My Neurofeedback Journey Has Come To A Close

This week after many weeks of overwhelming anxiety I decided to discontinue my Neurofeedback treatment. I made a promise to myself (and to the clinic) from the onset of my treatment that no matter what, I would complete the first 10 sessions as difficult as it may have been for me. And it was way more difficult than I imagined with lots of setbacks (which has included the worst winter ever!)

Originally they asked me to commit to coming 3 times per week which right away proved to be beyond challenging for me so we decided pretty early on to only schedule 2 sessions per week where some weeks I could only make it to 1. I did what my body and mind allowed me to do and they were more than willing to accommodate me as best they could in order for the treatment to be a success. But as each session finished I was still not seeing any improvement or feeling any different.

Ten was their starting point but truly they were hoping I would complete up to 40 of them. They told me that many clients begin to feel some sort of shift in the way they feel as early on as after 4 sessions with a majority of them feeling that shift sometime after 8 sessions. I got to 4, then to 8 and then to 10 and I felt no change at all and my husband saw no change at all and I began to feel more and more hopeless again, more and more like a failure again and more and more worthless again. And not to mention the guilt of how much money this treatment was costing us.

Like with everything else I have endured along my journey I try my darndest to find that glimmer of hope when a new opportunity or remedy comes my way. I spent a great deal of my time and even with my limited resources and energy I researched Neurofeedback until I felt this too was worth a try. That’s the thing though, I do keep trying and I can always say “at least I tried” no matter how big or small it may seem to others because I have tried a shitload of treatments etc., but I beg the question now; how many ways can someone keep trying before you just give up? Before you just say I can’t do this anymore. What’s the magic number or better yet is there a magic number

Antibiotics: To Take Or Not To Take?

If you thought that depression and anxiety were the only things weighing me down you will be sadly mistaken. A couple (probably more by now but I’ve lost track of time) of years ago I developed a skin disease that I rarely talk about to anyone but it causes me a great deal of pain both mentally and physically. I have seen several doctors and dermatologists regarding it and once it was finally properly diagnosed a treatment plan was able to be put into place.

The treatment plan was always the same each time which included a course of antibiotics. I’ve tried several of them by now and each one has worked better than the next but the problem is that everytime I finish the antibiotics it just comes right back.

In September I began seeing a new doctor with a new set of eyes and a new course of antibiotics along with an action plan to be discussed further upon my return a few months later which was at the beginning of December. By this time I had now been taking a regular dose of antibiotics for 3 months and although it was keeping the flare ups and pain to a minimum it wasn’t enough so she decided to refer me to another specialist. This specialist however is someone who deals directly with this type of inflammatory skin disease and apparently the only one of its kind in Ontario and had recently opened her own clinic in one of the downtown hospitals.

Since I began suffering with depression my immune system has been completely out of whack and has caused me to suffer a great deal of inflammation throughout my body and because this skin disease is considered an inflammatory one there could very well be a correlation between the two and I was open to the idea of meeting with yet another doctor if it meant finding a treatment plan that would hopefully not involve a lifetime of antibiotics. The doctor told me that I should continue taking the medicine until my appointment with the new specialist and how naive was I to think this appointment would take place sooner rather than later.

Well this week was exactly 2 months since I last saw the doctor and now 5 months of taking an antibiotic daily and finally I received a call in regards to seeing the new specialist. Would you like to guess when that appointment was set for, keeping in mind it has already been two months since the referral was made? Okay, I hate guessing games too so I will just tell you; it was set for the last week of June (the day after my birthday for anyone who would like to continue the guessing game!) which by then will mean I would be taking the same dose of antibiotics for almost 10 months.

I won’t lie when I tell you that the phone call sent me on a downward spiral this week and my first reaction was to stop taking the antibiotics because no good can come from taking it for 10 months straight, right?. Well in less than 48 hours of me stopping the medication guess what happened? Yup, you guessed right (see you are good at guessing games) because the symptoms returned with a vengeance and the pain is excruciating to say the least. So now what? Do I live with the constant pain for the next 4.5 months which can be quite crippling or do I risk the development of more toxicity in my body or even the possibility of a future antibiotic resistance? Oh and ya I almost forgot to mention that things aren’t going so well with the whole Neurofeedback training (a topic for another day) and upon speaking with them this week regarding some of my concerns they too had concerns with the effect that a prolonged use of antibiotics could be having on my treatment. FML

Neurofeedback Session #1: Will Practice Really Make Perfect?

