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.

Florinef flu: FAIL

The same thing happened when I tried Florinef again, even at a tiny dose. Felt great for a few days, felt OK for a day but didn’t pee hardly at all, and then felt horrible on day 5. I gained 4 lb overnight (expected, because of the no-peeing thing the day before) and felt like I had the flu and itched. My joints ached and I had body aches like with the flu, I felt exhausted, and I itched all over, including having a scratch in my throat that kept making me cough like crazy. I took some Vistaril and felt a little better. I don’t think it’s possible to be allergic to a steroid, nor to become allergic to one after 5 days exactly, but there you go. It seems safe to say this is not the drug for me.

Can I POSSIBLY take ANY drug and have a normal reaction to it…either I react extremely to a tiny dose, or I need a horse-sized dose for said drug to affect me at all. I’m not right, pharmacologically.

Today I am having a bad day so far and I just got up; I had to pry myself out of bed and am so tired I am having my “too tired to function” thought processes. Those go like this: I could call in sick. I could call in dead. I could go back to bed for 28 minutes before I absolutely have to be up. I could skip my shower and sleep another 15 minutes. I could rearrange my schedule to start work later. I could just go back to bed and put my phone on Do Not Disturb because who cares if I get fired, I’m never going to be able to work anyway. Yet here I sit, not going back to bed.

The dizziness and falling parts of POTS suck for sure, but the fatigue is what really gets me. It’s what motivated me to find out what is WRONG with me. I wish I could explain this fatigue, because before I experienced it I thought “fatigue” just meant really tired. It is WAY worse than that. It’s both mental and physical; it’s having your brain refuse to handle simple thought processes and suspecting you really may be unable to get up. And when you do you almost wish you hadn’t because you feel. So. Exhausted. I can’t concentrate on anything when I’m feeling this way, and I hate the feeling. One time I took Phenergan and couldn’t really wake up for 32 hours, and it’s similar to that feeling, just like fighting off being drugged.

I’ve learned that when I feel this tired I need to rest. If I don’t it will get worse. I run the risk of ending up in bed unable to move even if I’m able to motivate myself to try it. Problem is, I’m trying to lead a normal life so I have a 50+-hour a week job for which if I miss a day there’s no one else to do my job, so I have to double up when I get back. It’s not good at all to miss a day. So just as I’m doing today, I push myself. maybe I’ll be all right tomorrow and maybe I won’t.

Sometimes I get away with ignoring my symptoms and proceeding anyway: usually I don’t fall when I feel like I might. Usually I’m able to get through my day when I feel tired like I do right now. When I do end up on the floor or in bed I castigate myself. “You KNEW you were having a bad day and should have paid attention!” Well, that’s true, but if I coddled every single symptom I would never do anything.

Very frustrating.

POTS, MTHFR, and poisonous vitamins

Someone posted on a POTS board about also having an MTHFR mutation. Immediately other people chimed in. That caught my attention because I’m heterozygous for the MTHFR 677 gene. Because 6 months ago I’d never heard of either POTS or MTHFR and now I’ve randomly heard of a bunch of people who have them both, that makes me wonder. What are the chances?

MTHFR is not a disaster like POTS, at least for me. I learned about it when I went to a naturopath for depression, thinking that depression alone was what was making me unable to get out of bed. He looked at my existing lab work and listened to my story, and about 10 seconds later he said he wanted to test for MTHFR mutations. He sent me away to read about it. What little research there is either says MTHFR excitement is a bunch of nothing OR that it can cause everything from dandruff to heart attacks, so I was skeptical, but I had the tests done. The proof is in the pudding.

As strange as it sounds, my vitamins had been poisoning me. MTHFR regulates methylation in the body, and you need that for all kinds of stuff. I have a reduced ability to reduce synthetic vitamins into the form the body can use, and some vitamins affect things you really don’t want to go wrong, like mood and cardiovascular disease. Eating folic acid, instead of folate, just blocks my folate receptors to the real stuff, and folate needs B12 to work its magic, so also taking non-methylated B12 makes things worse. I get lost in the biochemistry but essentially with this mutation you end up with high homocysteine (which is bad), I had crazy high cholesterol (also bad), and somewhere down the methylation line it affects serotonin and dopamine (hello mood troubles). I’d been choking down regular multivitamins for years and hated them because they made me feel sick half the morning. Who gets sick from frigging vitamins?

