Sensory processing disorder is ruining my life.

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I'd say that for the majority of my life I didn't know I had a sensory processing disorder even though it was causing problems that have only escalated as I've gotten older and I didn't get diagnosed with Asperger's until several years ago. As a kid it was mostly an auditory processing disorder that made it difficult to focus in school(I can't really read/write at the same time someone is talking or if there's too much background noise), but I also definitely engaged in sensory seeking behaviors.

I didn't really have any sensory sensitivities until my late teens. These seemed to come on gradually after I recovered from a very bad case of Fifth's disease and have gotten progressively worse over the years. Was also diagnosed with fibromyalgia/cfs several years after that which can also come with a lot of sensory sensitivities.

These sensory sensitivities make my life hell. Some of them are more or less easily managed, but others can make me miserable on a daily basis. There are a lot of sensory issues that can cause me pain, emotional distress, or make me feel ill if I don't avoid them, and this has led to me kind of feeling like a prisoner in my own home, but even in my own home I can't get away from the stuff that hurts me.

I think the things I struggle with at home most at home are smell sensitivity(which I think is a combination of sensory processing, allergies, and multiple chemical sensitivities) and noise sensitivity. The first one really shouldn't be a problem, but it is because it's difficult to get family members to cooperate. Basically I've had to cut out all personal care and laundry products that contain fragrance/scent whether it's natural or artificial. Sometimes I have to try several supposedly fragrance free products before I can find something I can tolerate. I've had to insist that my family only use natural cleaning products.

It used to be fine if they used scented laundry products for themselves, but then something changed(either with the products themselves or with the washing machine) and the whole house would start smelling when they'd do a load of wash and I'd get sick and feel like I was drowning in my own bodily fluids and would cough, get headaches, dizziness and trouble breathing, so that stuff had to go. My family has had to change shampoos so many times for me because they'd smell so strongly after they got out of the shower and sometimes it would last for hours. Sometimes the smell wasn't just on them but would linger in the hallway and bathroom. Sometimes the smell would even get into my room via the air vents. I'm pretty sure they all resent me for not being able to use the products they want to use and get sick of having to change when a product I previously tolerated starts making me ill.

It would be so much easier if they all switched to scent free personal care products, but I can kind of understand why they won't. It was a pain in the ass just to find stuff I could use, especially shampoo, and I should really be more upset with product manufacturers for not making scent free products more widely available and affordable. But still, it really sucks that I always have to be afraid of getting sick in my own home. And my mother absolutely refused to give up hairspray even though it made me really ill. We tried to set up safeguards so it wouldn't effect me, but there were always slipups and I'd get sick from it again. She hasn't used the stuff at all since her stroke, though. I'm not sure if it's because her looks are much less of a priority now, or if it's because she can't style her hair one handed, but I hope the vile stuff is gone for good, and it may be one of the few good things that's come out of her stroke. I'm sorry if that last bit comes out sounding really horrid and selfish, but you have no idea how many times she's made me sick to the point of even having asthma attacks and still wouldn't stop using the stuff. It was a repeated source of arguments and made me feel really unloved that she'd put her hair before my health, and she always insisted that I was overreacting.

These days noise seems to be the number one cause of stress in my life, and sometimes it feels like my entire life revolves around trying to minimize the stress that noise causes me. I can't sleep without earplugs in, so this makes me more noise sensitive when I wake up in the morning. Actually I'm not sure the ear plugs are entirely to blame because sometimes I'm take naps without earplugs in and I'm still more sensitive after waking up. Well regardless, I'm more noise sensitive first thing in the morning. So after getting up and taking my morning medication, I need to spend like two and a half hours with headphones on listening to music to try to get my ears more acclimated. I can't really eat first thing in the morning, so I don't even have breakfast until I'm done with my morning relaxation time where I'm usually doing whatever on the computer while listening to the music. I'm not entirely sure if I really need that much music/relaxation time, but it usually takes that long until I'm ready to have breakfast. I find that deviating from this morning routine can really stress me out. It's less so if I have advanced notice, but I still hate it.

