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potterymkr Asked September 2012

Anyone had experience dealing with someone who had PRES (brain swelling ) & stroke?

My mother had a stroke just before this occurred. And was locked into seizures for hours. It was a week before they found the PRES in her frontal lobe.. I am dealing with many negative personality changes, including much anger directed at me. Irrationality, confusion, lack of common sense, etc. She can read, do crossword puzzles, is physically mobile. She is manipulative and sneaky.She is also able to act normal with the doctors. Which puts me in the difficult position of trying to prove what i have reported to them is true.
I would like to hear of others experiences dealing with someone like this. I feel overwhelmed, My own doctor has given me anti-anxiety pills, because I felt I was having a nervous breakdown.

chloesgrams2012 Sep 2012
Oh My, my sincere best to you. My Mom, we believe had a mini stroke and fell and that was the beginning of all her "brain" problems. She has had 2 brain surgeries and now lives with me and my husband because she cannot take care of herself or be alone. I also experience the trips to the doctor and she never says or does what I have told him she does. This also goes for family. I tell my husband and daughter what I have been through during the day and she never does this stuff or says the things she does when it is just me! Makes you think that you are going crazy, I know. I, too, am on anxiety medicine and after 2 years got it increased from 20 mg to 40 mg. I know exactly what you mean about your life spiraling out of control. Mom is also sneaky and NOSEY. The only privacy we have is to go outside or to the bathroom to discuss anything or after she goes to bed, maybe go to Walmart or grab some fast food. This situation has really played havoc with my mental and physical health and well being. Please, feel free to contact me with any questions you may have or things that are happening. I may not have an answer, but I have 2 years experience dealing with brain injury.
My best to you. Take care!

ChristineMarie Sep 2012
Hi, I don't have any personal experience dealing with PRES (I am a nurse and I don't know what the acronym means) but my husband had a stroke 1 year, 2 days ago. It was a left brain stroke which left him paralyzed down the right side. He is finally able to walk with a cane but his right arm doesn't function. He can speak but it is slow without a lot of volume. I do know that the weeks after his stroke he was very emotionally labile; he would get teary and then suddenly start giggling and he didn't know why. He had difficulty making any type of decision - "should I eat this toast- Oh I don't know what to do". Whatever area of the brain is affected will alter how that area processes things. Each area of the brain has specific functions and tasks. If you were to google the brain and see what the frontal lobe controls then her behaviour would probably make sense. I might also consider having a detailed conversation with her physician(s) after I got the info on the brain. I would want to know what deficits I can expect, what her treatment plan is and what her prognosis is. Physicians would know that the type of event she had will certainly have cognitive changes and or deficits along with personality and behavioural changes. You need to know exactly what they are if you are going to be involved with her care.
And as a side note; she doesn't realize what she is doing, she cannot control (yet) what she is doing so even though this is really hard to do - try not to take it personal. I am glad to hear that you have visited with your own doctor. Many times anxiety is caused by the fear of the unknown and perhaps once you get more info some of the anxiety will dissipate. I am sending you a hug.

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