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31, undiagnosed
Author Message
Jules1717 Offline
Newbie

Posts: 1
Joined: Nov 2015
#1
31, undiagnosed

Hi, I'm Julie, I'm 31 and just learned about this diagnosis a week ago...might be the answer to all of my "crazy"...who would I see about getting an official diagnosis? A regular MD or therapist?

I've had most of the symptoms since I was a child (memories of aversion to how clothes/texture felt on my body since I was three, symptoms started giving me panic attacks and I began avoiding trigger situations beginning in the 4th grade).

As an adult, touch/feel is actually not a sensory problem anymore unless I'm really overstimulated. I would say my sight and hearing are the two most affected. For example, when I'm driving, my eyes are frantically trying to track everything: the texture of the pavement, how bright the lines are, anything that's moving--it all feels like a potential threat. My hearing and other senses will fade (everything sounds like it's underwater) as my vision takes over completely. When this happens, I will bite or pinch my arm or hand to distract myself, and it buys me a few minutes. I haven't driven on a highway or interstate in years, not interested in risking killing myself or anyone else (I have a five minute, in-town commute to work and I can always pull over if I need to). This has been the hardest one to try to explain to people and it's so frustrating to be so dependent on other people if I need to get around. Fluorescent lighting hurts my eyes a lot (thank you, office) and walking or being in a crowd makes me extremely dizzy and disoriented. I also get motion sickness very easily.

When I feel overstimulated, I get really jumpy over sounds. Closing a cupboard door, sneezing, throat clearing or coughing...loud or sudden noises cause me to jump involuntarily. I also obsess over repetitive sounds.

Movie theaters are The Worst. All of that visual and audio stimulation...I will legitimately show all the signs of a heart attack: severe chest pain, numbness down my left side, shortness of breath, dizziness. Symptoms disappear the minute I step out of the theater and get in a quiet, calm environment.

I struggle with frequent insomnia. I can't sleep if I hear sounds, and I usually feel too overstimulated to be able to shut my mind off.

One doctor in college diagnosed me with severe reactive hypoglycemia (low blood sugar), but altering my diet has had no impact
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atkinspea Offline
Newbie

Posts: 2
Joined: Mar 2016
#2
RE: 31, undiagnosed

(11-02-2015, 06:20 PM)Jules1717 Wrote: Hi, I'm Julie, I'm 31 and just learned about this diagnosis a week ago...might be the answer to all of my "crazy"...who would I see about getting an official diagnosis? A regular MD or therapist?

I've had most of the symptoms since I was a child (memories of aversion to how clothes/texture felt on my body since I was three, symptoms started giving me panic attacks and I began avoiding trigger situations beginning in the 4th grade).

As an adult, touch/feel is actually not a sensory problem anymore unless I'm really overstimulated. I would say my sight and hearing are the two most affected. For example, when I'm driving, my eyes are frantically trying to track everything: the texture of the pavement, how bright the lines are, anything that's moving--it all feels like a potential threat. My hearing and other senses will fade (everything sounds like it's underwater) as my vision takes over completely. When this happens, I will bite or pinch my arm or hand to distract myself, and it buys me a few minutes. I haven't driven on a highway or interstate in years, not interested in risking killing myself or anyone else (I have a five minute, in-town commute to work and I can always pull over if I need to). This has been the hardest one to try to explain to people and it's so frustrating to be so dependent on other people if I need to get around. Fluorescent lighting hurts my eyes a lot (thank you, office) and walking or being in a crowd makes me extremely dizzy and disoriented. I also get motion sickness very easily.

When I feel overstimulated, I get really jumpy over sounds. Closing a cupboard door, sneezing, throat clearing or coughing...loud or sudden noises cause me to jump involuntarily. I also obsess over repetitive sounds.

Movie theaters are The Worst. All of that visual and audio stimulation...I will legitimately show all the signs of a heart attack: severe chest pain, numbness down my left side, shortness of breath, dizziness. Symptoms disappear the minute I step out of the theater and get in a quiet, calm environment.

I struggle with frequent insomnia. I can't sleep if I hear sounds, and I usually feel too overstimulated to be able to shut my mind off.