Easy fix, though: just take already-methylated B12 and folate, eat your leafy greens, and avoid synthetic folic acid, which sadly is in EVERYTHING because of the neural tube furor. In just a few weeks I was off my psych meds and feeling fine, and I haven’t had any issues. It was like magic. Decades of psychiatry could have been avoided with the proper B vitamins. It’s easy to test, too. If I take one of my methylated vitamin caps every morning, I feel pretty good. Push it up to 2 and I’m a nervous wreck. Overmethylation is a Thing. Like I said I get really bogged down in the biochemistry. You’d think I’d be shouting from the rooftops that I finally found a cure for my mood problems, but that discovery was immediately overshadowed by POTS. And I’m not due yet for a lipid/homocysteine check, so we’ll see whether those numbers get any better.

One characteristic of depressed people with MTHFR is that antidepressants don’t work. Mine usually worked for a short time, really short, and then it was like I wasn’t even taking them. So they started adding stuff to them, notably Abilify, which perked me up more than the others and for a longer time. Abilify caused a mental struggle. I did not like the side effects, mostly weight gain and the good chance of ending up diabetic (you know I dread diabetes), so I was on and off, with varying results.

Now here I sit about to go over the diabetes ledge with no wiggle room, if I haven’t already gone over, and I’m pissed about what medications can do to you. No, I don’t KNOW that Abilify did this to me, but that combined with having had VITAMINS make me sick gives me a pretty decent fear of putting ANY pills down my throat. POTS is making me confront that fear with Florinef, and I’m not a fan.

What if I’m poisoning myself for no reason? What if my POTS symptoms could be lessened in some other way that we don’t know about yet? I’d be diabetic and steroid dependent for no reason. This merry-go-round rarely stops. I decide to start and stop Florinef all day long in my head.

I’ve always been challenged, shall we say, at letting doctors manage my meds. I tend to tinker with them on my own, with varying results. The main result is that often I don’t outlast the side effects to see if the drug in question actually helps me. My current doctor has seen me on the floor feeling like death and understandably is confused at my reluctance to take a drug that seems to prevent that, but she doesn’t understand the depth of my phobia about being diabetic, either. It really is a panicky choice for me: fall all the time or be diabetic? To make things worse, MTHFR is reported to make metformin a poor choice, and normally it would be first line to control my blood sugar.

I have doctor issues. I work with doctors, so I’m really clear about the fact that they often do not know what they’re doing. And as a patient I’ve been blown off and misdiagnosed for decades, so that doesn’t help. Now I have a new doctor who does seem to know what she’s doing and who actually listens to me, so those things should mean I just do what she recommends, right? But what about? But what about? But what about?

And now we are back at my seeming need to control every single thing my body does, which is illusory and will fail. My autonomic nervous system is a mess so by definition I have no control over what it does.

As for my Florinef trial, once again it’s markedly and nearly instantly improved my POTS symptoms. Yesterday I went to a class that necessitated being up and down from the floor and didn’t feel too bad, and I successfully went to the grocery store, which normally I dread because it involves too much walking and stopping. For some reason it’s the stopping that seems to get me. I did get a high HR notification when I was just cooking dinner, and I could feel it racing, but it did not come with the brain fog and muscle weakness that you would expect. My pulse pressure was 40 at bedtime, so that is working. Could be such a thing as the Florinef doesn’t bring my heart rate down but does some other thing to keep the Really Bad Symptoms away. Unfortunately I clocked my blood sugar at 215 so I freaked out.

So as usual…I can’t control any of this except what I do to try to combat it: take the meds my (respected) doctor suggests, track the stuff I need to track, get a lot of salt, drink my 80 oz of water, wear my compression socks, and keep exercising. I’m up to 17 min on my recumbent bike and it’s not making me nearly as dizzy as it did when I started.

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.