Depending on the trigger sound, it can be physically painful, and there have been times I've tensed up so much that I started having severe muscle spasms in my neck that would cause my head to shake from side to side. I'll also sometimes get a severe tic in my right arm that will cause it to jerk around but that happens with stress in general and not just from noise. On top of pain, certain sounds can trigger feelings of extreme anger and I completely lose control of myself. Usually it's just yelling, but sometimes I can't stop myself from hitting or slamming objects. If the bad noise is happening while I'm on the toilet and trapped in the bathroom, then I'm likely to start banging my arm against the wall. Thankfully I've never done it with my head. Before I knew what the hell was wrong with me I thought I needed anger management and tried to get it from several therapists but they all kept telling me that based on what I was describing. Anger management wouldn't help me. Now I know what's wrong with me, but I still feel like I need ways to manage the emotional outbursts, but it's like I have no control and I'm watching what's happening from outside of my body with no way to stop it and I feel like s**t about it afterwards.

A lot of times I'm stuck up in my room when I don't necessarily want to be there because of noise issues. There are lots of times when I'd rather be watching TV in the living room but I can't until late at night. Noise issues can completely ruin meal times with the pain/anger they cause me and can even interfere with my ability to taste and enjoy my food, so sometimes I just bring my food up to my room even though I'd rather eat downstairs with my family. Even up in my room I can't always escape trigger noises without taking extra measures such as having a fan on really loud. After awhile the fan noise can start to bother me too or it might just make the room feel too cold. Sometimes even the fan isn't enough to drown out noise and I'll have to put headphones on and listen to music(which won't drown out stuff if I'm in another part of the house) and I hate having to do this if I'm not in the mood to listen to music, which is the majority of the time. Most of the time I just prefer silence because it's difficult for me to concentrate on other things I want to be doing if music is on such as reading and writing and I definitely can't listen to music if I'm trying to watch a show or movie. So yeah I tend to resent having to listen to music when I don't want to even if it's better than the bad noise because I can't focus on things very well. Instrumental music is better than stuff with lyrics, but I just really want silence.

I've tried noise isolating ear buds in other parts of the house with music or tv and oddly enough there were times when I couldn't hear the phone ringing right next to me but could still hear trigger sounds from further away in the house. I haven't tried actual noise cancelling headphones yet because they tend to be expensive and are usually those huge over the ear headphones. Everytime I've tried headphones of that style I couldn't stand wearing them for more than like ten minutes because they'd start to put pressure on various parts of my head depending on the brand. Anyway, based on the research I've done, they probably wouldn't even block out the high pitched trigger sounds that I have the most trouble with.

I just hate how much this noise sensitivity is ruining my life. It's a constant source of stress and depression. I broke down crying earlier today because I was having a fatigue flareup from my chronic illness and desperately needed a nap but my rest was constantly being disturbed by noise. I know I probably need sensory integration occupational therapy and I've been trying to get it but the place I'm supposed to have an evaluation with is having trouble finding room in their schedule for me. I did have an evaluation for this at another practice several years ago, but the only treatment they offered for noise sensitivity was something not even covered by insurance and I just couldn't spend that much without a money back guarantee. I don't know if this new place will have anything different or not to offer me.

I did just start with a new therapist after being without therapy for a year and a half(not by my choice). Only had one session with him so far and his only suggestion for me was that to get myself out of extreme emotional states I should submerge my face in cold water and hold my face there as long as I can hold my breath but stop if the cold hurts too much. Unfortunately, when I'm having an emotional meltdown, I usually find that I'm incapable of following through with coping mechanisms. It's like I just can't remember what they are in that state, or if I do remember, I'm just not able to actually do them because of feeling frozen, crying too much, executive disfunction, or possibly a combination of those things. I did try to explain that to the therapist. When I broke down crying today, I did eventually remember about the face in the water thing, but I didn't even feel capable of moving until I'd managed to calm down a bit. It just requires too many steps to follow when in an emotional state. I feel like there's very little chance of me being capable of doing something like that unless I had a full time aid that would see I was upset and fill the sink or bowl with the cold water for me and then physically lead me to it.

I just really hope I'll find something to help desensitize me someday. I can't live like this, and I've been so emotionally unstable and borderline suicide at times.

You might be thinking nobody has read your post due to the fact it has no replies.

The fact is I have read it I would guess so have many others.

You bring up issues that are not easy for me to put into words but I can totally identify with your post.

You posted a long post which I read and the only proper reply would be a long one but putting what I am thinking into words can be a challenge.

Please keep posting.

Thanks for your reply. Yeah, I know it was long and I know long posts can put people off at times, but I'm just naturally very verbose. Believe it or not, it was going to be much longer, but I decided to cut out describing other sensory sensitivities which don't cause quite as much distress in my life such as temperature, light, and tactile sensitivity. I also decided not to talk about how I've become quite overweight because my primary sensory seeking behavior now is eating, which has only gotten worse over the last year or two because something is causing my sense of taste to become dulled.

