Life with AS & SPD from a woman's perspective

Posts tagged ‘alpha+stim+scs’

Brain Red & Raring 2 Go!

ARE YOU TOUCH SENSITIVE?!

EEG

My brain basically has 2 settings: Stop & Go. This is why I see things in “black or white” and have trouble controlling impulsive behavior. In 2009, I had an EEG (A special EEG called an “Absolute QEEG”). I had to sit with electrodes leading into a tightly fitted cap. Let me tell you, it wasn’t for the faint of heart. It is a good thing I am for the most part a tactile freak. I very much enjoy touching a wide variety of things. I enjoy deep pressure, even to be dug into or scraped at. The sensory aspect of autism includes the hyposensitive as well as the hypersensitive. This is why I bodyrock constantly, even in my sleep. I believe it is the hippocampus that isn’t getting enough stimulation. Anyway, the EEG print-out showed a human head (mine) with how my brainwaves reacted while a progressive amount of electricity was delivered through the leads (which I didn’t feel). In the head space were colors. Green is great. It means a calm, well-regulated brain. I had green up to 10Hz. After that, it was red & raring to go through 25 Hz, which surprised and alarmed the doctor performing the procedure. I never achieved the green-zone again. It was mostly red & yellow until the test stopped at 30Hz.

I was told I was in a minority of people who fit into the “ring of fire” category. Their brains never “shut off”. They were shocked to find out I slept normal as a kid & into adulthood. As I say in my personal intro: Not your typical “aspie”.

I had treatment for this, non-medical. It didn’t last due to the co-payments. Neurofeedback was going to be productive, I could feel it, literally. Sometimes I had twinges, other times mild headaches. This was my brain being “retrained” or “rewired”.

I got a unit that only required a 1x purchase and worked sort of like neurofeedback. It’s called an Alpha-Stim and it did stimulate the Alpha waves while calming the obnoxious Beta waves. I’ve written blogs & made videos on Alpha-Stim SCS & EEG, so if you’re interested, read/watch them.

TRT gave me the freedom to hear the world a little more tolerable as it retrained my brain, where sound is interpreted. I have the ear-gear. This lead me to going out in small strides. I have finally made it to socialization, the final frontier, & I wished I hadn’t touched the fucker with a 500 ft. pole.

The only people I’ve met in real life are self-centered people who are constantly “busy”, even when not at work. They say one thing and mean another. Even autistic people do this. One guy wants to be a “friend” but bails when he finds out I won’t be his long-distance lover. Recently, I got tired of trying to make nice. My red brain raced the light and I punched my therapist, because he doesn’t like to hear about anything negative anymore, and I’d just handed him an article about the proposed Medicaid cut awaiting our Gov’s signature. He’s a therapist. If he can’t handle negativity, he needs to retire (he is 65). He then lied about having said this in front of my mom when I called her in to talk about hitting him. I ended the session by walking out. The next day, it was my library acquaintance, admonishing me for telling her I felt bad. I’d told her of engaging in some risky behavior like riding my bike down the middle of the street (dead suburban streets) at Midnight. She had a fit, blaming it all on me, then falsely accusing me of not praying.

The Ring of Fire-Johnny Cash's got nothin' on my noggin!

Allison’s brain is THE RING OF FIRE! Johnny Cash’s got nothin’ on my noggin!

My brain ran red, no pre-meditation involved (what most stupid, smart people don’t understand!!!) and I set off a chain of negative e-mails and online postings that would have made a Marine blush. After 5 years of considering me her “friend” she sent the cops to my house. I denied who I was, saying I was the sister. She couldn’t have spoken to me herself after a few days? It’s not like I harassed her for days on end. I told EVERYONE I had been having trouble adjusting to my new work schedule. Did they have any compassion? I’ll leave that sucker up to you.

If you wish to be a friend to an autistic person, you OWE it to them to sit your ass down and spend a little time doing some research, preferably NOT on AUTISM SPEAKS. Wikipedia is a good place to start. Then, when you have some basic knowledge under your belt, you can visit MAAP Services and Autism Society of America (or your state). It doesn’t have to be all at once. You’re not taking a course, your gaining compassion.

When my mom contracted MAC, a very complex respiratory disease, I did a lot of online reading. I didn’t do it all in one sitting. We both have learned a lot. I don’t like to read for very long, even online, but I love my mother. She is the only one left who cares about me, the whole me, not just the creative me or the humorous me. Those mes will eventually give way to the meltdown me, the SAD me, the sensory-overload-has to withdraw from current activity NOW me. Nobody aside from my parents has ever met the gold standard. Standards are plummeting every day as we turn inward practically fucking our digital devices 24/7. If your heart stopped, your iPod would keep playing after you gave way to cardiac arrest. I suppose there will be an app for that soon, but that isn’t my point. The 24/7 need to be wired to a digital device to the point of exalting these things over human interaction really speaks of childish depravity. I’m so thankful for my desktop, ethernet pc, my 2001 Nokia (emergency use only) cell-phone (no internet, IM, Text) and iPod, which is only on when I walk, and SOFTLY so I can hear traffic, not blow-out my ear drums.

We are social beings, I hate to admit it. I have to be honest, though, going life alone is less painful than going it riddled with the constant shelling that comes from the warmonger mentality of the modern-day human condition. Take it from a 32 year veteran.

We should all have those skull & crossbones warning labels like the ones that come on poison bottles tattooed on our foreheads from the day we are born, yours truly included.

