Over Stimulated

[Chrissy]

When I am in social situations where there is more than one conversation going on around me or too much movement, I become over whelmed. I get disoriented, dizzy, headache, unable to think. Just to name a few symptoms. It is hard to explain. This happens alot in restaurants. This weekend I was in one of these situations at a business meeting. After 5 minutes I got this look in my eyes and on my face, my mom said it was as if she was looking at my severely autistic cousin. Then I began to tear up and couldn't stop. Does anyone else get this? Is this a normal dysautonomia response? Which doctor's attention should I bring this to? How do you handle these situations? I appreciate any input. Thanks, Chrissy

[Ashelton80]

Hi Chrissy,

Absolutely relate to being overstimulated 100%! Bright lights, noises, crowds etc. I tried to go to a concert last October and lasted about 10 minutes. It can even happen when my best friend comes over with her two children and my 3 year old are running around the house. My mother says she can tell exactly when I start "fading" and says that my eyes start to glaze over. Not sure what the physiology is behind it other than it's neurological and our nervous systems are how we adapt to pretty much everything. I used to be a very social person, so this aspect of the condition has been extremely hard.

Ashley

[jem15]

Ha, that's funny you mention looking like your cousin with Autism. I used to work with kids with autism and often will tell my friends I feel like one of the kids, that i'm having "sensory issues". Yea, restaurants, malls, grocery stores.. things with either bright lights or weird lighting, noise, and people passing by me can make me more dizzy and lightheaded. In my case, I found out at least part of it is related to visual-vestibular processing issues. I often will close my eyes when people walk past me in a crowd cause I feel unbalanced. And my eyesight is fine, it's just the brain's processing of it. Which may be a dysautonomic thing. But apparently for people with visual and/or vestib issues... lights, sounds, and people passing by you, apparently are common triggers for people. It was on all the questionnaires when I went for therapy and the therapists mentioned it as being common too. Dont'know if thats what youre also experiencing, but figured I'd share, ha, cause I can identify with the feeling .

[friday7]

When I am in social situations where there is more than one conversation going on around me or too much movement, I become over whelmed. I get disoriented, dizzy, headache, unable to think. Just to name a few symptoms. It is hard to explain. This happens alot in restaurants. This weekend I was in one of these situations at a business meeting. After 5 minutes I got this look in my eyes and on my face, my mom said it was as if she was looking at my severely autistic cousin. Then I began to tear up and couldn't stop. Does anyone else get this? Is this a normal dysautonomia response? Which doctor's attention should I bring this to? How do you handle these situations? I appreciate any input. Thanks, Chrissy

Yeah when I was first daignosed I had a lot of trouble with things strobing. Still do but not quite so bad.

Like if I was looking at a pattern that was too noisy it would seem to move, pulsate, Like an optical illusion. Usually that's when I was in someplace with florescent lights..those things are horrible! I was in a partial hospital program once and the lights were so bad I had to were a baseball cap to keep the light out of my eyes or I'd get sick .And if I went driving in the winter. the light of the sky coming through the trees as I drove would make me sick. I also had and still have trouble if I"m sitting in an office that has blinds. I always have to ask someone to close them or I get this strobe light effect. And I hate crowed noisy restaurants so I avoid them. So in short- sensitivity to noise and light . YES.

You might make some mental notes of what effects you and try things to adjust for it. For instance,. If you're in a crowed restaurant with lots of movement around you. Sit on the side of the table where you can face a wall, if it's possible.

If you have to go out for a business meeting is there anyway you can put your input in on the venue. That way you can avoid busy noisy places.

I also notice closing my eyes helps. Of course if you are in a business meeting that's hard to do, but if you just say you have a headache that should be understood.

Some of the things I did were,

Like I said wearing the cap under the florescent lights. I used to wear tinted blue glasses to read..For some reason I heard that helps people with CFS read. And it did ease the strain on my eyes. Also sunglasses to drive helped. Taking frequent breaks helps. If you feel overloaded already, and feel people won't understand you could always tell them you have a bad headache. That way if you need to close your eyes , go put water on your face and take a break they would understand.

[Chrissy]

Ha, that's funny you mention looking like your cousin with Autism. I used to work with kids with autism and often will tell my friends I feel like one of the kids, that i'm having "sensory issues". Yea, restaurants, malls, grocery stores.. things with either bright lights or weird lighting, noise, and people passing by me can make me more dizzy and lightheaded. In my case, I found out at least part of it is related to visual-vestibular processing issues. I often will close my eyes when people walk past me in a crowd cause I feel unbalanced. And my eyesight is fine, it's just the brain's processing of it. Which may be a dysautonomic thing. But apparently for people with visual and/or vestib issues... lights, sounds, and people passing by you, apparently are common triggers for people. It was on all the questionnaires when I went for therapy and the therapists mentioned it as being common too. Dont'know if thats what youre also experiencing, but figured I'd share, ha, cause I can identify with the feeling .

