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Justin-in-MI

Problems In Public Places-Sensory Overload

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Trying to see if anyone else has the same issues that I do regarding public places. I was diagnosed with a general form of dysautonomia (not POTS). Along with a bunch of other symptoms (of which are not the topic of this post) I can not tolerate going into restaurants, stores, etc. due to the combination of noise and bright lights. In the case of the grocery store or even my own pantry at home all the labels "wig me out". I start to sweat, bp drops, I get weak and feel like passing out. The longer I am in the environment the worse I get. These feelings start as soon as I enter the environment and after about 5 minutes I have to leave. This is very frustrating. I can't go out to eat with my family. I can't participate in my kids school activities. My wife and I attended a wedding tonight, and by attending I mean she sat and talked with everyone while I sat outside the building. I try earplugs but they don't help at all.

Just wondering if anyone else deals with this as well. Thank you for the support we all give each other.

Justin

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I do get this problem and have done with ME/CFS for years and now it's even worse because of the auto dysfunction getting more pronounced. I do empathise with you on this. I hate walking in crowds and have never enjoyed having too many people around. I've always been a more one-to-one kind of person. If I feel particularly unwell and the anxiety comes on really bad and everything is too much and my reactions and sensitivities are heightened. It's hard to deal with but improved since on the medications and by centering myself and blocking out a lot of the noise and bright lights/colours etc. It took me ages to master this and meditation, affirmations etc have helped. If I am amongst noisy people I only focus on one person who I am conversing with. If at home I go and lie down if it gets too much and outside I calm my nervous system by talking to my inner self. I go into my own little world and it makes it all less full-on.

I know this is all part of the condition and not some weird psychiatric condition. Take it one bit at a time and don't think about it too much. I'm seeing my close friend later and at one time it would have sent everything into overdrive, but I'm good, I'm calm and that makes it so much better.

Good luck and take care

TC

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I can relate to this... happened in a very busy grocery store yesterday. I'm sensitive to loud sounds, bright lights, crowded places etc. I described a bit about the visual issues I experience here http://forums.dinet.org/index.php?/topic/22320-visual-issues-hard-to-explain/

My meds have helped quite a bit with this... I had to stop them a while ago for tests and noticed a huge increase in my sensory sensitivities, which have decreased again now that I’m back on my meds. Other than that I haven’t really found anything that helps substantially. At large events, I try to sit near the edge of the room, rather than right in the middle of crowds. I also try to face a wall rather than a large window or the crowd. It does take a lot of effort not to bump into things, because of the visual issues, and also a lot of effort to carry on a coherent conversation in these types of situations. I end up taking frequent breaks. Hope the wedding goes well tonight.

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This was very pronounced for me initially, but as I was started on medication, it has helped a lot. I'm still able to sing in the choir. I look down, or even close my eyes at times in bright light, but I have to limit my social activities because of it. I can't do too much in one day, or I will become too agitated or excited, which in turn will make me symptomatic. My sympathetic nervous system will go into over drive. That's why I usually stay home on Monday after singing on Sunday, because I need some down time. You will get to know your limitations. It is something you get used to after a while. I have ringing in my ears constantly. It used to bother me, but I've learned to get used to it. I ask for booths in a restaurant. I will not sit next to the kitchen, either. Can't stand all the business around either. Flourescents used to bother me, as well, but it is getting better. I used to be very social, but now I'm used to being content with my circumstances, and choose my outings wisely. :)

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I have a lot of trouble with this, especially in places with fluorescent lighting, like malls. That plus crowds and constant noise makes me feel really overwhelmed. It's just as you said, sensory overload. These days after shopping at the mall I feel horrible. I've since started doing a lot of online shopping.

I also get the same kind of feeling at movie theaters, especially if it's crowded. I can't take the super loud volume and booming speakers, and I find I have to look away from the screen frequently. I used to love going to concerts when I was a teenager, but that's pretty much become a no-go for me because I know I would hate it and it would make me feel awful.

