Something’s Wrong with My Brain!

For over a year and a half, I’ve been dealing with dizziness and other motion sickness type symptoms as a result of the way my body handles visual motion, although I’ve wondered if I’d been dealing with very mild symptoms, like daytime drowsiness, even before that time. While I’m currently receiving treatment that seems to be dealing with some of the effects and symptoms, I’m not sure of the root cause and if the visual motion processing (or whatever they happen to be) issues themselves can be cured.

Around May 2018, I noticed disturbing issues I was having while at work. I would feel dizzy, and when walking around the office area, I would feel my body listing to one side. I would have to force myself to equalize my posture and stance. I recalled how I felt back in 2015 when I thought I had vestibular neuritis and began researching inner ear/vestibular disorders again. One thing that caught my attention was the idea that fluorescent lighting can trigger symptoms like dizziness. I had a fluorescent bulb at my desk that I used daily to give better light while working. When I decided to try turning it off and not using it, I could tell a significant difference in my symptoms. I ordered new prescription lenses that offered better blue-light protection and started wearing a visor to the office to block the overhead lighting. I also wore the visor in other areas where the lighting was a problem. Eventually, I began wearing a hat with a brim all the way around to block out light from the sides as well as the front. I installed software to limit the output of blue light from my monitors. These changes seemed to help for a time.

At the end of June 2018, we moved to a different building. I had the opportunity to rearrange my desk so that my chair and monitor could be toward the door. However, making this change forced me to sit at a narrower part of my desk. I ended up sitting very close to my monitors. One fortunate change was that the overhead lighting in the new building was LED and didn’t bother me like the fluorescent bulbs in our other location. I stopped wearing a hat into the office. Over the months, my symptoms worsened. I noticed I was having symptoms akin to what one would experience in a panic attack. It was if my body was sensing some threat and going into fight-or-flight mode. I also began to experience some pretty intense stomachaches and nausea. One week, I was really struggling to sleep. Before this time, I had already seen an ENT doctor who had basically ruled out any inner ear problems. I had been referred to a neurologist who the ENT figured may treat my issue as an outgrowth of migraines. He was aware of my history of headaches I’d had growing up and into my early adult years. The neurologist appointment wasn’t for a few months, but I was reading online and saw that CoQ10 could be a helpful supplement for those experiencing migraines. While my sleep got better and I felt some better overall after starting a 30 mg supplement, my other symptoms persisted.

In September, my nausea and stomach problems worsened to the point that I was afraid I would start getting sick at work. When I approached the ENT about visually induced motion sickness and what would be some good motion sickness treatments to try, he didn’t really have anything to offer. Since my issues didn’t appear to be related to inner ear problems, he wasn’t sure what to tell me. I felt desperate since my neurologist appointment was still two months away. I decided to try different approaches on my own. The first thing I tried was to rearrange my desk. I moved my computer to another part of the desk where I could sit further away from the monitor. I was using only one monitor instead of two. Looking back and forth between the two monitors worsened my dizziness. I switched out my single monitor for one with an LED backlight. I turned up its brightness all the way to eliminate any possibility of flicker. I also turned up the overhead lights all the way to make sure they didn’t flicker. I purchased ginger capsules to take whenever I felt nauseous. Clear fizzy drinks also helped my stomach feel better, so I started keeping some of those in the community refrigerator to have on hand. I tried Sea Bands, but those didn’t seem to help. I took meclizine or dramamine at night when needed to ease any stomach discomfort. The various things I was trying did seem to help somewhat, but if I did too much of certain things, like certain chores or staying in crowds for an extended period of time, I would feel really fatigued. I thought that maybe all the visual motion over time just wore down my body due to how it was reacting to it.

One thing that had been checked a couple of times over these months was my thyroid function. I was previously able to keep my TSH stable and at a value less than 2 by taking 50 mcg a day. The first time I checked it was on my own, and it was over 2. I figured that was my body getting better after I started back on my thyroid medication a few months before. However, when I saw the endocrinologist for the first time in November 2018, my TSH really hadn’t improved any. He decided to have me take two extra 50 mcg tablets a week. I felt a difference on the higher dosage. I didn’t feel as fatigued as I was feeling previously. I had an idea that maybe the stress being placed on my body due to its response to visual motion might be having an effect on my thyroid function. When I asked my endocrinologist about it, he didn’t seem to think that it could be affecting my TSH.

