u/Ok-Marionberry1213

Just had an appointment with my doctor today. When I brought very organized info to the appointment, and brought up my concern from “iatrogenic harm” from the treatments i went through and I want help recovering and getting back to work, he jumped to - “no one can prove that” and “I didn’t prescribe it”. Like no answers to move forward. He just said he is moving soon (he had been saying that for years) and then I got some referrals - an mri of my brain for MS (sibling has MS but I doubt I do, I clearly have Mast cell related troubles), a neck ultrasound and soft tissue x ray (throat tightening) and singulair /rupall. But none of the things I really need help with, like a proper diagnosis being put on my chart and being treated and reviewed by specialists. He wants me to see a dermatologist for a consult, and dermatologist can request to him to do a referral to immunology - like what?! And I live in Canada!

For context in Sept I was encouraged by a counselor with my disability claim to increase my dose of antidepressants and I was already on polypharmacy. So I went from 30-60 mg of cymbalta, while also on topiramate, guanfacine and vyvanse, clonazepam as needed, plus an antibiotic for the new skin lesions I was getting. Then I lost alllll energy, developed bruising, was living in a hypertensive crisis state, being brushed off by the ER with some visits being coded as things like “wound care”. I actually gave up on the ER and just left to be sick at home on the couch. I updated my will in a scrawled note in case guardianship of my daughter had to be considered. I was terrified to take my next dose of meds and didn’t know what the cause was.

Then, I was being returned to work in Nov, specifically Nov 10. The same counselor I was seeing had wanted me on either ketamine treatment (for my depression) or to repeat rTMS which I have had before (it’s a magnet stimulation treatment for anxiety and depression). I had to reduce my vyvanse and stop topiramate for this treatment, and I did, as well as lower the guanfacine cuz at the time I felt that’s what I was reacting to. I began treatment Nov 24.

I had bad lesions on my skin at this point and I was told by a psych nurse at rTMS treatment to see about getting an epi pen. I did. I also got my cymbalta lowered as a psychiatrist at rTMS was concerned I was experiencing an erythema multiforme like drug reaction. So the psychiatrist lowered the cymbalta and added in 5 mg escitalopram to bridge me over. The next morning at work I took my vyvanse then had major allergic reaction unlike any other - air hunger, face extremely red, mouth open, struggling to remain upright and extreme flushing. I had max dose of epi and paramedics rushed me to my hospital, they told me epi pen saved my life. **this happened on day 15 of my menstrual cycle and I suspect progesterone dermatitis or catamenial anaphylaxis**

I since had to stop all meds that day and take benzos one week to not seize out. I have been recovering and tried to return to work already but as hours increased I deteriorated substantially. I was there Feb 23 until April 9.

I had SO much support from the psych team that did my rTMS, nothing but grateful for their help. Now it is finished, and I’m getting absolutely nowhere with my medical team. Switched to my old doc and was so hopeful but still not getting the things I asked for. He was basically like why did u come back I had three years without u. I’m more irate about my GP I had at the time of all the emergency crises, and just want help forward.

So now I am moving on to mention something else: someone on this site mentioned in like, the last week? About this other site - RTHM, which I am not affiliated with but it has been helping. I got some very clear info to bring to my doctor and a big emphasis on the hormonal / cyclical component of my symptoms.

Now today I started asking some more specific questions and basically what I want to get out is this:
I was born with a laryngeal web of tissue blocking my breathing and it wasn’t discovered until a few months later. I would aspirate when feeding and turn blue. Then when they removed the web of tissue I was sent home without being properly weaned off prednisone and had to go right back and have round the clock bedside care because of how bad it got.

In childhood I had issues, like when I was a toddler I had a mosquito bite swell to the point I had to be brought in cuz I couldn’t walk on my leg. I also had anaphylaxis to penicillin. Then I had tubes in my ears and surgically removed, adenoids and tonsils out. I also remember being unable to breathe at school and being sent home “anxiety”, and being in the sick Bay area at school a lot, the stomach aches were CONSTANT. I started cutting at age 11, and had a huge worsening of metal health by 12.

