My severe serotonin syndrome story

I wanted to write this because I have had 2 episodes recently with some crazy weird symptoms and wanted other people who might be having these symptoms to be aware or caregivers to recognize symptoms since this is apparently rare. This is long btw.

I just got out of the ICU a few days ago from this. It was probably caused by psych meds and Benadryl. This has happened two times now. Drs don't know much about this at least in my area. I was tested for everything under the sun and everything was either normal or was way off. The process of serotonin toxicity for me seems to take a couple days to get really bad. The first time last month started with what we thought was a possibly bad allergic reaction to cutting weeds. Had rash on face after 30 min with runny nose, coughing, lots of energy, diarrhea, insomnia, and just a weird feeling. I was at my daughter's peds neuro appt so he saw me as well and gave me meds right away. Continued that night with a prickly feeling on skin, constant clenching of a body part, sweating profusely, out of it feeling. Next came the hottest I have EVER felt in my life. I wondered if I had just got menopause. I became so hot unloading my dishwasher I had to stop, turn the AC to 67, take my clothes off, lay on the couch with 2 fans facing me, 5 lg ice packs covering my body with 2 frozen water bottles under my armpits, while eating ice cream. I was in heaven after about 30 min. My 15 year old thought I'd lost it.

Next morning my body hurt A LOT. I was so emotional it took me 2 hours to get clothes on to get to my garden while freaking out and running into everything.I called my shorts "prissy little bitches" because they weren't sitting where I needed them to and had a wrestling match with my sports bra. I also was trying to figure out how to tie all those large ice packs to my body. Outside I started spraying myself and having my youngest spray me with the hose. My daughters became so worried they offered to do ALL the housework and make dinner if I would just chill on the couch. I'm literally acting like I'm drunk, not thinking correctly, dizzy, falling and running into everything, I was gasping for breath walking any distance, can't sit still, dropping all the liquids I touch (I had made 6 different drinks for myself so I had options). Dropped my phone, drinks, vape, and fell myself in the cold bath. Also flooded the bathroom. I kept apologizing and crying for all the messes I was causing. My face and body were rashy red. Despite how much pain my body was in, I noticed that I couldn't stop pacing back and forth. I became very emotional nearly having a panic attack, hyperventilating over random comments, It's about 12 am now and my husband is basically telling me I look like I'm on crack and need to go to bed. He went to bed and I started hallucinating. I thought that he had sent me to a cult camp to be brainwashed and live on a farm. I saw my coworker and his girlfriend were sitting on the couch making sure I didn't escape for hours. I hid my vape and anything else I didn't want them to confiscate and went to sleep. Somehow I knocked over my lg warm sonic when I randomly thrashed my arms at 2 am. I still thought that it was the toxins from those chopped weeds and it was just clearing from my body and I would be fine in 1 more day. Next morning I woke up on my recliner. Feeling weird, light sensitivity, headaches,bad body aches, instability, confusion, band a large weird puss filled sore on my finger. I also was hearing and seeing random things and was convinced everyone was talking bad about me. I'm finally willing to see a Dr for that gross puss thing. Lol not for any of the craziness from my suspected severe allergic reaction. My husband insisted on driving me. Urgent care was a disaster. They were unable to get my O2 sats. My husband kept focusing on my bruises and how I couldn't stop moving. That made me mad. I didn't realize how crazy I was looking and moving and was pissed when told to go to the ER. If I were alone I would have gone home. After sitting for 4 hrs in the waiting room I finally got back. The doctor immediately comes in and takes one look at me and says "definitely not an allergic reaction". Dr was a pompous ass. Labs holding me down getting mad because I was moving. They gave me Ativan. Next thing I know Dr comes in and tells my husband "well, at least it's not meth, it's a mystery and she will be admitted. Husband leaves and I make new friends with the IV pole, the poster on the wall, and the 2 big lights on the ceiling. I thought I heard them whispering so to make them more comfortable I started talking to them about what we were watching. My sunglasses fell out of my purse and onto the floor. I jumped down and that's when the IV pole lady said "oh! those are mine!'. I say that I thought they were mine but if she wanted them she could totally have them! She didn't say or do anything so I just put them on her and said she could keep them. As I was being rolled to ICU I waved and said goodbye to the lights on the ceiling. They were old men btw 😭 Upstairs I have a lot of head to toe pain the next morning. I was there for 3-4 days with no real explanation. Admitting dx: O2 sats at 60!, sepsis score of 5.65, and acute kidney failure. Also a nasty finger infection.

5 days ago- Basically same symptoms but quicker onset. Kids getting scared from me being SO HOT, constantly moving, being a weirdo, not sleeping. They're all insisting I go to the ER. Im not down with that and want to wait until morning. I didn't remember or know that I just literally walked into my daughter's room naked and her friend saw me. Constant persistence and MIL coming over at midnight made me really upset. I thought they were all overreacting and the crazy ones! I ended up going downstairs to lay in bed. Quite quickly I started to get incredibly thirsty and hot and I guess I was talking to myself so my husband came downstairs and asked if I was being possessed. Then I started screaming and rolling back and forth in the bed. Flailing arms going EVERYWHERE and hitting him every 2 seconds. I yell in panic to call 911. He does immediately while I'm screaming ouchy butt over and over. Shortly I have EMTs with me watching but not knowing what to do. I popped into consciousness for a moment and begged for anything. I was in agony. They told my husband eventually I would get tired and stop. An hour later I'm still screaming and flailing. My daughter said there were 10 people just standing there trying to figure out what to do for a long time and joking around. She said that the female EMT commented on how weird it was that I was so out of it but could answer a random question at times.They finally decided to wrap me in a black bag and carry me upstairs. She said that one of the EMTs looked at the others and asked if anyone had seen anything like this before. One guy said he's only read about it in a book. My daughter has a video of me floppy fishing in the bag being loaded into the ambulance and one of the EMTs saying "we caught a big one today"! 😂 I gotta send a thank you note and drinks for those poor people!

In the ER I am sent to ICU with a temp of 104'f, rapid hr, and blood oxygen at 60 again. They did every test imaginable, including West Nile and AIDS. I also received so much ketamine to stay still for the imaging tests, spinal tap, and arterial blood draws the staff couldn't stop talking about it lol. Also, my husband had been holding my hand through this whole thing and talking for me because I am so out of it I need a guardian/advocate. The only moment I regained consciousness in ER was while I was getting a scanning test and I remember asking the lady if they got it done and she said "no, failed miserably", then I was out again.! I can't imagine all the crazy things I did and said! I keep hearing embarrassing, crazy stories of things I had been doing/saying at home. Out of all those days, I probably remember 10% of what happened. So upon waking up this time I have oxygen on, was strapped to the bed, EXTREMELY matted hair like big balls at the bottom of my skull all around my head, a lot of pain from all the injuries I received (multiple large bruises all over with large pieces of skin shaved off and a half bitten off tongue. No idea how I got any of those injuries. My husband brushed my hair back to normal 💕 Discharge diagnosis: reaction to Benadryl.

All I can do now is laugh and be thankful to still be alive. I am like a cat though lol! Oh, and NEVER take Benadryl or another anticholinergic drug again!

Honestly though, it was a very scary, painful, embarrassing, and humbling experience that I wouldn't wish on my worst enemy and hope to never experience again. It's also very sad and makes me angry that most medical professionals, some family, and probably anyone who doesn't really know me just assumed I was on drugs and treated me poorly. That's why I waited till I nearly died to go to the ER the 2nd time.

I'm curious to hear other people's opinions and stories/experiences :)