Sandi K

Hi Jan, welcome to BTG! Everyone here is so supportive! Sandi K. Xoxox

I love the detail in your story, thank you for taking the time to write it for us. You sensory experience is 10 times mine. After reading your story I sat quietly to let it sink in. I can imagine it slightly because I had the noise but my eyes and eating weren't affected so much. I couldn't watch TV with the sound on at the same time. I could listen to the TV quietly but not look at the screen at the same time. I could hear the dishes and glasses in the kitchen cupboard touching each other! I hated being in the kitchen with that noise. I heard each individual rain drop, which meant all thousands of rain drops were like a stampede coming toward me. Peter coughing sent me around the bend. I still have heightened auditory senses but it has faded significantly. I like the quiet, I don't watch TV in my bedroom anymore. I used to be a news junkie and now I don't like any bad news stories. When I'm tired I still have trouble with noise but it's not nearly as bad. I hope yours fades with time too. The brain is an amazing thing. Sandi K. Xoxoxo

I don't know how they differ but I wonder if it has something to do with UK, US, and Canada using different terms for the same thing? Angiogram negative, does that mean nothing was found during the angiogram? I've found lots of US sites where they call any type of brain bleed a stroke. It's all very confusing. My neuro said I definitely did not have a stroke. But there are websites that call NASAHs a stroke. Perhaps it just depends on where you live ?

Love your name! Welcome to BTG, I'm glad you found us so soon! It took me a month and a half to find this site. I had a NASAH too. I'm 46. I was walking/running 21 to 28 kilometers per week on the treadmill. I had taken a break from it but was working my way back up and after 2 weeks had my NASAH. It was a very stressful time at work. I don't smoke, hardly drink, and eat well. I'm amazed, in awe, chin on the floor, that you are already out there hiking! Good for you, please be careful and make sure you are also resting. I believe physical excercise is a necessary part of recovery but go easy. I'm three months since my NASAH now and I'm doing 3 to 9 kilometers a week. I'd like to do more but it knocks me out. I walk my dog every day, that gets me outside. I'm on the west coast of Canada so about 3 hours behind you. Please read Surfer's posts, he's quite athletic and also had NASAH. I'm really glad you found us so early, this site is full of info that just can't be found anywhere else. These people are fantastic, they are supportive and caring and kind. Anytime you feel weird or have questions please come here. PM me anytime. Sandi K.

Hi Sally! Non aneurysm SAH (NASAH) and perimesencephalic are the same thing. I can't remember the true definition, I broke the word down one day but my tired brain can't remember what I came up with. It means I had a brain bleed with no aneurysm and no known cause. Sandi K.

Hi Nessie, Isn't it wonderful to find this site! I too was overwhelmed and cried and cried as I read the stories. And then when everyone welcomed me I cried and cried some more! I still cry but I laugh too! Like Traci says, it's up and down. But Kel says the crying lessens and that's hopeful for us. Nessie, I'm so glad you found us. You aren't alone hun. Wish I was there to hug you. Sandi K. Xoxox.

Lynne, you are a really good role model for us, the way you pace yourself and share with us is beneficial to all of us. I just need to listen! It seems as though you have found an opportunity to test your stamina in a very supportive environment. Thank you for sharing what you are learning with us. I need to hear it. Actually, I think I need someone to hit me over the head with it! It appears I'm a slow learner! Good luck with the Shaw Trust Lynne. They are lucky to have you. Sandi K.

Kelv is right, lots of good advice and support from the warm hearted people on this site. I don't mind you asking anything. My bleed was at the back of my head but I don't know exactly where yet. In Canada the scans and other info aren't given to the patients but I've since learned I'm legally entitled to it if I ask for it. I meet with my doc next week so I'll be asking. I can't wait to find out, knowing the location of the bleed might explain some symptoms. I've just had my three month anniversary. Some days I feel pretty good - almost manically good which is scary cuz I trick myself into believing I'm all better and then when I do too much I fall further down later. I've come to terms with the fatigue and I give in to it now. Still have trouble with the dizzy, blurry or double vision, sore arms and legs, elastic band around my head, sore face from front teeth up through sinuses and to temples, most of the physical stuff comes and goes. What seems to be sticking around consistently is the cognitive stuff. I can't calculate, I plug the wrong numbers and the wrong sequences into the calculator. It's bizarre because I think I'm doing it right but the answers are so obviously wrong. But I still can't figure out how to get the right answer. It's scary because that doesnt seem to be getting better. Do you have cognitive issues and what are they? Has it gotten better? I went back to work too soon. Everyone here told me that but.... Well, I think I'm right all the time!!! After jumping in with both feet and gradually scaling back I'm now completely off for at least a week to rest my brain. My boss said I cut back on the hours but not the volume. I'm a nut. Chris, are you back to work? Sandi K.

Hi Chris! Welcome to BTG and thank you for writing your story. Sounds like you came close to never coming back. What an experience you had, that's amazing! In comparison mine was rather dull, I just didn't believe what was happening to me was serious (regardless of the pain) and that I'd better leave my work pants on because I'd be leaving hospital soon! Chris, was your SAH perimesencephalic? Sorry if I've spelled it wrong. That's what I had. NASAH, non aneurysm SAH. You are coming up to your 9 month anniversary, how are you feeling now? Everything I've read on the Internet says we should be fine but there isn't much info available on recovery and long term deficits. Surfer also had a NASAH and he's posted several informative links on one of the forums. I look forward to talking some more. Sandi K.

Di, great news about the outcome of the tests! You and Mark must both be relieved! Vicky, the front face/sinus thing hasn't let up. Even my front teeth hurt. I dont have a sinus infection, I can breathe. It just hurts all the time. I get the burning head, its very much like during the angiogram every few days. Feels just like the angiogram. Onwards and upwards as we say!!! Sandi K.

