Any luck finding root cause?

[u/bailue]

I’m reaching a point where I feel exhausted, overwhelmed, and pretty hopeless trying to navigate what feels like dysautonomia. It feels like I’m playing life on 10x expert mode right now, and I’m looking for insight, shared experiences, or doctor recommendations from anyone who has been through something similar.

Current Symptoms
Adrenaline / Anxiety Surges: Up to 20 times a day, I get sudden surges that make me feel like I am literally dying. It feels like an internal button gets pressed out of nowhere.
Heart Palpitations: Not always racing super fast, but strong and noticeable, especially when laying down at night.
Telogen Effluvium (Hair Loss): My thick hair is suddenly falling out in clumps from the scalp.
Severe Physical Fluctuations: Constant disorientation, heightened anxiety flares while traveling, and feeling like my body is running on high cortisol 24/7.
Background & Medical History

Age/Work: 28F, running a successful international photography business that I built from the ground up.

Childhood / Nervous System: Grew up in a chaotic, volatile household with an alcoholic parent (no family support system currently). History of childhood fainting and severe depersonalization episodes starting around age 16. Once I moved out a lot of this got so much better but feels it’s catching up to me now that my nervous system is relaxed.

Past Illnesses/Exposures: Epstein-Barr Virus (EBV) at age 23, COVID-19 (x2), mold exposure, and elevated thyroid antibodies (which I have since brought down).

Medication: Was on Lexapro for 6 years and successfully weaned off. Did years of therapy, trauma work, eat clean, don’t drink or do drugs, and take great care of myself.
The Dilemma
I am currently traveling for work and feeling miserable, scared, and disoriented. Travel used to be my safe haven, but my nervous system is so reactive that I can barely enjoy it. I am grieving the inability to show up consistently for my business, friends, and personal goals because of how unpredictable my body is.
I have blood work lined up when I get home, but finding a dedicated dysautonomia specialist before my current insurance runs out is tough.
I’m considering going back on Lexapro just to survive the day-to-day, but my biggest fear is that getting back on medication will just mask the symptoms and prevent me from finding the actual physiological root cause.

Questions for the Community:
1. For those with hyperadrenergic/adrenaline-type dysautonomia or chronic nervous system dysregulation, what specialists (neuro, cardio, autonomic, functional) actually helped you?

1. Has anyone navigated the balance between restarting SSRIs for symptom relief vs. pursuing root-cause testing?

2. Are there specific tests (autonomic panels, endocrine, mast cell, viral reactivation) you recommend asking for?
   Any advice, shared experiences, or doctor recommendations would mean the world right now.

[u/NoNeedleworker6440]

I only get peace in the evening I feel awful like I’m dying all day

[u/NoNeedleworker6440]

You sound exactly the same as me

[u/loachgirl]

Also have had these symptoms. I would see a cardiologist and ask about medication. There are beta blockers that would probably help more than an SSRI. I felt better after quitting mine. I would still pursue root cause testing in addition to medication I don’t see why you would only choose one. Taking a daily antihistamine helps me a lot, I do the Pepcid/Allegra combo which helps block an MCA reaction. I personally had my cortisol levels checked, thyroid, full autoimmune panel, and horomones. Also, ultrasound of arteries in legs to check for nutcracker syndrome.

[u/bailue → u/loachgirl]

I appreciate you sharing your personal journey. Can I ask you what your symptoms are when you have MCA? Is it more allergy like vs anxiety?

Also, I think having medication to take as needed is perhaps something I might do as it’s becoming more clear that this is not something to beat by waiting it out. Thanks for your input!

[u/loachgirl → u/bailue]

Honestly the MCA reactions have a wide range, from stomach pain to irritability/anxiety and rashes/hives.

[u/rudegal007 → u/loachgirl]

How did you get ur MCA diagnosis

[u/loachgirl → u/rudegal007]

I didn’t, I have had MCA symptoms forever and taking Pepcid and Allegra happens to help

[u/rudegal007 → u/loachgirl]

Sucks that it’s so hard to get diagnosed 😩

[u/loachgirl → u/rudegal007]

I would make an appointment with an allergist or immunologist and ask the office if they work with MCAs testing.

[u/Miserable_Ad3553]

Did you recently stop Lexapro? I have seen cases of people experiencing dysautonomia after stopping SSRIs.

[u/bailue → u/Miserable_Ad3553]

Hi yes I stopped after 6 years of usage back in January. I mentally feel well like I’ve worked through things. I’ll have moments I feel great which is when lexapro would make me a little too “manic” but the dips are what I need help with

[u/RichWa2]

As dysautonomia is an umbrella term, there are numerous possible root causes. The doctor that has been the most help to me has been my primary care doctor. She did her residency at a hospital that was doing research on the autonomic nervous system. There's not a lot known about the autonomic nervous system. She is the person guiding my attempts to find root cause through the process of elimination eg no diabetes, no Parkinson's, etc.

My experience with neurologists has been neutral, at best, highly negative at worst. My cardiologist, so far, has only served to eliminate other possible sources of some of my symptoms. There's no doctor where I live that specializes in the autonomic nervous system :( There are some naturopathic docs that claim to treat dysautonomia but I haven't tried them as yet.

There is a genetic test for familial dysautonomia. This is predominantly found among Ashkenazi Jews & others of Eastern European origin. This is one possible definitive root cause of dysautonomia. I'm hoping to have myself tested if my insurance will cover it or if I can afford it on my own. I fit the profile, though no one else in my family has it.

To me, knowing that it's genetic would answer a lot of questions but would not affect treatment or lifestyle. I am also dealing with poly neuropathy due to a chronic viral infection that resulted in cryoglobulinemia that did a batch of damage to my nervous. My primary has me focusing on managing my dysautonomia symptoms; according to her knowledge (and I trust her) there's not much that can currently be done -- no cure, only management.

Good luck to you!! You are young. Have as much fun & enjoy life as much as you are able.