Debilitating, intermittent "episodes" of disorientation & brain fog

Hi everyone,

First of all, I apologize for the novel, but I feel everything below is important to share.

I'd like to provide everyone an update here since many have asked. I apologize for being "off the grid;" I haven't been active on here for over a year for the simple reason of avoiding the angst & depression this condition caused - and still does cause - me at times since I am still experiencing these symptoms almost daily. I understand that avoiding situations can lower one's tolerance for them and can in turn exacerbate things, hence why I'm re-visiting now since I think I've grown in this capacity and can stare it in the face if I'd like to. By the same token, I choose not to under certain circumstances since I know I will spiral into one of these episodes. This is one method of coping with the condition, just how people who are lactose intolerant avoid drinking milk because they know it will negatively affect them. 

There are, of course, times where I have to go face-to-face with these triggers against my will. An example is my career in the beverage industry and occasionally working trade shows with bright lights and conversing with people face-to-face. I work remotely - mostly from home inside of my bedroom - for a vast majority of my job and am very fortunate to be employed full-time by a beverage company with an array of benefits in this sort of position. It is an ideal work environment and situation for my condition, however it does get very lonely at times as one can imagine. I've had to pass up great career opportunities simply due to the fact that I couldn't imagine working in an office setting where a plethora of episodic triggers are constantly knocking at my door. I.e. bright fluorescent lighting, working at night with this bright lighting, constant interpersonal communication etc.

As of January 2017, it has been almost nine full years living with this debilitating condition. To be frank, nothing has improved except for my understanding: the realization that this condition could, and I assume is, permanent and ipso facto teaching myself coping methods such as the aforementioned. Lack of sleep and alcohol use - specifically the day[s] after consuming - definitely exacerbate things. I've tried a cocktail of meds prescribed by neuros & physicians since my first post on this forum, from tricyclic antidepressants, migraine meds, various anticonvulsants and many more, all to no avail. Per one neurologist's request, who, by the way, was a bit more "homeopathic" in her treatments, I took high dosages of Vitamin B2 (riboflavin), Magnesium oxide, and also Petadolex (butterbur) together...all to no avail. I've also dabbled in psychadelics, specifically psilocybin and LSD, since my first post in 2013 in efforts to try and treat/cure this thing and also shed some introspective light on the problem that I wouldn't normally be able to do in a completely sober state. Though these were fun, exciting and introspective drugs, they weren't of much help when it came to this mysterious condition. 

You can see that this condition is still a major burden on my everyday well-being and most certainly affects my mood, confidence, energy, social life, and pretty much everything else I do. I know what I'm about to share next is very unhealthy, but there is oftentimes that very pessimistic inner voice that murmurs, "What's the point in doing A or B? What's the point in eating healthy? What's the point in exercising...if I'm going to feel this way forever, regardless of what I do for myself and my health?" Sad, I know, but true. Hopefully not true, but very possible.

So now what? Although I do bring myself down at times (well, the condition is bringing me down), and still constantly battle this awful, mysterious condition, I haven't given up entirely. I certainly have lost all hope at various times that can last for weeks up to several months, but I normally climb out of those holes and find myself looking for answers and treatments, such as right now and my dabbling in nootropics, but the episodes thus far still remain. I've also tried cleanse kits coupled with uber healthy diets and very regular exercise, but the episodes remained. Another example of this is back in July 2016 when I quit all prescription drugs I had been taking for years (various ADD/ADHD meds and antidepressants, mostly Sertraline) in an attempt to go "all-naturale" and see if that helped, but the episodes still remained. I am still prescription drug free which in my opinion opens the door for other treatments such as nootropics, supplements and any other meds that could treat this condition without having a foundation of other meds to build upon. The first medication that was ever prescribed to me was Ritalin and that was in KINDERGARTEN...KINDERGARTEN! I still lightheartedly ridicule my parents for allowing such a thing to happen at such a young age. Too young!

