Riane

I haven't been around here for a very, very long time. Life with children (13 years and 4 years old as of today), family and all the rest is a busy thing. I just got a pm from someone 9 months post-SAH, looking for info about my experience. I responded, then I remembered how incredibly helpful and useful BTG was for me in my first weeks post-SAH. The doctors told me I was fine. I knew I wasn't "fine". But it took me a while to realized that what they meant was there was nothing they could do for me. Thank goodness I finally found BTG and all the helpful folks here. So, I figure by posting this I might be one of the helpful folks for someone else coming along post-SAH, confused and looking for answers, direction, clarity, or at least a little flashlight in the darkness. So, here's my story: I'm now 2 years and 3 months post-SAH. The best way I can describe it is in computer terms, which makes sense if you think of the brain as a Central Processing Unit (which it is, just a biological one as well as an electronic one). Looking back my experience was something like this... My brain crashed and needed to restart. Many programs remained "off-line" for several months. Through reading Jill Bolte Taylor's book (have you read it? you should) "My Stroke of Insight" I suspect my bleed was in the right hemisphere of my brain (since there was no aneurysm the doctors couldn't tell me where I bled, only that I had bled as by the time they got a look my basal cisterns were flooded). I think this because my linear reasoning was never affected nor diminished (however my ability to make connections was severely disabled). My speech, pronunciation, vocabulary, motor skills were all normal (though I was incredibly tired). The doctors told me I was fine and should slowly get back to my normal life. Maybe take a couple of weeks off. Months later I was telling the doctors I wasn't fine. There were things missing. I am an artist and dancer and when I went into my studio it was like I entered into a fog of pea soup. It was thick, confusing and exhausting. In retrospect, part of that may have been due to non-essential services being off line while the organism of my brain healed itself. Over the course of the first 6 months I had several waves of "programs" coming back "on-line" and being available to me again. For Christmas I got the ability to dance and to be social back again. It was such a beautiful present. That was the last significant "wave" of restore. A few things trickled back after that, but nothing as noticeable as the previous waves (a wave was like all of a sudden I could "think" my way through things I hadn't been able to make any sense of the day before). In the first few months, before my artist's brain came back on-line, I was searching for some sort of stroke rehab to help with my right hemisphere recovery. However, most/all stroke recovery programs are based on restoring left-brain function - language, linear reasoning, physical acuity. Our society doesn't value the more artistic pursuits - making connections, spirituality, creativity, and so much more that is of deep value to me, as an artist and a human being. That was a difficult time for me as much of what I value about myself was taken from me. I was sad, but I also believe in brain plasticity so I just had to keep reminding myself of that and give myself pep talks several (or more) times a day when I got frustrated about not being able to do something I "should" or used to do, or wanted to do. After the initial 6 months of recovery waves, there was another 6 months of very inconsistent energy. I would get tired suddenly and there was no rhythm to map out or predict what would exhaust me. Just all of a sudden I was exhausted. At the time I had a 2-3 year old. This was extremely challenging for me and my family. I just kept checking out on them. I spent a lot of time lying alone in the dark, or in my studio lining up my pencils and/or paints in order by colour (I felt it was important to log studio time, even if I wasn't producing anything...I just needed to spend time there), or whatever quiet and restful time I could spend. I was working 2 days a week by that point and I was able to manage that, though it was a deep energy sucker. By the time I was at 9 months, my cycle became work on Monday, take Tuesday off from everything, work on Wednesday, take Thursday off from everything, kids home on Friday - be the Mom till hubby home from work, go to bed exhausted after dinner, Saturday and Sunday Mom when I could, retreat when I couldn't. That was my life schedule...but my energy usually didn't conform to that. Shortly after the 1 year mark my energy got consistent. It was such a gift. One never knows if that is going to happen or not. We really don't know what cards are going ot be dealt to us. I got lucky. I know it in my bones and deep in my brain and I am grateful for that every single day that I wake up. While my energy got consistent, it didn't return to what it was pre-SAH until the 2nd year. There are a few intangible things that came back during that 2nd year, but I would be hard pressed to say what exactly. It's just a feeling of "being a little more here". I used to do 7 things at once. It was truly insane, but I could manage. My top speed now is doing 3 things at once, but that leads to an emotional meltdown pretty quickly. I think my sense of self preservation is much stronger now than it was pre-SAH. I feel less guilty about saying no to others. I still have a difficult time saying no to things I want to do. I still struggle with accepting my own limitations and not overdoing things. I am (once again) a passionate engaged artist. I love life. I know life is short and I want to express/experience everything I can in the short time I get. However, I do want that time to be sustainable, so I often must say no to things I'd really like to do. I don't have the energy I used to have. I have wiser energy. (I'm 44 now, was 42 when I had my SAH). Having said that, I still have more energy than a lot of people I know...I'm a high energy person, however I don't have the ability to "run" as much energy as I used to. Long term effects - I would say that the SAH aged my brain. I seem to be at a similar capacity to my friends who are 15 years older than I. I have to write everything down (and later look at my notes) to remember anything. I forget conversations. Most of the time I remember them when someone twigs me, but some conversations I honestly have no recollection of. This is a bit disturbing, but then I think of my older friends, shrug my emotional shoulders and remember that memory loss due to age beats the alternative (being dead). And, then I do something to exercise my brain and keep the muscle working in new ways. Maybe my memory will improve with age! Maybe not, it's irrelevant and doesn't much affect my quality of life...unless I let it, which I don't. That took some time for those around me to get used to. My family especially. Now if my 13 year old is frustrated with me forgetting something I turn to her and say, "I'm sorry, have we met? I'm the mom who is awesome and has recovered from a brain hemorrhage. Have I mentioned that I have no memory?" She doesn't like it much, but I guess in a way it's a lesson for her in learning how to be take care of what she needs to take care of. My 4 year old doesn't have the same expectations of me. She doesn't remember me pre-SAH. Hubby, got with the new program a while back. I still deal with sudden rushes of temper if I am pushed too far and feel the need to protect myself. However, I am the Mama who has a 13 year old and a 4 year old at home, so I am often pushed too far...seems pretty common (SAH or no SAH). I do my best to verbally warn when folks are pushing too hard, but sometimes it takes a meltdown to get their attention. I don't feel guilty about these anymore. I leave, and apologize when I return. And remind them that my brain is very sensitive. What I remember were the most helpful things that first 2 years were - Behind the Gray (life saver especially when the doctors were telling me I was fine, but obviously just having emotional problems so I got referred to a psychiatrist. That was the single most frustrating thing I can point back at); I was so relieved to have found BTG, it was a life saver in so many ways - DRINK 3 LITRES OF WATER EVERY DAY! I learned that here and it made all the difference with the headaches (I took acetaminophen daily for the first 3 months, then didn't need it anymore as long as I was drinking enough water) that tip came from here at BTG - Be selfish. Do what I need to do for self preservation, including a whole lot of walking away - Being patient. Being kind to myself. Stopping when I found myself getting into any kind of negative self talk. That negative self talk was one indicator that I was pushing myself too far. Which reminds me of the nausea. That was my early warning indicator. I dealt with waves of nausea for over a year and a half (tho they decreased in frequency as my energy increased). When I felt like puking I knew that I had just crossed the line and had pushed too far. I learned that slowing down was not enough in that situation. If it got to nausea then I had to STOP. drink water. go lie down. rest. try again another day. I have changed though this experience. I hope for the better. I believe that I am more compassionate. I don't take things for granted. I know in my bones how temporary this life thing is and how quickly it can all end. I am lucky that hasn't happened to me yet. I want to honour my own new pace as I live the rest of my life....however long that is to be. I hope this helps. Please feel free to write back if you have any specific questions, want to share your story or just want to connect with someone who's gone down her own version of this path, before you. And, don't feel obliged to return any long letter to me. You must be selfish in how you spend your valuable and rare energy. I wish you the best in your recovery. Please remember that whatever abilities you may or may not get back, you have your life. It is changed. There is no going back, there is only going forward...into mystery and hopefully into health. You will not determine what that will look like. There is a certain amount of surrender and fear involved with that. That part is out of your control. All you can control is how you meet these challenges. Be kind to yourself. This is a big thing. All the best, Riane