Surfer, I meet with my doc in a week and I'll be asking her for copies of everything. Its not normal in Canada to get copies but we are legally entitled. My occ health advisor is telling me to ask for everything. Will let you know when I get the info. I'm perimesencephalic, I just can't spell it! Sandi K.

Hi Chris! I read on the Internet last night that it's common to have weakness on one side or the other after SAH. You should go to your doctor to check it out and put your mind at ease. I have sore arms and legs and they get shaky and weak, and very heavy. for me it's fatigue. I know it's time to lay down when they start to tingle or ache. Sandi K.

Have a good time Donna! Just close your eyes if it gets to be too much. With the earplugs to take care of the noise if it's too loud you should be fine. Have fun! Tell us it goes. Sandi K.

Stuart, congratulations on your 2 hours! It does feel so good to contribute again! I really like how you are scheduling short hours and gradually working your way up slowly. You have a chance of success by taking it slow. Dawn, u are right about it being nice to be back with friends at work. I don't think of my work colleagues as friends but there is definitely a social element to work. All the meetings, the planning, the oordinating, the joking, the sense of accomplishment, the rewards of a job well done. Not being able to perform at the same capacity is a huge blow to my big ego. Im meeting with Occ Health tomorrow and I plan to scale back even more. I jumped in too early and took on too much. And why wouldn't I? My neuro certainly didn't give me any warning. Michelle, it must have been so hard during that two years of work. I bet you felt like all you did was work and sleep and work. Now that you are looking after your son and have that financial pressure in the back of your mind it must be stressful. Somehow we have to get to where Lynn is. So that we accept our abilities, respect our wants, and still be able to pay the bills! Sandi K.

Hi Michelle, I get the flu shot every year because I work in hospitals so I haven't had the flu for years. I've been really lucky since my NASAH in November, I haven't even had a cold. I'm really careful, the last thing I want is a head cold, especially after reading the posts about how awful it is after a SAH. I'm guessing that our immune systems are vulnerable when we're recovering because all of our energy is used by our brain. Sandi K.

Hi! My vet says there is lots of fibre in it.... Don't think I'll be trying it anytime soon either.

Hi Kukashika, welcome to the site. I'd never heard of the ISAT trial. I just googled it. Please tell us more about yourself and ISAT in 'introduce yourself'. It sounds very interesting! Glad you found us! Sandi K. Oops, I just realized you've been on since June. Perhaps I just haven't found your story yet.

Jan, very big decision. I think I would want the doc to just tell me what we had to do! I'm glad you've got family to discuss with and lots of people here who have been through it. I haven't had any coiling or clipping myself but I can imagine how hard your situation is right now. Sandi K.

Harry, welcome to BTG. I'm still new here, today is my three month anniversary since my SAH. I've asked lots of questions and read many of the threads. The posts go back to 2006 so there is a lot of experience on this board. Many of the people who were here at the beginning are still here today. Thankfully Karen started this and we're all benefitting from it all these years later. From what I've read in these many threads it seems that some do recover 100%. We're all different and our recovery times differ. Those that recover 100% don't necessarily go back to being the same person as they were before. I'm currently assessing my own situation and wondering if I want to return to the same pace or do I want to spend time on things other than just work. This life threatening event makes us question our direction. Some of us have life long changes from the SAH. Things like vision, headaches, dizzy, and so on. Everyone says that it can take months and sometimes years to really know what is sticking around for life and what is temporary as we recover. The biggest message to me has been to slow down and take the time needed. I went back to work too soon and that's a common mistake. I've already dropped my schedule by some hours but I'm about to do it again (yes friends, again you were all right!). We go through the multiple stages of grief. I don't know what they all are but for sure I've felt shock, denial, anger, and I'm struggling to find acceptance. For the most part I'm in good spirits but just like everyone else here I've felt anxiety and great sadness and very very very very tired. Share what you read with your family. They are learning just as you are. I'm so glad you found us! Sandi K. Xoxoxox

Vicky, welcome to BTG! This group of people are very supportive and without them I'm sure I'd be over the edge. My SAH was Nov 10 and I found BTG mid-Jan. Anya recently pointed out to me that we can find lots of member's stories under 'my story' on the home page. I've been immersed ever since. I find it helpful to read what happened to everyone. We aren't alone! Sandi K. Xoxox

Hi Vicky and welcome! Post NASAH I'm tender from the front teeth up through my sinuses and between my eyes. Sometimes it hurts and sometimes I'm just aware of it. My bleed was at the back of my head but I have no pain in that area. I've always had mild allergies and have wondered if there was some connection to so many years of stuffed nose and runny ears and my head popping. Hope you are able to kick it soon. Sandi K.

Rhiann, I agree with you. The docs should better prepare us for the reality of it. I felt better 2 months after my NASAH than I do at 3 months. Based on everything I've read on here it's because I went back to work too early. I too wanted to feel normal. And... My neurologist told me I could return to my regular routine. Whatever! I'm tempted to buy a second copy of 'a dented image' and send it to him. Sandi K.

Wow, this speaks very loudly to me: I felt that my life had been saved for more than that.

Hi Surfer, I was in an extremely stressful meeting at the time of my event. I had been dreading the meeting for days beforehand. I had taken a 5 month break from the treadmill and start up again about 2 weeks prior to the NASAH. I always work my way up though, I don't think I overdid it on the treadmill...? Sandi K

Anna, Sarah is right, hold your mum's hand and say everything you need to say to her. It's so important. I have a friend whose mum recently passed suddenly and the biggest regret is not saying what she needed to. Sweetheart, I wish I was there to hug you. I can't imagine how hard this is. Talking is important, talk to your family. Talk to whoever will listen. All my hugs to you, Sandi K.