I wish I could say that writing everything down had helped, but my mood is still very low. There's a good chance that I'll feel somewhat better in the morning after I've gotten some sleep, but my mood has just been all over the place the past few months. It seems like the smallest thing can set me off at times and then the rest of my day is ruined, and it's really taking a serious toll on me. A social worker told me that she thinks I should be in the hospital and I think I agree with her, but I'm terrified that the hospital would make me worse for a number of reasons. I just wish I could be treated in the normal hospital where I'd feel safer.

I guess I would try to discern what things make it better vs worse. I'm sure you've done that to some extent already. It's hard to tell what is a 'hardware' problem and what is more nutrient/chemical related. The two influence each other anyway. And yeah, at least age tends to lessen sensory sensitivities.
I see you put a lot of effort into this issue; don't give up.

Unfortunately I seem to have the opposite experience. I didn't have these sensitivities as a child. They developed gradually in my mid/late teens and have gotten progressively worse over the years. I'm 33 years old now and I don't have any reason to think that they'll get any better as I get older. Some of this is definitely hereditary. I know through observation that my father definitely has some noise sensitivity issues and I strongly suspect that he's also on the spectrum. However, he's extremely mentally ill and was very abusive when I was growing up so he had to be removed from the house and I don't have much contact with him. There were a few times when I tried to ask him questions about his noise sensitivity and he pretty much just ignored me and talked about whatever he wanted to talk about. I asked his sister if he had these issues when he was growing up and she said that he was always a bit off but as far as she knew he didn't have the noise sensitivity back then. He's in his sixties now, and I have no way of knowing if the noise thing is still a problem for him since he doesn't seem to want to talk about it, and I have no idea if he has or has ever had sensitivities to other stimuli like I do.

As for what makes it better and worse(just focusing on the noise sensitivity), well I've identified a very long list of trigger sounds. Certain trigger sounds I've gotten more tolerant of over the years and sometimes new trigger sounds pop up or ones I've had for awhile get worse. Some of these are impossible to avoid even in my own home.

I know wearing earplugs a lot during the day definitely makes me more sensitive, so I try to avoid it if I can. I was told that I should stop wearing them at night too, but while I can get to sleep without them in if I'm tired enough, I'm much more likely to wake up from noise such as someone getting up in the middle of the night to use the bathroom. I've also gotten so used to the feeling of earplugs in at night, that it can be hard to fall asleep sometimes when my ears are empty. Other sensory sensitivities flaring up can definitely make me more sensitive to noise too, like if I'm overheated. Not getting enough sleep or being overly stressed in general can make it worse. Being extremely fatigued or in pain from my chronic illness flaring up can make it worse.

As for what makes it better. I'm not really sure other than being heavily sedated, which isn't a real solution. Years ago I got my doctor to prescribe me neurontin because I thought a medication that dampened down my nervous system might help. It did help a little, but really only took the edge off, and then worked less and less as I built up a tolerance to the drug. Eventually I was told that they couldn't really up the dose any more and I realized it only worked when I had the side effect of grogginess. Once that side effect went away, it didn't really help with the noise thing anymore. I'm still on that medication though because it does seem to help with certain types of pain, and I guess it's a good thing if it reduces the frequency in which I feel like I badly sprained something in the absence of any actual injury.

There were also times when I was really out of it after surgery, both from the pain meds and the after effects of the anesthesia and that helped with the noise sensitivity, sort of. I mean the noise still bothered me, but I just wasn't capable of reacting to it in that state if it makes any sense. Really I wasn't capable of doing much of anything but lying there and drifting in and out of sleep. So yeah, being heavily sedated probably helps but I'd be completely incapable of doing anything I enjoy or functioning at all.

One thing I haven't tried that I would like to give a shot is hypnosis. I don't know if it's possible to give a hypno therapist a list of my trigger sounds(and other sensitivities) and then have them reprogram me to not react negatively to them, but I'm probably at the point where I'm desperate enough to try it. Insurance coverage is a problem though.

I've read up on "shock" therapy somewhat. I wouldn't advocate it for most people---unless (possibly) the person was so depressed that they are almost "immobilized" (i.e., they spend most of their time in bed). I have heard that it has worked for people with depression.

But be mighty careful with "shock" therapy, and don't just go for it on the fly. Read up on it. Go into forums devoted to psychiatric treatments.