When I finally saw the neurologist, she diagnosed me with migraine-associated vertigo. She had me try riboflavin and magnesium supplementation, but that really didn’t do anything to help. She then had me try 37.5 mg of venlafaxine a day. My first night on the drug, I woke up in the night not feeling right, like something was wrong in my head. I was also really sleepy during the day. Since I could not find something close to what I was experiencing in the list of side effects and since there were other things coming up where I wanted to feel my best, I decided not to take any more of the medication and let my doctor know. I also tried to see if I could see another doctor who could help possibly uncover an alternative diagnosis. I really didn’t want to keep trying medications seemingly at random until something worked. I wanted to target the root cause if possible. I saw an optometrist who could do other testing. In her testing, she found an abnormality with my eye movement after being spun in a chair. She said that it took a lot longer than normal for my eyes to settle. She prescribed some exercises which I tried to do for as long as I could, but I never noticed any improvements. I asked my gastroenterologist to order some genetic carrier testing. Supposedly Wilson’s Disease could cause neurological issues, including abnormal eye movement. I wanted to rule it out once and for all. I didn’t think my primary care doctor actually checked me for the genes when I asked her about Wilson’s Disease a couple of years before. Wilson’s Disease didn’t show up on the genetic testing. She said that everything else was normal, but I requested a copy of the results anyway. That’s when I found something interesting, an FMR1 allele with 54 CGG repeats.

FMR1 is the gene related to Fragile X Syndrome. Carrier testing can reveal if one can potentially give her offspring an allele such that her baby can develop Fragile X Syndrome. A female premutation carrier can pass on an expanded FMR1 allele to her offspring. An allele with more than 200 CGG repeats would result in Fragile X Syndrome. A female premutation carrier can have problems herself like FXTAS (Fragile X Associated Tremor and Ataxia) and FXPOI (Fragile X Associated Primary Ovarian Insufficiency) as well as other issues potentially related. My result was the upper-bound of the intermediate range. One more CGG repeat and I would have been a premutation carrier. My neurologist didn’t seem to think that the FMR1 result would be related to the issues I was experiencing. She decided to try me on another medication, one of the SSRIs, escitalopram. I felt better after the first dose. While I was still experiencing some of the effects of my body’s response to visual motion, many of my symptoms improved dramatically. In fact, when my thyroid function was checked after starting the medication, my TSH had fallen by nearly a whole point. My endocrinologist didn’t believe that the change in my TSH was a result of the SSRI, so he didn’t grant my request to try going back down to 50 mcg a day of my medication. I’ve continued to do fine on 450 mcg a week, but my hope is to try going back down to 50 mcg a day when I feel I’m finally in a good place where my visual motion issues are being managed as well as they can be. If I’m back to working with my primary care doctor on my thyroid function, I may see if she will let me try it.

While the SSRI was extremely helpful, I was still experiencing problems with sleepiness when doing certain activities and with stomachaches and nausea, although not as bad as before. I still could not tolerate viewing scrolling displays, like scrolling on a computer screen, although other types of visual motion, like operating ceiling fans, seemed less problematic. My neurologist decided to try adding 10 mg of nortriptyline a day. The only difference I noticed with it was that I’d had fewer headaches than before I started taking it. Since I was still dealing with the drowsiness and stomach issues, she decided to try increasing my dose of nortriptyline up to 25 mg. She let me stop the escitalopram. I haven’t really felt the loss of the escitalopram, so the nortriptyline seems to be good at handling the effects of my visual motion processing issues as well. However, the drowsiness and stomach issues do sometimes occur. I’ve only been on the increased dosage for around a couple of weeks, so things may improve with time. However, it may be that things can’t get any better than where I am now. While I hate falling asleep at my desk at work during the day while doing certain things or while watching shows on TV in the evening, the issue is hardly debilitating. My stomach issues also seem to be manageable enough. I feel like I’ve come a long way from where I was. I see my neurologist again in March 2020, so I’ll find out then if she wants to change anything. I definitely plan to ask what is her treatment goal, if she’s just hoping to manage my symptoms or if she hopes to cure my visual motion processing issues altogether. She still believes my issues are migraine-related and currently has my diagnosis as “migraine phenomenon/dizziness”.

My hope one day is to find out what is causing my body to mishandle visual motion and to have that properly treated so that I can tolerate visual motion normally again. I’m not sure if a genetic cause can be found and if it would affect my treatment in any way. Could the FMR1 finding be related in any way, or is it something else? Perhaps some other cause of my issues surrounding copper and iron utilization could be found, and perhaps that is related. Maybe there is an antidepressant or other medication that can completely eradicate my symptoms and allow me to go back down to 50 mcg a day on my thyroid medication. For the present, I plan to take one day at a time and continue to do what I can to control my symptoms and live my life as normally as I can.

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