16yo with PNES (and other symptoms)
The “catatonia” [as described by the client] or “episodes” [as described by the mother] started about 3 years ago, which was about 6 months after the client was diagnosed with Ehlers-Danlos and POTS. The tics started small, like little jerks in neck, elbows, shoulders and then became more pronounced.
Client reports that noises at any level “overstimulate [her] brain, causing verbal and motor tics specific to each sound” and if she has too much of this, she will fall catatonic for about 30 seconds. If she can’t take a break from the sounds, she reports that she repeatedly falls catatonic.
Client’s mother reports that her neurologist diagnosed this as psychogenic non-epileptic seizures and sensory integration disorder. EEG ruled out epilepsy. Client takes hydroxyzine HCL 25mg up to 3x/day as needed to reduce episodes and ticks, but this doesn’t help the physical discomfort of the sound.
Mother also reports that the client is aware of everything around her as these happen. The client wears noise cancelling headphones all the time because of the verbal and motor tics and suggests that “it’s like her brain goes ok, if you’re not going to stop, I’ll stop you”. Mother also notes that the client will only go blank if she’s already sitting somewhere safe. Mother reports that the client can strategically make sure she doesn’t have the “episode” [as they call them to avoid confusing folks] until she’s ready to by walking around. And the mother gave the following example: They were walking through a park one day and came upon a band they didn’t know was going to be playing and it was loud. Client knew she was triggered so she didn’t sit on benches or anything, but only sat down once they were back in their car. About a minute later the client proceeded to have her episode.
These symptoms now bother her constantly and limits her ability to move around the house when people are making crinkling, sizzling, popping or scraping noises (e.g. balling or ripping paper, wrapping presents, calling someone’s name). She is unable to be in the kitchen when the family is cooking. She wears ear plugs or noise cancelling headphones most of the time and always when leaving the house. Wearing ear inserts by Calmer helps. She reacts to neighborhood noise like mowing, motorcycles, hammering, engines revving, thunderstorms, and doesn’t like to go to restaurants because of the “clinking of silverware and loud outbursts from happy groups”. She notes that going to movies or concerts is extremely difficult to manage and she has an assigned friend sit next to her to hold her head safely during any episodes. The mother reports that this is very isolating for the client, who can’t do movies, restaurants, school, etc.
An OT once tried a desensitization program with the client that involved listening to specific sounds through headphones; however, after the treatment, the client was so fatigued that she barely got out of bed for a month. They tried getting her an infusion to help with the fatigue, but it didn’t help. But then they hear back from the creator of the program that it should not be used with POTS and were angry and frustrated that this information had not been provided before they did the treatment. The client slowly improved after that month. Other than the medication, that’s the only thing they’ve tried.
The client reports that the severity of this symptom increases with stress.
The client was diagnosed with EDS – she doesn’t produce collagen so her skin tears and scars easily. She said she was born with this symptom; however, her mother reports that she didn’t notice anything out of the ordinary when she was born other than her skin was so soft.
More stress increases instances of acne, which increases the scar tissue present.
The client worries about this “quite a lot” and has done a lot of research on the topic in an attempt to find skin care products that work for EDS skin types and can reduce scarring and redness.
She also has joint dislocation since early 2020.
Brighton test showed all hypermobility markers. Genetic testing revealed a mutation in the gene responsible for “the recipe for making collagen”. Her records show benign hypermobility disorder although medical practitioners are operating and treating with the presumption of hEDS.
Lo loestrine prescribed “to keep hormones steady which reduces loose joints” as well as PT and OT. The client also uses adaptive aids like special pens, pump lids, braces, etc.
The client reports that her mother’s cousin from an unrelated step-aunt on grandmother’s side and her mother’s cousin from an unrelated step-aunt on grandfather’s side both appear to have the joint dislocation.
Fatigue and POTS
The client reports significant fatigue, which started at the same time the EDS was diagnosed in early 2020. It started after getting a concussion from hitting her head on the gym floor at school. She fell in gym class her freshman year, November 2019. She just tripped over someone else’s foot. According to the mother, the theory is that the reason she is clumsy and experienced multiple injuries as a kid was because of the instability of her joints.
POTS was also discovered a few months after the EDS.
For the POTS, the client was asked to drink her body weight in ounces of water and electrolytes every day, as well as increase her salt intake. She was still dizzy, fainting, or falling to her knees, and fatigued. Her neurologist prescribed Propranolol, and from there increased it and added Fludrocortisone. They gave her Concerta because her brain fog got so bad she couldn’t complete school assignments (she was a 5.0 student who used to finish everything first). When that wasn’t working, they started going in for infusions of “the migraine cocktail”. Later, they began adding magnesium and a blood draw to check her D and iron each time because those levels decrease significantly the minute she goes off an elevated dose. The mother reports that they think it is absorption issues – she was told collagen is needed to absorb nutrients properly. The frequency of infusions has increased and now she is at every 3 weeks. There have been about 4-5 trips to the ER in 2021-22 for more fluids at times when she was so fatigued and nauseous, she couldn’t raise her arms or stand. Her mother notes that this may not be the best solution because of the fragile condition of her veins, but it’s the best option they have at the moment.
There has not been a diagnosis of the fatigue. They recently got the results of a sleep study, which was normal for everything. The mother reports that they are now searching for answers in other places and doesn’t believe they have all the pieces related to the fatigue, because it is constant. The mother reports that a “better” day is if her daughter showers and then sleeps for two hours – this happens every 4-5 days. After she has her infusions, the client needs two days of unlimited sleep to recover from just that and that the last she went, she slept from after the infusion at 6pm through to 3pm the following day. She feels better for a while then but is still always tired.
The client notes that fatigue prevents her from remembering to use her coping skills and adaptive aids.
The client also suffers from migraine headaches, anxiety, obsessive-compulsive thought patterns, insomnia, neck pain, shoulder pain, and tinnitus.
Within the client’s family, her mother has type 2 diabetes, Sjogrens, fibromyalgia, depression and anxiety, and her sister has anxiety, panic attacks, ADHD, asthma and possible dysautonomia.
The client describes herself as being a perfectionist, having high expectations of herself, wanting to be good/liked, often worrying, having difficulty making decisions, being a rule-follower, being cautious and being hypervigilant.
The client does believe that some of her symptoms could be caused by emotions, but does not believe that all of them are.
Outside of the family history of a variety of mind-body syndromes, the client’s childhood has not, so far, revealed any issues.
Most of the symptoms (e.g. PNES, sensitivity to sound, POTS, hEDS) started early to mid 2020 and both the client and her mother do not report anything exceptional happening at that time (outside of COVID). Mother states, “I’ve been told though that age 14-15 is just when EDS and POTS usually manifest. POTS is comorbid with a concussion, hEDS, and a virus and she had all three within about 6 months of the diagnosis. The virus was in January of 2020 (not COVID). As to the sudden onset of hEDS, there’s an antibiotic that is contraindicated for viruses in hEDS patients. It increases negative symptoms. Of course, her doctor wouldn’t have known then that she had hEDS, but that could be an answer — I never looked into it because, in the end, it changes nothing.”