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yes!! or fluorescent lighting. I feel so much more comfortable at home or outdoors. But I also feel like my anxiety plays a role, too. I chew gum and stay try to stay focused on one thing. Like only my table or place setting at a restaurant, instead of surveying the room and getting overwhelmed. Also, at a big store, i look at the ground sometimes, or my phone every once in awhile to get focused.

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i get this, but i found that exposing myself to it, helped it go away eventually:) I think of it as 5,000 conversations going on at the same time and trying to listen to all of them at once.

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YES. At stores, school, etc.

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Glad I'm not the only one. I went to dinner with my better half the other night and it was a busy Friday night. I thought I was going to either pass out (never have an hope I never do) or leave. I started to calm down a bit but it was still a struggle.

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My light and smell sensitivity seems to be related to my migraines and are better (not completely, but better) now that my migraines are more under control.

My noise sensitivity is actually pretty bad. I have super-hero hearing and it is not a good thing. I can hear everything like dog whistles and white noise machines. The lab tech that did my hearing test last year said she never had a hearing test that good from anyone. Yippee! :blink: One of the other members of this forum is an audiologist and told me its called hyperacusis and can be caused by nerve damage. I suspect (since I also have constant tinnitus) that this may be how mine developed and that the constant inflammation in my body is affecting my auditory nerves. When I was on high dose prednisone for 2 weeks, this was one of the many symptoms that got much, much better.

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This is my biggest issue. So, I might be having a bad day and I can get by. I can watch TV and do other things that don't require mental processing. BUT, add having to process information from somebody and communicate back it's very difficult. And because we are sitting so close across the table from each other, I start feeling anxious as I start to feel worse because I try to hide that I'm not doing as well and feel that it is easily detectable. Going out to dinner is really bad I noticed because 1) I'm sitting still and not moving 2) I'm eating which pools blood to my stomach 3) it always seems to be hot, 4) lights are usually bright 5) it's usually noisy. I for sure get anxious because I worry "what if"... what if I can't do it, what if I faint. That seems to ramp everything up and then my fight or flight kicks in more and senses become overcharged.

My thought is because the brain is not getting the blood it needs, it's not getting the oxygen it needs. When I'm overstimulated in the environment I think it's because my brain is asking for more oxygen to process all that is going on and it can't.

Interestingly I saw on an MS website that many people with MS have the same issue of being overstimulated. Wearing sunglasses helps me some. Some people consider using ear plugs. Some suggest sitting away from the kitchen to lower the heat and the noise.

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When I eat at my parents it can be very challenging. Since I finally gave in and told them about my issues I feel like they are constantly watching me while we eat. Not to mention my mom likes to cook huge meals and Ive told her time and time again not to do that (she just dosent get it). My fiance's parents are even worse. They are always fighting and most of the time the table is so quiet all you can hear is silverware clanging. I usually have to force myself to eat with them and it makes my symptoms worse.

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Interesting.... I am so home bound that it is rare I go anywhere- but we have 6 kids- so the noise level gets high- and I have a real problem with that and need to get away from it or they all need to tone it down fast. Well, this weekend my brother and sister are visiting and I decided I am getting OUT and doing something and everyone wanted to go to a hockey game (like kids out if high school before college level so not a huge stadium- they play at the same rink my boys play in). Everyone except my hubby and I went to the whole game but I know my max would be an hour... Because cant sit in my wheelchair much longer without syncope.

I've been to so many hockey games, I know what to expect... But last night with the yelling, the music, the lights, etc... I was immediately in a situation where I felt like it was between an adrenal surge and an anxiety attack. My left leg leg and arm started having jerks, HR was 180- next thing I know I'm lying down and had had a syncope episode. We were there less than 15 minutes. Still trying to figure how the sensory overload would drop my BP that fast while sitting- it was so discouraging. BUT- lesson learned- no major sporting events.

On the rare occasions I go to a store etc I experience this but at a much lower intensity. It's very interesting to me because my son used to be this way as a younger child (age 1-8.... He is almost 12)) but it got better each year- he is severe ADHD and ambidextrous which actually I just learned (total side note) is a HUGE risk factor for ADHD and other mental health issues- no dominant side of the brain I guess but he also was diagnosed at age 5 with Asperger's. I don't see many Asperger's symptoms in him so if he has it- it is very mild. My nephew also has Asperger's and is moderate-severe and really struggles with sensory issues and has since an infant. All of these conditions of the brain having overlapping symptoms is so fascinating.

Jen

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Certain combinations of light really distress me - it would be if there was a lot of natural window light and a light was on in the house as well.... it's totally awful for me to experience that light combination - so I rush to turn off the house lights - or close the blinds... been like that forever. Noise is always troublesome as well - mostly things like radios, droning TV's, people overhead in a mulit-level building - I keep my house quiet as I can. I once moved from a totally remote wooded area to a big city place with a train running through the yard - I had major anxiety and rarely slept - everything was so disturbing. Smells bother me - mostly food smells - I can't put the crock pot on overnight anymore as the smell of the food cooking makes me sick and keeps me awake. The smell of GoodWill stores gags me too.

Do most normal people also have things like this that bother them - even though they have no ANS issues?

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I'm quite the opposite. I've worked a few jobs where multiple sources of information were pouring in and it was up to me to keep an eye/ear on all of them for something which might be of relevance to me. In some cases it was up to me to make sense of the chaos. I actually thrive on it. The crazier things get, the more in my element I am.

