My burst brain anuerism happened in May 2020. I collapsed at a shopping center across the street from the hospital and after an mri was mediflighted to OU medical center and was there for 5 weeks. I was sent to a rehab hospital for a few weeks, then home.
I felt physically well. Although I don’t remember much about the time in either hospital, or at home the whole first year.
I’m horrified about some of the things I do remember.
I am from Oklahoma so we have legal medical marijuana. I do think it helps a little but my mind will not stop. Each thought is covered up with
another thought or idea so I forget what I’m doing, what I started to say. I get overwhelmed and start crying and generally losing my shit.
Family members are getting so tired of me. I am sick of me.
Since I had no pain when it burst, I often wish that should have let me go when the doctor asked them if they wanted to.
I’m lost.
I do outbursts very well.
I want to be left alone.
I want someone to talk to me nice. No more “snap out of it”. “ I know it’s hard to hear, but you should be thinking about other people and not yourself”. “What is WRONG WITH YOU???
Not helpful.
I hired a therapist. I’ve been twice.
My husband has had it with me.
That’s where I’m at.
My coping mechanism and what makes me step back from reality and just enjoy is only music and the outdoors, yard work, fire pit, walking. I may not make it
Ok. I was so excited to find a site to help me. I feel so alone. But I poured my heart out in my story and I realize, I am alone. No one is here. The only person that has seen my post is me.
Even my spouse doesn’t get it. We try to “talk it out” but mostly my forgetting things is frustrating for him as well as me.
@Louann
I hear you and I have read your posts.
To @Moltroub @ModSupport can you please post some insight?
A ruptured aneurysm is a terrible thing to go through. Some of us have only minimal damage which is not a problem , others have been changed mentally and physically.
It’s not easy for our spouses, they may think it’s over and everything should be fine. Recovery takes a long time, and it’s a hard work.
I remember what my primary care physician told me when I had my first checkup after being sent home from the ICU and my subarachnoid hemorrhage. He asked me about my mood and when I described it, he said this is PTSD and please reach out to me if it doesn’t get better, we are here for you.
That said, don’t walk this path alone. Reach out to your physician, it would be a good thing if your spouse can follow you. I think both of you will have to work on this. I have spent many hours on this site reading what others have posted. It helped me in processing my mind.
I hope others will reach out to you.
All the best wishes to you.
Thank you so much. Just to be heard is a blessing.
Louann, so sorry your post seems to have landed on deaf ears. There are lots of people here who care, I assure you! But your post has highlighted a problem in our notification system when people post in the personal stories category, and a flaw in our process for new members. We’re going to look into that.
So, let’s see if we can organize another attempt for you. I’m going to use my admin tools to move your post to our General category, which is where most of the traffic is. I’ll also make your post yours, as opposed to a post on someone else’s thread.
Seenie from ModSupport
@Louann i didn’t receive your post until today, which unfortunately happens. When oct20 reached out to me and ModSupport, it should have sent me a message and I’m unsure if it’s me, my system or the site. I can get overwhelmed by the email alerts to be honest, so I best take the responsibility.
I recall after I was released from NSICU it took a few months for me to be able to go to public places and only if it was not busy. We met with three other friends at a restaurant early one Sunday and one talks a lot, always has and always will. One of my changes has been I also talk a lot now, when I used to just listen, So here we are both talking a lot and another friend told me it wasn’t all about me. I have never forgotten that and it did hurt as I couldn’t really control it back then. I need to let it go and I know I do, but it’s difficult and a reminder to work harder at trying to relearn to be quite. I thought I was like a spoiled child and thought it should be about me I guess. BH assured me I had done nothing wrong, but I wasn’t sure. Luckily I had no affect and it may have been a year later that I decided it hurt my feelings, I don’t remember, After my fourth repair, it’s been a bit easier to be quite but I’m not where I want to be, yet
Fast forward a couple of years and the person who talks a lot had car issues and pulled in our driveway. The expectation was that I would drive said person home and allow the vehicle to stay in our driveway until a tow truck could be found. I wasn’t able to drive that far, even though it was only about ten miles or less. I would have had to go through our larger city or the Interstate and I just wasn’t able. This person was fully aware of my limits. I became very confused and had to call BH to be told what I should do. It was a turning point in a relationship that was almost two decades old. I share this story because it’s a lesson we all need to learn - sometimes people we thought were supportive aren’t really. When we find ourselves unsupported, it’s up to us to find those who can and are willing.