I researched today and found that definitely mcas can lead to major issues in adolescence that look behavioral but are neuropsychiatric. I was always such a sweet, quiet kid, reading, and friends with grandmas instead of kids my age in sunday school. I went thru it bad in puberty, so much so that my mom didn’t want me at home anymore. She had just left my domestically violent alcoholic father - and then suddenly I was placed in his care in the inner city. We had no food I had no bed the house was in bad shape 100 years old. I wasn’t going to school with lunch and he was feeding me greasy deep dish pizza *occasionally*. I learned to make instant mashed potatoes in the microwave. The stove wasn’t even hooked up, he was always in the dirt floor 5 ft ceiling basement working on stuff, and pulled the stove out of the way to get access to it. I would come down to try to spend time with him but the rooms were so creepy! And he was always in the garage also just smoking pot, he took me to a party and just passed the bong around and booze. It just was hard living there and I didn’t always make it to school, plus I took weed to school to “show off” so then the school got involved.

Soon children services and the school promptly placed me back in my mom’s care. I was not wanted there, the police were called, I was put in pchad a lot under confinement orders and was self medicating. I ended up being kicked out and being exploited for places to stay. I had a screening for another confinement order for sexually exploited children, but I lied. I ended up in group care and on meth once in group homes, it was a bad time.

I am looking back now at everything, the fact that I had a baby at 16 and basically had a systemic crash returning me to hospital in the days following. But it was never recognized, I never added it all up. I’ve had anaphylaxis since, to fentanyl in a medical procedure, and major drug reactions that mirror ones had years later. I have suspected ashermans syndrome from damage from three iuds.

And here I am at 33 figuring it out. I got a good government job at a place I wanna be able to return back to, I have fought like hell to keep my kid in my care and to get a degree and buy a house. Now I risk losing my position while on disability too long and losing my house too; I can’t even keep up with it. It’s one thing to have the theories from ai powered sites like rthm, it’s another to actually get shit done and diagnosed and treated. I was the one explaining to my doc I need a treatment plan, and that’s why I need a diagnosis. Was given script for singulair just to find it has a black box warning. Idk even how much of this is just me and how much of this is still med discontinuation syndrome from 3 years of polypharmacy (16 years total of heavy interventions).

I was so sad to realize as well that some of the things going on like 14 years ago were things I still thought were happening last fall — 14 years ago I had a new med, then antibiotics, then antifungals, and steroids, if u saw my pics u would see why I suspected fungal folliculitis and wanted antifungals or at one point thought I needed steroids- meanwhile it was just a major drug reaction!!!

My brother was protected when I was a kid, at 11 he had type 1 diabetes, and now has ms. I am so sad that this was how things turned out. My mom lives provinces away with her partner, my brother is always working/busy and my dad went into extended care at 60 and I was his main contact almost became a trustee when he was in hospital the years prior. I’m just breaking at this point and my fucking kid has been having to take care of me. I’m questioning everything, I’ve done so much treatment for depression and I’m not even sure much of my symptoms are depression, it was just being treated as that, tho I do admit I have trauma and it’s good I have lots of skills now, but u can’t skills ur way out of anaphylaxis or a mast cell flare which is my primary problem I’m not getting help with. Do I even have real ocd or just high levels of inflammatory IL 6 from mast cell dumping?

I know I’ve intellectualized this to shit, but it’s allllll coming together now and I’m just mad about being stuck at this point, I worked my ass off to get here! Multiple jobs when I could, single parenting, the whole 9 yards. Sobriety. Ugh I just want a cigarette and I quit in January after having picked up the habit again last August, it could have definitely contributed to my decompensated state and I just can’t do that again I am sure I would react so badly to it! But like…. I’m just struggling here with all this.