As I mentioned above, the current phase of attempting to solve this inexplicable medical conundrum consists of nootropics. Haven't really found any relief yet, but I'm just scratching the surface. I've noticed in the past that I could operate normally for a longer period of time without an episode while on Concerta, but the drawbacks for me significantly outweighed the benefits (same with the other 8+ ADD/ADHD meds I've tried). I've read that many nootropics and combinations of nootropics (combinations having the moniker of stack) carry with them results similar to those of presribed ADD meds but without the brutal side effects.

I will continue to update this forum whenever a new treatment is X'ed out, any changes in my condition surface (frequency, magnitude, triggers, symptoms etc.) and/or anything else worthy should be shared. I'm looking forward to continually working with everyone on this, including those I am having individual conversations with.

Out of the 10+ doctors I've seen for these episodes, one neurologist stood out amongst them all with the hopeful statement I'm about to share. He was the most insightful, thoughtful doctor and he really "got me" and what I was describing. Some doctors look at me like I'm crazy but this guy understood. It went something like this, "I believe what you are experiencing is real and troublesome, and I don't think you are the only one out there living with this. There could be hundreds, maybe thousands more who are suffering from the same issue, but we just don't have enough research on it. Medicine hasn't shed enough, if any, light on this nor have we really looked into it yet. There are too few people who have it right now or who have stepped up to voice their concerns with it. There's no term for this 'condition,' but there could be in the future."

-Shaun

My neurologist gave me a s verbal test and from that determined I suffer from sleep apnea. I then had my primary care physician approve for me to have a sleep study (overnight with probes) and it was definitely determined I suffered for heavy snoring/sleep apnea...... during sleep apnea I had periods of not breathing (lack of oxygen) during sleep... as stated over time....lack of oxygen can be debilitating to your brain and can cause neurons not to fire and other issues..... this was told to me by my neurologist

Dear Pageside,

I'm at a loss for words right now as I finish scrolling through this forum post and the comments therewith. I have struggled with the same exact side effects which you and others have described for about two years now. While, I, like many (including you), would wish to read the last comment mentioning how one found some cure and are living life back to normal now, I have to say that this post and the comments therewith have given me so much hope. It's really nice to know that others feel the same way that I do - I'm not crazy!

This is a battle y'all, there's no doubt about it. But, I believe that we, as humans, can overcome so much in this life if we learn to face our battles head on. I work at Home Depot, which is not the easiest job when it comes to experiencing these symptoms, yet I have learned to deal with them, making them easier to cope with as I am learning to become content. I will never say that I'm used to the feeling, because it's so odd and disorienting, but I choose not to allow this barrier to steal my joy in this precious, unqiue life that I have.

When I have these episodes, I feel like I'm stuck in a transition towards something. Almost as if I were about to pass out (not that I'm neccesarily dizzy), but simply the feeling that something is about to happen because you feel so odd that it almost makes sense for something to happen because this isn't normal.

Anyways, thanks so much to you and everyone else who has contributed to this post! We all can fight together!

This almost exactly describes what I am dealing with. Are you still experiencing this?

Hi, I'm 16 and I'v had episodes almoslt identical to these from a different thing that triggers it. Usually it comes from focusing slightly too long on a visual that repeats or a sound that repeats. I was just using FL studio [a music software] and as I created a beat I lost all focus and as if my brain went out of sync I went into a state of complete disorientation, brain fog, surrealness, lack of motive, similar to a nightmare where everything is going at half speed, I could not complete any task for around 5 minutes after the episode. This has occured before but I put it down to lack of sleep and exhaustion, however when this happened today I was awake and had energy. 

I haven't seen a medical professional for this, nor have I ever been diagnosed with dislexia or autism. I do know that my parents both suffered from mental conditions- Mother- dislexia- Father- schitzophrenia [alledgedly]. 

This is starting to worry me and I am posting to tell you that there are others suffereing from this odd episode if you will.