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Yes. I just had to leave church today about 3/4 through the service. I tried to stick it out as long as I could. At first I thought it was just from the walk in to the church. But then I started to realize every time the music and singing started I would get worse, and when it stopped I would feel somewhat better. After awhile it was just too much. My face was twitching in 3 places, my left arm was tingling and starting to feel weird and I was getting that "other worldly" feeling and thought I should get to some fresh air and quiet so I went to the car, staggering, which was embarrassing, but at least I didn't pass out in front of everyone!

Stores bother me too, it doesn't take long. When I can get to them, I can't stay long before getting symptomatic. I don't even have to walk through the store. Many times I have had my sons get what I need through the store while I stay up front by the register waiting to pay and get symptomatic just standing there. It must be the lights. I can't figure it out. It can't be a store anxiety, I want to go to the store and get what I want! And I LOVE going to church. It's very bothersome! I've had problems at church for years, but not as bad as it is now. Sensory Overload makes it all make more sense.

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I am also challenged with a low sensory overload threshold. I have significant problems with light, noise and motion. Over time I have learned ways in which I can tune out or adapt to some of the overload although not to the point where I feel comfortable in any setting as I once did. I used to be a labor and delivery nurse and thrived on the type of environment I now have a difficult time tolerating. It is all still such a weird and alien feeling to me but it has to be dealt with in one way or another. In any event, I do avoid or limit overexposure to stressful environments and events as much as possible, I have just walked out of places that were too stimulating, I use relaxation type breathing, I use earplugs sometimes, I wear sunglasses a lot, the list kind of goes on. You start to figure out different things that will help increase your tolerance level. I'm sorry for everyone else that struggles with this problem. It is immensely frustrating I know.

Janet

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Thank you everyone for your responses. Sounds like (unfortunately) other people are dealing with the same thing I am. Every time I try to explain to someone how I feel I always seem to throw in "and no I am not an agoraphobic." I have been dealing with this for 2 1/2 years (I'm 34). One night it was like a switch. Went to bed fine woke up with dysautonomia and have been learning how best to deal with this since. Thankfully I have a very understanding and supportive wife (and DINET community). Everyone feel well!

Justin

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My son cannot handle a noisy environment. If we go out to eat, it cannot be during the peak hours of lunch or supper. The light, noise, music, all make his headache worse.

Justin, you are defiantly not alone in this situation. Many POTS patients have trouble with sensory overload and hypersensitivity. Wish I had some answers for you. Have you seen a neurologist? Sometimes they can help in this area. This has problem has become worse for my son in the last several weeks. Sometimes it can be related to medications. Are you on any medications that could be making this problem worse?

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Looney,

Where do you live, maybe your son and I can have meals together in dimly lit rooms with no noise and no surrounding movement. We will use paper plates and plasticware so there is no "chinging" sounds while eating.

Not sure if anyone here is a fan of the show "How I Met Your Mother" but there was an episode where some of the friends could not watch the Superbowl so they all agreed they would watch it together the next day. No one was allowed to hear, watch, or get any info on the game before hand to ruin it. Well Mosby came up with this thing called the "sensory deprivator 2000". He wore it like a hat and it blocked out all sounds and gave him limited tunnel vision so he could only see directly in front of him and it blocked his peripheral vision. My wife and I joke (but are completely serious) that this is something I need for public. If anyone has seen the episode they know what I am talking about. If you haven't, we'll sorry you just read this paragraph. Maybe you can find it on YouTube if you want a chuckle.

I am not on any medication. Medication and I don't agree with each other. I have Chron's disease on top of this and when I started treatment for that (about 7 years ago) with remicade I developed drug induced Lupus. Joint pain like you wouldn't believe. Steroids gave me crazy side effects. Then when the dysautonomia started the cardiologist put me on florinef which sent me into a-fib. Heart was at 190bpm by the time I made it to the hospital with no signs of slowing down.

I have thought about possibly trying an anti-depressant and going to see Dr. Grubbs in Toledo but I read horror stories about people trying different ones. Making things much worse and causing new problems...like any of us need that!

