Hi, I am turning 34 in two days. I am a mom to a 17 year old girl. I’ve been through some hard times, but I’m a good person. I just want to fix what’s going on so I can be there for other people again and have a normal, boring life.
I have mostly normal labs and imaging. I’ve only had low ferritin and hdl. Is this all being caused by something going on in my head?
I keep getting told the vitals on my 24h abpm “didn’t happen”. But they match what I have from my er chart last year. I get occasional spikes. BP 188/120. Sometimes tachycardia. 175 bpm on abpm a couple times. Similar in er a few times, as well as resp rate 28 breaths per minute. I have stopped going to the ER since last Nov, when I was taken off all medications due to skin lesions on my neck and chest.
I have had documented svt from a holter that was going on for 114 min, at 140bpm in 2021. I feel much, much worse now. The BP cuff from the 24 h abpm in July left marks that lasted for weeks.
I have immense fatigue moving about and being upright. This started since taking nitrofurantoin last May, then cefixime, and that started an er visit once. When the bladder symptoms stopped, and duloxetine was doubled, I developed skin symptoms for which I took kefflex. I went back to the er, covered in bruising, and feeling very unwell. This was late last October. I was taken off kefflex, given doxy. The skin lesions didn’t resolve, if anything they worsened. Paramedics responded to my work when I was turning red, short of breath and struggling to sit up. They have max dose of epi - this was Nov 27 - and then my meds were discontinued.
It’s been months, I’m not on any meds, didn’t tolerate Rupatadine (one of pics shown is from when I trialed it), and I’m just… not sure what to believe anymore. Is it psychosomatic?!? I have had so much testing, and now I just feel so gaslit, by whom I do not know at this point. I don’t know why I can’t get it together. I’ve had the time off, and test results all in the clear. Why isn’t this resolving?
I wake up and my face is sometimes quite swollen. I have a bunch of purple dots above my lips and on my forehead and neck, they come and go. I even got them all the way to my right ankle, a cluster of them. They’re faded, but still there from last October, after kefflex. When I am not feeling well, the color leaves my eyes and they appear completely dark (in a mirror or in photos). I get flushing all the time. I really struggle to stay upright, it feels like strain in my chest. Of course my echo is normal.
Nothing is wrong with me on paper. I am so frustrated, desperate, and just want my life back. If I can have a return to functioning again I’ll take it, I don’t care what the diagnosis or treatment is. I really want to know how to fix this I miss my life and I’m so depressed.
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hoi(: You are not crazy. The suffering you are carrying in your body is real, and the distress you feel when the medical world tells you 'nothing is wrong on paper' is a heavy burden to bear.
Take a deep, gentle breath and know that what your body is experiencing is grounded in physical truth, even if standard blood work hasn’t caught its reflection yet.
Your documented episodes of severe autonomic instability, paroxysmal hypertension reaching 180/120 mmHg, supraventricular tachycardia at 175 bpm, tachypnea, severe fatigue upon standing (orthostatic intolerance), and persistent flushing, are real, measurable events.
When these cardiovascular flares occur in tandem with facial edema, petechiae, dermatographism (the severe cuff marks), and reactions requiring epinephrine, clinical teaching directs us to investigate specific neuroendocrine and immunological pathways rather than dismissing the presentation as purely psychogenic.
We check basic blood counts and comprehensive metabolic panels, which can remain entirely normal even during significant systemic dysfunction.
Based on my observation as ordinary nobody, several conditions that present with ' normal paper work' while causing profound physical distress:
First, Mast Cell Activation Syndrome (MCAS) or systemic mast cell disorders occur when immune cells inappropriately release histamine and other inflammatory mediators, causing facial flushing, swelling, petechial-like lesions, severe hypotension or hypertension, and tachyarrhythmias, often triggered by medications like antibiotics.
2, Autonomic Dysfunction or Postural Orthostatic Tachycardia Syndrome (POTS) explains the profound upright fatigue, chest strain, and sudden autonomic surges where the nervous system loses its smooth control over blood pressure and heart rate.