I’m supposed to see the same counselor with my disability insurance from last fall starting next week for doing Emdr, idk how I feel after all this!!! The claim advisor wanted me to do more rTMS, like stat! They don’t seem to be recognizing that this would be a very stimulating treatment on a highly sensitized system, and aren’t really observing anything medically and of course labs are fine, docs are not moving forward with much. I just really want to be better already! But it’s taking its sweet sweet time and my cycle flares are out of this world. Literally choked on water washing my face in the shower yesterday, and throat tightening and bad flushing, and just need to be reclined all the time. I’m on an all soups diet and sleeping on a heating pad, drinking tea and warm water, and just so cold and tired and lacking energy! :( sorry to whine! I don’t really know where to turn to but thought of calling the mental health crisis support line. Just scared of being put on meds again. Scared to even start rupall, let alone singulair! I had a hella bad reaction to hydroxyzine, and don’t currently take anything OTC but Benadryl always kept me awake/excited, and idk I guess maybe I could take Claritin and that might help with the throat tightening/flushing or air hunger? I also have some old blexten I could try again maybe.

Thanks for listening and really open to suggestions and support! I really want to feel better and get back to work asap!

Is it normal (and why??) to have an intolerance to:
-peas
-barley
-lentils
-soy
-potatoes
-mushrooms
-nuts/avocado/seed oils
-yeast, MSG
-fermented foods like kombucha/sauerkraut/yogurt
-sugar/candy and processed stuff or things containing dyes and colorings/fake sweeteners
-various teas/teas that are related to daisy/honeybush
-cows milk/goat milk/dairy
-heavy gluten/carb/refined or highly processed foods/cheap foods and fast foods
-fortified beverages (dairy alternatives with additives like vitamins A+D)
-supplemented products i.e. tea with added vitamins
-honey

As well as:
-vitamins
-OTC drugs
-pharmaceutical drugs
-face sunscreen (the expensive kind-l’ombrelle)
-anything touching the skin ie tight bra, tampon, adhesives, any type of IUD or nuva ring, some jewelry, ID badge lanyard etc..

I have a grass pollen allergy, penicillin and fentanyl anaphylactic history.

I have also had a complete medication/supplement intolerance going on the last several months, with history last Nov of an extreme hypertensive anaphylaxis (spo2 100%, BP 183/131, M.A.P. 148) to an adverse drug reaction.

I experience ongoing daily severe flushing/urticaria and occasional throat tightening occurring with facial/neck abdominal palpitations from time to time and occasional lines in my vision and a whooshing noise in my ears.

I also get severe acneiform eruptions along my neck/jaw/temples and chest that appear quickly and are painful and grow into large nodules, and my skin dumps grease depending what I’ve eaten/if I trialed vitamins/where I’m generally at in my menstrual cycle.

If eating these foods I get ++bowel sounds, GI discomfort, burping, and I had really bad GERD while on meds and severe constipation/bloating.

Also, sometimes if I push my energy levels too hard after exertion I shut down and feel locked in and it makes it hard to respond to my daughter for example or it’s happened when around others and I have to go lay down/recover for a bit.

It’s been relatively under control when avoiding all the above (not the easiest thing!). Also, electrolytes and high sodium intake helps, lots of water and fluids helps, soup diet has helped as well as long as the soups are made avoiding the above foods.

What is the common theme here? What am I missing? On my way to go find a bubble to live in and really want to be functioning to the point where I can get back to my job and to show up for my daughter instead of being on the couch, horizontal. Thank u for reading and take care everyone! 🫶

I’m curious to know what anyone has done to help with their flare ups and if it is worse around your menstrual cycle. I have lived through this for a long time and not done very much about it. I would like to start doing something about it. I have followed what the doctors have said so far. Maybe there is something I’m missing? I have bad flushing/ urticaria. Sometimes I also have eyes darkening. I have had to use epi before.

I am a mom of a 17 year old kid and struggling to keep up with work and the house, I want things to be different. Too much is put on my kid. I want to be the best mom I can be and not quit on her just as she is experiencing the stressors of moving into early adolescence. Please let me know what strategies you have tried and I can follow through on it.

I have done meds (not on any currently), two rounds of rTMS, seeing a naturopath, waiting to see an allergist, and I am also seeing an internal medicine specialist next week.

Thanks :)

AA: a place where everyone says “keep coming back” while chain-smoking outside and trauma-dumping over burnt coffee
Welcome to AA, where:
every church basement smells like nicotine, regret, and someone’s winter boots,
there is always one guy named Rick who has been “31 years sober” but somehow still the angriest man alive,
and everyone claps because Brad admitted he once stole a lawnmower in 1997.

