iola

Hi Steve, Incredible story. The cause of my bleed was never found either. I'm at almost 14 mos post bleed and still patiently waiting for my full recovery. I completely know the feeling of dread and the pain you felt and boy do I remember the stiff neck. I could not move mine and the pain was just excruciating. I am so glad you posted your story. It helps to connect with others that do understand. Iola

Hi Ben, I so sorry this happened and you were told it was simple neck pain. I have read so many stories on here of being misdiagnosed. You are so blessed that you were finally taken to the hospital and they found the SAH. You've been through a lot. How are you feeling? Please do not do too much. I am a little over a year and still have headaches and dizziness and I'm sure part of that is I do way to much. Pace yourself. Iola

Good grief I never wake up refreshed or feeling good. I do not sleep well and normally wake around 2 am and do not fall back to sleep until 4 am or so. I have to prop myself up to sleep. It's a real bummer. Then I'm up by 7 am. I must get in the shower to start feeling normal and many times eating makes me nauseous so it is not til around noon I start feeling decent. I

Hi Jan, My bleed was not from a major artery either. Mine was an unknown source and believe it to be a venous bleed. Since mine was non aneurysmal they consider it a NASAH, which simply is a non aneurysmal subarachnoid hemorrhage. Many on the site have had a bleed similar to yours. The drs leave you wondering and frightened, I think. I was terrified in the beginning. I do hope you are doing well. Some folks are back on their feet quicker than others but don't fret and take your time and drink plenty of water! Iola

Good grief Susan, You were walking around the week you left the hospital? Wow, no way I could do that back then. I know how you feel about not quite feeling like yourself anymore. I push to forget, to feel alive, to not think. You were at the Inner Harbor? Very cool place. Science Center is awesome. I hope all went well with your son. Did you go to Kennedy Krieger? My friend has an autistic son and takes him there. Giving up is never an option. Iola

Hi Tony, I am 13 months in and your post is very insightful and gives me hope. You are the second person in the last two weeks to say it is important to pace yourself. Thank you. It's like we are in a race with ourselves sometimes. Iola

Win, CT is easy stuff. Looks like a big doughnut. Yum......doughnut. Hope all is well. Iola

Hi, Please don't feel lost. After mine happened I was so sensitive to everything. I felt so bad all of time I could not find any humor in what happened. I've eased up a bit now and the other day at work a guy was telling me about his high blood pressure and weight gain and I laughed and said, "you'll have to do better than that when talking to me, I had a brain hemorrhage and almost died." On flip side, I think most do not know what to say or how to react to what happened to us so the typical alternative is to make lite of it and joke. Trying to somehow see a positive in this nightmare we survived. It's not funny, it's hard so tell them it's hard. You have a right to be sensitive and if it hurts your feelings tell them. I had a melt down a couple weeks ago because I felt bad and kept dropping stuff and fogetting things, etc... So, you are not going to ever walk a tightrope and you will have to start writing things down to remember and you will have your meltdowns from time-to-time. So what. You EARNED it. Smile. Iola

Great story Casey. Yes, I say to myself all the time, "well, if my head were to explode again it would've done it by now." One of the very reasons I push myself. I

So true about fatigue and others expecting so much of you. My husband still says he can't believe it's taken so long to heal. Heck, I'm still healing. Not sure if that will ever stop. I do push my limits and I also do crash. So frustrating at times. Daff, it makes sense what you said. I never really thought about it that way. Patience was never part of my vocabulary but it needs to be for me and my family. I push and force this tired brain of mine to do more and more. Dawn, I am sorry you are not feeling well. I do hope you open your eyes soon to a 'feeling good' day. I pray every night to open my eyes in the morning to a healthy feel good day. I

So right. It's like I'm trying to prove to myself I'm okay.

Hi all, Let me begin by saying the last two weeks were not good for me. The weather has been rainy and my head hurt and felt off kilter. I had my NASAH a year ago and I was so hoping to be past more by now but I do know how fortunate I am. But, even with the headaches and dizziness I push myself to do more. I notice when I am very active I do not feel as bad. So, I will plant my garden, cut the grass with the push mover, walk 2 or 3 miles, dig up old bushes. Literally anything that requires physical labor. I feel "normal" when I am doing these things. Now, when I stop to rest that's another story. Resting never makes me feel good, if that makes sense. I find myself pushing more and more. I keep saying to myself, "if it is going to happen again it would happen now." Although, when my bleed occurred I was doing nothing but sitting. It's kinda like testing myself over and over agin to see if I can do these things without getting sick again. It's 3:00 am here so I hope I am making sense. Anyone else test the boundaries? Iola

