, at least with this one visit as an example, is that I felt too sick and confused to advocate for myself. Strategic error: TAKE SOMEONE WITH YOU TO THE ER. I’m used to functioning while I feel like death warmed over and forcing myself to act like I feel fine so I do that automatically, but that isn’t a good way to convey that I actually feel like I am dying.

Which leads me to another possible problem. Doctors are trained to consider patients’ REACTIONS to their complaints. Like, it would be noteworthy if someone came in with their leg off and seemed unaffected by it. People who complain of 10/10 pain while they’re texting and eating fast food are probably full of shit. That is a reasonable thing to consider, obviously. But if you live every day with pretty miserable symptoms you can’t go around acting shocked and appalled by how bad you feel. You learn to normalize it and not appear miserably ill. You get so used to your fairly alarming symptoms that you do calmly discuss them. That may look clinically odd. In fact I’m sure it does.

But I don’t see a good solution. Am I supposed to work myself into an emotional frenzy just to get a doctor to believe me? That seems histrionic. And if I do make myself look really anxious, won’t I run the risk of contributing to the conception that I’m just an anxious mess?

I don’t know how to solve any of this. Until doctors start actually listening to me and believing what I say, I predict having to just fight with them all the time. It’s very concerning and exhausting.

Life, or shell? You be the judge

I have some situational depression going on here, and I’m afraid to mention it to anyone because (a) then they will write off all my physical symptoms to depression and (b) the only thing that they could do is throw antidepressants at me. I’ve already taken All Those Meds and they don’t do a thing. Because I don’t have depression.

I’m just tired. I’m so tired, all the time, that even trying to think of something I would enjoy doing makes me feel more tired. Anhedonia? Maybe. But pretty much anything other than lying down somewhere makes me so much more tired that even thinking about doing it decreases the possible enjoyment. Here’s how it works.

I think, I should read a book. So far so good. To do that I have to get up and go GET a book. Right away I’m stalled at “get up.” IF I can get past that and actually go get a book, the next obstacle is how to read it. If I lie in bed holding a book my hands go numb within 5 minutes. So then I have to sit up, which is all right. But then there’s the vision problems and brain fog. Some days my pupils stay dilated for no good reason and I can’t see very well. Most days my vision is just randomly blurry. That complicates reading. And not infrequently I just can’t concentrate enough to read. It’s tiring.

Cooking? I used to love to cook. And I would feel better if I could eat some healthy food. But this is a disaster. Not only does this require a trip to the store at some point, which is one of my worst chores because of all the walking and standing still, but it also requires a lot of standing in the kitchen, plus bending over to get stuff and then standing up again. And there’s the random nausea and bloating thing so I know if I manage to get through all that and cook and eat something, I may feel sick afterward anyway.

So that’s how my “anhedonia” works. I don’t think that’s what it is. It looks like depression, but I really think if I could figure out how to get even a tiny little whiff of energy ever, I wouldn’t be this way.

POTS and serotonin

I’ve been totally preoccupied with medical crap the last 2 weeks. My PCP started testing me for carcinoid syndrome because I reportedly turn red when I’m about to fall over, and the 5-HIAA level was like 20 times the normal level, so she did blood work. On that my plasma serotonin was really high but chromogranin A was normal, so the endocrinologist says it’s probably NOT carcinoid but rather some exogenous Thing increasing my serotonin. I did find 5-HTP in a supplement recommended by my naturopath so I’ve stopped that and we will repeat labs here in a bit.

PCP also wondered whether my worsening symptoms in the last week are actually serotonin syndrome, and that’s a good theory but there’s no way to find out. My bad symptoms (tachycardia, brain fog, etc) qualify for both serotonin syndrome and dysautonomia; I do think it would be odd to attribute tachycardia to serotonin syndrome rather than POTS since it happens only when I’m upright. I would think with serotonin syndrome my heart rate would not be 60 all night long while I’m lying down. But really I have no idea, and neither do my doctors.

So I’m wondering if this high serotonin thing is just another jacked-up dysautonomia thing. I found one resource saying that people with autonomic dysfunction have problems metabolizing serotonin, but I can’t find any actual medical research to support that. I found another resource saying that there is a strong correlation between dysautonomia and MTHFR/methylation issues, which I also have, but it can’t be very strong because I can’t find much about it.

On a related note I have to wonder about my mood and the serotonin. I weaned myself off all psych meds as of 4 months ago (except, I suppose, for the 5-HTP supplement thingy) and overall my depression has been much better. I’m guessing that had anyone checked my serotonin while I was taking Prozac, Abilify, etc., it would have been a lot higher. It seems that with all that serotonin I should be a very happy person! But no. I can’t sort this all out. I feel sad and hopeless still, but I also have a pretty new chronic illness diagnosis and lifestyle-limiting symptoms, so to me it would actually be kind of weird if I DIDN’T have some reaction to that.

On meds: I tried clonidine for a couple of days and it put me into a HYPERtensive crisis. I can’t figure that out by any means. Except, again, it’s just some weird shit with my body that I can add to the already-large category of weird shit with my body. My blood pressure is not really high OR low on its own, but it is stuck at a low pulse pressure which I believe relates to a lot of my symptoms. My diastolic is a BIT high and my systolic is a BIT low, but apparently I should stop monkeying with either my heart rate or my blood pressure because doing so has in every case worsened my symptoms.

