Hi to everyone on here,
I really dont know where to start,but i guess letting you know about my story is a good starting point
16th march was like any other day...sun shining and weather was amazing...and to top it off was st paddy day weekend....means drinking and fun with friends.
decided i needed a break from my housemates and headed down coast for weekend to relax on friends yacht.....all was well having a good time.....it got to around 5am and was tired so decided i shall get some sleep and then wake fresh for what the day shall bring....i lay down try to sleep...and i go make myself comfortable.....but it dont happen....i feel this intense pain in my neck and a massive headache comes over me and i begin to throw up and have shivers....i have had this before and i take it as a tension migrane,but i call ambulance anyways to take me to hospital.....once there they decide that its a migrane and to go home and rest but if it gets worse to come back.....so i go back to boat...slept kinda ok but still didnt feel right......go have hot shower and then try relax....again i feel this mighty pop in my head but i am worse than ever this time round....cant stand and i feel like i am dying....dont matter what i do this pain just does not go....rushed to er...have a ct scan and dye put in to find out a anerism had burst and i now have blood on my brain......i go in for surgery the next day.....they have placed alot of coils in etc.....please excuse my story being all over the place as you read this...i was in ICU for a week and i lost so much weight even gave up smoking.....so glad about that......and was in and out from all these pain killers......its been over 2weeks since i had this happen to me...and i am so so very gratefull that i survived as my doctor said most ppl dont....and it may seem selfish of me to say this...as much as i am gratefull i am missing a bit of the old me....as i know with in myself something has changed....i am a little slower in how i do things....i get pins and needles now and then...my head feels pressure at times.....and i am very sooky ....was before but more so now.....and i feel like those who know me are not understanding of what im going through they seem to be attacking me....maybe im being touchy and paranoid...but its like....oh come on get over it your alive stop whining be gratefull ...or would you prefer to be a vegtable etc......i get what they saying....but hello.....your whole life changes from this......how about being understanding of that....i cant do nealy as much as i use to and might not be able to again......ok had my rant i dont know if anyone will relate to this but i needed to get this off my chest
I had the same thing happen to me this past month. I had a aneurysm rapture march 11th, it came out of nowhere and I lost consciousness. I was taken to the emergency room and sent home. But I was not able to sleep at all that night, went back to the hospital they did an mri and ct scan and I had surgery within 8 hrs of being diagnosed. I also felt those changes you speak of, I play music and for the first couple of weeks I would hear it differently, it felt like it was in a different key. I have some anxiety attacks some nights and ringing in my ears. No one does understand what you are feeling. It seems to me most can't relate to what you went through because people are still in that place where you and I were a few weeks back, where you don't really think about how frail our bodies really are. It's helped me a lot to read about my condition and connect with people who have also had aneurysms. Also helped to pray and meditate, I heard that high blood pressure is not good for you so I am trying to stay at peace with everything. Don't think about what you lost, we are both lucky to be alive, and if anything we gained knowledge and a new perspective and a reminder that we have a purpose here and we have someone watching over us. I wish you luck with everything, feel free to contact me it would be great to be friends and help each other out, since we both just went through the same experience within days apart. :)
i totally agree with you there Pamela.we are here for a reason,and im glad.i struggle with sleep at night as i am stil taking my meds every 4hrs...i get the odd ringing in my ears as well and sometimes my hearing feels like it goes for a bit...and i get some pressure....its amazing how all these things happen to you....think the hard part is knowing i feel different and excepting that it may stay that way or it may get better....but it helps knowing that i am not alone in this and their are others who are going through the same....and for that i appreciate this site and group even more......today i didnt feel alone
You are not alone! I am 9 yrs out from bleed and experienced same things-I call it hidden handicup-I look norm but don't feel it! It does improve w/time-prayers are w/you:) mjf
hi Simone! wow!! you have a knack for detailing your experience and your felings(and others) on paper. Thanks for sharing- it somehow helps me- to share and also to know others have the same experiences. I hope you are improving so i'll keep you in thoughts and prayers!
I feel the same way and I did not have a rupture. I had clipping surgery on September 17, 2012. I did have a hemorrhage during the surgery, though, so maybe my deficits are similar to rupture. You are right people that haven't experienced what we have gone through don't seem to understand. It is nice to know that you aren't alone in this, though. We are here for you. You are in my thoughts and prayers.
Ah again Welcome Simone...first of all, you have been through a big life changing thing...and no one really understands other than those who have been in your shoes...and to be honest it takes along time to see the "new normal"...and that takes much rest for your brain...those who love you will understand...this is a long journey...and you need to be around people who try and understand and care...~ Cyber~thoughts your way ~ Colleen
Hi, Simone. Below is the information I located on in the joeniekrofoundation.com January Newsletter. Hope you find it helpful to share with those who think you may be being a bit touchy. =/
THINGS NOT TO SAY TO SOMEONE WITH A
Explaining the effects of a brain injury to people that haven’t had one is difficult. It’s natural to want to say something, to
voice an opinion or offer advice, even when we don’t understand.
When you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.
Here are a few things you might find yourself saying that are probably not helpful:
1. YOU SEEM FINE TO ME
The invisible signs of a brain injury—memory and concentration problems, fatigue, insomnia, chronic pain, depression, or
anxiety—these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on
the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but
shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling
than a limp.
2. MAYBE YOU’RE JUST NOT TRYING HARD ENOUGH (YOU’RE LAZY)
Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain
injury and can often get in the way of rehab and recovery, so it’s important to recognize and treat it.
Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can
look like (or be combined with) apathy. Try to discover the root of the problem, so that you can help advocate for proper
3. YOU’RE SUCH A GRUMP!
Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side
effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. It can come and go without reason.
4. HOW MANY TIMES DO I HAVE TO TELL YOU?
It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory
problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo
board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and
clear just by facial expression.
6. YOUR PROBLEM IS ALL THE MEDICATIONS YOU TAKE
Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual
dysfunction, or weight gain, to name a few. Someone with a brain injury is especially sensitive to these effects. It’s a good
idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side
effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without
7. LET ME DO THAT FOR YOU
Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for
your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote
self-esteem, confidence, and quality of living. It can also help the brain recover faster.
8. TRY TO THINK POSITIVELY
That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking
is called rumination and can be common after a brain injury. Rumination is usually related to depression or anxiety, and so
treating those problems may help break the negative thinking cycle.
Find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking and release
chemicals that promote more positive thoughts.