Botulism and Medical Gaslighting: My Story

Medical gaslighting in botulism cases is nothing new. Historical outbreaks of foodborne botulism victims documented cases of what doctors would call "pseudo botulism", where patients would report concerning symptoms of botulism, only to be told it's all in their head, because they weren't presenting with objective, measurable symptoms (including flaccid paralysis, aspiration, and respiratory failure).

In the book Recognizing Botulism, author J.A. Talkington discusses a 1920 botulism outbreak at a hospital in Oakland, CA:

"Twelve people ate the spinach dish. Six people developed severe botulism and three died. Additionally, two nurses who ate the spinach also showed acute symptoms of botulism, but they were diagnosed as having "pseudo botulism", implying that their illnesses were psychological. Mild cases of botulism could be hard to diagnose...Even in today's diagnostic environment, undiagnosed botulism patients are often misdiagnosed as hypochondriac, psychologically disturbed, or unspecified." (p. 132)

Because mild botulism is a cluster of a wide variety of subjective symptoms, almost everyone that experiences the disease will be misdiagnosed and told their symptoms are psychological.

This is exactly what happened to me and nearly every botulism sufferer I've spoken with.

During my first trip to ER, about 6 weeks after my injections, I reported odd and debilitating neurological symptoms that had developed in the days and weeks after receiving my Botox injections, including head pressure, dizziness, brain fog, neck muscle weakness, and anxiety attacks. I was evaluated by a Physician's Assistant (PA) who found nothing abnormal on a (very short) cranial nerve exam, and came to the conclusion that surely I was not experiencing any adverse effects from the Botox. He sent me home with a shrug.

During my second trip to the ER, I again reported my continued disturbing neurological symptoms, as well as a new symptom I had begun experiencing, difficulty swallowing. My pharyngeal muscles were "freezing" up every 5-10 swallows, and it was becoming more and more difficult for me to swallow solid foods due to severe globus that would set in.

The PA who saw me that night had me open my mouth so that she could tell me, "See? There's nothing in your throat." She then spent 10 minutes lecturing me about how I really needed to handle my stress better and see a psychiatrist. She told me that if I did not learn to handle my stress, it would "handle me".

By this point, about two months post-injections, I know I looked like a mad woman. I went to the ER at least 3 more times in a state of complete terror, as my muscles were not contracting properly, my mouth was not producing any saliva, I was rapidly losing weight and hair, and I was experiencing daily anxiety/panic attacks that would last for hours. I was also suffering from extreme fatigue and insomnia, and most nights would lay awake for close to 6 hours before eventually passing out. I began to gladly accept the Ativan that ER nurses would give me, as it was the only thing that could knock me out.

On September 17th, 10 weeks after my injections, I went to the ER to beg for a swallow study (MBSS). The only reason I received one that day is because I work for the hospital system and was able to privately text the SLP that worked at the hospital. My MBSS video showed that I was experiencing delayed initiation of swallow (which can happen with severe dry mouth), slowed tongue movement, oral and pharyngeal residue (also likely due to lack of saliva), and impaired esophageal peristalsis (where the muscle contractions of the esophagus are not working properly, leading to food feeling "stuck").

Despite my video showing clear difficulty and strain while swallowing pureed food, the SLP told me I'd "probably always had esophageal stasis" and that my anxiety was likely the cause of all of my problems. She recommended I go on an SSRI and drink high protein smoothies.

After my swallow test, I had objective evidence that I was experiencing difficulty swallowing. I went back to my injecting doctor with a list of all of the symptoms that had unfolded in the days and weeks after my injections. She looked at me expressionless (all that damn Botox!) and said, "Wow, that's so rare." I begged her to report my symptoms to the FDA, so that other consumers could know about these possible adverse effects. She refused. She later told me she believed I needed psychiatric care (and wouldn'tcha know, her husband conveniently happened to be a psychiatrist!).

I really don't blame her or any other medical professionals I interacted with for their ignorance. Today's physicians and nurses are only trained in recognizing severe botulism, which includes descending flaccid paralysis, drooping eyelids, and breathing difficulties (just Google "botulism", and you'll see all the worst case scenarios and that scary photo of the boy who can't open his eyes).

Because botulism is considered very rare (although I would argue that it isn't), it's unlikely that more than 15 minutes are spent covering the disease in medical school.

One of the most important things to understand about mild botulism that results from Botox is that it will not show up on ANY objective tests, including blood tests, EKGs, X-rays, MRIs, etc. Botulinum toxin is taken up into our nervous systems rapidly, typically within days after exposure. The blood tests that are conducted at the CDC will not be accurate after these initial days.

Mild botulism symptoms can occur in foodborne AND iatrogenic botulism. They happen when "small" amounts of toxin spread into the bloodstream, into the brain, and/or into adjacent muscles next to injected ones.

The wide range of mild botulism symptoms are all listed on the Botox package insert as potential "side effects" of the drug. They line up exactly with symptoms that were observed in foodborne botulism victims throughout the 19th and 20th centuries (see Recognizing Botulism).

Medical professionals, especially injectors and those that work in ERs, need urgent crash courses on the nuances of mild botulism. I have reached out to multiple ER/Injecting Physician podcasts and websites offering to help educate them. Haven't had any takers yet, but those of you who know me know that I'm not going to stop trying!

Wish me luck!

PS: Can we as medical professionals agree to stop gaslighting our patients once and for all?

Or, at the very least, not to their faces? Save the gaslighting for the breakroom.

PPS: It's ok to just say, "I don't know what's wrong with you" to a patient, rather than telling them they need psychiatric care because you can't figure out where their symptoms are coming from.