The literature is written like God Himself discovered passive aggression
“Let go and let God.”
“Keep your side of the street clean.”
“One day at a time.”
Thank you, ancient pamphlet written by three Midwestern men in 1939 who definitely had untreated control issues.
AA slogans are basically:
live laugh lobotomy

Every meeting has the same cast
1. The Crosstalk Cowboy
“Not to share on your share, but…”
proceeds to share on your share for nineteen minutes and diagnose your soul.
You: “I had a hard week.”
Him:
“When I was detoxing in a ditch in Lethbridge in ’84…”
Sir this was supposed to be the newcomer meeting.

2. The Hyper-Spiritual Sponsor
This person has:
14 keychains,
9 daily devotionals,
a highlighted Big Book that looks like the Dead Sea Scrolls,
and the conviction that every minor inconvenience is God teaching humility.
Flat tire? God.
Missed bus? God.
You sneezed twice? Character defect.

3. The Court Ordered Guy
Didn’t want to be there.
Will not speak.
Signing his attendance slip like he’s at prison Hogwarts.
Entire personality:
“yeah I’m just here so probation gets off my ass.”

4. The Crying Woman With Infinite Candor
She has been sober 4 months and somehow tells the room:
her childhood trauma,
three divorces,
a bowel obstruction,
and why Kevin ruined Christmas.
Everyone nods solemnly while clutching styrofoam coffee.

5. The Old Timer Philosopher
This person says shit like:
“your best thinking got you here.”
Thank you Gary, that was both cryptic and condescending.
Then he says:
“sit down, shut up, listen.”
Amazing. Recovery or military school? Hard to tell.

The coffee tastes like punishment
No one in AA has ever made drinkable coffee.
It tastes like:
old pennies,
wet cardboard,
and a vague warning from God.
Yet they serve it like Eucharist.

Everyone says “we’re not a cult” the way cults do
AA members explaining AA:
“It’s not religious, it’s spiritual.”
“You can choose your own higher power.”
“Just call your sponsor every day.”
“Read this book.”
“Do these steps.”
“Confess your wrongs.”
“Attend meetings forever.”
“Only socialize with us.”
…ma’am.

There is no gossip like sober gossip
These people know EVERYTHING.
You relapse one weekend and by Monday:
Deb in Red Deer knows,
Mike in Calgary knows,
some woman named Sharon is “praying on it.”
Anonymous where??
This is the CIA with serenity prayers.

Chip ceremonies are just emotionally manipulative poker nights
“Who has 24 hours?”
everyone claps like you returned from war
You get a plastic coin for not drinking since Tuesday and suddenly half the room is sobbing.
Then the guy with 18 years gets a medallion the size of a hubcap and acts humble while absolutely glowing.

The Big Book stories are unhinged
Every story:
“I lost six wives, stole a tugboat, woke up in Tijuana, found God, and now I make amends through carpentry.”
Wonderful. Inspiring. Deeply concerning.

Dating in AA is just emotional Russian roulette
Nothing says healthy healing like:
two people in acute identity reconstruction,
unresolved parental wounds,
nicotine addiction,
and 47 meetings a week
deciding they are twin flames because they both cried during Step Four.

AA romance timeline
Met Monday.
Shared phone numbers Wednesday.
Soul bonded Friday.
Moved in by month two.
Public breakup at speaker meeting by month four.

Everyone talks in slogans until language stops meaning anything
You ask:
“How are you?”
They answer:
“Grateful, blessed, and sober.”
That was not a human sentence.

And yet… weirdly… some of these basement goblins are ride-or-die
Because under all the:
nicotine haze,
stale cookies,
slogan abuse,
God ambiguity,
and unsolicited mentorship,
there are genuinely broken little raccoons trying not to die.
Which is annoyingly wholesome.
AA is basically:
a support group run by cryptic chain-smoking philosophers with boundary issues.

Final summary:
is:
30% church basement humidity
20% trauma monologue
15% coffee poison
15% slogan hostage situation
10% cigarette smoke
10% strangely life-saving human connection