Finally, I am utterly exhausted from monitoring myself and my symptoms. But I currently believe that monitoring my symptoms is the only way to go; sometimes they correlate with weird vital signs and sometimes they don’t, so paying attention to symptoms and triggers is about the only reasonable way I see to approach an even remotely normal lifestyle. Falling all the time is not a normal lifestyle, and the only way to avoid that is to constantly monitor how I’m feeling. And all that physical introspection is just wearing. I don’t know how to fix that. I just hope that I’ll get used to all of this and the monitoring will become more automatic, that this will become just part of my life and not my whole life.

Can’t work this week

I’m feeling shitty because after feeling pretty horrible for the last 2 weeks, but managing to go to work, I now feel so horrible that I couldn’t work yesterday and have had to call in again today. Fucking POTS and/or carcinoid and/or whatever else is conspiring to steal my life. Dizziness is so severe I can barely just walk around in my house, and I have a TINY, tiny house. Brain fog is so horrible I can’t even read a book.

It sounds like it would be nice to have an excuse to take off work, but in reality the suck factor is fairly severe. I can’t do anything. I’m tired but can’t sleep all the time and don’t particularly want to sleep my life away anyway. I’m too dizzy to even sit up for very long, and having to lie down when you’re not sleeping is a paramount example of boredom. I’m so pissed at my body. I mean just get up and DO something, for crying out loud.

Is this what chronic illness does to you? Just steals away your life, a little bit every day? I’m railing against just being unable to do things I feel like I should be able to do.

On the carcinoid front, I had more labs drawn yesterday so just more waiting on those results. My PCP sent a referral over to the nearest Big Medical Center to see if someone there has any ideas. I did finally get a glimpse of my own “flushing,” which until then I’ve just heard about. I felt like I was about to fall over and felt hot, but was safely seated, so I took a selfie and sent it off to a coworker. She said yes, that is what people are talking about. I thought my whole head must be red, but it just looks like my cheekbones and chin are stained red. It does look pretty weird. I’m a very pale person normally. But it really doesn’t look all that dramatic to me compared with what I was imagining when they described it.

So here I am, awake and with nowhere to go and an empty day facing me.

On victimhood

QOTD: The issue is not whether others see or care. The issue is whether we see and care about ourselves.

This caught my eye because I seem to care unreasonably about what other people think about how I feel. I get so mad when I am blown off by others, when they think I’m making it up, and when I don’t feel like they are paying attention to how sick I feel. I think in some ways this is understandable and unavoidable: when you feel like death you do want those close to you to acknowledge you feel bad. Witness any man with a cold.

But the quote makes sense. What point is there is convincing anyone else I have pain? The real problem is convincing myself, which sounds ridiculous until I consider how much time I spend acting like I am just fine and therefore not addressing what I need to address to NOT feel sick. For that matter I spend an awful lot of energy convincing others that I am NOT sick. I’m thinking of all the times it would be hard to explain for me to sit down when I need to, so I force myself to “push through” dizziness and hope that I don’t fall. Or weeks like this when I feel especially bad but don’t have time to rest enough, so I try to ignore my symptoms and flog myself through until I can have a day off to sleep all day.

It seems to make more sense and have the potential to result in more balance if I focus on convincing only myself of the gravity of my pain and symptoms and treat both appropriately. I know this sounds like emotional kindergarten, but that’s where I am most of the time. Especially with this chronic illness thing. My brain defaults to denial for almost every problem I’ve ever had, so unsurprisingly I simply revolt against BEING sick. I’m not sure how I go from that to being pissed that my friends don’t understand how bad I feel, but I manage it.

I don’t have a theory yet about doctors. I feel like I do need to convince THEM that I have whatever issue I’m there for, and I get really mad when they blow me off. The entire medical institution blew me off for years over what’s turned out to be POTS, and that still makes me angry. If you don’t have an easily identifiable cause for a symptom they can’t SEE, then their default is that it’s psychogenic. I understand they get frustrated when they test for all the obvious things and can’t figure out what’s wrong, but I don’t think that justifies their blowing me off. I’m not asking for drugs; I want to know WHY I am so often exhausted and hurt all over, in hopes that that thing can be fixed. (I’ve pretty much decided I probably have some autoimmune Thing that is hard to diagnose, because that situation seems pretty common and occurs all the time with POTS in particular.)

Bottom line is I need to become a self-care ninja and stop giving a fuck whether anyone else thinks I’m justifiably sick or not. Today I am exhausted and ache all over, so I know I have to pay really close attention to not pushing myself, to eating properly, and to resting. To hell with what anyone else thinks about it. If I get dizzy and need to sit down, then I need to sit down. That last part is the hard part for me when I’m working. I want to look like superwoman but am definitely not. I usually CAN push through dizzy spells without falling, but why take the chance? I’ve got to rest when I can and get really crazy and take a lunch break, for starters. We will see how this goes.

