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2Fight

How to explain vertigo, brain fog, over stimulation to Non-Believers

30 posts in this topic

One of the biggest hurdles in trying to explain perceptual disabilities (double vision, vertigo, brain fog, visual disturbance, trouble with sound location) is that they do not understand the context.  I look completely physically fine but have abnormal neurosensory issues affecting my  daily life.  At first, I was frustrated and angry as I explain my disabilities with abnormal sensory issues but folks just laughed it off or asked me whether I was taking street drugs.

 

So, I devised specific exercises that would replicate the disorder so "normal person" would understand the context.  

 

1. Vertigo/Brain Fog

Ask a person to spin in a circle for a minute.  Then, try counting backwards by 3.  They commented that the brain fog and spinning made it difficult to do this exercise.  I tell them that I had 80 attacks a day.  Then, they understood.

 

2. Visual disturbance

Put yourself in a completely dark room where you cannot see anything.  Blind folds will work too.  Then, walk into an extremely bright room.  You will feel immediate over saturation of light.  It is how I feel when I see certain vivid colors/

 

3. Sound Overstimulation

Take 2 iPhones.  On the right track on one iPhone,  listen to Classical music or the Carpenters.  On the left ear on the 2nd iPhone, listen to Metallica or Kanye.  It should overwhelm you. When I am in a crowded room, all the sound will overwhelm me.

 

4. Double vision

Take Google cardboard and on purpose, place on the lenses put it vertical ajar.  It will create an offset between right and left eye causing double vision.  When you try VR, it will induce vertigo immediately.

 

With these 4 exercises, some of my close friends understand my disabilities.  I used to blame folks but they just did not understand the context.  Now, they understand.

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This sounds very interesting I think because us folks that look fine on the outside have horrible trouble explaining to other people what our experience is like. I've even been told by my own family members that it's just in my head and in one way they are exactly right. It's just not the way they mean it. I have real difficulty with this same thing trying to explain to others when I have cognitive issues or when my emotional state is not very controllable. "Just think of something good" or "Don't freak out" doesn't help me at all...it really is uncontrollable. Or when I have really severe executive function problems...I get so overwhelmed and distracted that I couldn't stay on task even if I was trying my very best. I think it's great that you have figured out a way to have others feel what you might be experiencing.

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2Fight -- those are wonderful examples to show family/friends!

 

Now if I could only get people to understand how much effort it is to try to retrain a "broken" muscle, or why certain minor efforts exhaust me.

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2Fight, I liked  all of your exercises, but especially #1 since I had this one,  and that's how it was for me. Except that I also had vertical nystagmus, so everything was also bouncing up and down. So, for me, the exercise would be: "After  you're thru spinning around, hop on 1 foot, because I'm also hemiplegic, and now, count backwards from 3." For me, the problem has always been that there is so much going whacko at the same time, that it's hard to do anything. Thank God, there has been improvement with time and therapy.   Becky     

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Me too Becky when my therapists began to understand that darkness affected me they began to take me into a room with no windows and turn off the lights.  :( I had to try staying upright and in a room with colored circles going around the walls and then they wanted me to stare at a certain place and tell them what color hit that area. I was also made to stand on the half ball balance ball thing in this dark room. I not only felt nauseous but had regressed to like a child by the time I came out each time. It was so bad that my speech therapy that was after would spend their entire hour trying to help me get oriented again instead of our normal things. It was pure trauma as it didn't help me with the dark at all. Neither did Vestibular therapy. I didn't like my physical therapist that month. There were also times when I had to stand towards the wall there and it had a pattern on it. It would be 3D to me like I could walk right through it in evidently I would have so little control over my balance that I would have to tell them to let me turn back around. My eyes did weird things too like in the dark I would see things that looked like fluttery movement of like a whitish material but nothing there. Or I would see a white spot of any kind and think it was my kitty LOL. I have slowly gotten better and better and these things are not as much of a problem unless I am really stressed and then it's a different story.

