Update: Sensory Integration/Vision Therapy
 

Hi all,

I went into this therapy not realizing that what I was doing was different than the standard vision therapy. I pretty much just trusted my physical therapist's recommendation. Had I known, I might have hesitated, because as far as I can tell, there is less science supporting sensory integration therapy as a treatment for PCS. It's costing me hundreds of dollars that my insurance will not cover but I decided to try it anyway. So far, I've seen definite improvements. The first week of he therapy; my depth perception noticibly improved. Maybe about two weeks into it, I felt like MAYBE my dizziness was a smidge better. I finished my 30 days of therapy on Thursday, and I think it was on Tuesday that I realized I was spinning round and round in the pool with my daughter without getting dizzy!!!!! I could have cried I was so so happy! I want to push some boundaries, see what I can do now, but I also don't want to do the wrong thing and set myself back! Right now, I'm at Disney World with my family and I soooooo want to ride the teacups, but I think the better first step is to see if I can watch people on the tea cups! Just 3 months ago, I could not watch my daughter bounce on a trampoline without getting extreme vertigo! If I can find just a traditional playground, I might try swinging on a swing with her and see how that goes. I couldn't even move back and forth gently and slowly on a swing just three months ago either, so that would be a good test. (Don't worry, I won't endanger my daughter! I'll try it without her before I try it with her!)

I do also feel that my light sensitivity to the sun has improved slightly, but my light sensitivity to computer screens and fluorescent lighting seems to be just as bad as before. Still, the dr said that this doesnt tend to start improving until after the therapy is over. I'm anxiously awaiting further results!

Anyway, just wanted to share my results/experience thus far! Keep your fingers crossed fOr me!

P.S.!
 

Just the fact that I'm at Disney World is evIdence of how much I have improved over the last 6 months. At one point, this would have been a nightmare scenario for me! It's still a bit of a challenge, but I'm doing fine with it so far!

Great good news
 

This is really encouraging and I hope it lasts!!! Keep the updates coming.

Poetry?
 

Thanks! I will! Poetrymom, do you write poetry? Or just like it? I am a poet (or was one?) so I'm just curious! I haven't got back on that horse yet!

Oh yes I write!
 

I write a lot, but mostly stuff for school (teacher) but have published poems here and there and work on fiction and memoire writing too. But more sporadically...mostly rhyming poems for children is what I have though our kids here are nearly 17 and 19. I love to do dialogue writing with students when I can work that in the curriculum.

My symptoms have suddenly improved a ton this week and I feel very hopeful, but know, I've been well before only to slide back into that dizzy, tired hole.

Keep on feeling better!!

Me too
 

I've published poems here and there too but am now working on kids books. I'd like to start writing poems again but my eyes need to improve a bit more first!

Check out CBI and ?? Children's Writer
 

CBI (children's book insider) is a great site and they have a montly newsletter about the children's book business -- which is hard, hard, hard to break into. There is also Childrne's Writer and I subsribe to that. Ok I have to go,, I can't type for anything which is part of this whole TBI thing.....ack tired, but keep writing

All for now

JJ

Thanks for the info!
 

I'll definitely check those out!

I found some advantage in using the dictation app that comes with the new Mac (apple?) operating system. It allowed me to get some thoughts down on paper even with my sore brain and eyes!
Great to keep those writing ambitions and dreams alive!

Yippee!
 

I rode with my daughter on the Dumbo ride! It spins around in circles and goes up and down, and I didn't get dizzy at all! I was too chicken to try the teacups, though I was very tempted, but there are three kinds of spinning going on there, and I just thought it would be too much. I didn't want to ruin the rest of my day. At this point, I am calling my sensory integration therapy a success regardless of whether it helps with my light sensitivity issues. I've had this dizziness for six months and it was not getting better with vestibular therapy. It's too soon to say that I'm cured, but after one month of the sensory integration therapy, I've experienced significant results, and according to my dr, it takes time to get the full effect of it, so I'm hopeful for more.

Great about Dumbo! I did 'It's a small world' with my kids.....big headphones, earplugs and dark sunglasses...the crowds did me it at DW

I can't recall if you ever gave more details about that sensory integration therapy. If you are ever motivated or able, it would be great to hear more about what they do!

I'll definitely post more about it when I have time!
 

Right now, we're packing up and heading home. Once I have a minute, I'll give more details. I'm kind of thinking the doctor I'm working with is a genius or something. I'm not sure how many people do what he does, but I would be curious to know, so I'm going to look into that as well. He was extremely thorough in evaluating me and that he customized my treatment plan for me specifically. It's not a one-size-fits-all kind of therapy. It's also used to treat autism and ADD, as well as some other things.

Thanks, it’s always important for us to hear stories of progress. Cognitive function recovered - check; severe vertigo resolved – check!

The biggest source of inspiration you share is the ability to enjoy life! The fact that you were able to enjoy the Dumbo ride with your daughter is huge; that’s what it’s all about. Your last couple of concussions were relatively recent; you have every reason to be optimistic for continued progress in your recovery.

Thanks for your inspirational update.

:grouphug:

Just Wondering
 

I am just curious about all your accidents did you not have any neck or back injuries?My M.D.'s told me I will NEVER be able to ride any rides with my child again because of my injuries.

Yes, but
 

I only ever had mild concussions and neck sprains. Nothing major and no back injuries. Plus, these rides are very tame. They are made to be fine for a two year old to rid. No roller coasters for me! But maybe I'll be able to ride one the next time we are in Disney Land--in six or seven years. I'll definitely be ready for the teacups by then!

Update to my update!
 

I wanted, first of all, to answer questions someone posted earlier, but I was too busy to get to at the time. I also wanted to tell about my doctors appointment today.

So here's a description of my therapy thus far: For 12 days, I went to my doctor's office and went into a dark room with a table that revolved, up around and down. Above me, there was a circular light, maybe 3 or 4 inches in diameter, which I was suppose to watch while lying on the table. The light strobed slowly and was a different color at different times. It started out just magenta on the first day, but on various days, it would change colors during the session--magenta, red, ruby, blue-green, blue, violet. I would lay on the table and look at the light for a half hour, and then break for some vision exercises. The vision exercises included things like follow the twisty turny line or rock around the clock (pointing to the number on the clock at the same time as saying the number). Then I would do a half hour more on the table looking at the light. I did this for twelve days straight, and then, for 18 days at home, I looked at a magenta strobing light for 20 minutes first thing in the morning and 20 minutes right before bed.

Just to be clear, this therapy worked for me in terms of curing me of my dizziness. In terms of my light sensitivity, not so much. I went to my eye doctor today, and he was excited for how much the therapy had worked, but determined I should do further traditional vision therapy to work on my convergence insufficiency. There were several areas that he tested which I have improved greatly, but I have not improved at all in terms of my convergence insufficiency. He could have prescribed me prism glasses, but instead, he suggested I put scotch tape on the inside of my glasses. It's crazy, but it actually really works. I believe they are called nasal occlusions for anyone who wants to google it! I won't wear the scotch tape on my glasses out of the house, but it will be helPful when I'm trying to read or work on the computer. He just figured that I didn't need to spend the money on the prism lenses if the nasal occlusion worked.

It's bi-nasal occlusions
 

I just wanted to clear that up!

Did you feel sick after each therapy session? It makes me feel dizzy just reading about it! Did you go 12 days in a row?
Thanks!

I could of never did that!Kuddos to you!I had bad vertigo from just sitting and moving.I read this and the thought made my stomach ill.How did you do that?

Feeling sick after therapy
 

I did not feel good after the sessions. I'm not going to lie, but it wasn't a huge setback either. I got a migraine about 30 mins after my first therapy session and the rest of the day I was exhausted. Also that first therapy session was very anxiEty inducing. The second day was much better though. I just felt a lot of eye strain and light sensitivity. Day four I had another migraine but I felt it coming on, took Imitrex, and I was fine after that. The next morning I had a noticeable change in my depth perception, Which was a sign that the therapy was working. That made it easier to go on with the therapy, even though it was hard on me. I had headaches day 5 and 6. Day 7 I was overcome with anxiety. (certain colors can have negative emotional effects on people. For whatever reason, blue-green made me nuts! After about day 9, I started to have fewer physical symptoms, but I was an emotional wreck. Once I started home therapy, all of that went away.

I wanted to add one more thing!
 

Anyone within a few hour drive from Columbus, OH, send me a message if you are interested in seeing this doctor for an evaluation. I am a firm believer in his methods and happy to pass on his info to others.

Also, to those of you who think you can't do this kind of therapy, I know that my doctor wouldn't put anyone through this kind of therapy who wasn't ready for it! My vertigo was severe, and I managed to get through it. I couldn't have done it while working though, even though some people apparently do! Brave souls!

At my worst, back in September/October 2012, I felt like the whole world was falling upward with any movement. It was terribly unnerving. It would have been very difficult to do this therapy then, I think. By the time I started the sensory integration therapy, I had improved to the point where I felt dizzy with almost any movement, but my dizziness never went above a 4 on a scale from 1 to 10 with my normal restricted day-to-day activities--like walking, turning around, standing up, etc.--but more unusual activities like watching my daughter on a trampoline or swinging on a swing or just dancing would send my dizziness through the roof. In just a month, I went from that level of dizziness to, I think it's safe to say now, normal. I'm still just amazed by my progress and hopeful that others might benefit from hearing about it.

Forgot to say
 

Oops! Forgot to say . . .
While I was on the table doing the therapy, I also wore headphones softly playing "music" that sounds like it's caught between two radio stations. I know some of you will think that would just be unbearable, but it wasn't that bad. The only thing that sucked is when they would play a really bad song. Even with it that broken up, you can still tell when something sucks!

The research I did on central auditory damage has a simlilar therapy...one ear listens to an audio book and the other ear to some soft music. (two ipods..two earbuds!). There is also an Ipad app for desensitizing sound....Ease or Ease light (99 cent version!). I downloaded it and boy does it challenge! Variations in frequencies, change of tempo, style, etc.

All these things help promote change.....think neuroplasticity!

From my doctor's website:
 

About sensory integration therapy:

Can it be too much stimulation at once?

On the contrary, by stimulating the well-developed sensory systems concurrently with the weaker sensory systems, the Sensory Learning Program provides an overall experience that is often gentler and more easily integrated than singularly focused interventions. Because we do not experience life in isolated modalities, the Sensory Learning Program actually provides a more holistic approach to developmental learning than do individual therapies alone.