Got the blues

I felt shitty Thursday and Friday with POTS symptoms, then Saturday I woke up with normal vital signs but feeling like arse. I felt like fire was running through my veins. Everything hurt except my hands and feet, which I could barely feel at all; also my vision had gone funny and my muscles were weak, kept dropping stuff. My PCP told me to go the ER, which I did, although I don’t know why because the same thing happened that always happens. I’m pretty sure if I went to an ER already dead, they would still say it was just psychological. As a bonus, this doctor was a sarcastic bitch.

I’ve been in bed pretty much all weekend feeling like I’ve got the flu but without the fever or cough. I don’t have any theories for why I hurt all over and feel so weak (I can feel my hands and feet again). I’m so gloomy. Is this my life now? Feeling terrible a lot of the time with no reason behind it? I’m glad that POTS explains a good portion of what ails me, at least.

This ER doctor pissed me off by asking (sarcastically of course) what my internet search told me I had. Easy for her to be glib, but it’s pretty apparent to me that unless I have a pretty good idea what’s wrong with me and what might help it, I might as well save my money. I told her I didn’t need the internet to be concerned about strange neurological signs, but otherwise I was too tired and swamp-brained to argue much about it.

My lab results were all normal except for LOW BUN and creatinine, which I’ve neither heard of nor seen before. Her explanation was it could be liver or pancreatic disease, but since I didn’t have any signs of those there was no need to worry. How would she know? I got out less than one sentence about why I was there, she took no history, never asked what meds I was on, anything. Earlier today I tried to figure out what low BUN and creatinine could indicate, but other than the possibilities she mentioned there isn’t much out there. It’s when they are high that obvious things are wrong. Logical processing makes me wonder if it’s from drinking too much water, but I lack the necessary medical degree to figure that out. My lytes were all dead normal.

I hope there isn’t anything much wrong with me. What I dread is the story I’ve heard over and over: “I kept telling doctors x and y, but they kept telling me I was just fine and should relax more, and here I am with this horrible illness that should have been caught earlier.” Happens ALL the time. I just feel like something ain’t right, like badly not right.

Bad POTS day

Yesterday SUCKED. I’m going to describe the suckitude in case anyone wonders what POTS is like. I knew it WOULD suck because I woke up yesterday feeling like I’d been flattened by a steamroller.

First, my vital signs. My BP apparently was relatively OK all day. I didn’t check it much because I was super busy, but I did a couple times and it was all right, even had some pulse pressure. My Watch reports that my resting HR was 67 but the range was 57-179, avg 95. To put this into perspective, on most days my HR runs 75-85 when I sit down awhile during the day (doesn’t quite reach the resting rate), and when I stand up and walk a little ways, it goes up to 120. That isn’t normal, and it is not bad POTS, and it does make me feel pretty tired by the end of the day. But by no means is it catastrophic. If I do any real activity (sweeping the floor, folding laundry), it regularly gets to 130 or 140, and at that point I feel pretty bad. Yesterday if I so much as TWITCHED it went to 140 without passing Go. Walking slowly? 150.

The symptoms that silliness got me included my vision going speckly and my feeling lightheaded every time I had to walk anywhere: that means I spent the whole tiresome day terrified I was about to fall over. I felt bad enough I was afraid of actually fainting, which I haven’t done for a long time. Several times when I was just sitting and talking, my Warning Feeling stole over me…IDK what it is, but I know what it feels like. I get hot all over, my stomach clenches like when I’m about to barf, my brain ceases to function, and my head and all my muscles feel heavy and really weak. Time slows down and my hearing gets muffly. THIS SHIT IS DISTRACTING. And the fatigue. With those heart rates my body seems to think I’m logging long hours running down the road, and I feel as if I have been doing exactly that. It becomes imperative that I go home and crash. Which I did, when I noted the HR of 179. That? Is a good day to make it a shorter day.

I am grateful that as POTS goes, I seem to have a pretty mild form of it. I am usually able to function normally or at least it looks that way from the outside. I am always grateful that my BP does not seem to drop. Hang in there, BP! I’m pretty sure if it started to drop as my HR increased, I WOULD faint all the time.

Gratitude notwithstanding, days like yesterday befall me seemingly randomly, which sucks. I can’t really plan a busy day which is not the current day, because I have no idea whether I’ll be able to do it. I haven’t been literally unable to get out of bed for a couple of months, but kicking yourself through a day even though you feel like death feels horrible even if you are able to do it. I have some assurance through pattern tracking that once I have a day that bad, it is necessary for me to lie pretty much in bed for a day to recover or those days will just continue. I have this weekend off, so I will be doing that. PARTY TIME. Not.

So yes! This sucks! I’m glad that whoever is stabbing my POTS voodoo doll doesn’t do it every day all the time, but I never know how I’m going to feel when I get up in the morning. Imagine if you had a flu you couldn’t EVER shake. Some days you felt all right but others, the flu symptoms randomly got bad again. Everyone knows what it’s like trying to be up and around with the flu. POTS is that bad. Some bad days are inexplicably followed by just-fine days, but I can tell already that today I’d best plan as low-activity a day as I possibly can.