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Hello, just thought you might like to update information here about Encephalitis. I don't see anything about autoimmune causes on your site - for example Anti-NMDA Encephalitis.
I just read Miya Nabeta's comment, and I can't even begin to parallel the feeling! I just took a course in Ontario last week called Brain Basics. I have been crying ever since! I learned so much, and the idea of 'flooding' is new, but not new to me. Weird to say, I know! I experienced pretty much all of the sensory flooding imaginable, and 5 months after the injury suffered further trauma which brought symptoms back to day one times 1000. I thought I was going crazy, and for the last 5 years have thought I have been experiencing panic disorder, agoraphobia, and situation adjustment disorder (as diagnosed by my really un-informed ex-doctor). I've never had any medical help for the ABI, and have also suffered through the ability to defend my difficulties when I couldn't even put words to them! Thank you so much! After my course, and hearing other survivors talking about their difficulties in lines, busy stores, noisy areas, and understanding that these aren't panic attacks in the 'mental health' terms, in addition to the fact that for almost two years, while slowly weaning myself back into the public, I would have to do 5-7 hours of guided meditation on my couch daily to get my head straight and feel a slight sense of calm, I now have an explanation!!! Please do continue to provide information, as those of us who have suffered need answers. Especially when our medical professionals refuse to take our symptoms seriously, or even have the ability to provide one ounce of care! Miya, by the way, I empathize 100%....I tend to minimize, for example, I triple fractured my ankle and in the emerge was laughing so as not to cry, I was sent home with a sprained ankle, only to be taken seriously the next day when I looked like 'Misery.' Our external facades do not clearly emulate our internal struggles, especially for those of us not looking for pity, just understanding. But because we are so eloquently able to wear these masks, even when we are vulnerable and try to speak about it, our symptoms are disregarded or minimized.
Thank you. I have a brain injury. It has been a challenge. Your article about flooding brought me to tears. It is so hard to defend my disability from the angry verbal assaults when I appear so normal, but nothing is normal about me.
Hello I think I have a interesting story to share. It quite involved but for example I was in 3 car accidents last January and fill off a cliff 430 feet last April. Numerous issues but I survived. I want to inspire people and perhaps be a case study. Thanks, Jason
A thousand yhankyous for your work in bringing the challenges of flooding and other brain injury issues to light. I have been living with a brain injury since July 2015 and an very grateful for this campaign. I would say the aphasia us worsened by flooding and sometimes it feels like my only choice is to scream and cover my eyes or ears or shut down and become more robot then human. I have found that by exposing myself bit by bit is helping to restore my filters. It does not help at this point to stay in my comfort zone as I believe I need to put my brain in environments and ask it to deal with it , always cognizant of my limits and always with compassion. Thankyou again for your work.
I am a 2 year brain stem stroke survivor. The information on this site has helped my friends and family so much. Thank you, thank you, thank you.
Thank you so so much for your site on brain fatigue . I suffered a severe brain injury , temporal bleed in 2003. So am sadly used to the very debilitating affects it causes.Frustration ,anger that i am not who i used to be e.c.t..You description is exactly how it is ,so another thank you for letting myself and others know people like yourselves do understand and care enough to research our condition .Take care and best wishes ,Vicki.
Great video on overstimulation. I am still trying to recover from it.
I have POTS (Postural Orthostatic Tachycardia Syndrome), in the context of lax venous tissue causing low blood pressure. The 'body panic' caused by autonomic nervous system's overreaction to low blood pressure, and trigger-happy 'fight or flight' system, causes overstimulation. In fact it can feel like shock and terror from your body alone, and any other sensory or emotional inputs can be just too much. It also causes profound fatigue.
Many people with heritable disorders of connective tissue (such as in my case Ehlers Danlos Syndrome) have this kind of POTS and get overstimulated easily.
Is this outside your field of interest, or would it be useful for you to know about POTS?
There are some websites such as Disautonomia International, STARS Syncope Trust, and POTS UK, and UK POTSies. Also the Autonomic Unit at the National Hospital for Neurology and Neorosurgery's website could be a source of information on dysautonomias.
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