i joined a while back, but stuck mostly with PM’s because of the difficulty in reading the board. i’ll probably continue to pursue that method until i’m feeling better, at which time i’ll post my entire story, but i felt compelled to post this, as i’ve learned during my 7 month ordeal that “sensory overload” is the main symptom that is keeping me disabled, and i thought i’d share that.
first, i’ve had some VERY meaningful and interesting discussions with Julie on looking at our own symptoms, and the subject of “motion intolerance” came up. We were both using the term quite frequently, only to learn a few weeks later that her “motion intolerance” is mainly the type that is felt in EXCESS, making normal every-day activities like sitting in a bathtub, laying on a bed while talking on the phone, or even just sitting still in a chair practically impossible whereas MY “motion intolerance” turned out to be mostly an inability for my brain to process the outside world at the proper “speed” as if my brain just couldn’t react fast enough (sensory overload I call it now). I’m oversimplying a little bit as we both have a cross-over of each of the others symptoms of course but it was amazing how each of us threw those words around as though the terms were universally one idea lol. Anyway, we got a laugh out of it when we finally figured out the two symptoms were different so I thought I’d share this symptom with everyone.
My most disabling symptom is the inability for my brain to process too much information at one time. If I am outside in an open field, the symptoms are more tolerable. Or if I take a walk at night on a country road. These situations to tone down by sensory overload help but I’m by no means cured lol as I have other issues including dizziness/fogginess (slight drunk feeling, not true spinning vertigo), strange head sensations such as vibrations in the head, pricking sensations in the face, visual phenomena including the appearance that the environment is slowly shifting around constantly, hazy vision, photophobia, phonophobia, pressure-induced dizziness from straining which can incapacitate me for up to 8 hours, and initially some false motion (rocking, swaying, etc) but Topamax stopped that. it’s the ONLY thing the topamax stopped). lastly, I have fullness in both ears all the time as well. These are all symptoms I experience with no breaks. All the symptoms combined lead to a quite disabling picture but the sensory overload prevents me from living even a semi-normal life as I have to avoid just about any situation that my brain needs to process multiple bits of information. Grocery stores, night-life, crowded malls, crowded streets in the daytime, even inside my own house during the day if there is a lot going on. I often have a hard time finding what I need in my basement, or in my garage as when I walk in there, my brain can’t take in all the information, and I find myself constantly going over the same areas again thinking I missed items. Anything that requires hand/eye coordination is no longer possible as I simply can’t see what I’m doing even though my vision is 20/20. I used to be heavily into arts/crafts, building things, etc. But I can no longer do it as I can’t shop the stores I need to get the materials and I don’t have the focus/concentration as well as the visual/sensory perceptions to get the job done. The concentration just ends up making me dizzy lol. I know when I’ve pushed myself because I start getting headaches, my eyes hurt, the sinuses above my eyes hurt, and I start seeing flashing lights in the dark. It’s like clockwork with me. When I’ve taken it easy for several days, and have done just enough around the house to be somewhat comfortable, but not enough to push it, I don’t get as many headaches, and the flashing lights go away in a couple days. But the condition itself doesn’t improve for me in this “playing it safe” mode, if anyone is interested in knowing.
Well, I could go on more but i think that’s long enough for one post lol. I just though I’d take the time to describe my most disabling symptom, but sure as tax day, i do have MANY other disabling symptoms as well, that when combined, are just as lethal in keeping me disabled as the sensory overload, but for some reason, that’s just the one symptom that keeps sticking in my mind as the most limiting. In fact, I’m thinking that some of my other symptoms are part of the sensory overload like the photophobia, and phonophobia. If this symptom was magically lifted tomorrow, the next symptom keeping me down is the appearance that the environment is moving around on me. I wish i knew what THAT one was lol. Dr. Hain thought it sounded like a Mal De Debarkment-type symptom, but knowing my history, and knowing that i have no history of travel, he thought it was very unlikely that I would get this spontaneously. anyway, any responses or follow-ups with your most disabling symptom are of course welcome