Thanks for your responses.The primary thing stopping me from trying hypnosis is a lack of disposable income and lack of insurance coverage. I don't think that my insurance specifically doesn't cover hypno therapy, it's just that I haven't been able to find any hypno therapists that actually take my insurance. Mental health providers that take both medicare and medical assistance in my area are extremely scarce which is why I've been out of treatment for a year and a half. The new guy I started with(who doesn't do hypnosis) can't even see me on a regular basis right now because his schedule is too full. I saw him on June 1st and my next appointment isn't until the 23rd. If it weren't for the fact that I'm not safe to drive, I could just go with someone that only takes Medicare, but the paratransit service I use will only take me to medical assistance providers for free and I can't afford their rates for non-medical assistance providers.

However, I did get approved for a state waiver program that might be able to provide me with additional funding. It's a long process though and I'm not even sure at this point what services I can get through them. I don't even know if they'll have much of the services I need since it's not focused on autism(though I was told that I could get additional help with transportation). I tried to get the Adult Autism waiver and was told it was a three year wait just to get the application for it!

The "shock therapy" idea(which should probably be called exposure therapy) is interesting, but the idea of it makes me very nervous. I agree that something like this would definitely need to be done under supervision, because I'd definitely be at risk of hurting myself.

I probably shouldn't do this with the smell stuff though. Like maybe for smells that are just overwhelming but don't actually make me ill. Unfortunately the smell issue is mixed up with multiple chemical sensitivity, migraines, and allergies/asthma and radical exposure like that would probably do me serious harm. I've found that when I've had multiple inadvertent exposures within a short period of time, the reactions keep getting progressively worse. It's not just about being sensitive to a smell, it's about my body having toxic neurological and/or allergic reactions to the substances that are producing the smells. One particularly bad reaction to air freshener happened when I couldn't even smell it because I was really congested at the time(had to be off of allergy meds for testing) and I didn't fully recover from it for about two weeks. I hope that made sense, but if it doesn't, it's just like you shouldn't try to cure someone of a peanut allergy by repeated exposure.

It's probably more appropriate for the noise, light, and tactile sensitivities. Possibly for the temperature sensitivities too, though I do feel extremely ill when overheated. Despite the way I feel when overheated, I'm not sure if I'm in any actual danger. Though it's definitely an asthma issue if the air is too hot and/or humid. There was one time I felt so sick when overheated that I had to immediately take a cold shower because I felt on the verge of throwing up and going into convulsions and I don't even have epilepsy. Of course cold water hurts now, too, and maybe that could possibly be helped by exposure therapy.

Definitely a subject to think carefully about. I'm just really hoping to get some sort of sensory therapy at an occupational therapy place soon. I really need to follow up and call back(something I'm really bad at) the place that was trying to fit me into their schedule. And yet I think I should probably hold off until the waiver program is fully in place and see if I can get into this autism treatment center that was recommended to me but doesn't take insurance and will only take waiver funding or out of pocket payment.

Same here. My wife hates it when I stay up late, and dodge activities with the children. But I turn into a raging ass if I don't. I have to be driven everywhere because I can't keep appointments. Work especially. I am on my 41st job. And get PTSD from each workplace depending 99% on the visual, audio, olfactory stimulus. It sucks. I hate it.

Most of the doctors I've seen say that sensory therapy only works when a person is very young. Personally, I've found over the years that exposure does nothing to lessen my sensitivities overall. What has helped - and I have pretty severe issues, too, so I know where you're coming from - is focusing on the things that affect the severity of my sensory problems. Things like anxiety, breaking routine, prolonged exposure, underexposure, et cetera. On a day in which I have carefully attended to my needs, ensuring that I feel good physically and mentally, I find that I can do more in spite of SPD. It's still really hard, and I often come back home exhausted. But I can accomplish more with this strategy. You might also find such a gray area in which you can function.

Hypersensitivity to senses (sight, smell, hearing, taste and touch) is caused by stress. So to relieve this condition, one must remove stress.

The brain is composed of different components (brains). There is the inner core brain. This is like the brain of an infant. So if you replicate the actions of your mother when your were crying, these techniques are stress relief tools:

Pressure Therapy - Your mother placed your hands tight up against your body and held you tight or she wrapped you in a tight blanket. This is why Temple Grandin's "Squeeze Machine" works. It is also why weighted blankets work.

Sleep Therapy - Sleep is very important in recharging the body. One needs around 8 hours of good sleep each night. During restorative sleep our blood pressure drops and breathing slows allowing blood to flow to our muscles, repairing tissue. “A bad night’s sleep" can also cause an increase in cortisol, the stress hormone. Many times your mother gave you a warm bath before she put you to bed. It was almost like a ritual. So you might try a warm bath before bedtime. Also control your sleep environment. Minimize noise and light and interruptions.

