I apologize in advance for this being a longer read. I tried to keep it brief but that didn’t seem to happen.
I’ve spent a fair amount of time on this site as a bystander, and it has been incredibly helpful. Perhaps the best that I have found in terms of aligning with what I have gone through and how far I have come. I’ll spare a lot of the details that led me to my “crash”, other than it happened about 3 years ago after I went through by far the most stressful time in my life. The short of it is that I fell into a major spiral of anxiety/health OCD due to some very stressful circumstances. After about 3-4 months, (and medication) I started to improve. I was on Cymbalta (SSRI) for anxiety for about 10 weeks before my doctor stated that I was doing quite well and we agreed I did not need to be on this medication any further. While Cymbalta helped somewhat, there was a handful of side effects that really made me want to distance myself from the medication. I was doing quite well and tapered off the Cymbalta over a two month timeframe.
At that point, all He$% broke loose. What I was experiencing before Cymbalta paled in comparison to post-Cymbalta. At the time, I was being told I had a bad reaction to the SSRI and was experiencing a “protracted acute withdrawal” of Cymbalta which didn’t make a lot of sense. Whatever I was experiencing, it lasted MANY months. No medical doctor really knew what was going on and I went through the gamut of doctor visits. Upon coming off the medication, I had a ton of vision issues, anxiety (3x worse than before the meds), visual vertigo, depression, insomnia, chronic headaches, major balance issues, major brain fog, and depersonalization. Among the issues I mentioned, I just overall felt like I had a severe hangover for well over a year. My life as I knew it had changed drastically and I am still in awe that I was able to keep my corporate job during the worst of it. There were many days where I struggled badly to see my computer screen and compute even the most basic job functions. COVID was a blessing in that regard as things just slowed down a bit. Being the breadwinner in my family and trying to keep everything intact took a real toll on me as I just had no idea what was happening. In the depths of it, I cycled through a couple hefty medications to try and stabilize my brain which didn’t really work and caused more harm than good. At the worst of it, I became dependent on a benzo (Ativan) just to get through each day. Shaking free from Ativan presented its own set of challenges but thankfully I worked through it.
Over time, some inner fortitude, and finding out the true definition of stoicism, I’ve been able to put the pieces back together. It all changed for the positive when I challenged the medical care I was being given and searched out the best Neurologist/Headache specialist in my area. She has been a godsend and I am blessed to have found her on my own. For the first time in about 18 months, we began tackling it as a chronic headache issue as opposed to a psychiatric issue. She believes I am incredibly sensitive to meds and my vestibular system got destabilized when I came off Cymbalta. For the reasons above, I was incredibly apprehensive to try any new medication of ANY kind. That said, I couldn’t continue on the same path and agreed to start with Lamical since vision issues were some of my worst symptoms and she was confident it could help with that. Lamictal gave pretty immediate improvement in the areas of visual vertigo, dizziness, and an overall improvement with my eyes working together. It did not help with the blurry, static vision much however. I have been on 150mg of Lamictal for about 20 months. Over that time, things slowly improved with the exception of what I now realize was chronic 24/7 migraines. The head pain, brain fog, and some lingering vision issues were still persistent as I bounced through Topamax and Amitriptyline without any success. I started on Propranolol about 6 months ago which has really helped me turn the corner. Although not 100%, there are days and sometimes a week randomly where I fell 90%. Propranolol has helped the most in just taking the headache pain away as well as the brain fog. The current combination of Lamictal and Propranolol has seemed to be a good one and it’s safe to say that I’m hovering at about 75% on the daily.
That brings me to current state. I am on the road to recovery and learning how to manage the remaining symptoms. I will be honest in that I do still struggle with some depression and anxiety as a result of what is still lingering.
What’s left at this point:
Vision – No question this is what still causes me the most grief. Although better, I still struggle with an overall feeling that my vision is on high def mode and my vision isn’t always still when I focus on something. I also see a light layer of static 24/7 that covers my field of view. This can really ebb and flow depending on my migraine severity and anxiety level. I know the Propanol is helping with the migraine pain but I know that I am still experiencing a ‘silent migraine’ it seems. The vision issues still cause me a lot of anxiety at times and learning about “visual snow syndrome” being untreatable has been a tough pill to swallow. At times I wonder if I truly have visual snow as there are some days where visual clarity is WAY better than other days. Although it is still present, it can be very faint and almost like there is nothing wrong at all. There is no question that my anxiety/OCD about my vision causes it to be worse. The days that I am completely busy and living life are paralleled with better vision. I often wonder if my anxiety is still at a level that is causing the vision crap…or if I am stuck with it for good.
Anxiety – As I mentioned, it is WAY better than before but certainly still present. I have learned to manage it pretty well and it really only surfaces itself when I get bummed about lingering issue.
Brain Fog – it is SO much better than before but it is still present. It seems most prevalent upon waking up and just a very light hangover feeling. Some days are much worse than others.
PTSD – I’ll be honest, I am still a bit rattled by what I experienced. I know that I will never go back to the depths I was in but it was a pretty traumatic experience. Some light depression still ensues. On the flipside, realizing the adversity that I worked through has been very uplifting and motivating. Not sure much can slow me down at this point.
With more time, I believe I will continue to heal and see improvement. It seems removing as much stress as possible, exercise, meditation, good sleep, no caffeine, and working on getting back to life has shown the most positive improvement for me thus far. I truly have a new perspective on life and think of each of you as true warriors for battling a similar path that can be incredibly lonely at times.
All said, I guess I am hoping to hear that perhaps some (or someone you know) has seen improvement on the high def and static vision side of things. I’ve been working hard on acceptance and some days are certainly easier than others on that front. I do believe that I will habituate to what is leftover regardless but I just get caught wondering if anxiety is just fueling it at this point. Ugh.