Hello Annie, Welcome to the SAH club! It's a pretty painful way to join a club, but the folks can be great! and, very very helpful as one adjusts to one's new reality. I had my NASAH last June 17th. I returned to office work (as an unlicensed assistant in a Real Estate company just slightly north of you, Sue) two days a week just this past January. So far so good! It's great to be back at work and I am able to fulfill 90% of my tasks just fine. There is still a 10% or so discrepancy and I just don't have the eye for detail that I used to. My ability to recall information has returned. But, my fingers still sometimes get mixed up on the keyboard when they used to fly along smoothly. I first went back to work 3 weeks after my NASAH. I went on our family camping trip (as planned for months in advance) 5 weeks post-SAH. I crashed and burned at 6 weeks. I withdrew from office work and the world like a wounded animal. While I continued to do 8 hours of work a week - I did it from home on my schedule as my energy levels went up and down. I put a lot of focus and willpower into letting go of expectations (my own and others) of what my recovery "should" look like - thanks to the guidance of folks here at BTG. I set the intention of embarking on "my journey to health". In retrospect I am so glad that I gave myself the time and space to recover. Taking 5 months off from the office seemed like such a long time at the start of it. Looking back, it takes on a new perspective. I can look back at the last months and chart the significant points that I moved through. The recovery of brain function and abilities has gone in noticeable waves for me. After the NASAH I felt like someone had come into my room, taken everything out of my drawers and closet, mixed everything up and stuffed it back in every which way. That's what my brain felt like. In August I began to sort out the confusion in my brain and "straighten" things out. In September I felt more "landed" in myself. A bit stronger. In October I told my 11 year old daughter that I had a "broken leg in my head" so she might start to understand why I couldn't keep up with quick mental changes, or visual stimulation. My energy was still very inconsistent and I had to take a day off following any output of energy (like cleaning the house, working a few hours from home, visiting with a friend). In November my energy became consistent. I could do tasks, rest for a bit, then do another task. I went out dancing for the first time. It was wonderful! In December I could go to the store or spend time in crowds again, without dealing with extreme anxiety. This was a wonderful Christmas gift for me, as I am a very social person and was afraid that ability may not come back. In January I started running for the first time in my life (a long time goal that I just never got around to before). I also had a big birthday party for myself. In February I flew across Canada, navigating airports alone, to visit my sister in the hospital in Ontario. Yesterday, I spent the day mothering my 2 year old. Being able to do an entire day is still rare, since the amount of brain energy required to keep up with her is simply insane! I look at these milestones and am so happy for what has returned. None of it is due to myself, or my will power. My accomplishments are due to the fact that my brain has recovered. I have a deeper understanding of the fragility of this life, and how quickly it can all change. I have a better understanding of the myriad of things my brain does simultaneously, that I previously took for granted. I look forward to one day being able to go to a movie theatre where my brain will have to deal simultaneously with visual, aural and crowd stimulation. But, if that day never comes I will still be grateful for what has returned. Peace to you in your recovery/journey to health. Riane