I just drink around 80-100oz of Gatorade a day to ensure I don't pass out and just deal with all the other symptoms since their really is no meds to help everything else (fatigue, fog, etc). At least that is what I have been lead to believe (Mayo Clinic and University of Michigan). I did see neurologists at both places and they believed that this is more of a cardio issue, treatment wise.

Justin

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I've had problems with sensory processing too. When it was at it worst, it wasn't just going out it public, it was everything really - I couldn't stand lights in the house, TV, on the very worst days I couldn't stand to be touched or even really hold a conversation. For me it's really been the most frightening part of this disorder. I got POTS suddenly last May and didn't have any new symptoms until my sensory issues started in February. By April I wasn't leaving the house and was barely leaving my blackout-curtained room. At the beginning of June I started getting better - a lot better. And now it's been 3 weeks since I've had any issues - I've been out to the grocery store, to doctors office (which were a huge trigger before), had friends over, etc. I'm not on any medications and the only thing that changed in my life was 2 supplements - at the end of April I started taking magnesium and at the beginning of May I started zinc. A doctor recommended the magnesium because it's supposed to be good for migraines and sensory sensitivity is common in migraines. The zinc I was taking for an immune boost, may be completely unrelated.

Anyway, this may just be a lucky phase, I know that lots of times the cause/effect relationships with our disorders aren't very clear. But the change has been so drastic for me, I thought it might be worth sharing for anyone else! Also if you read about magnesium and sensory processing issues in autistic kids, I think there's fairly good evidence that there's a connection. And it's definitely good for regulating the sympathetic nervous system, which we all need anyway! So I would definitely recommend giving it a try. I take 3 teaspoons of Natural Calm (magnesium citrate) a day - about 500 mg.

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I take a multi-vitamin daily but I will try additional magnesium. Have you had any side effects from the magnesium. I know zinc can be hard on your stomach. I tried those cough drops with zinc for an immune boost when I had a sore throat but it gave me stomach aches.

Justin

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I get this! I consider it to be one of the "triggers" of my symptoms. I remember once when I was younger I nearly fainted and had to leave a show at Sea World because all of the lights and noise were making me physically ill. Similar things kept happening after that. I spent an entire trip to Disney World being sick, if you ever want to find a place that is truely overstimulating that's a good one haha. Movie theaters are also generally pretty miserable as well, unless I'm seeing a very calm film.

I was originally diagnosed with agoraphobia but that's not the case at all. A combination of having to stand, bright lights, loud noises, strong smells, these are all triggers for me. I noticed a lot of people mentioned church being difficult, I feel lucky I go to a contemporary type of church that plays only acoustic music and the worship is in a very dim, almost dark, room with soft gentle lighting, perfect for me : )

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This happens to me also. I've had to leave places early. Flourescent lights are awful and any sensory overload, noise, too many people, some smells that are strong, etc. all flare my symptoms at times. It is not fun to deal with and most people do not understand why I have had to leave early for events at times. I can't go to fireworks due to the sound and vibrations from the fireworks or loud bands with excess bass.

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I really wish I understood more about the hypersensitivity stuff. My son has been off florinif for 12 days. I was really hoping this medication was causing the problem. That's the reason I asked about medication. Sounds like florinif did not help you either.

If Gatorade seems to help you, you might want to try this home made version. One cup has 300 mg of sodium and 50mg of potassium. It's sour, but the whole family is hooked on it. Here's the recipe: 5 cups water, Juice of 1 lemon, Juice of 2 limes, 1/4 teaspoon of iodized sea salt and 5-6 Tablespoons of Stevia.

My son also takes magnesium citrate but it does not seem to help with the hypersensitivity. I have found a baby oil with lavender and chamomile. I have started rubbing this into his feet and legs before bed time to see if this will make a difference.

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Looney,

I can't imagine how hard it must be for your family. I have a 6 and a 7 year old and it kills me to see their pathetic faces when they get a fever. At least I know in a few days they will be ok. You must feel so helpless, scared, and worried 24/7 with your son. At least as an adult I can effectively communicate what is wrong and understand my limits and triggers. I can't imagine he has that all figured out yet because of how young he is. I hope things get better for you.

