October 5th, 2015 felt like a monumental day for me, like things may never be the same. The Bright Eyes song "First Day of My Life" played in my head as I felt the new beginning envelop me.
For the first time my excuse for not posting about something as its happening isn't because I didn't feel well enough to write, its that I wanted to enjoy feeling good. Also I didn't want to get too excited about a treatment after only one session, it could easily be a one time thing, right?
Now after a 4th session I feel like I can share what has brought on this new chapter of healing, Neurofeedback. Neurofeedback (and I apologize if I'm spelling that wrong) is a therapy that they use for all sorts of things; anxiety, ADHD, depression, addictions, PTSD, etc. and because of the last one they often use in it the military. I came across Neurofeedback by reading some article that lead me to another article that lead me to an article about Neurofeedback. About a half an hour after I had been reading about it my mom came in my room and said "have you heard of Neurofeedback?" apparently she has a friend who had her son do the treatments and it really helped his depression. As I started to tell mom I had just been looking into it my dad walks in and asks the same thing! Coincidence? I think not!
What I had gathered from my reading is that they use and EEG (a machine that uses electrodes placed on your head to see brain activity) to map out what your brain is doing and then using some sort of stimulation redirect/retrain your brain. For some reason even though I didn't really get how it worked it just seem to fit. I can't take medication because of my metabolism disorder and I always felt like using a medication was just a band-aide for a deeper problem. The brain is the epicenter of your entire being, nothing happens without it first starting in your brain. You don't feel the pain of a broken arm until your brain tells you to, you don't sweat until your brain tells you to, you don't pass out without that message starting in your brain. With that logic I thought, something is wrong in my brain and what if we could start there instead of skirting around the issue?
We tried to get into the select few places near by that offered Neurofeedback and eventually ended up at a place called Suncrest, which is a counseling center. Let us keep in mind I have been bed ridden since February so almost 9 months, and had only been in a car once in that entire time period. So even though Suncrest is about 10 mins away it was a huge worry for me to be able to get there at all. I had a Priesthood blessing and through some divine help I was able to make it there without passing out. Granted it was difficult but I got there. When we got into the room I couldn't really talk and was shaking but still awake. The therapist said she had been trying to call my mom yesterday so she would know what my story was and how she could help best but my mom had lost her phone or something. As dad started to explain that I have POTS her eyes widened and she said "my daughter has POTS". If you have a bizarre chronic illness you know how rarely people know what your condition is let alone have a really personal connection to it. Nuerofeedback is not exactly famous for working with POTS patients so to hear that this therapist that we just "coincidently" got in with knows what POTS is, has a daughter with it and has treated another person with it is really a miracle. She did the brain mapping (if you are googling Nuerofeedback you can add the term "brain mapping" and it may help) and was surprise to she that I had little to no anxiety lighting up. I attributed that to meditation (thanks Stop, Breath, Think app;). We also learned that my brain is just firing off way to much, and my fight or flight response is out of control (which is usually followed by passing out) and was off the chart they have for normal brains. The therapist said she couldn't cure the POTS but she may be able to help with the symptoms. We headed home and I keep feeling hope and peace all rolled into one. Usually I'm more of a pessimist about treatment plans, better to expect nothing and be surprised if I'm wrong, right? But this time when I started to think that way I just couldn't convince myself not to feel hope.
October 5th: Dad started a new job so it was just mom and I going in to my first treatment appointment. My therapist put on the "thinking cap" (a cap with all the electrodes placed in it) and gave me some ear buds to put in. All that I had to do for the treatment was listen to these weird noises, its not music and its not exactly beeps but a bunch of what seem to be random noises. But there not random, they are set up to catered to exactly what I need and for some reason this brings the brain activity to the correct place. Like leading a camel to water, my brain drank it up it had been deprived for my entire life. About 5 minutes in I began to cry. I was finally okay. It felt like what I would expect a sedative to do but have actually experienced. I went from flushed, shaky, nauseous, and passing out to feeling...normal? I think thats what I was feeling. Normal. Not having to talk myself through every moment of my life. Not having to block out every noise so I could focus on lowering my racing heart rate. It was the biggest sigh of relief I've ever taken.
Since then I've had 4 treatments and I'm going in for my 5th tomorrow. Yesterday after a session I even went on a drive with mom, for fun! Not only that I was able to shower on the same day, even though I had already done A LOT, well by my standards anyway. I'm not the only one to notice either, my parents have noticed a difference and my Psychical Therapist who comes out to our house has notice a HUGE improvement in what I can do and how long I can stand.
This is it guys. It may not cure everything, but all I'm asking for is being able to walk around the house and maybe eventually work out. I'm feeling really hopeful and excited! We even got a new wheelchair that leans back which makes getting to the appointments easier but hopefully I won't need it at some point:)