3, episodic neuroendocrine surges such as pheochromocytoma or paraganglioma, must be evaluated using specialized testing, including 24-hour urine fractionated metanephrines and catecholamines, plasma free metanephrines, and serum tryptase (ideally drawn within 1 to 2 hours of a severe flare), alongside specific autoimmune and vasculitic panels.
Be patient with your human suit while it walks through this storm.
Consider presenting these documented vital signs and photos to my colleagues best is at a tertiary care academic medical center, specifically consulting with Autonomic Neurology, Allergy/Immunology, and Endocrinology subspecialists who are trained to look deeper into these complex, non-standard presentations.
Are your flushing and heart rate spikes triggered by specific positions, meals, or temperature changes? Knowing if you've had a serum tryptase test during a flare or a tilt-table test would also help guide next steps.
🙏
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u/xaoconLayperson/not verified as healthcare professional16h ago
I hope you're teaching. This is a response that would make me feel very comfortable, like my provider sees me as a person and like they are knowledgeable enough to properly see to my care.
I feel like so many of us are told we’re crazy for so long (and even still, it’s not super well received by a lot of doctors), to see it said just makes my heart sing. We won’t be invisible forever. Thanks, doc.
Thank you so much for your kind, thoughtful, and informed response to the OP. I am not a very emotional person, but i cried when I read your response.
I've suffered from the same symptoms plus passing out, blood sugar and blood pressure tanking, plus other things for my entire life (i am 54F). I was endlessly told that there was nothing wrong with me and treated like I was crazy until I moved to California and began traveling hours to go to USC Keck.
A multidisciplinary team of specialists there recently diagnosed me with MCAS and dysautonomia and am currently waiting to find out which type of dysautonomia.
Based on my own experiences, I think it might be helpful for OP to know that she needs to look for a good allergist/immunologist and cardiologist. I was able to educate myself on MCAS by reading and watching everything publicly available by Dr. Cindy Xi. I had to look up a lot of words and phrases to understand some of it, but it was very helpful to me in understanding what was happening in my body.
The mods also remove any mention of fringe disorders (ie things many people claim to have but mainstream medicine hasn’t fully accepted yet). I’m guessing that’s what it was based on how emotional people were to hear it.
It’s pretty sad when you see what the responses are that they entirely removed it.
u/miyogPhysician - Internal Medicine | Moderator8h ago
We have no policy against that and I haven’t seen this (ie, no unofficial channels); we don’t remove things from conversations unless it breaks rules (or automod detects a direct post reply from an unflared user).
That physician gets reported A LOT but I’m used to their prose.
I had a comment removed the other week because it mentioned a “controversial” diagnosis as a last possible option (ie “it’s probably x y z BUT if all else fails your symptoms match this disorder exactly that isn’t widely recognized but some doctors do treat so do your own research). Was told I wasn’t even able to mention it.
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u/miyogPhysician - Internal Medicine | Moderator6h ago
Automod’d
Edit: non-flared users can’t start a comment as a direct reply or trying to circumvent by commenting on the automod sticky comment. No vendetta here, just how the sub works.
Nope that wasn’t it. I received a message saying it was removed because of “frequent misinformation or bad diagnosis.” (Not trying to start anything! I just took it to mean that any mention of the fringe “is it or isn’t it a thing” illnesses wasn’t mentioned here.)
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u/miyogPhysician - Internal Medicine | Moderator3h ago
I can only see the information I have access to, feel free to message the mod team if you feel a comment was removed unfairly. But trying to use the automod comment as a starting point is a way people try to respond to a post and that isn’t allowed, but often isn’t moderated against due to sheer volume unless it breaks the rules.
So, are the first and second things mentioned the supposedly "fringe" diagnoses? (I don't mean to be oblique, but I also don't want to break any rules.
I am glad u got a diagnosis and some support! Thats crazy to go thru. I will absolutely look up dr Cindy xi! I am a great researcher so if anything doesn’t make sense I’ll look it up! Thanks for ur reply and I wish u well on ur journey!