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2Fight, those are wonderful!  :thumbs up: 

 

(In the past I've printed this out and given it to some people: http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html )

 

Susan :type:

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2Fight, I liked  all of your exercises, but especially #1 since I had this one,  and that's how it was for me. Except that I also had vertical nystagmus, so everything was also bouncing up and down. So, for me, the exercise would be: "After  you're thru spinning around, hop on 1 foot, because I'm also hemiplegic, and now, count backwards from 3." For me, the problem has always been that there is so much going whacko at the same time, that it's hard to do anything. Thank God, there has been improvement with time and therapy.   Becky     

 

Becky1,  I also have vertical nystagmus.  I had the prism glasses prescribed but I still kept on seeing flat objects like my iPhone like warped or concaved.  I also saw ghost images when reading making it really difficult.  The 2nd Neuro-Ophlmalogist told me that the prism was prescribed correctly and that torsional eye movements makes prisms only partially effective.  But, I could not accept this explanation mainly that reading distances should not be effected by torsional movement. So, I had 2 optometrist check by eyes at reading distance and sure enough, it required a 2nd prism for reading distance as I have progressive glasses.  With Neuro-PT, new double prism glasses, and Neurotin, my double vision is almost completely improved after 2.5 years.  It is like Night and Day.  The 2nd Neuro-Ophmalogist is very confident physicians and allows me to come up with my own remedies under her guidance.

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2Fight -- those are wonderful examples to show family/friends!

 

Now if I could only get people to understand how much effort it is to try to retrain a "broken" muscle, or why certain minor efforts exhaust me.

Benni,

 

I also needed to be more emphatic to my stroke and Aneurysm survivors who suffer from one side issues as I did not understand their challenges and issues.  So, I put weights on one leg and ice on my arms numbing it.  It is really hard.  You feel the prickly pain from the numbness and lack of use of the arm.  Walking on one leg is really challenging.  There are so many inspirational stroke victims trying to overcome their disabilities every day.  For "Non-Believers", they just need to understand when you have that bad day where you feel to just roll in bed feeling helpless.  Anyway, back to the fight.

 

Charles

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I can't even begin to share how often I have to explain the same issues, 

I think you summed it up rather nicely. I direct folks to http://vestibular.org/understanding-vestibular-disorder/symptoms and like you said I give them the 'remember the game of spinning around with your head on a baseball baT THEN tring to run?' just thinking about it makes me sick. And like many others, since you can't see it it MUST 'be like that one time when......' I want to grab their faces and yell NO NO NO. One test that I was given to help my vertigo was to stand in a dark room the the turn on a disco style light show and test how long I could last.. Yeah after roughly 5 seconds I began to vomit. Many people only know as 'Dizziness' as coming from the inner ear and as true as that statement is,when one of the sensory elements in broken (ie vision,hearing) everything gets thrown off and that passes your cerebellum & Brainstem. I was blessed with the latter so I have NO guarantee if any of my issues will go away.

 

I feel for you and am in your shoes since 2009 

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Kelli I think you and I had conspiring therapists lol

Om my goodness.. it was HORRIBLE 

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Tracy,  reading your post almost made me nauseus. If I had been asked to do those things, I probably would have thrown up, and then would  have refused to go back. Even now, with 9 yrs. of improvement under my belt, just reading your rehab exercises turns my stomach to  mush.

 

You, too, Kelli. I've been meaning to ask you- How can you drive with vestibular/balance issues? Have you improved that much?

 

Charles- I still have nystagmus in one eye, and if I see a plate, for instance, I can't tell, until I can get closer and personal,whether the object is a plate, or a bowl.

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For me Becky driving was not easy at first but because my body touched more of the seat (grounded) it allowed me to get used to imbalance while driving. I still have issues at night and so I try my best not to drive at night but I have had to before and everything is much blurrier. Signs are hard to read lights are extra bright and look like big stars, flashing lights can be blinding. I never go any place away from my area at night. I can see enough that I can drive ok but my Dr. told me to not have any distractions especially at night and do not drive if I do. I have also been told that in the future it's possible that I may have to get a special test if I start having issues. It is weird because I would sometimes just feel like I wasn't sure which way I was in space like I'm just floating around. One thing my therapists did was have me wear a weighted vest which also acted as a way to ground me and it made imbalance less noticeable I think it's the same concept with driving.

