Anxiety, Dysautonomia, Autoimmunity

[momandmore]

My oldest daughter has a history of anxiety, feeling unwell, and having debilitating fatigue since she was in her early high school years. She is now halfway through college. She has some very slightly elevated auto-antibodies that haven't changed in several years. This summer, her rheumatologist decided to finally describe plaquenil to prevent her ever having an autoimmune flare that could cause damage. However, I've heard that people can have slightly elevated autoantibodies without having an actual disease when there's a family history of autoimmune disease and her father has a serious autoimmune disease. She has had no concrete signs of any autoimmune disease.

One time a few years ago, I took her heart rate lying down and standing and it went from 60 to 120. I never followed up on that but now--with my official diagnosis and two other daughters having heart issues--I'm starting to wonder if she could also be dealing with some kind of autonomic dysfunction that's been bothering her all these years and I wonder if the plaquenil has made it worse. Over the summer, she had a lot of dizziness and lightheadedness. Her doctors looked into her medications (zoloft and plaquenil) and both can cause orthostatic hypotension. Once while we were at the doctor, her blood pressure was super low, but then it became normal again. Her doctor just advised fluid.

Anyway, her problem now is that she has an unusual amount of anxiety that she can't shake despite her medication. I even had her thyroid tested again and that's normal. She does have a lot of work related stress but she keeps a good schedule and eats and sleeps as well as she can. But, of course, now I'm wondering about dysautonomia and if that can be contributing to this latest anxiety flare. Can the physical instability of dysautonomia trigger anxiety that doesn't respond to therapy or meds? She is bright and self-aware and proactive, and it's just sad that this unexplainable anxiety plagues her.

[p8d]

I have what I thought were anxiety "attacks" at certain times of the day. Turns out they are norepinephrine/epinephrine surges. You could ask for a test for that (saliva is more accurate I think). I think anxiety also is fairly common with Dysautonomia. I have Lyme disease along with POTS and plaquenil is used to treat confections that commonly occur with tick borne diseases. When you take any meds that hit the Lyme or others you get a Herxmeier reaction due to die off of the critters releasing toxins and you feel terrible until the body can get rid of the toxins. Lyme causing POTS is controversial but I think many Dr's now acknowledge it. What mainstream Dr's don't recognise is the chronic form of Lyme which has a symptom list that is extremely similar to dysautonomia. If you live in a known Lyme area you may want to get a test for Lyme by a Lyme literate Dr (llmd). The test that most Dr's use does not catch ~50% of cases, including me. I was tested 3 times. Just my experience. Good luck.

[ks42]

There are two branches of the nervous system: the sympathetic, which controls "fight or flight" and produces catecholamines adrenaline and noradrenaline, and the parasympathetic, responsible for resting and calming the body. Normally, these two work in balance. In dysautonomia, to put it simply, they are thought to be unbalanced, and you get a lot of inappropriate overactivity of the sympathetic nervous system. Meaning, her body may be going into "fight or flight" even when there's nothing provoking her, because of the dysautonomia. There are various theories as to why that happens - might be a compensatory mechanism, whereby the body is trying as hard as it can to push blood back up to the brain, a way that the body regulates unstable blood pressures that are fluctuating too much, or it may be sending off warning signals that the blood volume is too low (many POTS patients are hypovolemic). Either way, she may not have true anxiety; it may be, like p8d said, adrenaline surging through, which is common. Getting a handle on blood volume and getting the POTS under control can help reduce that.

[momandmore]

Thank you very much to both of you for your replies.

About the blood volume. I think this could very well be an issue. Last time when I asked her to go to get her thyroid checked, the nurse had to prick her three times to try to get blood. We had this issue many times before, too.

I don't know how to address it. I tell her to drink fluids and increase her salt, and add sports drinks when she's feeling off. But for some reason that's not doing it for her. Even though she tries, I think her thirst mechanism isn't working right.

It might be worthwhile for me to try to get an appointment for her over Christmas break with the cardiologist I see.

[statesof]

Similar to p8d I had a period of random panic attacks that I now associate more with random autonomic episodes. I have notice that my anxiety disorder has been worse since my POtS symptoms got worse, I feel like heavy levels of anxiety just seem to exacerbate the autonomic stuff and vice versa; now if I'm anxious my hr just stays elevated so even when I begin to relax psychologically it's like my body won't. I think the autonomic dysfunction just gives the anxiety more physical ground in which to affect me, if that makes sense.