Mystery health issue with wide array of symptoms

[paocpacop]

For the last 4 years I've dealt with a mystery issue that results in several symptoms. I live a low stress lifestyle, during an attack/event, I'm calm and aside from body position and occasionally diet when high fiber, there is no known cause or diagnosis. I've had MRIs, a CT scan of my abdomen, CBC tests and more. While there have been findings of spinal stenosis, a diverticula, there has been nothing remarkable found. There is recent suspicion that it is a possible pheochromocytoma with blood and urine tests pending. My grandfather was diagnosed with a pheochromocytoma. I'm seeking any assistance, any thoughts, any direction to pursue as this has been a four-year long battle with little to no substantial progress. Any help would be greatly appreciated.

Frequently correlated symptoms:
Facial flushing with visibly red cheeks
Transient rapid heart rate and high systolic and diastolic blood pressure - paroxysmal hypotension - up to 205/104 with HR up to 150
Headache & head feels pressurized. Moreso on back of the head for pressure. More pronounced on left side.
Dizziness
Difficulty breathing
Weakness/not feeling well
Vision issue in left eye. It's as if my blind spot grows to the point that I have awareness, but still can't see what's wrong/missing.
Hearing heartbeat in head
Tired after an event, fatigued
Changes in bowl habits/movements after an event
Spine and neck are more prone to cracking during near an event. Stiffness in thoracic spine and neck.


Intermittent symptoms:
Occasional cold sweats
Coughing with feeling something needs to be cleared
After eating too much fibrous food or eating something that causes gas, I noticed that it seems to result in pain on the left side of my abdomen, and that ultimately results in similar symptoms.
Waking suddenly when I'm nearly asleep. A shock.


Historical symptoms: In addition to the above current symptoms, I've also experienced the following
Fainting
Numbness and tingling in face, mostly left side
Significantly reduced sensitivity to hot and cold
Increased pain tolerance
Acid reflux
Muscle spasms
Bloating and excessive gas


What helps:
Cyclobebzaprine (If I take anything over a 5 mg dose, it has the reverse effect)
Alfuzosin - On first day, dramatic improvement in all symptoms. Effect lasted for nearly 70 days before another attack happened.
Amlodipine - Recent Rx to lower BP
Body position/stretching, though not consistent and takes time. Historically, laying on a foam roller vertically between my shoulder blades could help alleviate symptoms over the course of minutes.
Too, body position can also drastically increase symptoms or even seemingly bring them on. Specially, sitting in a hunched or slouched manner can result in onset of symptoms.

Note: Anxiety was ruled out as I can cause a cessation of symptoms by way of body position and I had been prescribed buspar with no effect.

[Red_Star]

Pheochromocytomas are often hereditary so with your high blood pressure and family history this seems the most likely diagnosis.

Alfuzosin is in a class of medications called alpha blockers.
Alpha blockers are medications used in the management and treatment of essential hypertension, benign prostatic hyperplasia (BPH), and pheochromocytoma.

[Ken_PA]

Another approach: as  Red_Star mentioned, some subtypes of chromaffin cell tumors are genetic, so look up those subtypes and see what info might be valuable.

Good luck.

[Ken_PA]

Regarding your many symptoms, you should segregate those which are side effects of Rx. E.g., your alpha blocker can cause cold sweats.

Also, I'd want to always have on hand a sublingual anti-hypertensive such as Rx nitro. The vision problem during attacks can be a bad sign.

[Ken_PA]

You have a "high clinical suspicion" of a pheo, yet with your CT of adrenals being negative, we can switch to suspecting extra-adrenal paraganglioma(s) - which also are chromaffin cell tumors and can cause the same effects. That means the paroxysmal events can be triggered by mechanical pressure on chromaffin tumors in spine and/or stomach. (Or, related, pressure on ganglion nerves can secrete acetylcholine, which in turn causes a nearby chromaffin tumor to release their catecholamines.)

But, if you have blood/urine tests for catecholamines and their metabolites SOON after an attack, and levels are not high, we can switch to suspecting 'autonomic dysreflexia', which includes a problem in your sympathetic nervous system. That can create severe hypertension. The autonomic dysreflexia can possibly be caused or exacerbated by your stenosis - though you didn't give location. And... that can also possibly be related to your long standing skeletal muscle spasms, and maybe also your sensory neuropathies.