The way you should look at the hypersensitivity is like this. We are surrounded by stimulation. The more senses that are involved and the more stimulation there is the worse it gets. If I was sitting in a dark room with no sound I am at a 0 and all is well. I start listening to music I go to a 1. Turn on the lights, a 2. Put a few people in the room with me a 4 and now I start to not feel good. Now imagine a restaurant. Bright lights, lots of people doing a lot of things, loud sounds coming from every direction, add eating on top of that which makes things worse because all the blood goes to your digestive system to help digest food. That means less blood to keep my bp up. We are at a 10. I simply can not go to restaurants. Not sure if this helps you or not.

As a parent I understand wanting to help your child so if you ever wanted to message me please do so. I would love to help in anyway I could.

Thanks for the recipe I will give it a try. Probably cheaper than the amount I go through each week.

Justin

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Your example really did help. It makes much more sense now. I understand why he has to have the quiet environment. However, he really does miss being with his friends at school. He just turned 13 in April. If we can ever get the headache and pain issues resolved, school will be the first thing he will want to go back to.

Enjoy the recipe. You can probably use regular sugar, but I try to help my son maintain his weight since he is not able to exercise right now. His tremors are so bad that he is unable to exercise. If you would like to read his story, it's on a blog called survivingpots.com. I have a feeling, my son is probably going to make medical history because of how severe his symptoms are. He was 11 when diagnosed by MAYO.

The Dinet forum is a great place to be able to ask question about POTS. So don't be shy about posting questions . Someone may be able to post an article or share their experiences about medications or other therapies.

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I used to get this. It ******.

Try this: Leave the earplugs at home. Go out in public, stay out even though it *****. Push through your symptoms as much as you can without causing you to crash to the point where you can't function. And periodically go to a quiet, comfortable place. Say... Every hour or two, and do slow, diaphragmatic breaths. You aren't to starve yourself of oxygen, but you'll find that even 6 breaths per minute is easy. Breath with your stomach - push it out. No puffing up your chest ;) Slow, deep, complete breaths. P.S. you can't do this on your stomach. I like to do it sitting or reclining. On the couch or something, but a car seat works well.

While doing that, imagine yourself in a calm, relaxing place. Like a beach. Think of the most vivid imagery you can - the sand in your feet, working it's way through your toes. The feel of the mist filled ocean breeze, etc. And/or go through your body, joint by joint, muscle by muscle, tensing for a few seconds, then releasing and feeling yourself go limp.

I like to do this with my eyes closed.

Once you are done that (10-15 mins), return to your normal activity.

The idea behind this is that you aren't giving your brain a reward system by staying away from things that aggravate it. Instead, you are using the concept of plasticity to cause your brain to adapt and, eventually, re-write the neural pathways. It took me about a week and a half of doing this and now I have zero problems with this stuff anymore :D

It won't be easy, but don't think about your symptoms either. Acknowledge they are there, but move on. Don't dwell. Do something to get your mind off them. And certainly don't talk about them. Again, because of the idea of neuroplasticity.

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Reading all this has been amazing. I recently wrote about this too because I wasn't sure it was part of the dysautonomia -- and after two and a half years of being diagnosed, I have found myself super sensitive to everything so I can certainly relate, Justin. But it didn't happen with the POTS, it happened slowly after the POTS and as it has gotten worse for me. For the last few months, I can't stand to be with more than one person, and not outside, certainly not in a restaurant with all the noise. I didn't understand it a year ago when I'd go to a party and needed to sit away from everyone, exhausted by all the stimulation. I haven't been certain why I can no longer go to a movie house, but just want to run out and go home. I am exhausted by all of it, hate stores, find them overwhelming, can't really go anywhere except work which is my own office or an apartment where one person is. No more public places and I live in NYC. In therapy it is being examined as claustrophobia, or worse, vitaphobia (fear of life), but in truth, the physical oversensitivity is making any public place unbearable and I feel safe where it's quiet and calm. I would like to learn how to desensitize myself, or calm down so I can take it better. Some of you have said your meds help. Which meds?

