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.

Health anxiety/obsession

I’m tired of myself. I constantly think about, worry about, and talk about my symptoms and concerns…which is largely why I started this blog, actually. I don’t want to be totally tiresome to the people who still listen to me. 

I need a happy medium. One where I think about my body just enough to keep it propped up, fed, exercised, and appropriately hydrated and rested, but where I am not thinking about, or constantly needing to think about, how I’m feeling and what it MEANS. I spend too much time consulting all the things my phone and watch track and worrying about my blood pressure/blood sugar. I do need to keep track of all that stuff, but at some point, which I believe I’ve passed, it’s not helpful. 

I *know* my heart rate goes up when I get up and move around. I know my pulse pressure is often really narrow. I know that probably these things contribute to the symptoms I have, but whether they do or not at any given time does not really change anything. I seem to believe, deep down, that with enough careful obsessive self-observation I will finally figure out exactly what is going on to cause the symptom in question. That belief is probably false and leads to a LOT of wasted time. 

But I can’t just ignore all of it and don’t worry, be happy, because if I fail to accurately monitor how I’m feeling, I will end up horizontal either immediately or eventually for some span of time, feeling like hell. I have legitimate concerns that cause me to ensure I’m not about to kill off my kidneys with high blood sugar or hypertension or collapse from low potassium, and it’s indisputable that if I fail to rest when I need to the consequences are dire. When I ignore how I’m feeling and push through, it goes badly. So I would like to develop a Goldilocks version of self-monitoring. Not too much, not too little, but just right. 

It’s as if, after spending months if not years lying around feeling totally at the mercy of unknown forces, now that I have a diagnosis that explains what happens to me, I now feel overly dedicated to figuring out how to CONTROL IT. Well, that probably isn’t possible. Railing against fate has been replaced with trying to control EVERYTHING. Not helpful. 

If I have a good day, I wring my brain out trying to figure out what magical thing I did or did not to cause that, so I can do it again, and the converse applies to bad days. Best I’ve figured out so far is that mostly shit just happens some days, and I may never know why. 

Also on my wish list: figuring out how to avoid feeling dimly frightened most of the time. I’ve had two bad, bad falls in the last year, one of which resulted in a broken hand. Those experiences seem to have left me constantly anxious and hypervigilant almost all the time. I detest, for example, just having to cross a concrete parking lot. Because that would be a hard surface to fall on. I get all tense and experience a dozen falls a day in my head, most of which never materialize. Again: lots of wasted time and energy. Do I need to exercise caution about falling? Absolutely. Do I need to let it take over my life? No. 

I seem to have accepted having a chronic health problem that needs daily TLC. Now I need to accept that after I’ve done what I can to provide that TLC, I need to let go and live my life as best I can.