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Contact / Reactions

Contact us: braininjuryx@gmail.com (Note! not for medical questions, not for help. If you need help, please take a look on our links page)

We are working on the translation from the Dutch site. If you notice incorrect English, or if you can help us out in any way, please be so kind to let us know.

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Please consider our restrictions that we can not give you a personal medical advice/ recommendation of doctors etc.

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Mel Gagnon
7 months ago

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.

Miya Nabeta
7 months ago

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.

Jason Levy
9 months ago

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

lisa
10 months ago

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.

james lance
2 years ago

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.

Vicki
2 years ago

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.

Babsy
2 years ago

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.

Rebecca
3 years ago

Hello,

I have an inquiry about your site. Who should I contact about this?

Thank you,

Rebecca

Monica Seet
3 years ago

Thank you this is the first website with a really clear explanation of what my embolic stroke has done to me. Even doctors are unfamiliar with flooding and I am sick of being thought less of because I feel unwell but look well. I am going to send the link to everyone close to me as it explains things so very very well.

Jenny Hughes
3 years ago

THANKS for really brilliant info/explanation about flooding,never seen that anywhere else. Please can you send it to headway.org.uk - they should do a whole leaflet on it.

I forgot to say in your form I filled in: after brain won't stop AT ALL, can't rest or sleep because brain on overdrive = hell. Plus brain burning and tickling inside and sometimes close eyes and see lacey effect, rhythmic light/dark from top to bottom and when very extreme weird dark grey (blackish) and brown/yellowish patterns, not like ones found on net.

THANK YOU! Nobody seems to accept or understand what our daily life is like and WHY we stay home lots.

If I notice any bad english I'll try help, will forget = ask me?! Send me stuff to read/check/edit?

Best wishes,
Jenny Hughes

Jennifer
3 years ago

Hi,

I have a question regarding your website. Who should I email about that?

Thank you!

Jennifer

Dave
4 years ago

I am a right side stroke survivor, I saw the link to this in the group stroke talk for facebook, I saw a request to sign up to be counted but could not figure out where. I was going to give up because I've become frustrated with your site because it's confusing and I've lost interest but I wanted to leave feedback. I know there's a lot of info here and I'll come back another time to read again but reading is something I lost, I used to read everyday but I really don't read anything bigger than Facebook posts anymore.

roger
4 years ago

Oh Lord ,
Help me ,too keep my big mouth shut
untill i'll know where i'm talking about . i'm i-s it's every-one else that's mad .

roger
4 years ago

shit happens ,yesterday,i've got areally deep thought ,i whis i'll could remember what it wass roger n-e netherlands ,europe.

Shirley
4 years ago

Hi there,

I want to thank you very much for the info on this site. My dad has had a stroke and a paralysis.(hemiplegia) I didn't even know that there was a difference between left or right sided...
Tried to read all pages, esp about the unseen effects and learned a lot. I now understand his behavior better and can help him better.
THNX!

Ann Keegan
4 years ago

Hi,

I have a question regarding your website. Who should I email about that?

Thanks.

Ann


Nick Wilson
4 years ago

Hi in Feb 2007 I suffered a SAH caused by an arterial vena cava malformation . I struggle with cognitive and recognitive problems and in the past had other issues with sexual problems .