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Definitely. Bright lights are the worst for me, followed by sound and then smell. Grocery isles that are too cluttered, with tons of items give me horrible vertigo, as do florescent lights. I'm almost blind driving at night unless I'm on a road by myself. Kind of scary really...

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Rama - do you have a link to more info regarding sensory challenges and vagal withdrawal, as well as the CNS theory? Id really like to learn more. also, what herbs have you found best for this particular set of symptoms?

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I think in the grocery store I have issues because you are constantly scanning and reading, scanning and reading... looking up and down, left and right, all while the sounds of registers and noises of "clean up on aisle 8". Just got back from one of the big stores and had a hard time. I got to figure it out. It's like I'm hanging upside down when I'm shopping.

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monstrosity, i have that "feet" problem too. as if my feet don't understand they have to act differently on a different surface. it seems to me that messages from the brain don't come throuhg fast enough.

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Today while shaving my head I noticed my pupils took up majority of my eyes. My right one seemed a bit bigger than the left one. I see why many say they dread getting a haircut.

I also shave my head and have abnormal pupil sizes after a bad episode. Occurs in autoimmune autonomic gangliopathy.

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Today while shaving my head I noticed my pupils took up majority of my eyes. My right one seemed a bit bigger than the left one. I see why many say they dread getting a haircut.

I also shave my head and have abnormal pupil sizes after a bad episode. Occurs in autoimmune autonomic gangliopathy.

I've never heard of that. What is it and how are you tested for it?
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monstrosity, i have that "feet" problem too. as if my feet don't understand they have to act differently on a different surface. it seems to me that messages from the brain don't come throuhg fast enough.

Sorry to say but I'm glad I'm not the only one! I noticed wearing slippers helps and even more so I have some flip flops with an air sole in them that I prefer to wear around the house.
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I so agree with the grocery store problem!!! It's the being on my feet/navigating crowded aisles / bright lights/ too much noise, etc. I just have to put my head down and get exactly what's on the list. It's awful if I have to search for something or make decisions.

I don't entirely understand the mechanism that causes this: I've heard we dysautonomia people have excess epinephrine and norepinephrine. If that's true, and that's what's causing this miserable hyperstimulated state, is there a medication or treatment that can help?

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Today my Chiro adjusted my whole spine. He said be prepared to be "Geeked Out". Yup the rest of the day I felt uncoordinated, brain was foggy, blood pressure was up and down... He said Sensory Overload probably will happen.

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  • 2 weeks later...

Hunh - my eyes do the weird thing (I think this is linked to occasional eye blurring, not sure), but the antibody test from Mayo was negative. But I hear that Ab tests can be negative despite symptoms :^)

I get serious sensory overload in conjunction with spaciness (my #1 symptom) - especially crowds of people (motion is bad, but movies etc are okay for some reason). Airports are terrible (esp if they're boarding the gate next to yours and you're sitting nearby), I have to leave home for class 15 minutes early to miss the inter-class rush, crowded stuff requires me to be led by the hand to get through. Also noise - lots of folks in one room and I fail to filter the sound. Just noise and vision, though - not smell, touch, or taste.

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There are also perhaps elevations in dopamine in some patients that might cause impaired sensory experiences.

I have the same sensory issues. I can not go into Walmart unless I wear sunglasses (makes me look cool) and many times have to wear them in my church. People just look at me funny - but, at least I'm there. I can't take a lot of noise and also have problems with clastaphobia and crowds. I have to sit on the outside of a row and not be trapped inside thinking I can't get up fast enough. I think all of this goes hand in hand with it all. I have problems watching TV sometimes too. And if I'm having a bad potsy day - don't let someone make a irritating noise (like husband decides to play drums on the table) ugh . . .just can't take it. LOL :)

But, as for the quote I just picked up from Rama. I've wondered about too much dopamine. When I got my wrong diagnosis of Parkinsons they increased my dopamine with meds and I got 100 times worse. In fact, so bad they thought I had multiple system atrophy. I've wondered if too much dopamine is a key part of our issues. Some of us are losing our hair and I found an article about too much D2 (one of the dopamines) causing male pattern baldness. It makes me wonder if D2 is playing a part in our POTS too.