Today was my first scheduled Neurofeedback session which arrived with a great deal of anticipation, anxiety and rumination as I have spent the past 2 weeks since I was last there talking myself out of doing it for fear that it would result in another failed attempt at recovery and further hopelessness. So it should be of no surprise to you that as Rich drove me to my appointment this morning he needed to pull the car over while I was in the midst of having a panic attack that caused me to throw up at the side of the road.

Feeling a shred of relief we eventually arrived (only a bit late) at the clinic still feeling anxious, dizzy, overwhelmed and weak (which is probably not the best way to start off) but I sat down in the waiting area where I was given a glass of water to drink and Rich went and got me a bagel from Tim Hortons while I attempted to calm myself down. Once he got back we were escorted into one of their “training” rooms and we were briefed on what the session would look like (Rich was allowed to stay and observe the entire session, which he thought was really neat!).

It all sounded pretty darn cool even if I only understood half of what the technician was telling us (he has been patiently walking me through this process from my first phone conversation we had about a month ago). But even if much of the information we were receiving was a little bit too “sciency” for me there is simply no denying from watching the expressions on the technician’s face and listening to the enthusiasm and passion in his voice that he truly believes in this concept and that he honestly cares about my wellbeing and that he sincerely loves the work that he does. That has to give anyone hope, right?

This first session was purely a learning curve, figuring out what may work for me and what may not which included so many variables, some of which are very technical right down to the musical overtures playing as my brain is being rewarded. It may even take a few sessions to play around with several of these concepts like to what degree the program is set at in order to challenge my brain, but from just one session I definitely knew what didn’t work for me, including the musical selection, so next session I will try more calming sounds of a harp!

I really don’t know how to truly explain how Neurofeedback actually works because I am honestly still learning and figuring out how the hell it can work or better yet will it work for me but to put it in layman’s terms one might compare it to the “high” we get from playing the slots in Vegas or our favorite video game from the comfort of our couch. The slot machines are programmed to reward you a certain percentage in order to keep you excited and make you want to continue playing with its positive reinforcements. Same is true in most video games where each time you reach a new level the bells and whistles go off which will also keep you excited and wanting to continue playing.

Essentially when my brain is being rewarded with those same auditory and visual rewards as that of the slots and video games it’s getting positive reinforcement and retraining your brainwave patterns in an irrefutable manner. I’m still very unsure about whether or not continuing with this treatment is doable right now after the toll its taken on me both physically and mentally these last couple of weeks but either way it looks like I could achieve an honorary Master’s degree in Psychology and my PHD in Neuroscience if nothing else!

Neurofeedback Results; My Brain is Stuck & Exhausted

It’s been just over a week since I went for my Neurofeedback Assessment and had scheduled my follow up appointment for today.  It gave me an entire week to talk myself out of going to the appointment, ruminating and incessantly telling myself “what’s the point?”  In my mind this is just going to be another failed attempt at my recovery, another reason for self-doubt and another cause to lose more hope.  But the problem was that I had scheduled the appointment specifically around my husband’s work schedule so that he could come with me which basically meant that there was no turning back.

Upon arriving at the clinic we met with one of the resident psychologists in a room with a very large tv screen on the wall that had larger than life pictures of my brain patterns on it.  He first began by presenting us with a great deal of clinical psychological and neuroscience mumble jumble information which too was displayed on the tv screen. Some of the information brought back memories of psychology 101 in University, but much of it went way over my head.  Once he switched focus to the screens which centered on my own personal results and were clearly labeled (for us regular folk) did it begin to sink in.

The results essentially showed that my brain is stuck and exhausted!  I could have told you that but probably not in such clinical terms! My “z-scores” (google it, I’m too exhausted to even try to explain properly) which indicates how many “standard deviations” an element is from the mean showed to be far greater than the norm in every category (too many categories to list).  They could also see from my brain patterns several reasons why traditional treatment with anti-depressants and anti-anxiety medications have not been successful.

All of the results in their eyes were a “win-win” for potential success using Neurofeedback training to help with my recovery.  As they had mentioned last week to me they would like to start with 10 sessions and then re-evaluate my progress with 2 additional brain scans and compare them to the original results to see how I am doing in a clinical sense at that point.  They originally felt 2 sessions a week would be okay but upon calculation of the results they would prefer I try and start with 3 a week instead (which is very overwhelming).

Of course having my husband with me today meant that these appointments were to be on the calendar before leaving the clinic because my overwhelming hesitation and lack of decision making skills he saw on my face would have resulted in me walking out of there ruminating and incessantly telling myself “what’s the point?” right through to the New Year.  But instead, as of right now, Saturday January 5, 2019 has officially become my new “New Year’s Day”.

