About autisticaplanet

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Welcome to a blog written by an autistic adult woman in her late 30's using words and images to advocate acceptance as well as awareness of those with life-limiting sensory processing disorder and resulting social and behavioral challenges.Thank you for visiting.

Saturday, April 1, 2017

The Onion in the Petunia Patch Chapter Two

Chapter Two: Treatments
I am wearing a tight-fitting skullcap. The things on the skullcap are injected with gel and then wires called leads are connected to them. Before the skullcap can go on, though, I must have my forehead wiped with a gritty cleanser that will allow the leads to get a "cleaner" picture of my brain activity. 

The skullcap has two straps that my mom fastens to my chest. It is now time for my EEG. Unlike EEG's that map out images of the brain, this one will be recording my brain waves. The objective is to find out if there is any disturbance in my brain waves, and if there is, enough to warrant intervention.

If you are touch sensitive, I do not see how you could have this test done. I am not touch sensitive, but I found when the gel was being injected into the little red things, it felt like my scalp was getting the injection. I even asked if they were giving me a shot in my scalp. They assured me I was not getting an injection in my scalp. I went to a neurofeedback specialist in Des Planes certified by the BCIA website. 

This was a blessing, since they were the only ones who accepted Medicare and Medicaid.
 It is not very often I hear the word "yes" when seeking help. 

The first test is hard, as I have to concentrate on keeping my eyes closed for 10 minutes while the machine records my brainwaves. 

As a visual person millions of images pop into my head including the face of the doctor, the special place I have created as directed in my relaxation CD. I force myself to go there but my eyes flutter as I can hear laughter in the hall. I hear the doctor say "eye flutter". 

There are 2 students present. I assume he is teaching them. The images of their faces pop into my head. I worry that my mom cannot read her magazine article as she is in the same room with me and she must be bored. I find my way back to my healing place. More eye-flutter. Finally, part 1 is over. I am told I did great and the lights come on.

My QEEG test results

Test 2 consists of me keeping my eyes open with my head facing forward, but my eyes must stay focused on my feet

Since my focus is not very good, this takes real concentration. My mind is flooded with more imagery that is random and my eyes drift up to look at the computer. 

I can see my brain at work. I suddenly remember to re-position my head as it is now looking up past the computer as I am losing focus yet again and get back to my feet looking straight ahead. Fortunately this test only lasts 5 minutes.

The doctor is very familiar with people of all ages with autism spectrum disorder and says my brainwave activity is hyperactive and irritable. He says it is typical of what they see in ASD individuals. 

There is more than one biofeedback technique to use. 

By the way, 12 hours prior to an EEG you must not have anything in your diet containing sugar or it will throw the test results off. Eat a breakfast rich in protein. I had eggs and drank Lipton Green Tea (hot). Beans also are rich in protein.
Lastly: If you are getting an EEG
-Go with a licensed BCIA specialist.

I had neurofeedback for about 3 weeks, 2 days a week. While I felt some benefit, the full effects were not to be experienced, the copay was too high.

On May 8, 2009, I met with the doctor who did my QEEG (quantitative electroencephalogram) a few weeks ago to get the test results. He told me, in summary, that my brain is in a permanent state of hyper-arousal. 

They even have a name for this amount of extreme over-activity as it displays images of the affected brain in vivid yellow, orange and red-
THE RING OF FIRE. It is also called this because the brain never calms down. I would like to state that I do not have a sleep disorder. The irony isn't lost on me, and I'm extremely grateful. 

In both the absolute and relative images, between 12 hertz and 25 hertz of power is where my brain takes on the all the attributes of a sun-storm.

I also show signs of stress disorder and a degree of attention deficit, though it is not ADD/ADHD. 
ADD/ADHD is caused by the brain working too slow to process new information. In contrast, my brain is working excessively fast to take in much of anything. 

I had to take notes just to make sense of what the doctor was saying. This is a big part of how I learned in a typical classroom.

The rest of the test results confirmed what I have known all my life, despite being labeled a "brat", "retard", or "fraud" by peers or the medical community:

I have the inability to always self-regulate my emotional responses, especially when in sensory overload and/or experiencing acute anxiety.

Neurofeedback was prescribed, but after about 5 sessions, the co-pay proved too expensive. A girl has to eat.

 Going for Tinnitus Retraining Therapy Evaluation

On January 29, 2009, I had the privilege of going to Highland Park to meet Dr. Jill Meltzer, an audiologist who specializes in treating hyperacusis-simply defined as hearing many sounds at an uncomfortably loud level.
We met in Jill's office where she took down some personal history and explained the process to come.
I then went into a sound booth and put on headphones while Dr. Meltzer administered two hearing tests. The first test was a simple hearing test called a "pure tone audio gram". Some of you may have had this done at school. A tone is played either low or high in pitch and low or high in frequency. I was asked to push a button when I heard the sound. I heard even the lowest, quietest tone. I was also asked to repeat a list of words like "eat".
The second part of the test was to determine whether or not I did indeed have hyperacusis. I got to hear the tones again. This time, the tone was played starting at a quiet volume and becoming increasingly louder. When that tone became too loud, I pressed my button again to let them know.
We returned to Jill's office where I was shown the results of both my tests. My hearing was normal. There was no damage to my outer or inner ear. I do have hyperacusis. This is where my brain comes in. My brain is interpreting many of the messages my ear sends to it as too loud. The doctor was encouraged, however. My level of loudness discomfort from part two of this test (or my LDL's) showed in the 70 range. People with really bad hyperacusis can show LDL's in their 50's.
Next, purple goo was injected into my ears. This caused absolutely no discomfort for me. When the goo had molded to the shape of the inside of my ears, my custom wearable sound generators or WSGs could be ordered.
A few weeks later, I returned and was shown by Dr. Meltzer how to use my WSGs. They are flesh-tone and made of hard plastic on the outside. There is also a volume button to adjust the broadband sound generated by both units. A soft, clear plastic tube fits just inside the ear. There is no "static" sound. The sound is a soft "sss". Over the course of a year to 18 months depending on the patient, wearing these devices will retrain the brain to not interpret the message from the ear so loudly. I will gradually be able to tolerate sounds once a problem due to loudness because my LDLs will increase. Normal LDLs are in the 90 range. Testing at the 3 month, 6 month and 1 year levels determined my progress.
My loudness discomfort levels improved from the 70’s into the 80’s.

TRT currently isn't covered by insurance of any kind. This isn't exclusive to North Shore Audio Vestibular Lab. It is a universal law. Unless you can obtain a grant (perhaps through your county), you will need to pay out of pocket. All total, the cost is $3-4000 including consultation, testing, WSGs and check-up's. My (late) mom took out a home equity line of credit (HELOC) on our home before the banks and Wall St. went bust in fall, 2008 to cover the cost of treatment. I realize not too many people badly needing this therapy-autistic or otherwise-could afford this treatment.