I recently got tested for vestibular issues and found out I have extremely weak vestibular in both ears. My doctor gave me a list of at home rehab exercises to do while I wait to see a rehab specialist, but it made me so sick that my doctor said I'd be wasting my time and money going to rehab. So now what? I guess I'll have to make a follow up with her. Thanks.

[jem15]

Wow, that's a weird response from the doctor. I'm by no means an expert, but based on my experiences, I'll share a couple things. If it was me, I'd definitely re-pursue vestibular rehab, especially since you said you had one test done showing weakness there. Also sometimes vision issues are also present, as in my case, and can make you feel even worse. So they can help weed that out for you. They sent me to a neuro-optometrist who knew about visual-vestibular dysfunction, after they suspected addtl vision issues, and they were right. I'd make sure the therapist you see is a certified vestibular therapist. Otherwise you can get some misinformation, as I did in the past from someone who said they deal with vestib stuff, but wasnt certified. I'm glad I looked into it again, cause it led to whole knew discoveries. There's something they did at the therapy center called the Sensory Organization Test (you can google it) and that tells them if you're having both vestib and/or vision processing issues. I scored zero on both, even though other vestib testing came up fine for me, and that's what led them to know something was wrong with me.

As for the exercises, it is expected that they will make you feel sicker at first and are likely to aggravate your symptoms. Not only will the therapist tell you that, but it even said so on the exercise hand outs I got. So I disagree with your doctor, that just because you got sicker, that therapy would be a waste. I dont believe they can tell that early what your response would be. True sometimes therapy helps and sometimes it doesnt. And depending on the person, sometimes it helps a little, a lot, or not at all. But I think it's worth a shot, and just due to the fact you initially got sicker, doesnt necessarily correlate with whether therapy will work for you or not. Ha, and if anything, I think it's a sign, it was working on the right area. It shows you have issues there if the exercises bother you that much. The thing is the exercises and how you were doing them probably needed to be adjusted.

The exercises are working on the weak areas, and the exercises are taxing or challenging your system and trying to retrain it. So since our systems are off, it'll reproduce symptoms we have normally. The idea is you start slow, at a level where it slighty aggravates things, but doesnt send you over the edge and worse for hours afterward. You should be able to return to your baseline level of symptoms shortly after. But it will depend on you, how much is a good level to push. Eventually, the more you do the exercises, the less symptomatic you should become and/or you should be able to increase the time doing the exercises or the kind of exercises done. It's like regular exercise and if youre really out of shape, then do this intense workout, you'll feel beat down afterward. Doesnt mean you wont respond to exercise though.

Also, another thing to think about. With me, I started with vestibular therapy, for about a month. And because I was so symptomatic, the therapist had to keep me on the most simple exercises, which involved a lot of eye exercises. I wasnt responding too much though, and the therapist felt my vision issues were getting in the way of my vestib progress, and that i should start there first, and then maybe either work back to vestib rehab at some point, or its possible the vision therapy might help the vestib issues, since alot of the activities are overlapping. I'm just recently re-starting vision therapy, so I'll see how it goes, but the vision activities always make me more dizzy, so I know i'm working on the right area. I'll probably have to give the vision therapy 3mo before I can see if it's working or not, they also have me trying prism glasses, to see if that helps as well. Sure, all this therapy may not work, or might only help ease things a little. But I think it's worth it to try, I've wasted time and money trying everything else(drs, meds) so why not this? Especially if there is an identified problem. Usually the response to therapy is based on the cause of the problem, like if you have permanent brain damage, you might not respond. but if it's more "wacky wiring", kinda more dysautonomia, a processing thing, but not necessarily a damaged structure, it seems you have more of a chance of responding to the "re-wiring", or at least that's how it was explained to me.

Anyway, ha, sorry so long to explain all that. But I just get so frustrated when drs think they know everything and discourage a patient from something that can help. And who knows, maybe your doctor is right and is an expert in vestib. rehab. But if your financial resources allow, i think a 2nd opinion is worth it. I've had too many drs say things that were wrong. I even had an ENG done for the dizziness, and was told it was fine. And just recently, i was told there was a problem with my right ear. and now it makes sense cause that side was worse during vestib rehab. anyway, dont let him discourage you, based on your symptoms, it sounds like you might have vestib problems and perhaps vision too, and if therapy has a chance at working for you, I didnt want you to miss out on that. Best of luck to you!

