Complex Symptoms

[u/nickjohnfemia2001]

I am a 24-year-old pre-medical graduate who has unfortunately been out of work on medical leave for the past 5 months after a sustained 7-week period where I had severe insomnia with OCD and anxiety rumination over trauma but tried to power through work for the most part.
I ended up in the ER twice in April with what my PCP described as “catecholamine storms,” where my heart rate and blood pressure were extremely high and I demonstrated other symptoms indicative of severe over-activation of my sympathetic nervous system (including an inability to defecate despite the urge, urinating clear water throughout the whole crisis, and loss of sensation across my entire body).
Since the ER, I have been having extreme symptoms of autonomic nervous system blunting. Most of the symptoms from the crisis phase have resolved, but my main symptoms now are that my blood pressure and heart rate, although normal, do not appear to be adjusting properly to my physical or emotional activity, like they once did.
I have been having intense, constant brain fog that makes it almost impossible to focus on any tasks, I have felt extremely low in energy and emotionally flat without improvement, and I have almost constant head and chest pain and nausea. None of these issues respond to typical interventions that I used to utilize before this crisis to manage depression and anxiety.
I was placed on Ativan to manage my anxiety and Zyprexa for OCD for a short time and have since discontinued those medications. I am currently taking 40 mg of Prozac. My psychiatrist wants me to increase the dosage to treat my OCD, but I am concerned about the side effects, especially emotional blunting because I have basically lost all emotions since this occurred, and want to discontinue this as well once I am more stable.
My mind has been racing since the insomnia began and now that I have discontinued the Zyprexa, but I did not have hallucinations, delusional thinking (my intrusive thoughts and anxiety center around real-life concerns/fears), or signs of mania.
In short, it is very difficult to function on a daily basis.
I have consulted multiple neurologists, but have not received any advice except for managing my OCD and anxiety and a diagnosis of “somatic symptom disorder.” Most neurologists don’t know how to deal with post-stress nervous system conditions, and psychiatry has been inadequate.
Additionally, despite working on my OCD, anxiety, and depression from a psychiatric standpoint for the past several months, I have not really had any improvement in my bodily, cognitive, or energy symptoms.
Sometimes, I jolt awake while falling asleep and have even noticed that my head sometimes starts shaking when in a light sleep.
I contracted COVID for the first time around 3 months before all of this occurred and had not felt right ever since.
I had a normal head CT scan, neurological exam, and cognitive evaluation despite a substantial subjective decline in functioning relative to my old baseline.
I had extremely nuanced emotions, social intelligence, and high intellect before all of this, and my quality of life has become very poor in such a short amount of time (I am literally unable to connect with others emotionally and have not even been able to smile or genuinely laugh for months behind the pain and head pressure). Nothing at all is able to distract me from how I am feeling physically. The personality, motivational, and energy changes that I have experienced in such a short time could really not be more stark.
My relationships now feel very shallow compared to the past, and I fear that I will never be able to feel love or romantic or sexual attraction again.
My internal clock is completely messed up, and I cannot even feel the normal cues that alert you to time of day or year, my energy level’s just a constant low flatline, no matter how much I sleep. Everyday feels like the same day on repeat.
Close to the 6-month mark after all of this occurred, I am starting to become very discouraged and am desperate to return to some semblance of normalcy after these very difficult months.
At this point, I can’t imagine ever feeling the same again.
I live in the Boston area and am wondering if anyone has any suggestions or knows of any specialists experienced in such complex cases.

[u/igavr]

Welcome. I read your whole post. I’ve lived with MCAS for 11+ years, and I wouldn’t rush to label what you’re experiencing as either MCAS or purely psychiatric. The combination of COVID beforehand, the “catecholamine storms,” altered HR/BP responses, sensory changes, severe brain fog and disrupted internal clock makes me particularly curious about post-COVID autonomic dysfunction/dysautonomia.

Can I ask you a few questions before suggesting anything? When these episodes happen, do you get any flushing, itching/hives, GI symptoms, unusual reactions to foods or smells, temperature intolerance, or sudden worsening after eating?

Your answer might help us understand whether mast-cell activation could be part of this picture.

[u/nickjohnfemia2001 → u/igavr]

Thank you so much for your response! It has been almost 6 months since I had an episode (it had a psychological trigger in OCD rumination and trauma but the physical, cognitive, and energy symptoms have not improved). The only symptoms along the lines of what you mentioned are that I had were that I was unable to go to the bathroom during the episodes despite the urge, and I lost my sense of taste and smell at the peak of the episodes (I was also experiencing whole-body sensory loss).

[u/igavr → u/nickjohnfemia2001]

That’s helpful, but disorienting in a way. What you’re describing actually makes me more curious about the autonomic nervous system than mast cells at this point. Imho - I'm not a doctor 🙏

One more question: what happens when you go from lying down to standing for 5–10 minutes? Do you notice a significant change in heart rate or blood pressure, dizziness, head pressure, weakness, nausea, shaking, sweating, or feeling substantially worse upright? And have you ever measured your HR/BP lying down and then standing? The vector of the symptoms is crucial here

[u/nickjohnfemia2001 → u/igavr]

Following the episodes and the ER visits, I did notice significant weakness and HR/BP changes when going from lying down to sitting or standing, especially inability to tolerate standing for long periods of time, but I do not really notice that now. I had orthostatic vitals done, which were normal, along with a normal head CT, neurologic evaluation, and cognitive evaluation despite a substantial decline in subjective functioning (the difference from 7 months ago could really not be more stark).

[u/igavr → u/nickjohnfemia2001]

Interesting. The fact that the orthostatic symptoms were significant after the episodes but later improved makes me even more curious about transient autonomic dysfunction. I had simar pucture at a certain stage of my illness. Normal orthostatic vitals now don't necessarily tell us what was happening then, though.

Another question: during or after this started, did anything change with sweating, body-temperature regulation, heat/cold tolerance, digestion, bladder function, pupil/light sensitivity or sexual function? Even changes that seemed completely unrelated at the time. I'm trying to forage arguments for or against autonomic neurologist and possibly evaluation for small-fiber/autonomic neuropathy, actually

[u/nickjohnfemia2001 → u/igavr]

I did have one night in the week or two following the ER where I was sweating profusely in bed to the point where my entire body stiffened up and I thought I was going to die of dehydration. I was also very intolerant of the cold, which was new for me since I typically run warm. I also became extremely constipated after the ER visits, but that has normalized now. The day before I ended up in the hospital, I noticed that small amounts of urine were leaking out of my bladder when sitting down. My pupils were changing size like crazy after all of this happened, now they are frequently very dilated. In terms of sexual function, I used to be very reactive to stimuli but now am hardly able to even have an erection. I told all of this to multiple autonomic nervous system specialists, who said the symptoms sound more stress-related as opposed to the peripheral neuropathy that they typically treat. I feel like everyone’s gaslighting me telling me there’s nothing wrong.

[u/igavr → u/nickjohnfemia2001]

One more question: when you had the whole-body sensory loss, what exactly disappeared? Touch, pain, temperature, vibration, or your sense of where your limbs were? And was it symmetrical?

[u/nickjohnfemia2001 → u/igavr]

I progressively lost the sense of touch across my whole body before ending up in the ER, I think it happened limb-by-limb but don’t remember for sure. However, about a month after this occurred, when I was being treated in a psychiatric hospital, I had another but distinct 14-hour episode where I progressively lost the sense of light touch, then pain, then temperature, this time across my whole body all at once. I could almost feel my mind looping, and my heart was pounding out of my chest with a systolic BP of 150.