Many times support for us means a therapist. Two visits is just the beginning and I would encourage you to keep going. Hopefully your therapist will provide skills to help you with the issues you identify as having. Perhaps they will also be able to identify other issues you haven’t yet. I imagine your husband has a bit of fear that’s going on. May I suggest that y’all try to discuss his feelings about your rupture at the time it happened, the weeks of NSICU and rehab, not about your memory or lack thereof, which is what happens.
It will take time for your brain to reroute. As Merl often explains, this isn’t a broken bone, so we aren’t talking weeks or months, it can take years for some folks. For memory issues, I used to use sticky notes, then a white board and my smart phone. I put reminders for everything appointment wise with a couple of alerts. I use Notes to help me remember what it is I need to do chore wise and I can just mark it as completed. I used to put way too many chores in for a day and now it’s for the week. BH will look over them sometimes, to ensure I don’t put too much on my plate.
I’ve learned here, that depending on where our rupture happened can be a heads up for what can happen to us as far as changes go, For me, I have a significant amount of damage in the frontal and temporal lobe as well as some other things from all the blood with both speech areas being affected, memory, etc. in the beginning I had no awareness of thought processing. My brain used to run a mile a minute like your description of what your brain is now doing, this was my norm and I miss it. We tend to miss that which we are accustomed to having. Hopefully it gets better, but it is a lot of work on our parts as survivors of a rupture and can be exhausting.
Make goals for yourself, small that lead to bigger. Try brain games for memory, Luminosity is highly recommended here and other sites. Also ask your therapist for suggestions, My wonderful speech therapist would often suggest games her children found that didn’t overwhelm or aggravate me. As my math skills started to slightly improve. I went back to Suduko which I loved before I ruptured. We play cards with friends and though it’s usually the same game every month, I fail to remember the rules, LOL. My friends don’t blink an eye when they have tor emend me and sometimes they will write them down. We are all in the 60-70ish range now.
Hope some of this helps. And again I apologize for whatever caused the issue of me not seeing your post. I will reach out to @ModSupport and ask. If this ever happens again, click my avatar (picture of one of our dogs) and send me a PM by clicking on message.
All the best,
Moltroub
Hi @Louann!!
You are Seen, Heard, and Understood! You are Alone! I am from Oklahoma but currently live in Texas. I had my ruptured BA in November 2020. I also felt so alone in this journey, until I found this Form. I have found that people on this forum have great advice and ideas to help. I to have felt many of the things you describe in your story. One thing I have learned to do is give myself some grace because I am still healing.
All The Best,
Jocelyn
Hi @Louann Louann, I new hear to, I sign up while back, just now exploring site, and you first I read. I feel you pain on memories and having members of your family understand. Don’t think they realize how very important it is to us. I currently seeking a therapist for my self and my husband and urge you to do same. I wish I had magical words to make it all better for you…alas I only human, just like you! I tired now, I check tomorrow and see if you want to talk me. May your day be blessed Louann
I’m new as well. Like you, I’m having a tough time! I had 3 aneurysms 8 years ago, and had the surgery to get them clipped. I completely lost my taste and smell, and have had no indication of these senses returning:( While I’m very grateful to be alive, it’s very distressing and depressing to have zero taste or smell. It’s especially difficult during the holidays when I no longer can enjoy my favourite foods. My brain tells me I crave the same foods and smells, so I keep eating, but can’t fulfill the cravings. I gained over 100 pounds, just desperately trying to taste something! Over the years, many people just tell me I’m lucky to be alive, and at least I didn’t lose my sight, my mobility, or worse! I agree wholly with this, but it doesn’t alleviate the facts, and my personal depression.
So happy somebody found your post and moved it over here!
Living with an unseen disability is very difficult, heck even we ourselves don’t always want to accept the limitations that are involved and those around us have no way to know what they are. Break a leg and nobody is expecting you to do cartwheels and would be pretty amazed to see you attempt to do so, yet it is just not the same reaction we get working with a broken brain.
Well this is the place to find acceptance and if you dig around the stories and responses you will also likely find some work arounds that others are using. I am a few years into this journey and constantly looking for or using work arounds. Also recognizing that these may seem petty to others but are kinda a big deal for me. Just last week my husband reserved us a table at a great restaurant that is always fully booked to celebrate my birthday but failed to mention I need to be against a wall (sounds only coming at me from one direction helps) and they showed us to a table in the centre of the room. I froze for a moment, I had a choice to make, I could take a seat and zone out and hope to make it through or I could go see the hostess and ask for somewhere else. It was that moment I thought you know what it is my birthday and I would rather leave and go to a drive through for take out than simply sit and endure, so I went to the hostess and luckily they were able to make a quick switch before another reservation arrived. Even though my husband was initially a little taken back with my standoff of sorts we both ended up having a really wonderful evening. I guess we have gotten to the point where I realize he is not going to always remember to accommodate my limitations and he realizes that I am not always going to simply endure them either.