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Hi Justin and welcome.

I've been dealing with this long before I was diagnosed with pots. Sensory overload is hard to deal with. I started a new med recently and it's making my OI worse -- but I should adjust I've been told -- and last Sunday I was in a library having walked there on an overcast day with my sunglasses on (I wear them everywhere)when I felt off balance, felt one of the big tall shelves fall forward slightly towards me and then needed suddenly to pee. Weird I know. I managed to check my books out, but the walk home which usually takes about 10 minutes, maybe took me about an hour. I had to keep stopping and resting despite wanting to be as far away from the traffic and Sunday walkers (out in force) as I could be.

It confirmed to me that I'm moving out of the inner-city where it's very busy and back to the sea-side. I just can't cope with the population density.

At home I never turn on over head light. I use lamps and they have low wattage. Drives hubby crazy but after years of me switching off the overhead lights and turning on the lamps he's finally given up. He has a study where he can sit and read to his hearts content with a bright overhead light on.

I had thought of earplugs but not tried them. Traffic moving past me also sets me off or makes spells worse. Crowds moving, noise is terrible. I can stop for a coffee in a quiet coffee shop. Or if busy we will go to one with outside seating. It's not just that I can't handle the noise and movement and light -- I just can't hear what people are saying to me when everyone around me is talking. I can't pick out there voice even when I strain to. I think my sunglasses could do with the addition of blinkers too like horses wear. LOL. Movement in my peripheral vision can be a problem.

I so wish they'd stop making flouro lights. The medical profession now realizes that migraineurs will often be able to pick up the flicker. Horrible things

blue

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SnowDrifter

Where did you learn about the concept "plasticity" and can you point me in the direction to learn more about? If you say it helped you I am willing to try it. I consider myself an open-minded skeptic. That is I am willing to try anything however I doubt it will work.

Lynnie

What doctors don't understand is that what we deal with are not fears or phobias. This is real stuff that makes living life at times unbarable. We are not afraid of life or of going outside we simply can't do it without feeling awful. Tell your therapist to stick his/her hand on a hot stove I bet they wouldn't do it. Does that make them afraid of stoves? No, it means they know if they touch it they will get burned. No difference. I choose not to go to restaurants because I will feel awful, not because I am afraid of public places.

Blue

You are basically describing the same exact way I feel. Thankfully my wife is understanding and I don't get into light wars with her. It makes me feel a little better that I am not crazy and other people are the same as me, but at the same time I don't want anyone to have go through what I am going through. I am ok with dealing with my issues. The only time it hurts me is when my children (6 & 7) want me to do things with them that I simply can not do, carnivals, the zoo, indoor waterparks in the winter. I feel like they have 75% of a dad. It is what it is though and we do what we can.

Thanks everyone for your responses!

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SnowDrifter

Where did you learn about the concept "plasticity" and can you point me in the direction to learn more about? If you say it helped you I am willing to try it. I consider myself an open-minded skeptic. That is I am willing to try anything however I doubt it will work.

It's just a way of describing your brain's way to adapt. You experienced this the first time you rode a bike, when you learned to walk, etc. Your brain can adapt and change. We just need to coax it into adapting and changing in a way that is helpful. Whether you realize it or not, your brain is like a little kid whining at you and you give in. So it learns that if it presents that it doesn't like the stimuli and you remove yourself, it will only strengthen that. If you force it to adapt and change, it will gradually get better :)

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I deal with this too. It's awful. Stores & places with floursescents are the worst, but lately I've been having a rough time when the windshield wipers are on in the car - the fast back & forth movement really sets off my sx. Unfortunately with all the rain on the east coast those wipers have been going a LOT this summer! Certainly ratchets up the resulting motion sickness.

My pots neuro gave me Valium which helps a bit. Just 2mg. I don't take it v often - he said to save it for times when I really anticipate having overstim issues. It doesn't make the issues go away but it tamps down the severity so I can mange the situation better & longer.

I wish they'd research this component of pots/ dysautonomia. I mentioned it when I was at Vandy & have encouraged others to do the same with their doctors...

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