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Over-stim is definitely as issue for me as well. My son is a sporty guy so he is constantly throwing a ball into the air, bouncing soft balls off the wall, dunking in his indoor basketball hoop - none of this has ever bothered me before, but since POTS it is very challenging to handle. (I get very nauseaus, have adrenaline surges, headache, etc) I will often have to go to a quiet room just to get away from it. On the not-so-bad days, I try to work through it without leaving the room in an effort to help my body adapt to the stimulation.

Some other things that have been triggers for my adrenaline surges are: my husband often will bounce his leg while he is sitting; the heavy bass sound in music; yesterday I watched a movie that had a 'heartbeat' sound when the character in the movie was dehydrated & tachy (thankfully I was watching at home and could control the volume...I never would have been able to endure that in a movie theatre!!). It's amazing to me that this is a totally physiological response without any precipating anxious thought.

Bunny, that's great that you are still able to function with all of that stimulation! I was always able to thrive in chaos as well (before POTS). I had a previous job for 10 years working with teens in crisis centres/group homes and I loved it. There was constant chaos, but I was known for my "calming presence" and ability to filter out and handle what ever crisis came up. I hope that ability isn't gone forever...

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Peace-

Our two boys- 11 and 13- are very sporty and they are always bouncing balls or tossing thing, jumping, floor hockey- these things drive me abolutely crazy, they ALWAYS have but in this flare it is so much worse. I usually just tell them to go outside but we live in Wisconsin so sometimes in winter (although not this one) that does not always work.

I have a hard time with this- I struggle between my patience/tolerance level and Mommy Guilt. It's bad enough to have me for a Mom- so disabled right now I can't do any of the things they are used to me doing... And thinking "Okay, is this a normal kid thing OR are they being obnoxious?" but the ball bouncing sound is the worst to me!!!!!

Jen

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I used to be able to handle anything - lived in manhattan & worked at a music channel in Times Square - there was music in the hallways, tvs on in every office blasting music videos, sirens, honking, etc 24/7. Now with POTS I can't seem to handle anything. A few years after becoming sick I started getting noise intolerance - couldn't handle CNN or loud music - anything with a lot of constant "chatter" feels like my brain's going into overload.

Then came light problems - Target and the grocery store are like the "perfect storm" for my symptoms! It's awful! I use sunglasses and a bball hat as my neuro-ENT suggests but they really don't help much. I get dizzy, nauseous, feel like I'm floating... it's terrible. I find going and sitting in a fitting room for a few minutes helps calm things temporarily.

Cars are also tough - all of the movement passing by, rocking of the car, stopping/starting are the worst! I get extremely nauseous and dizzy. Sometimes driving is easier than being a passenger but even then I can have the same problems.

Do any of you get a weird "visual" dizziness in flourscent lighting - like your eyes & brain aren't perceiving things at the same rate, so your vision seems to be choppy? I was talking with someone else here about that recently - and we both get a "shifting" or "swooshing" sensation behind the eyes at the same time this visual dizziness is happening. Just wondering how many of us have it.

Has anyone had a doctor tell them this is normal dysautonomia or POTS stuff? My POTS specialist/neuro said he sent another of his pts with this to Vandy and they didn't have anything to offer. That's frustrating. I wish they'd get going researching this side of things...

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Jen,

I can soo relate to the feelings you are talking about.

I definitely feel that guilt (big time!!) as well, so I also feel badly asking him to stop. Sometimes I do, but most of the time I just isolate myself for a little while until he's ready to move on to another activity. He's my only child too (so I have also have only-child-guilt :( when there aren't others around for him to play with) and I feel useless to him right now. Our favorite things to do were play football together, bike together, walk together, go for drives, etc. Our activities have changed to cards, board games and puzzles when I feel up to it. I am very thankful for the fact that I can even do those things, but I'm still mourning the loss of caretaking for him. It's all part of processing it, right???

Every once in a while I try to do things for him to feel normal (like make supper), but then I end up with huge setbacks and more symptoms.

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Oh Peace-

Sounds like we have much in common. There are so many things I just cannot do- guilt. Things that they do that just physiologically drive me crazy may be normal kid things but I can't tolerate- I have to ask them to stop or isolate myself (and I have to spend so much time in bed as it is) - GUILT. The things they've witnessed- fainting, bleeding, my rapid decline- guilt. Missing activities- guilt. As juju know- list is endless.

I love them so much and my husband and at times it seems as if I'm more of a burden than a wife or Mommy. I know that sounds like whining and melodramatic but I wonder how this is going to affect their lives. Some kids only remember the hard parts of growing up- will they remember the "other" Mom I was? It's heartbreaking.

Jen

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Interestingly I saw on an MS website that many people with MS have the same issue of being overstimulated. Wearing sunglasses helps me some. Some people consider using ear plugs. Some suggest sitting away from the kitchen to lower the heat and the noise.

Very true and something Firewatcher brought up a while back. Very interesting given recent suggestions in POTS and CFS that many of the etiologies are CNS rather than ANS and perhaps relate to cerebral autoregulatory abnormalities.

It might be interesting to know that these kinds of sensory challenges can cause vagal withdrawal which often occurs in POTS, and also that POTS patients brains do not vasodilate in response to cognitive challenges, infact we vasoconstrict, suggesting that cognitive challenge can actually trigger POTS in some patients. There are also perhaps elevations in dopamine in some patients that might cause impaired sensory experiences.

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