Im pretty sure I went through some kind of PTSD after my brain aneurysm rupture and clipping surgery. For the longest time afterwards I had trouble coping with reality and wondered why I had survived. I thought a lot about what would life be like for my loved ones had I not survived. It was almost like I was living on borrowed time. It felt sometimes like I was living but looking into a portal of what would have gone on in the world had I not been here. It was all strange to me. I celebrated each month afterwards by saying to myself āits been 2 months, 6 months a yearā after my surgery and Im still here. Now its been a little over 7 years. I donāt think like that to the extent that I did back 6-7 years ago but occasionally I still do. Has anyone else gone through something similar to this? Please post if you have, I would like to know your story.
Hey Peter,
OHHHHhhhh YYEEAAaaaaaaaaaaa. Very much so.
But like you say after a while it gets less. I never really thought of it all in so much in terms of PTSD, but I am still very much aware. Initially every little twinge every little ache and I was āIs it back, is this itā¦ā but overtime that has reduced. I wonāt say itās gone, just reduced. I try to keep myself occupied because I know that if I sit down and really think about it all I can lead myself down some really dark holes.
Iāve tried to learn what works and what doesnāt and I have a few things to occupy myself with, because too much free time sends my mind wandering and thatās never good. I know itās there but I try not to concentrate on it too much. Iāve learnt to look for a progression of symptoms. If they are getting worse, then I act.
Sure Peter, PTSD is pretty common after a traumatic event. Iām not sure questioning why youāre alive, etc is PTSD as much as it is just a survivor issue. But everything is dependent on your personality. Iāve had three coilings and for us it was the count down for the two year mark. When I first woke up in ICU, I was able to state names and a promise I had made in my 30ās, 20 years or so earlier. Because I was in NeuroICU for 26 days, I saw a lot of folks who decided not to struggle anymore. To celebrate each month, then year is a positive outlook in my opinion. I think of those folks each time we celebrate, and think that their struggles were just too much to overcome for them. Last November, I finally reached the point with my doctor that she doesnāt want to see me for two years. I ruptured five years ago. I called a lot of family on the hour drive back home. And though itās been a couple months, I still tell those folks I donāt need to go back for two years! Some say they know and think I forgot I had called them, some get as excited as I do, and give me a hug or a high five and we get a laugh. We didnāt get to have the thank you dinner that we always do around the day of my rupture to those folks that keep supporting us through the year as I have different limitations now then I did six years ago. Having no thank you dinner is what I call it, friends call it something else, it has been odd for me. But a nephew got married in another state. My outlook in life has changed a little bit, but itās still to stand up, brush the dirt off your knees, take another step and bring someone up with you.
Thanks for the reply. I was even scared to sneeze when I first came home from the hospital. There are triggers for me that bring everything back and get me thinking about it again but time is the best healer.
I think you are correct Peter, pretty sure we all go through some sort of #liferethinking after any aneurysm procedure. I have found it affects those that love us also. I believe my husband lives in as much fear or more than I do. He sometimes even (through his coddling) makes it hard for me to forget and move on You are correct, a sneeze, a trip to the bathroom even the simplest of tasks can make you think. It is two years out from my first procedure and 5 months from second and just recently thinking I may need to see a counselor to get myself back on track, figure it canāt hurt. Happy you, and I, have this forum for support and advice. Always helps me to know my fearful, crazy, weird thoughts arenāt any of those thingsā¦just normal when faced with this new āaneurysmā life. Sending good, positive thoughts your way from frozen Minnesota!
So I forgot all āThe Rulesā until I just read this and LO44 replies. I had forgotten the no straining, no blowing your nose, etc. About year 3, the doc added no napping. AARGH. I do nap occasionally, for an hour or two, depends on how deep the dogs breathing is
Itās been 12yrs since aneurysm ruptured. Right frontal lobe,AVM (?) joint.
Yes, I experienced what you have described. Some of my behavior in the beginning of my recovery was severe enough to destroy my marriage with inappropriate sexual behavior. It also didnāt help th I became addicted to the pain meds for the migraines.
At this time I have been opiate free for 3ys. Trying to work on my marriage.
Neurologist,internist,pulmonologist, and therapists are the lists of my doctors.
I still canāt tolerate loud noise, bright lights (wear sunglasses at night, due to headlights, emergency vehicles are the worst). I hate the fact that I no longer attend concerts, due to loud
Please forget my statement above ā¦ Iām feeling down right now, very frustrating. I try so hard. I really do
I have to be thankful for this time. 2 of my children married, 3 Beautiful Granddaughters. These alone make life grand
Itās been 8 years since the clipping of my right posterior communicating artery. For the first 2 years, I was fine, total bliss I believe but like others mentioned, often wondering when will it happen again, the only difference was that I was praying I wouldnāt survive. I have been dealing with PTSD for over 6 years and it gets even more complicated with so many new health issues to complicate matters i.e Iāve got a thoracic aneurysm taunting me. My PTSD got so bad that I was suicidal. Iāve been diagnosed with bipolar-schizo effective, because I hear and see things that others canāt. My daughter said she believes a part of my brain was awaken and I am just more aware/sensitive than others. Iāve also been diagnoses as BPD (borderline personality disorder) ,MMD (major depression disorder), severe anxiety and the question of if I am experiencing simple partial seizures is still on the table as well. Loud noises, sudden movement, smells and peripheral disturbances and other nuances plague me daily, sometimes to the extreme. Every headache, shooting star in my vision, migrane without pain, numbness and tingling sensation, sudden muscle jerk (the list goes onā¦) freaks me totally out. Iāve learned to control my reaction in public as not to freak others out. Family members and friends are estranged, my world is devoid of conversation and laughter. I often think of the movie āFinal Destinationāā¦hmm? Again, as someone mentioned above, it gets easier with time and I know my time is coming. @Peter_Wison, if things get to much for you and you find it difficult to cope, please reach out to your doctors, let them know what is going on. I wish you and others the best of the best.