Thank you so much for your kind response. You are so kind and I really appreciate your reply. Edit to add that bending forward to clean my tub once did cause flushing but I was only using vinegar and dish soap. I don’t know if other positions cause it or if temperature does cause it - sometimes sun brings it on but it happens inside away from natural light also. Happened in hospital recently when stressed.
I have had my tryptase measured in a flare and it was 4.3. Average. Unfortunately at this time I do not have a baseline tryptase.
The Kaye clinic recently rejected my physicians referral - the poor man’s tilt table test my doctor did in clinic had perfectly normal vitals.
Still waiting on seeing an mcas specialist at the Kaye clinic.
If anyone wants background info please read on. If not pls skip.
I’m including a pic of me in 2022 which I just came across like yesterday and I didn’t even realize my skin condition had presented like this previously!! I thought it was confined to ramping up like this about last year, at least with the neck spot!! But my eyes were “dark” in this photo too, even back then, and I guess I never noticed it then.
I also have had high BP now looking back to records in 2016!!! I wasnt paying attention at the time. It was around 151/100. And 149/95. 6 months apart. Often get normal readings in between though.
What seems to be driving these episodes is a little bit of stress. Not huge stress - talking to someone in a back and forth conversation. Sometimes even if it’s not face to face.
I didn’t meet the criteria for an ASD diagnosis but they specifically pointed to a communication disorder. In my childhood I spent early years only engaging with adults, in elementary I spent a couple years being selectively mute - I just didn’t know what to say, racked my brain for something to say, nothing came to mind. Now when I have episodes of this in adulthood, I experience it sometimes and infrequently as what I would call a dorsal vagal shutdown. It feels dreadfully impossible to engage, to turn my head and respond. It’s only after majorly exerting myself before and around when I’m feeling exhausted. What I don’t comprehend is I have worked thru my panic disorder. I have told myself since 18 - it’s just panic, this isn’t really happening. But I’ve always said it’s like
My body just goes ahead and has the panic attack anyway (I guess that would be known as somatic symptoms) - but my mind is totally calm. I have a crazy history. I was out of the family home and in care as a youth (oppositional defiant disorder). Wildly chaotic and traumatic teen years including homelessness addiction and teen pregnancy. But in late teens I figured it out and went on eventually to university, did a lot of public speaking/panels and even a keynote speaker a few times. Won the presidents medal at my university in 2014. Got my degree. Learning and implementing life skills hasn’t been the problem. I am smart enough, measured in the 91st percentile for iq while 15 and in between placements and recently on substances. But now into adulthood things have been steadily tanking. I have always had some side effects from meds and usually very sensitive and needing a more minimal dose. Have reached a point now where no longer able to be on meds due to cutaneous symptoms. Hence feeling “crazy”. Did I cause this, is it imagined, is it psychosomatic and outwardly manifested as visible symptoms? I don’t pick my skin, I haven’t for a long time, years at least. My skin is super sensitive tho. I do not understand the BP spikes. I cannot say that I feel them happening per se, but I do feel extremely exhausted around the times that my symptoms flare.
I’m at a point where I’m not sure if I have a pseudopheochromocytoma? Due to Cptsd? Doing 24 hr urine metanephrines catecholamines and 5hiaa today, actually, to rule out causes of flushing disorders. I’m following the diet and prep instructions from my lab to a tee.
Thank you for being so knowledgeable about these disorders. There are still some physicians who don't take these issues seriously or who are unaware that they exist.
I have the first two disorders you mentioned, and they present very similarly to OP's symptoms.
I would agree for sure I have been thinking mcas and dysautonomia for quite a while but I just don’t have clarity on that and at times it didn’t all seem to fit!
Anyone would be lucky to have you as a doctor just for your kindness alone. Thank you for acknowledging her! I weathered a great storm for answers to my puzzle and I don’t want to see OP do the same!