Music Therapy - Many mothers sing lullabies to their child to calm them. Listen to music to relax yourself.

Touch Therapy. - Many mothers caressed their child to soothe them. Touch is a very important sense. Find someone who can hold your hand for a few minutes. If that person is calm they can transmit that calm to your body. Also massage therapy, even electrically stimulated massage can be helpful.

Motion Therapy - Many mothers rocked their children back and forth, back and forth. That is why many children like playing on a swing and why many grandparents would rock in a rocking chair on the porch of their home, peacefully watching life go by.

The next level up has a brain that is described as "fight or flight". When you encounter a threat, you either flee or attack. Unused stress energy builds up in your muscles and nervous system. This stress energy needs to be purged or it will slowly damage your body. This can be done by exercise but there is a secret here. Most exercise only reduces stress for a few minutes or hours. You need to purge this energy so that the effects last for days, week, and months. In order to do this it requires an extreme vent. You need to simulate being chased by a tiger, literally chased by a tiger. To vent stress from your legs long-term then do ten 6-second maximal sprints (around a 50-yard dash, running like a bat out of hell) with a 30 second recovery between each sprint. These are maximal or supramaximal exercise. This is exercise where the intensity or individual’s maximal oxygen uptake (percentage of VO2max) is 100% or greater. A similar approach can be used to vent long term stress from the arms. Use a punching bag and move your arms/hands so fast that they become a blur. (6-second burst) with 30 second recovery times in-between. You don't need to punch the bag hard, a light touch will do. It is the intensity and speed that counts. And then there is your fifth limb. You need to vent the stress in your neck muscles, vocal cords, and jaw. The best way is to scream at the top of your lungs several times. But you have to do this in a socially acceptable manner. I live in the country and my dog is a free range dog. When it is meal time, I call my dog, very loudly. My voice carries about a mile. It gives me a sense of great strength, like I could split a mountain in two just with my voice alone. You might try howling like a wolf at the moon. There is a person on this site that howls at the subway cars as they pass by deep down in the subway stations in New York City. But there are other ways to scream in a socially acceptable manner. A singer can do this if it is a very powerful song. A barker in the county fair can do this. Or find yourself a soundproof room.

Then the third layer, the outer layer, is your social brain. You will need to figure a way of relieving stress from this layer. Sometimes avoidance will work. Sometimes you need to confront the issue head on.

Remember stress is cumulative and the stress from these three layers add together to produce great stress and anxiety. So work on relieving stress from all three layers.

As far as your comments on meltdowns. When your new therapist recommended that you put your head in cold water, I thought I might provide some insight into this approach. A stressful situation sets off a chain of events. Your body releases adrenaline, a hormone that temporarily causes your breathing and heart rate to speed up and your blood pressure to rise. And in an Aspie that extreme stress can lead to a meltdown. One of the things that Bessel van der Kolk showed when he first started to do trauma research with functional MRIs is that when people are in the trauma state, they actually shut down the frontal parts of their brain and particularly the area on the left cortex called Broca's area, which is responsible for speech. When the person is in the traumatic state, those brain regions are literally shut down; they're taken offline. So in that state you lose your ability to communicate and also your ability to take concrete steps to get out of that state.

There is an approach that doctors use to force the heart rate down. It is called the Vagal Maneuver. One of the techniques they use is called Cold Stimulus to the Face. This technique involves emerging a patient’s face in ice-cold water. Alternative methods include placing an icepack on the face or a washcloth soaked in ice water. The cold stimuli to the face should last about 10 seconds. This creates a physiological response similar to a person being submerged in cold water (Diver’s Reflex).

So if you are having a panic attack, one where you become nonverbal, it might be possible to bring your heart rate down sufficiently "to give you your voice back" by running cold water on your hands or face for a few minutes. (I don't think people normally carry a bucket of ice water around in anticipation for a panic attack but sometimes a sink may be handy). You mentioned that you did not have the wherewithal to get to a sink in that state. That is the only problem in implementing this approach. But if you can recognize the signs that your body is about to enter a deep meltdown and you follow the cold water approach, it might stop you from entering this deep state called tonic immobility. Then you should calm yourself down and you will then be in control. Being in control will give you your life back.

I know this thread is from last year but I'll post just incase it can help the OP or anyone else who may read it. I've read posts by a couple people in this forum who said some of their sensory issues were helped by the beta-blocker Inderal/Propranolol. It can help with stress an anxiety.