Hi everyone, I'm writing for my wife, who has been dealing with *something* for the last year that seems to be POTS/CFS. I say "something" because her symptoms overlap with those conditions, but many of her experiences seem out of the normal spectrum and we don't know what to do. Here's a quick rundown: My wife: -22 years old (21 at time of symptom onset) -5'8", 140lbs., good diet -No prior notable medical history (not a very athletic/coordinated child, but active and healthy) -Very healthy prior to onset (in a year and a half, I never saw her get sick until symptom onset) -Prior history of some substance abuse (alcohol, tobacco, marijuana, occasional painkillers) in teen years -Survivor of abusive parenting (more emotional/psychological than physical, resulting in mild PTSD) -Prior use of anxiety and depression meds when life situation was difficult -Stopped all meds and substances 6-8 months prior to symptom onset due to being happy with life -Graduate student with moderately high-stress working life Lead up to symptom onset: -Happened approx. one year after moving to Oklahoma from Texas (grew up in Virginia) -No prior illness, injury, or other trauma (that we noticed, anyway) -About 9 mos. prior, had sudden and severe hives (about 3-4 bouts over a couple months, none since) -Had a bout of sudden and severe lightheadedness at work about 6-8 mos. prior (lasted only one evening) -Lost approx. 20lbs. over ~3 mos. earlier in the year, not trying, no diet change -Continued losing weight (approx. 10lbs.) while eating same after onset of symptoms -Began regaining weight approx. 6 mos. after symptom onset -Sudden onset (went to bed well, woke up with chronic nausea and dizziness, we thought she was pregnant) -Nausea primary symptom for first 2 weeks, after which dizziness seemed to become more prominent Vitals: -Chronically low blood pressure (usually runs ~95/55, give or take) -Chronic tachycardia (~75bpm supine, ~88bpm sitting, ~100-135 standing depending on the day) -Note: when we control her HR and BP to keep them in the normal ranges, she often still has symptoms Symptoms: (symptoms fluctuate drastically, with housebound days/weeks and almost normal days/weeks): -The following symptoms are worsened by standing, but may occur in any position, and may occur even when her heart rate is low and her blood pressure is relatively normal (anxiety can exacerbate these): ---Nausea ---Dizziness ---Spaciness/brain fog ---Vertigo (described as feeling like the floor is moving up and down, just started a few months ago) -Motion sickness (used to not get sick in car, now gets sick very easily and sickness persists hours) -Extreme fatigue (especially following activity) -Sensitivity to stimulation (retail stores, hospitals, crowds, noise, motion, stress, etc. make everything worse) -Immune suppression? (symptom onset last Nov, then got sick 4 consecutive times between Christmas and Valentine's day, only sick once since then with cold I had) -Lower-leg mottling (standing for prolonged time causes knee/ankle skin tightness and purple/pink color) -Temperature intolerance (esp. heat makes things much worse) -Headache (rise in headache frequency the last month, minimal headaches prior) -Sound sensitivity (loud noises can trigger nausea) -Seasonal allergies (didn't have any before this year) -Chronic constipation -Chronic, recurrent bacterial vaginosis (3-5 occurrences over ~6 mos.) Common symptoms she does NOT have: -Pain/myalgia -Muscle weakness -Decreased appetite (to the contrary, she eats a LOT) -Vomiting -Actual fainting (only pre-syncope) -Transient hypertension -Tremor -Loss of motor coordination Medical treatment/assessment: -Seen by endocrinology, cardiology, neurology, etc. (most are conservative, unfamiliar, unhelpful) -EKG (normal) -Echocardiogram (normal) -Pelvic-abdominal ultrasound (normal) -Brain MRI (normal) -Standard blood panels (normal) -Morning fasting cortisol (slightly low) -Lupus (negative) -Thyroid (negative) -Lyme (unclear, probably negative) -Iron (normal) -Tilt test (positive) Medication history: -Birth control (symptoms seem to have vague correlation with menstrual cycle) -Florinef (0.01mg, may help slightly, hard to tell) -Delayed-release potassium (for florinef) -Sodium and water loading (~5g & 3 liters daily) (may help slightly, hard to tell) -Thigh-high compression stockings (no help) -Midodrine (made her feel awful, bedridden until it wore off, blood pressure non-responsive) -Phenylephrine (made her feel awful, bedridden until it wore off, blood pressure non-responsive) -Propranolol (nonselective beta, helps somewhat, but inconsistently, and sometimes not at all) -Metoprolol (beta 1 selective, made her feel awful, blood pressure dropped a lot) -D-Ribose (tried for 2-3 weeks, didn't seem to help, may have made her feel worse) Conclusion: Whew! That's about it for now. I'm sure I'll think of more later. The most perplexing parts of this are: -Why do her symptoms NOT seem restricted to when her BP is low and/or HR is high? -Why the weird reactions to medication? (midodrine = bad, propranalol = mildly good, florinef = neutral, etc.) -Why are these new, atypical symptoms appearing (vertical vertigo, motion sickness, sound sensitivity)? -Why is there no apparent onset event? No illness/injury event, no family history, etc. -What does she actually have that combines all of these symptoms? -She was feeling relatively good and building up an exercise regimen the last few months, then suddenly something just knocked her completely out and she can barely stand the last few weeks. Why? -What can we still do/try? I know that's a lot to read, but we're pretty desperate over here. Thanks to any and all who read!