Serotonin Syndrome is scary AF
This isn’t my doctor’s first screw up. If you’ve read my blog at all up to this point, you'll know that.
I’ve dealt with A LOT of abuse from doctors throughout this whole mess, over the course of the past 9 or 10 months. I've lost count, TBH.
I’ve been accused of drug seeking, trying to cheat disability (which I never even applied for — the claim I filed was a private insurance claim, not government disability,) exaggerating my symptoms, making symptoms up, the list goes on.
My disability claim was ultimately denied because this same doctor, Dr. Douchenozzle, who, even tho he helped fill out the paperwork for my disability insurance claim after I lost my job, then got it into his head that I was trying to scan the government... he lied on forms, tried to change dates for restrictions being lifted, caused a huge kerfuffle, refused to ever call the insurance company back, etc.
I confronted him, he realized he majorly fucked up, and I figured I’d try and deal with him until this was all over so as not to further complicate my case. But since then his nurses seem to have put me on some kind of black list, and they refused to call me back (again) when I was going through what landed me in the hospital last week.
There’s a lot more than just this fuck up happening here.
On February 5 I called the pharmacist at my local Kroger because I had been experiencing increasingly alarming symptoms over the past several weeks leading up to that point.
It started about the time Dr. Douchenozzle talked me into doubling my cymbalta prescription for the second time.
For the sake of review:
I was taking Prozac, 20mg a day, when all of this started. That kept my depression fairly under control along with diet and years of therapy, for most of my adult life.
I was placed on cymbalta because I was told it would help with both the chronic, unexplained pain I was experiencing back in May/June of 2017. It was subsequently doubled twice, in spite of my arguing with my doctor about it on two or three different occasions. I was assured it was safe and the best thing I could do for myself.
I was taking 3600mg of Gabapentin per day, because the pain was still so out of control in spite of all interventions tried up to February of this year.
I thought I was doing the right thing, I talked to my doctor extensively about the meds he put me on, asked a lot of questions, protested and been pushed into doubling meds...I didn’t know serotonin syndrome could happen, I’d vaguely heard about it once in my life.
I’ve never done hard drugs, never took narcotics for more than a few days at a time after dental procedures, would dispose of the extra, etc because of how afraid I was to become an addict. I’ve buried too many.
So I take the meds, but my side effects keep increasing. I started feeling more and more confused. sometimes I would feel so intoxicated that I would start to have a panic attack and would have to say to Nathan, "The meds feel too strong. Can you please just check on me every few minutes?" I was afraid to sleep at night without him checking on me.
I started to experience blurred vision. Like, I'm driving down the road to pick up carry out for dinner and suddenly I can't see cars that are more than two to three car lengths ahead of me.
My ears started ringing.
The heart palpitations were horrendous.
Every time I would sit up from laying down, or stand up from sitting, I would get so dizzy that I would see stars and fall over. At times, I'd have to hold myself up on the wall to keep from falling. Just trying to get to the bathroom and suddenly, WHAMMO.
On the morning of February 5th, all of these things happened at once, when I got up from the couch to let the dog out. Blurred vision, seeing stars and falling over, ears ringing, suddenly it sounds like I'm under water. So, I call the pharmacist.
In less than two minutes she tells me that considering the mixture of medications that I am on and the symptoms that I'm describing, she believes I have serotonin syndrome. She asks if I have any muscle rigidity.
I tell her that my muscles have been frozen in spasms for weeks, so much so that there are visible lumps on my legs, in the muscles, like knots, but HUGE.
She tells me I need to call my doctor right away.
And I call.
And after five hours I finally call and say, "Look I need SOMEONE to talk to me because I might need to go to the hospital, and the nurses won't call me back."
Those fucking nurses. Ever since that whole incident where my doctor decided I must be scamming the system, I can't get them to return my calls.
So the guy who answers the phone puts me through to a triage nurse. When I explain to her what's been happening and that no one would call me back, and I'm told I can't be seen until the next day, she gets real quiet. Like, conspiratorially quiet, and says, "You can't wait until tomorrow. You need to be seen now."
I clarified, "So you're telling me I need to go to the hospital?" She stays quiet and just says, "You can't wait until tomorrow."