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The only thing like that I suffer from is a brain fog.

If my alarm goes off at 9am and I haven't had enough sleep, it takes me a good hour to gain full consciousness .

I have trouble opening my eyes, doze off and on and my speech is terrible.

I can tell when my brain is ready to be awake, because it truly is like a fog has lifted.

I have a very tough time explaining to people it's not deliberately done. It's just life.

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Those are good suggestions. I do not even understand what it is all about nor predict why one time I react to something and not another. Inconsistency makes me look malingering but that is normal for me.

Hallways and store aisles bother me. Ugh rug patterns! Are they necessary?

I just say I live in a fun house now. 

The floors or walls move and I am tilted and I cling on. Trying to stand on foam makes me feel like too much junk food before a carnival ride.

I remember running dancing moving fast lilthness feelings. I read about motor memory and in dreams I feel walking normal and graceful. Without pain. Those are the things even difficult to describe now.

My burning leg in the background. 

Colors and sound of music is more beautiful now in my world.  This is difficult to describe now. Especially music. I feel physically and becomes emotion. Is this what I was missing by not being a musician? Is this how a deaf man wrote an orchestra? It was more intense after I first had a stroke even.

My feeling as a passenger in a car is like I am going lightspeed on a rollercoaster so I feel sick disoriented.

The things in front of me roll or move so I use a technique my Good PT taught me and whisper to myself as I focus on one focal point like a spinning ballerina "I know that is stable" because I stand up and enter that  distorted mirror section of is it real or reflection because it feels off but looks real.

I am an alien surrounded by people who are not like me. I stop translating because the effort is exhausting futile overwhelming.  They interpret everything wrong I am wrong I am fine. 

But there is something wonderful in this new dimension as beauty is more and I sometimes wish I could share the sunset I am seeing in the 6th dimension on Saturn's rings. I wish I could draw it paint it.

Coloring. others say nice hobby. I wish I could explain how the colors are comforting and how I feel wonderful surrounded by colors. So I take the good with the bad.

 

 

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I can relate to your music thoughts, while noise in general and voices are quickly overwhelming, music calms me. I can feel it reach into me and calm what lies within. Funny part is I'm a rocker and bands like AC/DC, Joan Jett, etc. are what I listen to. How's that for conflicted. LOL

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Oliver Sacks the neurologist wrote a book about music. It is interesting what music is and does in the brain. I believe I need to listen everyday

I like symphony

 

 

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Charles, I've just looked at this thread now, and think it's GREAT!!  :bravo:

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I also just read this post. Very interesting.   

 

Yvonne:bravo:

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On 21/03/2017 at 8:37 AM, scottm said:

I can relate to your music thoughts, while noise in general and voices are quickly overwhelming, music calms me. I can feel it reach into me and calm what lies within. Funny part is I'm a rocker and bands like AC/DC, Joan Jett, etc. are what I listen to. How's that for conflicted. LOL

Being from WA (Bon Scott lived in Fremantle and there is a memorial for him) I have to be an acca dacca fan. But James Blunt is my favourite 

 

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Wow, Janelle, I loved that video!!  I've been hooked on James Blunt every since his song '1973'.

 

Have you ever heard Jake Bugg.....he's a young singer/songwriter (I've heard it mentioned that he's the new Bob Dylan)  His songs 'Lightning Bolt', 'Two Fingers', 'Me & You' are among my favorites! 

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I haven't Linnie but I'm going to search him and let you know!

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On 12/22/2016 at 5:12 PM, becky1 said:

 

You, too, Kelli. I've been meaning to ask you- How can you drive with vestibular/balance issues? Have you improved that much?

 

 

with my glasses I have prisms which KIND OF makes it easier to see plus the Gab I am on. In New Jersey, you only need one eye.. scary.. but I took all the steps like waiting 5 years and going through driving schools. Over time it gets manageable .. makes sense? Like you learn to compensate with hat you have 

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