Oh, and I sincerely apologize for making this comment to long and perhaps for sharing to much (it was therapeutic for me) and freaking some of you guys outā¦please charge it to my head and not my heart.
Hello,
I am a few days short of 8 months out from my rupture and craniotomy, and I can say that I have days I definitely feel like there is some PTSD. I still cannot sit on my couch ( it is where I was sitting/sleeping when my aneurysm ruptured), and I think my husband thinks Iāve gone mad. I am still convinced that it may happen again and I want to be ready. I have been so stuck on keeping my house clean and myself ready ājust in caseā it happens again. I know that I canāt live my life like this, and I am so very thankful and blessed to be where I am at. I just canāt help but think about it most days. My husband is also very protective, as is my mom, and they give me a hard time with a lot of the things I do. No shoveling, No going for walks by myself, etc. As much as I think about it, I am so ready to get back to my life! I am so thankful I can work and run with my children, but sometimes you canāt help but flash back to that day and just have a bit of fear of it happening again.
Kgrip, I would say a few sessions of therapy could do you some good in gaining the proper prespective.
PTSD is not unusal. Itās actually very reasonable based on the level a trauma you experienced but you do have to learn how to manage it and how to get back to your life. You donāt want your past trauma ruining your current day!
For me, no napping was about year 3 after SAH and two subsequent coilings for the same multi lobed aneurysm. I still had to nap for a few months after the angiograms. But I was napping so much that it bothered me. Neurosurgeon suggested to stop the naps, so it took me awhile. I didnāt nap so much after my parents died, as I had become their caretaker. Now, if I overdo it, I donāt nap, usually, but I do rest. And if the dogs start their heavy deep breathing, wellā¦that sound is better than a sleeping pill lol
It was my doctorās suggestion for me. If I overdo it, I still need to rest, but I donāt lay down anymore. I try to stop for a bit. If Iām doing something physical, Iām usually ok, walks are the best! If Iām bending a lot, well that effects my tremor. Iāve found if I take a 15 minute break every hour, Iām good. Unless itās bending, the. Itās work 30 minutes, break about 20-30 minutes. And again Iām 5 yrs 3 months from rupture.
It took my friends and my partner a lot longer to relax with everything I tried to do. I know we are the ones who experienced the rupture, but they are the ones who couldnāt do anything but stand aside and wait. I often think itās harder on our loved ones than them. I finally had to sit everyone down and explain I needed to get on with my life, that it had become more about quality than quantity. The first time I went down to the cellar where I ruptured, I ripped my arm coming back up the stairs. I was alone at the time but I wanted to try. When youāre ready, sit on the couch for five minutes and work up to longer. Azurelle has given you some great advice with therapy and becoming the master of your own ship so to speak. We really need to define ourselves not by our rupture, but who we are as a whole.
Thatās the hard part, talking about it. This forum helps, as not much of my family fully understands. Donāt get me wrong, they are concerned and helpful and protective and try to be understanding, but they donāt really get where I am coming from. I am back to work for both jobs that I do and back to running around and enjoying watching the kids. It just sneaks up on me sometimes.
I think they will all be very protective for as long as we all live. I feel more affected by how they felt, than how it changed my life. Thinking about my husband and my mom sitting in that hospital or even at my house when the ambulance came, breaks my heart! That is one of the big things that can bring tears to my eyes pretty quickly at the mention of it. Also, my kids and how tough they were gets me every time. When my husband tries to stop me from doing things and tells me Iām stubborn my response is always āIf I wasnāt as stubborn and strong willed as I am, I may not be here todayā and then he agrees and retreats. I think having people who have been through either the same or similar situation as I have, helps me more than talking to someone who may not have any idea what it is like. Iām not ruling out talking to someone, but I do get some consolation from talking to others on here and I do wake up every day feeling great. Great about being alive and able every day. Taking advantage of every moment, enjoying even the small things until I canāt anymore. You never know what tomorrow may bring!
I think I allowed those I love to have more control over my healing than I should have. But it was easier than to argue. I still have to learn to pick my battles. When I had my evaluation done, the psychologist I went to specialized in brain injuries. If you or your family just need to touch base with someone, try a therapist who specializes in brain injuries, perhaps a CBT. We donāt have an aneurysm support group in my county and Iām not able to drive in cities where they do. Iāve never tried a TBI group but was told that I probably wouldnāt get the support I needed from one. That makes this online group so important!
I can understand how that could happen. It is very easy to listen to the people around you and not enough to your own body. I also do not have a support group in my area and struggle with driving in big cities. I donāt know that there is an aneurysm support group in the hospital where I had my surgery, but there is a brain injury group. However, it is over an hour away in lots of traffic. So, Iām relying more on this group which is very helpful!
You are correct, a sneeze, a trip to the bathroom even the simplest of tasks can make you think. It is two years out from my first procedure and 5 months from second and just recently thinking I may need to see a counselor to get myself back on track, figure it canāt hurt. Happy you, and I, have this forum for support and advice. Always helps me to know my fearful, crazy, weird thoughts arenāt any of those thingsā¦just normal when faced with this new āaneurysmā life. Sending good, positive thoughts your way from frozen Minnesota!