06-13-2021, 11:49 PM
Hello,
I'm so glad to find this forum and really look forward to sharing and learning with you all. I'm calling myself "GardenMom" as I love gardening and spending time with my family. I also love to read, knit and hike.
We're desperate to find help for my 19 year old daughter who had absolutely no major health issues or any sensory issues whatsoever until one day, almost 4 years ago at age 15. On that day she experienced her first migraine with aura accompanied by severe nausea and hypersensitivity to smells. The following week she had more migraines, continued nausea and smell sensitivity. Within days she developed visual and auditory sensitivity and eventually, troubles with balance.
Since that day, all of the above sensory symptoms and nausea have continued and worsened and are always present to some degree even on days when she's migraine free. The sensory effects seem to build up throughout the day to the point where she sometimes shakes and cries. After a time of high sensory stimulation (like a trip to the store with bright lights, noise, movement around her, etc) she feels "fragile" for the next few days.
She is bothered by flourescent lights, looking at geometric patterns and especially vertical lines (like a striped shirt), any "clutter" in her peripheral vision and difficulty reading ( she used to love reading but now has to hold, over the text, a black sheet of paper with one small cut out "window" just big enough to allow her to only see one phrase at a time).
She is super sensitive to any background noise and can't handle sounds coming at her from more than one direction at a time.
With all these challenges, she has chosen to be homeschooled and is just managing to finish and graduate in the next few weeks. She has been a gifted artist for years and does amazing sketches of nature and wildlife. She continues to do this but has to block out the parts of the drawing she is not currently working on. She plans to take a gap year since learning has become so very difficult. Her desire is to get better and study Wildlife Conservation and Ecology. She loves researching these subjects.
Things we've tried: Neuro and GI screening (normal)
Pediatric OT at age 17. But despite being motivated and cooperative, she was so nauseated and overloaded with therapy that they advised taking a break and sent us for a vision evaluation. Peds OT said they can no longer treat her since she's now 19, but were at a loss as to any adult OT to send us to.
Chiropractor for cranial sacral therapy (temporarily helps migraines but no help for sensory symptoms).
Saw two vision specialists-one took her through an intensive "sensory integration program" ( a few weeks of daily treatment with tilt table, light tx and headphones with dischordant music). No improvement.
Family doctor told me she knows these symptoms are real but doesn't know where she should go for help.
Even tried naturopath (no food sensitivities, no lyme disease, treated for mild mold toxicity but no improvement in symptoms).
I know this is long but I so want to know if anyone can direct us to appropriate help. The books I've read that seem to resonate with her symptoms are mostly written by Occupational Therapists. I've called several but none seem familiar with these symptoms in an adult.
My questions for you....
1. How can I best find an adult OT who can help her?
2. Does anyone know if SPD can be initiated by an event like severe migraine?
3. As weary as we are of Dr visits, etc. would it make sense to go to a clinic like Mayo and see if they can figure this out? My only hesitation is that I wonder if tests show nothing, that they might automatically think this is a psychological problem. But it seemed to clearly begin with migraine.
Sincerely,
GardenMom
I'm so glad to find this forum and really look forward to sharing and learning with you all. I'm calling myself "GardenMom" as I love gardening and spending time with my family. I also love to read, knit and hike.
We're desperate to find help for my 19 year old daughter who had absolutely no major health issues or any sensory issues whatsoever until one day, almost 4 years ago at age 15. On that day she experienced her first migraine with aura accompanied by severe nausea and hypersensitivity to smells. The following week she had more migraines, continued nausea and smell sensitivity. Within days she developed visual and auditory sensitivity and eventually, troubles with balance.
Since that day, all of the above sensory symptoms and nausea have continued and worsened and are always present to some degree even on days when she's migraine free. The sensory effects seem to build up throughout the day to the point where she sometimes shakes and cries. After a time of high sensory stimulation (like a trip to the store with bright lights, noise, movement around her, etc) she feels "fragile" for the next few days.
She is bothered by flourescent lights, looking at geometric patterns and especially vertical lines (like a striped shirt), any "clutter" in her peripheral vision and difficulty reading ( she used to love reading but now has to hold, over the text, a black sheet of paper with one small cut out "window" just big enough to allow her to only see one phrase at a time).
She is super sensitive to any background noise and can't handle sounds coming at her from more than one direction at a time.
With all these challenges, she has chosen to be homeschooled and is just managing to finish and graduate in the next few weeks. She has been a gifted artist for years and does amazing sketches of nature and wildlife. She continues to do this but has to block out the parts of the drawing she is not currently working on. She plans to take a gap year since learning has become so very difficult. Her desire is to get better and study Wildlife Conservation and Ecology. She loves researching these subjects.
Things we've tried: Neuro and GI screening (normal)
Pediatric OT at age 17. But despite being motivated and cooperative, she was so nauseated and overloaded with therapy that they advised taking a break and sent us for a vision evaluation. Peds OT said they can no longer treat her since she's now 19, but were at a loss as to any adult OT to send us to.
Chiropractor for cranial sacral therapy (temporarily helps migraines but no help for sensory symptoms).
Saw two vision specialists-one took her through an intensive "sensory integration program" ( a few weeks of daily treatment with tilt table, light tx and headphones with dischordant music). No improvement.
Family doctor told me she knows these symptoms are real but doesn't know where she should go for help.
Even tried naturopath (no food sensitivities, no lyme disease, treated for mild mold toxicity but no improvement in symptoms).
I know this is long but I so want to know if anyone can direct us to appropriate help. The books I've read that seem to resonate with her symptoms are mostly written by Occupational Therapists. I've called several but none seem familiar with these symptoms in an adult.
My questions for you....
1. How can I best find an adult OT who can help her?
2. Does anyone know if SPD can be initiated by an event like severe migraine?
3. As weary as we are of Dr visits, etc. would it make sense to go to a clinic like Mayo and see if they can figure this out? My only hesitation is that I wonder if tests show nothing, that they might automatically think this is a psychological problem. But it seemed to clearly begin with migraine.
Sincerely,
GardenMom