[HopeSprings]

Yes, it is for me as you all have described EXACTLY. I do think it has to do with an inner ear problem. I am wondering if POTS is caused by an inner ear problem since SO many of us have ear/inner ear/vestibular problems. There is some connection between the vestibular system and autonomic nervous system -- too foggy right now to be more coherent about this. I wish someone could look into this connection more. (i can't in my present state).

[ChiariMSwithPOTS]

I have Aspergers, so yes, I get over stimulated. And I also have dizziness issues, so I learned just to tell myself, "If you are dizzy, know that you're safe and you have the ability to know whether you need help or not." And that helps me not panic when I get dizzy. May help you.

[Noreen]

There's something they did at the therapy center called the Sensory Organization Test (you can google it) and that tells them if you're having both vestib and/or vision processing issues. I scored zero on both, even though other vestib testing came up fine for me, and that's what led them to know something was wrong with me.

...they also have me trying prism glasses, to see if that helps as well. Sure, all this therapy may not work, or might only help ease things a little. But I think it's worth it to try,

Best of luck to you!

Hi caterpillar-

I was just researching prism glasses the other day so really appreciate your post. I would love to be able to read a novel but my vision gets blurry and / or I can't follow from line to line. I use to read at least one novel per week so this is a huge issue for me.

Please keep us apprised as to how you do with the prism glasses. I do not know whether the neuro-opthalmologist I see is certified but will check.

tks again for the info

noreen

[jem15]

Hi Noreen,

Just to clarify what i meant with the certification, it's the therapist, usually it falls under PT(physical therapy), who would be certified as a vestibular therapist, not the doctor. Ha, this way your neuro-ophthalmologist doesnt look at you strange if you ask;-) It's possible the doctor may "specialize" or have experience with visual-vestibular disorders, but I'm not aware of a certification for doctors in that area, more of just a sub-specialty due to their interests/experiences.

Also, in regards to the prisms, has your neuro-ophth. identified a cause for your vision symptoms? The cause would obviously affect the treatments used, but I'm learning there are different types of prisms, used for different things. I even had two different kinds I'm experimenting with. One for computer/reading, and one for walking around. With me, I don't have visual acuity issues, I have "good vision", no bluriness, but I have convergence insufficiency and visual processing issues, suppression of eyes, etc.. that cause me to feel more eye symptoms,( fatigue, lightheadedness/dizziness, nausea, headaches, etc) and also effect my depth perception. Apparently the prisms are used with convergence insufficiency, and the neuro-optometrist feels people with vestibular issues benefit, from the prisms getting them to use their peripheral vision more. Oh, and that's the other thing, I found the neuro-optometrist as opposed to ophthalmologist knew more bout vision therapy and prisms. So if you dont feel you're getting anywhere with your current doctor. maybe look into the other specialty.

Lastly, if your dr does try prisms with you, i recommend a place that does 30day exchanges. I had to keep switching the Rxs, trying to find the prism that I tolerate the best. Luckily EyeDRX has been patient with that. I'm almost done trying them out. It seems they just might help a little bit to take the edge off the symptoms. When I increased the Rx to see if I got a more noticeable improvement, they actually felt worse. So it may involve some playing around til you find something that works. I dunno if they'll help much in the end, but even if it helps a tiny bit, might as well try it. It's also the vision therapy, that is the main thing that's supposed to help. And eventually the goal is to wean you off the prisms. So depending on what your issues/symptoms are, that may be something to consider.

[Noreen]

Hi Noreen,

Just to clarify what i meant with the certification, it's the therapist, usually it falls under PT(physical therapy), who would be certified as a vestibular therapist, not the doctor. Ha, this way your neuro-ophthalmologist doesnt look at you strange if you ask;-) It's possible the doctor may "specialize" or have experience with visual-vestibular disorders, but I'm not aware of a certification for doctors in that area, more of just a sub-specialty due to their interests/experiences.

Also, in regards to the prisms, has your neuro-ophth. identified a cause for your vision symptoms? The cause would obviously affect the treatments used, but I'm learning there are different types of prisms, used for different things. I even had two different kinds I'm experimenting with. One for computer/reading, and one for walking around. With me, I don't have visual acuity issues, I have "good vision", no bluriness, but I have convergence insufficiency and visual processing issues, suppression of eyes, etc.. that cause me to feel more eye symptoms,( fatigue, lightheadedness/dizziness, nausea, headaches, etc) and also effect my depth perception. Apparently the prisms are used with convergence insufficiency, and the neuro-optometrist feels people with vestibular issues benefit, from the prisms getting them to use their peripheral vision more. Oh, and that's the other thing, I found the neuro-optometrist as opposed to ophthalmologist knew more bout vision therapy and prisms. So if you dont feel you're getting anywhere with your current doctor. maybe look into the other specialty.