Issie

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Fascinating Issie. And many of us are on meds like cymbalta to "help" various symptoms but I believe it boosts dopamine as well. I wonder how many of us with these sensory issues are also on meds that boost D?

Dizzyde

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Depends on the med - Wellbutrin boosts dopamine and norepinephrine, Cymbalta boosts serotonin and norepinephrine, Savella does norepinephrine and serotonin but it is more strongly norepinephrine-affecting than Cymbalta.

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I have problems with lighting, noise and smells every day and worse of course with migraines. Mondays at work after my quiet weekend is sicking for me. Crowds, noise and too much talking causes my to have sensory overload. I start slowing on cognitve functions to the point that I have trouble leaving the area.

This sensory overload is getting much worse. I avoid family gatherings if there will be more than 10 of us. And 10 of us in one location is a task for me. If you throw in one loud person, I am out. I won't even attempt to go to these functions now.

I seriously see merit in living as a hermit in the middle of a quiet secluded area.

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Depends on the med - Wellbutrin boosts dopamine and norepinephrine, Cymbalta boosts serotonin and norepinephrine, Savella does norepinephrine and serotonin but it is more strongly norepinephrine-affecting than Cymbalta.

No wonder SSRI's and SNRI's NONE of them work well for me!!!! Major side effects from all I've tried before - I have high NE levels and all of them affect that - also if there is high Dopamine levels - we may not need more of that - and some research suggest that some may have too high levels of seratonin too. We are all so different - it's hard to figure out these particular hormones - it's mostly trial and error - and more error than anything. And unfortunately - when you mess with our brains and we already have such brain fog issues - it makes it even scarier.

issie

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Yeah - and those three are just the SNRIs. The SSRIs just touch mainly serotonin, but they may have minor affinities for other neurotransmitters depending on the drug.

For me, I was lucky enough to take Wellbutrin (dopamine/norepi), Cymbalta (serotonin/norepi), and Seroquel (serotonin among others). Having those three at separate times made me aware that for my personal neurochemistry norepinephrine really promotes insomnia, bruxism (grinding teeth), and jaw locking, and that serotonin dramatically worsens my palinopsia (eye tracer afterimages). So now I know what to expect when I go on a new psych med depending on what neurotransmitters it touches of those two.

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  • 6 years later...

I knew I couldn’t be the only one to have sensory overload! I have Dysautonomia/Pots and it has been a very difficult road. However, I have several sensory issues and I’m hoping someone else is experiencing the same. I noticed that a lot of people on here are experiencing the hearing sensitivity, which I experience and I will explain. 

Loud noises due sometimes trigger my pots. 

First I have to say, I’m a night owel and I was laying in bed. It was about 1:30 close to 2:00am and I heard heavy foot steps very slow walking in my back yard. Now mind you that my husband was snoring, my TV was on, our windows were closed, and our window AC unit was on, which of course was loud. It was like this person was walking next to my ear. I could hear every movement he made and was able to since were he was in my yard. It was so loud in my ear. 

We have a shed in our back yard and I heard him opening the shed doors. Anyway, I told my husband what I heard and he stated “how did you hear that” I explained it to him and he just looked at me because the windows were closed, window unit on and TV on he felt there was no way I could here someone in the back yard. 

Anyway, this was happening for a good 2 months and yes I never checked because the person wasn’t trying to come in my house and nothing was ever touch in the shed. I woke my husband up a couple of times but he never heard the footsteps but did check around the house. 

Come to find out my husband was keeping an eye out every morning when it came to the shed doors. He noticed the when the shed doors were shut and I heard the person in the back yard. The next morning my husband noticed the shed doors wide open. My husband finally stated he believed me but shocked that I could hear it due to our room being upstairs, TV being on, the window unit being on, and all the windows closed. Plus, our back yard is all sand but yep. I heard this person as if he was walking right next to be.

