TBI and brain aneurysms

Posted by kristivila @kristivila, May 7, 2018

I have had two brain aneurysms, one that burst. I know I am blessed to be alive, but struggle everyday. I get depressed and my memory is toast. I look good so people don’t seem to believe that I struggle. It seems that as time goes by, I get worse. My doctor’s don’t take me seriously because I look healthy. I think that if you don’t look disabled, people have no empathy. Even my family doesn’t seem to care. I just want to give up and I am tired all the time. I am partially blind in one eye and fall over a lot. I loose everything. I sometimes forget a whole day

@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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I was diagnosed about 5 years ago. They do a CT scan and MRI every 6 months. It in my carotid artery in my brain.

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@kariulrich

@kristivila I am so sorry to hear you are dealing with an invisible illness! You are not alone in your struggles to find understanding and validation. I have a vascular disease, small brain aneurysms and avm's that are monitored. I have recently reconnected with some high school friends, many know I have a disease but they have no idea how it affects my daily life, nor would they understand no matter how much I explained. Don't give up! We are here! What gives you comfort? Do you have an activity or something special that you enjoy? I read a lot as an escape. More awareness needs to be made in coping with invisible illness. I have found this facebook page/blog so helpful, I hope you can find some comfort in it as I did. Our illness may not be the same, but when dealing with invisible illness we sure can relate to one another. Here is a link to PajamaDaze: https://www.pajamadaze.com or https://www.facebook.com/PajamaDaze/

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Seems to me that it should be removed. Is there a chance of it rupturing?

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Hello , dont feel alone. I'm a Veteran family young and am in shape and feel the same way as you. I just wanna give up cause everything is blamed on anxiety and I have these dejavu feelings I dont like along w anxiety . I hope you feel better wish there was something I could do to help you. My father passed away unexpectedly too yet I hear the same " you re young healthy and look great " so frustrating. Beyond it all try to find the great on everything . Let's not give up .

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Hello @outtacloud

I see that this is your first post on Mayo Connect – welcome. Since you posted in TBI and brain aneurysms discussion group can we assume that you had a TBI, perhaps as a result of military experience?

If you feel comfortable sharing more, please let us know how long ago you had the TBI and what your current symptoms are and if you have had any post-TBI therapies.

Here at Connect, we all learn from each other. I look forward to hearing from you again.

Teresa

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@kristivila you are definitely not alone in your thoughts and feelings. I also have a brain injury. Mine is from a brain surgery that I learned I never needed, and it took me years to learn how to deal with "you don't look sick." TBI is a lot to deal with on its own, and when you add in factors of others not understanding or appreciating what you are dealing with, it can be very depressing.

What has helped me the most is seeing a psychologist who has extensive experience with treating patients with brain injury. My doctor does extremely well with explaining why I have the issues I have in a manner that I can understand. Based on the location of my brain injury (frontal lobe), my executive functioning is compromised, and he explained to me in normal, every day terms how this then displays in my thinking feeling, reacting, etc. For instance, when someone upsets me, or something bad happens to me, it will take me many days longer to "get over" it. My doctor explained that executive functioning stores a person's emotional teflon enabling people to let things easily bounce off of them and get over things… my teflon is now broken, so things that happen to me don't just slide away from me anymore. It takes a lot longer.

Having this doctor explains things is amazing, but he is also teaching me cognitive behavioral therapy tactics to work around my brain's issues. For instance, I used to not be able to remember a three item grocery list for only five minutes. Now, I can remember 80 percent of a grocery list 30 days later.

If at all possible, try to find a doctor with experience in working with people on cognitive behavioral therapy. CBT has helped me tremendously.

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Omg kristavila!!! I'm so glad to have found someone who knows what I am going through! I also had a brain anurism burst back in February of this year. I.C.U. For two wks and home 4 well over a month recovering before going back to work. I came out of it, thank God, with no after effects, just some short term memory loss and got on with my life. Lately I find myself anxious, especially at night! I'll lay in bed so exhausted but my mind just won't shut down! I am tired all the time and find myself increasingly depressed and as you said everybody just kind of brushes it off because I look fine, and function day by day as usual! Also just as I thought what slight short term memory loss I was experiencing was getting better and over and come w/ O feel that it is returning! Well I feel a little better knowing I'm not alone! Thanks!!!!

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It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Yes, very painfull! I couldn't move an inch without being in severe pain ! And that lasted well beyond the 2 wks in I.C.U !!! Mostly my muscle and joints from my waist down! It was unbearable!!! They said it was from the blood finally dispersing, then basically being absorbed by your body! It's defiantly a horrible experience from beginning to end but just know he s still here and there's a reason for that, whatever it may be! Thank you for your advice! I hope everything turns out well! I'm here if you want to reach out again!!!

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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My Prayers .Trust me it works.Have Full faith in Divinity and whatever God you belive.I am Hindu and was saved from almost certain death after heart attack.You may like to chant Om Om Om if Ok HE listens to Prayers.God Bless

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Thank you for your quick response. Yes we are lucky that he is still here with us. He never gets headaches so these ate definitely doozies. He said fireworks were going off in his head. Guess he has his own 4th of July show. We will take it one day at a time as the ol saying goes. I hope you continue to gain more strength and hope moving forward. Bless you!

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@0629 and @zoe888, you both mention ICU experiences. I want to let you know about this very informative Page and Group discussion about post intensive care syndrome.

– Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/ Great blog post here about PICS, what it is, prevention and coping strategies
– Post-Intensive Care Syndrome (PICS) – Let's Talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/ Meet others (patients and family members) who know what it is like to be or have been in ICU.

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@0629

It has to be hard. I’m so sorry you’re feeling this way. Try telling your family exactly what you wrote. Maybe they will better understand. I am sitting here with my husband who is in the ICU. day 3. Still much pain. Won’t eat. I’m desperately worried

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Day 4. Now he is getting hiccups with some stomach spasms. Still on pain meds and oxygen. On a sodium drip also. Icu my new home for now. Any suggestions w the hiccups did any if you have them?

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