Lastly, if your dr does try prisms with you, i recommend a place that does 30day exchanges. I had to keep switching the Rxs, trying to find the prism that I tolerate the best. Luckily EyeDRX has been patient with that. I'm almost done trying them out. It seems they just might help a little bit to take the edge off the symptoms. When I increased the Rx to see if I got a more noticeable improvement, they actually felt worse. So it may involve some playing around til you find something that works. I dunno if they'll help much in the end, but even if it helps a tiny bit, might as well try it. It's also the vision therapy, that is the main thing that's supposed to help. And eventually the goal is to wean you off the prisms. So depending on what your issues/symptoms are, that may be something to consider.

Hi there-

In theory my vision is corrected to 20/20. However I can't read a book. For a while problems were blamed on a visual field issue - now I just don't have answers. At the last appointment, she replaced a plug and rx'd restatasis. the dry eyes don't explain all my problems however.

Tks a bunch for the info,

noreen

[jem15]

Ok, yea, if your vision is supposed to be "corrected" and you're still having problems, that sounds more like when an optometrist, vision therapy, etc.. can be helpful. They'll look at the functioning of the eyes, not just test for diseases/eye problems, which is the usual job of the ophthalmologist. Often optometrists say patients will come to them after having been told by opthalmologists several times, their eyes are fine. Which, technically, they're right, they may be healthy, but the person can still experience problems. One of the tests the one optometrist did actually views your eyes while reading to see if you skip lines, etc.. I didnt have problems with that, but it sounds like that's an issue for you. Issues like convergence insufficiency (where the eye muscles are weak and dont like to work together) can also cause problems reading and in some cases blurred vision. If you find looking out of one eye, helps a little, that points more to convergence.

Anyway, good luck and hope you find more answers!

[chipper]

I feel that the inner ear dysfunction is caused by dysautonomia. The lack of blood flow to the inner ear. If I am on my feet too much,I will wake in the night with severe vertigo and can lay in only one position for many,many hours and total exhaustion follows for about two or three days. The sensitivity to lights and sounds got better as the POTS improved. This illness has been with me for 30 years with many ups and downs. Blessings to all! Mary

[firewatcher]

Reen,

I developed convergence insufficiency just before my biggest POTS crash in 2007. It has corrected slightly, but I find that wearing +2 reading glasses helps a lot. My left eye just won't move inward by the end of the day. I KNOW that Klonopin has effected my vison, since taking it on an empty stomach will cause my eyes to "lag" in moving: I'll look one way, but my eyeballs won't immediately move in that direction.

I get the overstimulated thing too: can't have a conversation if the TV is on, can't go out to a mall, too many colors will confuse me.....forget florescent lights! My only fix is avoidance.

[nmorgen]

Hi,

I have the same issues with over stimulation. It got to where I couldnt even watch a movie anymore. I dont zone out when this happens. I tend to get anxious and feel like jumping out of my skin. It has gotten a little better over the past year, but I still have problems. Crowds don't really tend to bother me, but bright flashing lights do big time. Maybe you are experiencing a little anxiety in crowds that might be making your POTs symptoms worse.

I also have an inner ear problem. Mine is utricle damage, so no therapy will help me unfotunately. I had a myriad of tests; I don't know the names, but I can describe them. I know I had the sensory organization test, where you stand on a platform that they tilt and then it quickly moves out from nder you. I had the test where you are in a moving chair in the dark and they flash lights at you. I also had a test where you wear a headset that measures your eye movement as they blow hot and cold air in your ears. From all of the tests they said that my rt utricle wasnt functioning, and that they had been seeing this in soldiers affected by ied blasts. I have no idea how my tricle got damaged, maybe it was my car accident. I do find it interesting that a lot f us have vestibular problems. Maybe they'll find the connection one day.

[KristinL]

I can relate to over stimulation. I use to be able to multi-task very well...now I can only focus on one thing at a time. Crowds, too much light, loud noises, the thought of up coming events, etc...I feel like I go into a panic mode. I have been unsuccessful in managing the feelings that come with over stimulation. I try to use self-talk and deep breathing which helps sometimes but not always. I keep coming back here to find suggestions to help with these issues...I hope you find your answers as well