Just a minute, Kellie2! Break a leg, and you are likely to get flowers, cards and casseroles! But when you have a rare condition, people just don’t. Don’t know what to say, don’t know what to do, don’t know how to help.
That, unfortunately, is the reality of having an unseen disability or an invisible illness. And that’s the beauty of Ben’s Friends: we get it. Everybody you meet here, other members, moderators and even ModSupport people and Administrators like me are all rare disease patients themselves. And that makes all the difference.
Seenie
My burst was in 1996. Some of the least supportive were family members. I was helped by finding (finally) a brain injury support group. When I spoke and looked around the room, I knew the ‘got it’
Recovery is a long process. Hang in there and don’t despair if you don’t get many responses . Remember the rest of us have brain injury and memory is not our strong point. I wish for you peace and success in finding local people who understand.
Hi Louann
I survived a burst aneurysm too. I read your post. I understand. I am fortunate to have support from those around me. I found this site, it helped me. The folks here have been there for me. I find reading the comments from others to be very comforting. Each of us is different. Mine burst on a business trip far from home. I don’t know how I survived, but I did. It’s been 5 years now since mine, and things are very different for me now since the beginning. You be you. Continue talking to us and anyone else you can. Don’t let anyone tell you how to feel, you are the only one who has been through what you have. Folks here, have had similar experiences, some not so bad, some much worse. I’d be happy to listen.
Ken
It pains me to read this Louann. For me, it has been 17 years and in some ways feels like it happened yesterday. The hardest thing for me to accept was the realization that my life would be different. I couldn’t go back. I had little information…the Brain Aneurysm Foundation was (and is) my source of information. Though I lost my job, a few colleagues became wonderful, trusted friends. Some of my good friends either disappeared or I determined it was OK not to contact them as they weren’t good for me. If there is a support group meeting in an area you can get to, I encourage you to pursue that. Unfortunately, my experience is that we tend to look OK so people don’t recognize some of our limitations. Lastly, in my quest for information, I found some books to be really helpful…“Rebooting my Brian” by Maria Ross, “Stir” by Jessica Fechtor. Another title, that I REALLY liked, escapes me. If you can read, it takes up time and exercises your brain. And, it helps to read what others are going through. It helps to realize you are NOT alone. Finally, I remembered I kind of liked flowers. Well, I thumbed through catalogues to find flowers I liked and when the weather permitted, I started gardening. Maybe you had, or have, a hobby that you can pursue full time. Knitting was a huge challenge as my fingers don’t work so well. But now I knit LOTS of hats. Just some thoughts.
Welcome again @rcaldwell 17 years surviving and lots of wisdom in your words, thanks for sharing! Hobbies are a wonderful thing to help rebuild our self esteem that’s for sure. We may struggling with a restarting of them, eventually muscle memory or our neurons finding their new path and we are back at it!
Your response also prompted a memory of a recent event. BH and I were downtown waiting for something to open and we walked into an antiques store. The young woman working was very engaging and eager to explain how her place operated, very different than any other antique mall. In this store, everything is organized by type rather than a booth for each vendor. She and I were talking and our aphasia seemed to increase. Come to find out, she’d been in a nasty car accident and suffered a TBI, the reason her shop was arranged differently. The woman helping her out had survived lung cancer and had part of a lung removed, BH had an ischemic stroke. Four of us with ailments unseen that seemed to bond us differently with one thing, staying positive through our trials.
Hi @Louann ,
I’m sending warm thoughts your way. This is my first day and first post on this site. I’m so sorry other people are treating you unkindly. You do not deserve that. I agree that a therapist that you like and trust can be helpful. I’ve seen a therapist for 8 years prior to my aneurysm surgery for unrelated issues. Every time I think I don’t need her, something else in my cPTSD complicated life comes up. We are on a 4 week schedule, one hour visits. I also see that you have things you enjoy doing. I hope you keep that up!
All the best,
Little Mouse (she/her)
Hi @ForestMouse
Welcome to our group that no one would like to be a member of, but here we are trying to hold each other up. I wish you all the best with your recovery.