If you still want to put up with someone’s crap, let them use you & make you feel like hurling yourself out the upstairs window on an hourly basis, go for it, but never come back here whining. Put it in a blog, instead.

HAPPY AUTISTIC PRIDE DAY JUNE 18!

The Sum of All Tears: Outcome of Allison’s Therapies

Since I’m no longer feeling well enough to make You Tube videos, I will be blogging over here @ WordPress indefinitely. This post is about the outcomes of all the treatments I underwent in 2009. I just finished telling readers about the successful outcome of Tinnitus Retraining Therapy. My loudness discomfort levels or level of intolerance/hypersensitivity to sound in general improved greatly, into nearly the normal range. My LDL’s had been in the 70 range and are now in the 80′s in each ear. If I didn’t have the phonophobia and misophonia (fear of sound and hatred of sound, respectively) that my audiologist thinks for certain that I possess, then all would be well. I am using the wearable sound generators until July to finish out the full 18 month course of treatment. The reason for this is the same reason your physician would want you to finish out the full course of antibiotics he prescribed for you if you had a serious infection.

Another treatment that I did was neurofeedback. You can see the video I made concerning this on You Tube. I also have neurofeedback videos by other sources in my ASD vlog. People with autism, ADHD and those involved in high-performance sports find neurofeedback helps them calm down and focus. I did not get the chance to benefit from this fully, not due to malpractice, but due to high co-pay. I’ll grant the fact my mom and I were fortunate to find a neurofeedback treatment center who would accept Medicare. They are rare, as we found out, and to be BCIA certified. But to be effective, the patient needs 2-3 treatment sessions per week. One isn’t enough. I knew this was fact, not a ploy for more business, after 8 months of treatment.  So I was lucky…just not lucky enough. I stopped going in early January, 2010.

I have used electrotherapy and was using it in conjunction with neurofeedback. The Alpha-Stim unit, which tamps down stressful Beta waves in the brain, and stimulates the Alpha waves (hence the name), was of use for duration of use, which was 1 hour, but the crippling anxiety which I am constantly under, came back after use. I found myself  “overdosing” on using the unit in the hopes of calming down. The effect of using Alpha-Stim is supposed to be felt anywhere from a couple of hours to a few days, depending on the person, which is a calming effect. I quit using it, too in January, after 8 months.

Finally, weekly therapy proved to be too much for me to process. Even the best of therapists with the best of intentions (which in discovering, was a first for me), cannot grasp the complexity of my situation. I think it goes beyond autism and hyperacusis and perhaps even phobias. Decoding the mystery of me proved to be too painful, and I had a meltdown. My therapist made one error-he got too close to me and stared at me. I had finished screaming and had backed into a corner of the room, crouched on the floor. Temple Grandin knows how animals feel and think. They don’t like to be stared at (although my therapist has an unconventional dog, as he told me that she likes to be stared at. It equates as affection for her, so he assumed I was like his Husky in this way). From what I know of animals, they don’t like to be stared at, it equates with aggression and can incite attack (as my dad taught me when I used to play with my dog and I would stare at him and growl, because I too wanted to be a dog at that age). I have always avoided eye contact on some level, either all together or doing it part-time if I am comfortable with that person. Though comfortable with my therapist, I was in meltdown mode, like a panicked animal, and was, literally, cornered. Instinctively, not premeditated, I punched him in the chest. He had invaded my space, my territory.

After a few days, I was able to explain this to him in an e-mail. He did what other therapists did not, he listened and understood. He accepted my apology. We did not use my having AS as an excuse to box. Instead, we came up with a plan on how to handle similar future situations with either him or others.

Unfortunately, I have felt increasingly worse, to the point I need to stay home and avoid people all together. I have fought so many battles for so many years (14 to be exact), but I have lost the proverbial war. I have no more fight left in me. They want to try a procedure on me called “desensitization therapy”, which involves a very gradual approach to the phobic (feared) objects, in my case, the sounds and eventually adding the sources.

I have tried slow, steady progressive desensitization on myself. I did so last year. I graduated from each goal with the feeling of just tolerating. I achieved no enjoyment nor sense of accomplishment. My state of hyper-vigilance never wavered in severity. In truth, I wanted to be in my room with the windows shut, rocking.

But I did it anyway. To prove to them, my treatment team, my mother, aunt and self, that I wasn’t going to give up, that I could try again, and with all of these treatments, I might just win…for good this time.

I know better now. There is no “win”. There is no “prize”. Not in my case. There is struggle and there is back-slipping in spite of gripping with all of my might. I also know that I cannot live with this knowledge forever. I won’t allow myself to be put through anymore torture despite good intentions on the therapy front.

Honestly, I do not know where I will go from here…or how.

Silent Prayer

Silent Prayer

Taken in field across street from my house in 2002. The cover for my poetry collection “Silent Prayers”.

Update 11/28/11: I have found in life’s journey that the path does not go in a straight line. In geometry, a straight line is the shortest (therefore easiest) method between two points. This is not geometry, this is my life, and as with most lives, it is full of obstacle courses, maybe a little more-so than others. You will find, however, as I was blessed enough to, that things have improved. See further posts (i.e. “autisticaplanet’s ear gear) for testament that the twisting, turning road of spectrum life has it’s good and life-changing moments.

To quote Susan Moreno “You Are Not Alone!”

Alpha-Stim SCS

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