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23yo with PNES (and other symptoms)
23 yo. Has an auditory processing disorder and reports hearing only 50-70% of what a person says. Diagnosed in 2017. Not officially diagnosed, but suspected to be on the spectrum despite not “ticking all the boxes”. Did not look into it any further because he was so high functioning and quite brilliant. Diagnosed with ADHD. Not currently on medication for it because he was unable to swallow pills – has recently learned how to take medication orally and is not considering medication for the ADHD.
PNES
The client reports “seizure-like” episodes where he is non-verbal and has whole-body spasms that last for about 30-60 minutes. These started about 4 years ago. The first episode occurred during a very stressful period in the client’s life when he was in advertising school. These episodes currently occur about once or twice a month. They happen especially when the client has been overstimulated (being with people, going out, being at a busy restaurant, having lots of responsibilities, active stressors) and tend not to happen when the client is not busy or doesn’t have as many stressors. Doing nothing for several days and sleeping help. He has seen several doctors, but no solid diagnosis was provided. One of the doctors he saw did suggest that anxiety was a significant factor. Therapist felt that CBT wasn’t an option for the client because he was on the spectrum, and concluded that the seizures were due to overstimulation and noted that the client shouldn’t have to limit their life, but also had to understand that they couldn’t handle too much. The family refer to them as “episodes”. EEG ruled out epileptic seizures. The client was prescribed lorazepam to take when the episodes start and this reduces the length of the episodes to 15 to 40 minutes. The client is also taking escitalopram oxalate, which reduces the frequency of the episodes to the current one/two per month.
The client reports the ability to recognize when they are getting to the point of having an episode and can prevent it by being mindful about the amount of stimulation he is getting. When one does happen, sometimes the paramedics need to be called. And after an episode, the client is unable to do anything for 3-4 days because they are sore and exhausted.
The client has to be careful about the level of stimulation they have day to day. It impacts their ability sometimes to do certain activities. Due to this issue, the client has left college twice because they were unable to receive proper accommodation to allow them to continue. He is currently in an online certificate program that is self-paced. This has allowed the client to take breaks when needed and work harder when they are feeling well. The client believes that stress is a contributing factor to an episode occurring.
According to the client’s mother, when the client talks about overdoing it, it means that there was one visitor at home, he had one young student and installed a pet door for the cat. He really has it in his head that he can’t do too much or a PNES will occur – one of his therapists has told him as much. He also feels tremendous guilt when he can’t attend family events because he has done too much. The client worries about not seeing family because they are old. When he starts worrying about family members dying, he then goes to worrying about his parents dying (they are in their late 50s). His father’s father was also very critical and demeaning of everyone (including his grandchildren) who did not show up for family events and the client’s father is still fearful of disappointing his own father and this has had an impact on the client, who is also very concerned about disappointing people.
Carpal Tunnel Syndrome
Injured his right hand in a skateboarding accident. And later developed bilateral carpal tunnel syndrome. Has had it for 8.5 years. Believes there is a connection to the skateboarding accident and from playing a lot of video games with friends when he started high school – by winter, had significant pain in hands, wrists and forearms. Currently has this pain 1-2 times per month. It gets worse if he does a lot of typing or intensive computer activities for several days in a row or after a lot of physical activity involving his hands (e.g., building furniture). Resting helps and stretching with resting speeds up recovery. The pain can be so bad at times that he is unable to pick up a glass of water or write. He is careful to schedule tasks around his hands – so that he’s never doing intense hand work. It started at a really stressful time. Was doing school and also trying to do piano training (at professional level). Felt a lot of pressure. At this time, he also couldn’t go to gym class at school because he was terrified of someone getting hit and hurt by balls – teachers described it as a “freakout” or “meltdown”. He feels a tremendous sense of responsibility for others and keeping them safe.
One cousin had surgery due to carpal tunnel.
Headaches/Neck/Sinus Pain
During the summer about 6 years ago, client noticed he was getting prolonged headaches lasting several days unless he took Tylenol. He continues to have these headaches a couple times a month and find they occur more often during summer and not as much of a problem in the winter. Lying down and resting his head reduces the pain slightly and taking Tylenol Sinus tablet “is very effective”. Client believes air pressure changes are a trigger for these because they happen when the weather changes from clear to rainy or vice-versa. He has not consulted a doctor on this. The headaches can interfere with getting together with friends and going to school and it also affects his ability to concentrate. He reports that both his mother and his sister get headaches fairly frequently too, but they don’t follow the patterns that his headaches do.
Other information
The client’s father has general anxiety and depression (on medication for it), and the client describes him as loving, silly and responsible. His mother has migraines, chronic back pain and general anxiety, and is described as loving, caring and a teacher. His sister has migraines, PTSD (due to horrific bullying “go kill yourself”), social anxiety and depression, and the client describes her as loving, relatable and a companion. The mother has recovered using mind body work and feels both her children have mind body syndrome too.
The client has other symptoms including asthma for which he was hospitalized several times between 2008 and 2013. Has inhalers. Says it comes up when he is sick and also if it’s either really cold or really hot. The client reports previously suffering with heartburn, depression and obsessive-compulsive thought patterns and these symptoms are no longer present. The client reports the following that are still present: stomach pains (starting in 2007), tension headaches (starting in 2006), migraine headache (2008), eczema (2013), anxiety (2020) (you can see throughout this history that there is a significant amount anxiety present), shoulder pain (2018), carpal tunnel syndrome (2014) and dizziness (2017). Saw specialists for the stomach pain and there was no ulcer and nothing else found. The doctor suggested it was anxiety induced. At the time, the client was experiencing bullying at school. The client also has gotten and still gets canker sores, especially when stressed.
The client suffered a number of symptoms in fall 2021 when he was doing an extremely demanding course (3 year program in 1 year) (10-16 hrs of class/work, 6 days a week) and renting a room from a family friend who was very demanding about others living in his house (don’t this or that with just about everything, don’t touch the thermostat, don’t make too much noise – to the point where he was afraid to do anything) – and because it was a family friend, he felt that he could not say anything, although he eventually told his mother. He returned home.
The client describes himself as being a perfectionist, having high expectations of himself, wanting to be good/liked, feeling dependent on others, being conscientious, being hard on himself, often feeling responsible for others, often worrying, having difficulty making decisions, being a rule-follower, having difficulty letting go, putting others’ needs first and being hypervigilant.
He believes that some of his symptoms could be caused by emotions, but not sure all of them are.
Outside of living with a parent with depression/anxiety, he does not have any other ACEs.
16yo with PNES (and other symptoms)
PNES
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.
EDS
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.
Other
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.”
It’s hard, because it’s such a delicate balance. I often compare it to the red flush and heat of embarrassment – an individual has no control over that – the brain just makes it happen. Or butterflies in the stomach when you’re nervous. Chronic pain/symptoms are the same. It all happens behind the scenes in the brain. I also like that these examples relate a physical symptom to an emotion/feeling.
Thanks for including this here, Alicia.
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