So, I go to the ER. It's 2:15PM or so when I get there. Have you seen the thing about how the flu is a freaking epidemic this year? Yeah. That. So, it was like 7PM before I finally got a room. They did an EKG in triage, and it looked ok, so I just sat and waited.
Meanwhile, in Michigan, my mom talks to a PA and a neurologist that she works with at the hospital in Ypsilanti. She tells them my symptoms and my meds, nothing else, and they BOTH say, "She has Serotonin Syndrome." So there's that. Everyone except for my doctor seems to get this.
So the ER doctors are kind of stumped and they do all my labs, they're good. They do a chest x-ray, it's good. The EKG checks out and I'm diagnosed with "heart palpitations" as far as that is concerned. But what is happening to me?
I had zero reflexes in my left legs and my pupils weren't responding to light, I was falling over, the pain was intense because at this point I was like 12+ hours without any meds, and my blood pressure was up to like 191/87 at one point. Basically wacky shit is happening but there's no way to draw blood and see if there's just too much serotonin in my system.
I was ultimately diagnosed by the ER physicians as having serotonin Syndrome. Then I was sent to the Clinical Observation Unit for further care and observation.
It was a miserable night. Holy shit.
The pain, the sweats and prickly skin... but as the night wore on, the symptoms wore off, because the good thing about serotonin syndrome is that the symptoms begin to resolve after you've stopped taking the medications causing the issues for 24 hours. By 6AM it had been 24 hours.
Then the COU physician comes in for his shift some time after 7AM. He walks in with print-outs of my chart in his hand, barely introduces himself, and starts to question me HARD about, "Are you sure that you didn't do some type of recreational drug that wouldn't show up on your urine screen? Are you sure you didn't do some kind of stimulant? Did you maybe use some synthetic marijuana?"
In my head I'm like, "Ask me one more time if I am doing drugs motherfucker, and I will jump out of this bed and rock your jaw." On the outside, I'm complicit. But I keep questioning him, on everything, on my symptoms, on the medical journals I've read about serotonin syndrome, etc.
Then I’m told my doctor never should have mixed those medications. Then I’m questioned and it’s suggested maybe I just DECIDED to take the meds together and it wasn’t my doctor after all.
Shortly after, by like 10AM, I’m sent home, by myself with no help and no guidance, to go through the most hellish thing I’ve ever been through in my life. Withdrawal.
I spent a full two weeks like a dope-sick junkie. Couldn't let anything touch my skin, felt the creepy-crawlings, horrible heart palpitations that made me lose my breath for mili-seconds occassionally, couldn't eat or keep any food in my system if I tried, peeing constantly and feeling like I am literally and actually dying.
I was SO SUPER PISSED. I was also scared out of my mind.
Obviously from here out if I ever take a prescription drug again that isn’t birth control, I’ll clearly be reading everything I can.
Not for nothing, but I don’t think we should all have to earn honorary medical PhD in order to be treated, especially in crisis. You feel me?
The kicker is, my pain in my low back and leg is much better now!...because the serotonin isn’t causing my muscles to clamp down uncontrollably and nothing is squeezing my sciatic nerve. I’m so thankful for that, but it also is like, “how long have I been suffering unnecessarily because this doctor decided something about me and refused to hear me...”
And yes, with all of these months of lost wages and no disability pay and the insane amount of medical bills and on and on and on, I WILL be pursuing a medical malpractice case, bc it isn’t just about how he made a mistake, doctors make those.
It’s about how he and his staff neglected me as a patient, judged me, and applied those judgments to the care I got.
Which nearly killed me.
And it happens to other people.
It shouldn’t, but it will keep happening if not enough people stand up to it.
I’m not wired to not advocate for myself and others, and I refuse to just say, “oh, yeah, I’m going to give them the benefit of the doubt and walk away.”
I did that too many times already.
So stay tuned, readers, because heeerrrreeee we go! I'm not scared anymore, I'm on FIRE.
I'm getting my life back, and my fucking whatever-it-is-that-makes-me-me-and-super-fiery back, and I am so on this shit like white on rice. For myself and every other damn person who goes through this.
Thanks for indulging me.
p.s. for all my Murderinos, SSDGM, especially by your doctor <3