One doctor in college diagnosed me with severe reactive hypoglycemia (low blood sugar), but altering my diet has had no impact

Dear Julie,
I just found (and joined) this SPD forum today and have been searching to see if there is any helpful information about insomnia. I am a lifetime sufferer. There is a brushing protocol that has--at times--helped me, and also a weight blanket ("ditto"--doesn't always help). I do resort to Ambien but obviously would prefer not to. Most of what I've stumbled on on this forum has to do with children with SPD and sleep challenges.
P.
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aleahurst Offline
Newbie

Posts: 4
Joined: Apr 2016
#3
RE: 31, undiagnosed

Hi Julie. The suggestion of this diagnosis came from a clinical social worker who also sees children. He wanted me to read a book called The Out of Sync Child to see if any of the children reminded this adult of her own childhood. The book is downloadable from my library and you might benefit from finding it at your library. Skip the first half of the book and go to the appendices where sensory diet recommendations are made.

However, when it comes to an official diagnosis, you need to find an M.D. for that.

I hope we both find healing.

Lea
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hannahhollaway Offline
Newbie

Posts: 2
Joined: Jun 2016
#4
RE: 31, undiagnosed

I thought i was nuts my entire life, everyone calls me a weirdo bc how i act &do things. I suffer from almost all of the symptoms listed on the symptom forum thing. Well I'm just glad I'm not the only one who has these problems!
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Jmelda1 Offline
Regular

Posts: 29
Joined: May 2016
#5
RE: 31, undiagnosed

Hi Julie,

I'm almost 21 and was diagnosed when I was 17. I understand and can relate to a lot of what you said in your post. Vision and hearing are the most affected for me as well, followed my touch. I would try and find an occupational therapist who has experience with adults, or is at least willing to work with an adult. Occupational therapists are the proffessionals who do evaluations and treatment for SPD.

There are ways to help deal with the symptoms you mentioned. Different things work for different people, and it can take time. It's been 4 years for me and I'm still learning about myself and am still adding new ways to cope to my "tool box."

For overload, and processing difficulties in general, I use a weighted vest. I always try to have it with me and it helps reset my nervous system and buy me a lot more time in which to spend in an overloading environment. The vest I have looks like a typical Jean vest and I wear it almost all the time at work. I also use a weighted blanket to reset at home and to help with insomnia. Overall I also do things to try and keep my anxiety as low as possible (not always easy since I also have an anxiety disorder) and eat regular protein rich meals. I also try and plan to ration my sensory energy, and learn the subtle cues my body gives off at the very beginning of overload so I can catch and deal with it early. I also have an escape plan in place from overloading situations, so I can leave a go to a spot to recuperate such as a car or a quiet hallway.

For visual processing and overload I wear prism lens glasses with a colored Irlens tint. Both help with visual processing and help reduce some of my typical visual distortions, the visual distortions I get in overload, depth perception, and some help preventing overload. For very difficult fluorescent or LED lighting, I use sunglasses that clip on to my regular glasses and a hat with a visor. I just recently discovered the combo of visor, sunglasses, and my normal glasses, and the difference is AMAZING. I can go places where before I would just shut down and loose my ability to function.

For hearing, most of what I do is prevention. I use noise canceling headphones in stores, at the movies, restaurants, when I'm a passenger in a car or plane, or whenever else I need them. I also use industrial earmuffs and sound filtering earplugs.

For really bad crowds, and at other times too, I usually have to rely on another person. I've learned what's called the sighted guide technique thats used when a sighted persons leads a blind person. This way I can close my eyes and not have to worry about walking smack into people or things. At airports when I fly alone, I request a person (either an airport employee or a friend or family member) to guide me to my gate so I don't get lost and end up getting stuck somewhere from overload and/or a panic attack (yes, that's happened to me more than once, and one time the police had to be called to come and find me). And to avoid the crowd when boarding a plane I usually request to preboard on basis of a disability to avoid the crowd.

To try and distract from sensory overload I often bring my iPad with me and so I can play logic puzzles I enjoy. Also to distract from skin picking and some overload, and for concentration I use various fidgets, also called stim toys, to play with in my hands.

Sorry, I just relized that this post has turned into practically a novel. Anyway, these are some of the strategies and tools I use.
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