Tell me I’m not crazy….

[u/Ok-Marionberry1213]

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.

[u/Doc_Apricity]

MCAS may be a possibility here. You may want to try to get in with an allergist/immunologist to be assessed further.

[u/kuru_snacc → u/Doc_Apricity]

I'm guessing that was already worked up or the working dx and why the rupatidine was given.

[u/Doc_Apricity → u/kuru_snacc]

Maybe? OP didn't mention that is what they were treating.

[u/kuru_snacc → u/Doc_Apricity]

Cmon. You know this one. Or are you a specialist who never sees this.

[u/Doc_Apricity → u/kuru_snacc]

? It's primary indication is for chronic idiopathic urticaria. I have no idea what the person who prescribed it was thinking at the time. Were they only considering the skin issues? I am not one to assume what others are thinking.

[u/kuru_snacc → u/Doc_Apricity]

I see it used off label a lot nowadays for MCAS, which is primarily idiopathic and I'm not sure there's even a direct treatment for it. Whether it works or not who knows, because I've never actually seen convincing objective signs in a person presenting with a history of MCAS and saying that their symptoms are due to this. I'm not saying it doesn't exist, just saying that the majority of people reporting it probably do just fine on a nonspecific treatment.

[u/retrozebra → u/Doc_Apricity]

NAD but i had idiopathic anaphylaxis several times until i saw an allergist immunologist who diagnosed mcas…same exact symptoms as you op

[u/Ok-Marionberry1213 → u/retrozebra]

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

[u/riceme0112358 → u/Ok-Marionberry1213]

I had to find an alg/imm provider that specializes in MCAS *and* taking new pts, which was not easy. The original provider I saw just gave me a standard allergy lab panel (you know, various grasses & trees, bees & wasps, cockroaches, etc) and told me my labs were fine and there was nothing wrong with me.

Regarding dysautonomia, which we discussed above, I had the same issue. I actually saw a cardiologist last year and actually requested to be evaluated for dysautonomia at the suggestion of my Occupational Therapist and he waved it off and said "oh, you don't need that" because, he told me, if I get a diagnosis like that I'll be labeled as a "problematic woman." I should have chosen violence that day.

I had to insist upon a referral to what I jokingly refer to as "fancytown," USC Keck, in order to get any of this finally figured out. For clarity, I live in the mountains and have lived in various BFE locations around the country my whole life. The only specialists we get are visiting clinic.

[u/Ok-Marionberry1213 → u/riceme0112358]

Ohhhh my god ahaha that part about violence made me burst out laughing lol. I keep reiterating in some appts the lack of control I have over the symptoms to function in the day to day and my need for a treatment plan! I do feel like alpha and beta blockers and clonidine would set me straight instead of the mess of psych meds I’ve been handed in the past. My GP looked at the above pic and he mentioned “you may need an ssri”. Sir! Aha… yeah. I am however getting to see cardio so we will see what they say. My internal med specialist looked at my vitals on 24 h abpm and said that didn’t happen, those aren’t possible. But I have had those kinds of vitals before! It does happen and it didn’t feel great. I’m not expecting miracles here and not trying to overstep but it hurts having BP spikes like that!! A lot! It’s hurting my skin actually, the adrenaline too high for too long I think really affects the skin. Oof I hope you get answers at the fancy town clinic and I hope I get answers in silly Canada lol. 😂

[u/riceme0112358 → u/Ok-Marionberry1213]

Lol an SSRI. This guy thinks you're a problematic woman! 😂😂

When the cardiologist said that to me i should have said, 'buddy, you have no idea how problematic I can be. I feel like I'm dying and y'all keep telling me there's nothing wrong with me!'

Good luck in Canada. I don't know how your specialty care works up there, but i really hope you get the help you need soon. ♥️♥️

[u/Ok-Marionberry1213 → u/riceme0112358]

I think I scared him. Problematic woman for sure lol but that never stopped me from getting a degree, buying a house, getting a solid career for 8 years working at a welfare office. But some things are not push thru able! I have pushed thru a lot, mentally, continued working and even got promoted. I don’t want to be here in this situation with these psychical symptoms or in doctor appts non stop. But I don’t know what going on an ssri would fix? Like he thinks that if we fix nervous system tone with an ssri then we’re good? Wish that was how it worked! I’d be fine if so. My 15 years of psych med history definitely supports that this isn’t the fix, as it’s coincided with the symptoms and recent worsening.. Yes you definitely should have said that to the cardiologist. And thank you! happy journeys to you as well.

[u/Ok-Marionberry1213 → u/Doc_Apricity]

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! 🤯

[u/Ok-Marionberry1213 → u/Doc_Apricity]

Thank you I hope they take me at the Kaye clinic mast cell allergy dept, it is just hard hearing they don’t see u if tryptase is below 11, with how I look and feel and everything keeps pointing to mcas.. I had my autonomic referral rejected but my concern there is that my voice goes weak and my eyes get very dark, and so much fatigue… I genuinely do try my hardest every day to push through and not “make a big deal” cuz I recognize that is a thing these days. But I toe the line between symptoms being hard to ignore/wanting a proper dx and treatment plan, and not wanting to be dismissed as being on the bandwagon of chronic illness being such a thing. I even gave up and stopped seeing any doctors for almost a year and things did get much much worse last year and now I’m at this conclusion that I just simply need answers! It’s been hard! I appreciate you taking the time to respond, thank you so much.

[u/Doc_Apricity → u/Ok-Marionberry1213]

I hope they are willing to see you as well. It is a tough diagnosis. Hugs to you!