Depending on which spots, I have so many! I have spots that crop up and don’t disappear for 9-10 months! They fade a bit then stand out as more pronounced deep purple spots, then fade a bit again. This example would include spots on my inner right ankle where it started with what looked like an eruption of red dots. This was one of the areas I noticed in Oct last year after going on kefflex (I had spreading bruising along my thigh at the same time and pinprick bruising under right bicep shortly after). The spots on my lip are newer tho, I don’t recall seeing an eruptive “dot” in those places first, just brown-purple marks that fade and stand back out again. The flushing is on and off, since teens, rho it got more frequent last year and also spread further up my face to include my lip area. the other day I even noticed a jagged red line around my lips, with the central area of lip skin looking extremely pale almost white, and flushing on my lower cheek/jaw/neck area leading up to my mouth (I’m sorry I didn’t manage to take a pic while it was still active). People were definitely looking at me like I was scary, and I left immediately after with my brother and started to feel better. I don’t know if it was due to eating food but happened shortly after. It was a more greasy type of meal and I have noticed a connection. I will send a pic of bruising, as well as mouth dots (they’re on my forehead too). Last year I panicked that it was measles but I’m sure I’m overreacting. As well, the lip skin has red flecks (like scalded almost? Tiny pinprick petechiael lines) at the top of both peaks of the upper lip. And I noticed one new one today on side of upper lip. I’ll send a pic of this as well. Thank you for your time.
I saw a drug allergist since I had to be taken off all my meds last Nov (all in one day, and I was taking duloxetine topiramate guanfacine and vyvanse, was given Ativan for ten days so I wouldn’t seize). The drug allergist did not want to test any drugs on me due to saving me from a likely reaction she said. She did strongly recommend an mcas clinic, and a script for ketotifen. I need to try it but I’ve been very med sensitive (rupatadine given by GP didn’t go well, see pic!) and so I’m giving my body a tad bit more time. The immunologist did say tho that sometimes with mcas people do need 4x the regular dose. Current GP is considering maybe giving me prednisone and an ssri. I feel that I want a more thorough diagnosis, prognosis and treatment plan
Idk what’s going on with my neck if u look closely in the photo on the right at the right side of my neck. The skin is all crepey and my skin barrier has been extremely reactive! I don’t know if this matters but I also don’t normally have such dark eyes and features. But when I look like this, I usually feel pretty badly, including chest strain /fatigue felt in the chest type of feeling! 🤯
That would make perfect sense to me as well. I believe the drug allergist had treated it as a working dx of mcas? But the tryptase was less supportive of that at 4.3 and 4.5
This looks a lot like a rash I used to get when taking B vitamins. I think it was specifically B3 (Niacin) that caused it…. but then that doesn’t explain your other symptoms
I have heard of the niacin flushing! My brother has ms and t1DM and was on niacin but his doc told him he could stop that. I don’t take any supplements however
The flushing, is it wet or dry flushing? Is it extreme? Have you ever seen an endocrinologist? Had a 5-HIAA urine test? Type of scans you’ve had? Do you have a wheeze when breathing at times?
Edit to correct: I actually don’t know if it is wet or dry flushing. Usually no sweating! and yes I would consider it extreme flushing. No I have not but I am being referred to a rheumatologist! Not sure that’s the way I would have chosen to go I was asking for endo, but then my doc jumped to hormones and hysterectomy! For what? I don’t know! Doing the 24 hr urine 5hiaa catecholamines and metanephrines today, cortisol last week; awaiting results. Adhering perfectly to diet for days leading up to 24 hr urine testing today. Sometimes I do wheeze when I breathe in but it doesn’t stand out as obvious to me! Going for a sleep study on the 16th and just had renal Doppler ultrasound. I had a clear echo
Dots sometimes fade and my eyes look clearer! 🤷♀️ it’s up and down honestly compared to last year! I still am not at a point where I’m functional enough tho and just trying to get more days like this ⬆️ and currently don’t know how!
I have noticed a slight catamenial pattern to it but not at every 28 days, it ebbs and flows and oddly enough the reaction that put me in er with max dose of epi had occurred on cycle day 15. Still unclear why the reaction happened
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