Well, my sons room was downstairs and he had his window open a little. His bed is right by the window. Well, there is all rock in the front yard and my son heard hard slow foot steps up to his window and they stopped. My son jumped out of bed ran to get us and my husband then look all outside around the house and didn’t see no one. It was the same time that I always heard the footsteps outback. He never came back around and I did inform the neighbors of someone coming around the home. If the person would have come back I definitely would of called the police after approaching my sons window. 

Here is another example! I went to Target at 9:00am in the morning or maybe it was 9:30am. Anyway, I grabbed what I need and I was walking behind a couple of people and I hear a noise. I turned and looked were the noise was coming from and this guy was laying on the ground bleeding from the head and his body was jerking as if he was having a seizure. 

 

I then yelled someone call 911. Of course everyone looked at me like I had to heads. So I took out my phone and call 911 as I was talking to the guy even though I don’t think he could here me. I even yelled for the pharmacist to come help. I couldn’t believe no one heard or even didn’t see this guy. Plus. This happened right in the pharmacy department. Anyway, to make a long story short people were asking me over and over again “ how did you hear this guy” and I just told them I heard him loud as day why didn’t you guys hear him but they stated they didn’t hear him. So I don’t know people just kept staring at me. I had to leave but when I left the paramedics arrived, so he was in good hands. 

Not only do I have the noise sensory but there is another sensory, which is hard to explain. When I go out I’m very alert to my surroundings. I know when someone is negative or positive like there energy. I will walk out of a place knowing what I am feeling in the environment is not good. Seriously, it is crazy! I can feel when  someone is around my house and we’re they are around my house before my dog does. 

Does anyone have this?

 

Thanks!

 

 

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On 3/31/2012 at 11:26 PM, WyomingGal said:

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.

We sound so much alike! I chew gum to help distract from visual problems (dizziness/imbalanced feeling) and to try to distract from my throat problems. I feel better when I focus on just one thing in front of me (like my phone, colouring/writing, and sometimes TV). I got a bit overwhelmed in Walmart before as I was walking and scanning isles up and down - definitely made my symptoms worse. Maybe the lighting made it worse too.

When I first started getting sick, I couldn’t even stand a ceiling fan being on with the lights because it made me so dizzy. All I could see was the shadows of the fan swirling around the room. I actually got my family to turn the fan off. That was before I knew I was sick. 

In general I feel better outside and when I am walking / actively doing something. I feel worse when sitting still - I try to distract myself by pumping my calves and flexing my toes, etc. I can still get overwhelmed even just sitting at a cafe chatting with someone. More comfortable at home for sure. I definitely get anxiety about situations where I am not at home. I may have to try to return to work soon and that gives me anxiety because I will be actively chatting a lot and need to be focussed. I also will either be sitting or standing for longer periods of time. 

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  • 1 year later...

I'm very interested in th ed correlation between the super sensory issue and dysautonomia. I also have hyperacusis and began to experience some crazy symptoms.  I'm not sure if the cause but it is nice to see I am not alone. It has made it very difficult to function.  It is literally causing my nerves in my entire body to make me feel like I am being electrocuted.  I have started keeping cotton in my ears but it only helps a little. I am getting dizzy, confused, nauseous and low vibrations / noises make my body think its moving when its not. Lol. I feel like I am moving to the right.  I had a period of time where i was only getting 39 minutes to an hour sleep due to neighbors. That's when it started getting bad. I don't know what to do to get my autinonuc system to realize everything is ok now and to chill! Lol. Any help / suggestions would be greatly appreciated. 

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@Michellek - that is a very difficult situation. Hyperacusis runs in my family and since my mother, sister and cousin have it I know what it can do to you. I also know overstimulation from POTS, since I suffer from that myself. I usually survive severe bouts of overstimulation from POTS with rest and avoidance of those situations. Hyperacusis is more difficult to handle, since there are currently no hearing aides available for this condition ( to the best of my knowledge ).  Personally I benefit the most from IV fluids to calm down my overactive ANS but I also understand that that is not an option for everyone.  Do you take any meds for dysautonomia? There are several medications that could help with symptoms of dysautonomia, however I do not know any for hyperacusis. Are you seeing a specialist that understands the issue? 

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