Hi, This time last year I was miserable. It was Spring and I was trying to survive this SAH. So, feeling like I did not even notice nor care that Spring was here is an understatement. All I wanted to do was survive and nothing else really mattered. I just wanted to feel better. Noise bothered and overwhelmed me. There is nothing wrong with wanting quiet time and needing it too. This time in your life it about you getting better. Do not feel guilty for how you are feeling. We all need our time to come to terms with all that has happened. iola

Hi, I would definitely call your doctor but I'll also tell you what I was told when I was six months out. My dr told me that you will have times when you feel like you jump forward and times when you feel like you are rolling backward. I understand exactly how you feel. I am one year out and this past week has been horrible. Headaches and dizziness every single day. I ended up having a melt down like a child. Talk to your dr for reassurance. Iola

Hi Kerry, My bleed was from an unknown source. Never found the site of the bleed. Pretty scary stuff. My daughter was 7 yrs old and that is all I thought about. i do hope you are doing better. It sure does take a long time to heal. keep us posted on your recovery. God bless iola

Hi, I would get the shakes every morning when I woke. I had to get in the shower to calm myself and wake my body up. I still get them from time-to-time now too. Iola

God bless you. What a story and what a miracle you are. I cannot believe the stories of being misdiagnosed. Take care mum of five.

Wow, I did not know DNA testing could show that. Interesting.

Yes Susan, I do believe there is a direct correlation. I never had the wierdness I do now. Until they experience what we do its a bit of a guessing game for the doctors. My neurosurgeon in PA even told me they just do not know why some folks recover faster than others. The brain is a mystery to them as well. Iola

Hi, yes, I know exactly what you are talking about. It's a feeling that comes from nowhere and hits you in the pit of your stomach. All of a sudden I would get these heavy feelings of impending doom and fear. I normally had a panic attack directly after. In the very early days I had horrible feelings of death and worrying about my daughter and the need to stay alive and the fear I would not. It still happens occasionally. Iola

Sandi, I notice toward the end of the week my focus is way off. I am tired and feel pressure in my head. Let's me know I am tired. I have also noticed I have trouble concentrating. I have a 200 page contract to read and I start but it does not take long to lose my thought process and simply not care. Iola

I am so sorry to hear this Susan. I know it is difficult especially with a child. They take quite a bit of energy. My neuro, which I do like, seems to think my headaches and random pains are from nerve damage and not from the SAH. Well, I have news for him, it is. Yeah, this SAH is for the birds. I do hope you are feeling better soon. Iola

Hello all, Well, today is my birthday, my real birthday and I am so happy to say, "Happy Birthday to me!" This time last year I had no clue that two days from now, April 9th, would change my life forever. I have found that celebrating another year of life is a privilege. I don't care I am another year older, I am just happy to be here. It has taken a year for me to finally start feeling better. Am I 100%? No, of course not but I am a far cry from when this all began. Am I happy this happened to me? NO!! I am not but what I am eternally grateful for the love and kindness of my family and friends and the people on BTG that have become my shoulder to cry on and the folks that were the only ones to say, "you are gonna be okay." That has meant so much to me, especially during the lowest of the low times. So, to my friends near and far, thank you, thank you, thank you. It is a pleasure and a privilege to know you and to learn your stories. They are amazing stories and have helped me to build on my "new" character and to know I am not the only one. I pray for this group every day. God bless us all. iola

Don't ever be embarrassed or ashamed. Hey, I was supposed to have an MRI last week and couldn't do it. They put me in the tube and within 5 seconds I said to get me out. I was sooooo embarrassed. And, if it makes you feel better when I am at work I completely zone out in meetings and if someone talks to me too long I couldn't tell you what they said. I tune them out. It's like, blah, blah, blah. Smile, you are a beautiful person. Iola

Hi, I am just gearing up for my one year mark and I do understand the feeling of isolation. This is the only site I've found that treats everyone with respect regardless of the severity of the injury. On other sites I've been disregarded as not being injured enough, as silly as that sounds. My sister just said yesterday that she did not need the stress I was giving HER because her daughter backed out on me at the last minute to babysit. Somehow I'm the bad guy. Ugh. Since I look okay I'm SUPPOSED to be okay! It can be a lonely world without folks that understand. Iola