Participants must present with a complete or incomplete AIS B traumatic spinal cord injury, located between the C4 and T10 levels. The maximum time elapsed since the injury is 42 days for the subacute phase and 5 years for the chronic phase.
I myself suffered from this disorder—and quite severely—for nearly six years. Just recently, my brother began experiencing a sensation of heaviness in his head along with dizziness, exactly the same symptoms I had before the onset of my own visual snow syndrome. Two days ago, he spent hours staring at how different the walls looked to him; only after I had spent a long time comforting him did he tearfully admit that he was seeing colored dots, dots that intensify at night, and that it was terrifying him. Going outside offers him no relief, as he sees what he describes as constantly swirling circles.
I can hardly believe it! My brother is young; does he really have to go through this? Is this simply a reaction to my telling my family about what I see, or is he actually suffering from this terrible visual snow? I don't want my brother to go through the same hell. We’ve made an appointment with an ophthalmologist; failing that, we won't hesitate to see a neurologist to ensure that there are no abnormalities in his eyes or brain.
There are a few very new and extremely expensive medications if are prescribed off-label. Take zuranolone, for instance, which is used for postpartum depression: it upregulates GABA-A receptors and enhances basal inhibition. This differs from clonazepam, which acts only in short bursts without lasting effect and carries a high risk of dependence. Pimavanserin has also been mentioned—albeit rarely—for HPPD as a potential regulator of serotonergic signaling. But why can't we get access to it?!!!! I would be willing to get pregnant and fake sadness afterward just to get that drug. I’m sick of waiting; I'm beyond done, and my symptoms are extremely severe. I can picture myself begging doctors to prescribe them off-label; I certainly won't give up without a fight, but I only have one life, and it’s already been ruined, lost over almost nothing.
Please! If they're free on the internet, I'd be very pleased! Anything that's material heavy like genetics and embryonic development, neuroimmunology and neuorprosthetics, EEG recordings, neuroengineering and brain spine interfaces!!
Low-frequency parietal activity may constitute a pivotal neurophysiological signature underlying the pathophysiology of VSS. This finding suggests potential therapeutic targets aimed at restoring cortical excitability balance and improving sensory–attentional regulation. First, alpha-regulating neurofeedback could be employed to enhance parieto-occipital alpha oscillatory control, thereby reinforcing inhibitory gating mechanisms and suppressing the intrusion of irrelevant visual percepts [48, 49]. Second, parietal transcranial magnetic stimulation (TMS) protocols designed to downregulate pathological theta activity may modulate top-down attentional control and recalibrate thalamocortical rhythmicity, potentially normalizing dysrhythmic network activity [54, 55]. Third, GABAergic modulation, either through pharmacological enhancement of inhibitory neurotransmission or noninvasive interventions that increase cortical inhibition, may help rebalance the excitatory–inhibitory dynamics [56, 57] and attenuate visual hyperexcitability. Collectively, these approaches offer a rational framework for developing frequency-specific neuromodulation strategies that directly target the cortical and thalamocortical dysrhythmia underlying VSS, warranting systematic investigation in future clinical trials.
Faced with the so many incurable diseases, how can a doctor consider this profession rewarding? Textbooks only describe heavily the most common health problems, providing only limited information on treatment options. Take neurological conditions, for example, which are rarely treated effectively. Medication is either prescribed only for the very common, old illnesses like multiple sclerosis, or it ignores disorders as just functional as tinnitus, which can still drive people crazy! Medicine doesn't save lives; it tries to keep you alive by minimizing the burden of the illness, that if the patient is lucky and has something that could be treated.
What makes you a nihilist ? You don't believe in God so there are no rewards after this life ? You think your actions are so miniature to ever reach what you deem as meaningful achievement ? Isn't this a depressing thought ?
I have been on and off this forum for three years, three years during which my life was completely turned upside down. I cried, I withdrew into myself, I hated myself, I wished I were dead, and I felt relief every time my vision improved and still repeat again. You know, people who eventually break free from the grip of vision problems and focus more on life leave this sub altogether Indefinitely. I left for a year, then came back to find there were still no new treatments. This sub is either full of people wondering if they have VSS, people who are depressed, and others who tell them there's nothing they can do and they just have to accept it. This sub has operated this way since its inception.
After years of suffering, and it's not over yet, my only advice, for myself and for others struggling, is to accept that there's no magic bullet, that there are a few options like vision therapy and medications like clonazepam that aren't 100% effective but are still treatments. If you want to feel better, go see a doctor who's willing to experiment with you. I swear to you, everyone who experienced even the slightest relief never came back here. Yet, I myself spoke to many of them every day, but now they've left the entire app for months. And you and I, when we feel like them, won't come back here either.
The absence of a cure doesn't mean the absence of treatment. Treating comorbidities like dry eye and migraines and tinted lenses could be a complete game changer. Stand up for yourself; this rule applies not only to vss and "rare" diseases, but to all neurological conditions. If we were paralyzed, there would be no cure; if we suffered from a severe form of epilepsy, it would be the same; if we had multiple sclerosis, some of us would not respond to any standard treatment. Neurological conditions are highly variable and often extremely complex; they don't necessarily respond easily to simple pills right from the start.
Finally, VSS is the subject of research conducted by very few people, and we don't really contribute to it, contenting ourselves with either lamenting the situation or abandoning the project altogether. Either we find ways to support the research, or we do nothing.
They added that further studies are needed. As always 🤷🏻
Is it worth it ? Does she give time to actually listen and speak about her research with patients ?
I've noticed lately, and probably always have, that I have very little to occupy my mind. I spend my time studying or sleeping, and going out is impossible because of the stifling heat. My health is making me extremely depressed. How do you spend your days ? How do you become productive and have a meaning in your life ???
I'm 21 years old and I went to see my GP about this problem. I had an ultrasound and an electrocardiogram; I was diagnosed with sinus tachycardia at 106 bpm. The chest ultrasound revealed what my doctor described as swollen structures, possibly lymph nodes ? I was prescribed antibiotics, which I'm not taking, but I still don't know if I should see a specialist because the pain persists, quite randomly and I'm unsure whether those only tests were enough to rule out hidden yet serious causes. I've read some horrifying things about heart attacks and their neurological consequences; this is the worst I can imagine!