My Brain Overload; Next Steps With Neurofeedback

I hear from others all the time how brave I am, how courageous I am or how strong I am as I continue to fight my way back to who I used to be but the thing is (as I am sure you can probably predict what I am about to say by now) I don’t feel any of those things and with each passing day or each new roadblock I feel like it is just a losing battle.  It has been a very emotional, confusing and extremely exhausting week thus far and my brain is in complete overload which has begun to spill over into my physical well-being too.

As I mentioned in my last blog (Dr. Phil Update; 12.9.18) I feel like I’ve been let down at this point by the Healthcare System in Ontario and the resources available to someone like myself who is suffering with a treatment resistant major depressive & severe anxiety disorder.  Being labeled “treatment resistant” in Ontario I have recently (and sadly) discovered that if an antidepressant pill can’t “fix” me or if I am no longer willing to risk my physical well-being from the dreadful and often times frightening side effects I endured for two and a half years (with no mental relief) then therefore I should no longer be treated by our Healthcare System (apparently not even for safety purposes), one that every Ontario citizen has the lawful right to.

So instead as you know I have had to take desperate steps toward finding alternative treatments that are not covered by our government which of course now comes with an entirely new set of emotions and after weeks, if not months of research I am beginning that next chapter in my journey as I mentioned the other day as well, feeling anything but brave, courageous or strong.

On Monday, I met with a Neurofeedback specialist, along with my husband to learn more about the treatment, what exactly was involved in it and if it was even something I could try.  This treatment has intrigued me for quite a while now and even though my negative inner self-talking shithead voice tells me “don’t waste your time or your money because you’re a failure, your helpless, your hopeless and most definitely worthless” I was encouraged to learn more anyway.

For those of you who don’t know “Neurofeedback is an evidence-based treatment to help regulate electrical brainwave activity to reduce the severity of symptoms.”  Neurofeedback actually dates back to the 1960’s and has proven results for improving symptoms in both adults and children suffering with ADHD, Anxiety, Depression, Bipolar, OCD, Epilepsy, Autism, Strokes and much more including chronic pain associated with Migraines and Fibromyalgia.

“Neurofeedback gives the subject information about their brainwave patterns.  Electrodes attached to the surface of the head (non-invasively) are used to record and analyze brainwave activity in real-time.  As the Neurofeedback training occurs, the brain is rewarded with visual and audio feedback when it displays optimal functioning. The brain learns to grow, adapt and improve the flexibility of its processing.  Over time, the client learns what it feels like to be calm, focused, relaxed and alert and eventually learns to regulate their brainwave patterns easier to match the demands of many different situations.” (info from Neuropotential Clinic pamphlet)

Okay so that’s probably enough of a Science/Psychology lesson for today.  While meeting with a Psychologist on Monday I was asked some overall questions relative to my situation and how they could help me.  Little did I know how much of a brain overload I was in because I spent a good part of the hour crying as I talked about some very sensitive topics.  And as with anything in life there are no guarantees, they listened intently to my story but at no point in time did they make me any guarantees that this is the treatment that will finally push my recovery into full swing.  They did however ensure me that they have several other treatments they can try in the future though.

With the information we received we then decided to proceed to the next step which was to come back for a complete assessment with the Clinical Psychologist who oversees all treatments (well my husband by this point made the decision because had I been left to decide, that same negative inner self-talking shithead voice would have overpowered me).  So I met with them today for an hour and a half, going through my entire history as he made notes as to what the focus of my treatment should be. I then was hooked up to the EEG machine where I was asked to first sit still for 10 minutes with my eyes closed, then another 10 minutes with my eyes open while focusing on one object or focal point (that was not an easy task) as they recorded my brain patterns.  This is in order for them to then sit down and examine the results, comparing my brain to a healthy 47 year old female brain (I’m not sure why they kept needing to know if I’m right or left handed??) and determine a treatment plan.

They recommend about 40 sessions 2 to 3 times per week and will keep me involved every step of the way and consult with my own therapist when needed as well.  If after about 8 to 10 treatments they determine through a re-evaluation that it is not working for me then treatment will be seized immediately and possibly try something else.  So for now I will await the results and treatment plan next week and go from there. I will be sure to keep you posted, even though you may be busy sunbathing on the beach somewhere in Jamaica or Mexico by then.

%d bloggers like this: