Treatments and Accomodations
04.13.2022 3Hi everyone! I thought I'd use today's post to document the treatments I'm currently pursuing and which accomodations I've found to be the most effective. If you're suffering from a condition similar to mine, hopefully you'll find this post useful.
Past Treatments
I've tried way too many treatments to list here. I mentioned many of them in the posts discussing my story. I can't say I saw many significant successes. Visual therapy improved my depth perception (which was pretty terrible before this began, to be fair) and CognitiveFX slightly helped my concentration.
I do think that some of the medications I was taking (specifically Emoxypine and Bacopa Monnieri) might have been part of the reason why my visual acuity increased and the dissociative blurriness faded. Lamictal helped with my anxiety but left me feeling dull and depressed, and might have worsened my visual snow. I tried many other supplements as well and didn't see any noticeable results.
Current Treatments
When I first went on medical leave, I overwhelmed myself and my calendar with medical treatments and specialist appointments. While finding a good team was important, I realized that traveling every week to seek therapies from multiple specialists was not sustainable. I've narrowed down my treatment regimen and I'm undergoing just a few forms of therapy, all local to me.
Firstly, I'm under the wing of an experienced neuro-optometrist who has prescibed me a pair of lenses which are specialized to manipulate my peripheral vision in a way that leaves me feeling less overwhelmed. Over time, the goal is to keep adjusting the lenses in order to nudge the way my brain percieves the world back to 'normal.' I was skeptical at first, but I've found that I can't go without my glasses anymore, and they made navigating indoors (and even outdoors) far more easy.
Secondly, I see a local functional neurologist three times a week who has me cycling a set of therapies geared at TBI recovery. The doctor's treatments cover a wide range of issues, including vision and vestibular deficits, sympathetic nervous system hyperactivity, and concussion-related focus and concentration issues. Below are some of the central therapies I'm undergoing:
- TMS. Transcranial magnetic stimulation involves projecting an electromagnetic field at a certain frequency on a specific part of the brain. This is still a relatively new practice and research is rapidly expanding, but recent studies have shown its potential in treatment of depression, anxiety, and even more nuanced psychological conditions such as OCD or dissociative disorders.
- Neurofeedback. This involves the use of an EEG to quantify the 'efficiency' of certain neural pathways, and an activity which uses this information to help guide the brain towards optimal behavior. In my case, the EEG is read by a computer program which 'scores' my neural activity while I watch TV, and the screen will become dimmer or brighter based on it. From what I understand, the brain is incentivized to keep the screen bright as blue light releases dopamine, so without any conscious effort I'm essentially retraining my brain.
- Sensory integration. This involves performing certain activities or movements to the beat of a metronome. While it might sound simple, I found this therapy to be very challenging at first. I've also seen consistent improvement in my abilities overtime.
- Vestibular training. My doctor owns an advanced piece of equipment featuring a chair that can rotate freely on any axis. We use this to train my vestibular ocular reflex (VOR) through a set of exercises.
This wasn't something I documented on my blog previously, but I had a great deal of trouble sleeping after my injury; although I could fall alseep fine, I'd have a lot of trouble staying asleep and would end up waking up many times during the night. I'm now mostly back to my old healthy sleeping habits, and I attribute this to my functional neurologist's therapies.
On another note, I'm currently taking the following medications:
- Klonopin (0.5 mg). I can't recommend taking benzodiazepines regularly to everyone, but the small dose I'm taking has helped my anxiety and physical symptoms a great deal. It doesn't have an effect on the cognitive or visual symptoms, but does help overstimulation and feelings of overwhelm enough to make it worth it to me.
- Fluoxetine (1 mg). I had bad experiences trying Lexapro and Zoloft at fully prescribed doses, but after some research I found that fluoxetine (Prozac) has a potent calming effect even at small fractions of normally prescribed doses. I take roughly 1 mg per day and I've definitely noticed small improvements in my mood and stress tolerance.
- Omega-3 Fish Oil. This should be in your supplement stack no matter your health. I haven't felt benefits I can attribute directly to this but plentiful research points to the benefits of omega-3s for your brain and body.
- Magnesium. I mix a powder of magnesium citrate into a glass of lemon water every morning. It seems to lessen the feelings of head pressure I get from visual oversimulation.
- Melatonin. I take 3-6 mg every night before bed. Melatonin has done a wonderful job getting my sleep schedule back on track.
- Exercise. Whether it be walking, running, lifting, or yoga, exercise is essential to maintaining a positive attitude and to avoid falling into a slump. It's also perhaps the most effective tool in treating brain injuries. I make an effort to exercise every day, no matter the medium, and always notice a drop-off in my mood on days where I skip my workout.
- Meditation. Don't get the wrong idea, meditation will not miraculously cure a neurological disorder or injury, especially of my severity. Meditation also doesn't need to be sitting with your legs crossed and hands curled upwards, reaching some kind of enlightenment. I found that simply finding an activity that serves as a quick 'reset' and grounds me is an essential tool in coping with my symptoms. For me, I like to lie down or sit against a wall and close my eyes, focusing on my breathing or the noises around me. If I make it just five minutes I always feel refreshed and a drop-off in physical symptoms related to overstimulation.
- Intermittent fasting. I'm not sure what the science is behind this, but I consistently feel best when I'm in a routine of eating a single meal a day. I've never been a big eater to begin with and have followed this 'diet' incidentally for most of my adult life, but I've found it to have a positive effect on my symptoms and mood.
- Support group. You don't need a ton of people for this one -- even one person will suffice -- but having someone to vent to who geuinely understands how hard it is to face these symptoms is essential. Therapy can be useful and effective to control and prevent negative thought patterns, but nothing combats the loneliness and isolation this injury has caused like talking to someone else going through something similar. I can't recommend this enough.
- Sleep. This should be a given, but getting good sleep is a must. I feel terrible on days when I fail to sleep well.
Effective Accomodations
FL-41 glasses have been a lifesaver for me. It can be counterproductive to consistently wear sunglasses as it can further sensitize your cortex to light. These glasses block the most irritating and uncomfortable wavelengths of light without outright dimming the world around you, avoiding this dillema. I wear them indoors whenever it's extra bright, I need to use a screen, or I'm focusing on a visually intensive task. They're also helpful at night in dealing with the glare from streetlights and headlights.
Polarized sunglasses are another necessity for spending any time outdoors. I have an extremely difficult time in broad daylight without my sunglasses; I'm bombarded with visual stimuli and my brain struggles to focus on anything. This actually results in dizziness and physical sickness that can take hours to resolve. The same goes for bright supermarkets or big-box stores. The sunglasses aren't perfect but definitely make these activities a good bit more tolerable.
Dark mode / accessibility settings. This one should be obvious. While I try to avoid screens in general, when I do use them, I make sure to take advantage of visual accessibility options (such as blue-light-blocking night mode or similar color filters), dark mode on all apps, and maintain low brightness. Finding the right backlighting is also important. Using a screen in pitch black is uncomfortable due to the contrast.
Flicker-free lighting. It took a lot of trial and error to discover that I tend to feel the most uncomfortable under lighting that flickers or uses pulse-wave modulation to control brightness. I've replaced most of my home's lights with incandescent bulbs or flicker-free LEDs which have made evening lighting much more comfortable.
E-ink monitors. This is a relatively new (and expensive) technology, but I have portable and desktop e-ink monitors which are far less straining and fatiguing than back-lit monitors. I'm able to use these for an extended period of time without too much discomfort. I'm hopeful that these will allow me to return to my career if my symptoms don't worsen.
'Return to Baseline' Toolbox
During a normal day there's many times when my symptoms will flare and I'll feel overstimulated, uncomfortable and fatigued, despite all the above treatments and accomodations. For these times I have a small list of go-to remedies which help alleviate my symptoms and bring me back to a more comfortable baseline.
- Lemon-infused water is a simple drink which proves to be very soothing. This is great when paired with one of the below physical activities.
- Ibuprofen. Not wise to abuse this OTC pain medication due to its kidney-harming potential, but ibuprofen does an excellent job to numb my headaches and head pressure I get from too much visual or cognitive stimulation.
- Music. While it's hard to find comfort and pleasure in visual things, I'm luckily able to appreciate music just as much as I was before my injury. I've invested a great deal in high-quality speakers and have put together some well-curated playlists of my favorite artists and genres. Music is an amazing and effective distraction from the frustration and suffering I face.
- Mindful showers. This has become a go-to of mine: a nice shower in total darkness brings me as close as I can get to my previous clear-headed self.
- Short naps are helpful when fatigue is prominent and I need a 'hard reset.' Sleeping too long can make me feel worse, however, so I try to keep these around 30 to 45 minutes.
- Crying. Maybe this one is a little depressing, but hear me out. I hadn't cried for over a decade before my injury, but I've found that letting out my frustration and sadness this way is extremely cathartic and usually leaves me feeling better. I don't hesitate to let out my emotions anymore.
On another note, I've recently received notice that I've been admitted to Mayo Clinic through their general medicine pipeline. I'll be flying to Rochester, MN in mid-May and working with specialists to hopefully find a more specific cause and effective treatment for my symptoms. I'll be sure to document my experience on this blog.
To whoever is reading this - have a wonderful Easter holiday!
-A