Thanks for your alphabetized lists Anya and Win. I think perhaps a healthy balance of the two may be the way for me to go! Anya, I would love to get that info on coping techniques, please and thank you. R:-)

I've been taking some time off the computer for the past month or so. Haven't been around here at BTG in that time. Just checked in and got caught up on this thread. I have been headache free for over a month now, for which I am so very, very grateful. I still get confused. I can really identify with "auditory attention deficit". I find that when I read something I can maintain about 90% of the information (used to be 100% plus the details of what was going on in the environment at the time, weather and all sorts of unassociated details...not that I'm comparing myself to pre-SAH!). When I speak with people and they explain things to me I understand what they are saying at the time. It all makes perfect sense, but when quizzed about it 5 minutes later it is all jumbled up in my mind and no longer makes sense. I have found that when I converse with others I need to write things down to remember them afterwards. I have negotiated to work from home till December 1st. My office has hired a temporary replacement till then. We will check in at that point and see how I'm doing and if it's good for me to come back to the office. Trouble is working from home requires motivation and mine seems to have vanished. I mean to get things done, but the day passes and I look back to see what I have done and may find a really clean shelf in the pantry, or I spray painted a mirror frame last week, or I arrange my cookbooks. Actually, I've been decluttering like crazy. I've taken 3 vans of stuff away and will take another one to the thrift shop tomorrow. So, I'm getting stuff done, but it doesn't relate to work, or gainful employment. I'm trying to give myself permission to be where I am (I have to work at it). Perhaps I need to do that decluttering so I can move on lighter, freer. Hmmm, no perhaps about it - it's a fact. I am different from before and useless stuff sitting around taking up space just doesn't fit in my life anymore. So far work hasn't given me any grief about my bare minimum of work done from home. The grief comes from me, and my own expectations. I have found my slow cooker to be invaluable. With great recipes from here I have found the slow cooker is the answer to having dinner on the table every night, when my family comes home. Speaking of which, that will happen soon! Please keep us posted on coping strategies from the OT, Sandi. I can't afford one and don't qualify for funding to see one. I'd be very interested in her suggestions. Be well. R:-)

Before my SAH I worked 21 hours a week over 3 days. My work consisted of a whole lot of computer work (html coding for upkeep of 4 websites, and a weekly e-mail newsletter), graphic design, and office support (e-mails, phones, fax, walk ins) for a busy real estate company on the little island that I live on. Being located on a little island on the beautiful west coast of British Columbia ensures that we get a HUGE influx of new business over the summer months. As a result, as summer was approaching there was some subtle pressure for me to start to work even more than my 21 hours. Then, I had my PM-NASAH on June 17th. When the dust had settled at the hospital, after several CT scans, they told me I'd had a "little" brain hemorrhage and that I should take 2 weeks off, then start a phased return to work. I could expect to be close to my regular level of activity by 3 months, oh, and I should listen to my body. Then after 3 days they sent me home. Home to my 2 year old and 11 year old daughters! Luckily my mother spent the first bunch of weeks with us, helping out. And, we had nightly deliveries of good nutritious and delicious food for the first 2 weeks. Then, 3 weeks after my SAH I returned to work for 2 - 6 hour shifts. I did that for 2 weeks, (and still did our family camping trip in week 4 ) then I crashed. Luckily I had just found BTG and was starting to get some useful information on what happened to me and what might and might not work in recovery. I cut back to 2 - 4 hour shifts per week, one at home and one at the office. The office shift includes a good 2 hours of anxiety before I get myself out the door and ready to face ringing phones, sudden direction changes, and people popping into the office (including those dropping by to see "how I'm doing"). I have been tolerating those ok, and I have not gotten any pressure from work to increase my hours. But, at the same time I notice that so much work just isn't getting done and has been put on a shelf to wait until I "come back". I just went in on Wednesday and met with my employer and the executive assistant (my immediate supervisor). I told them about the reality of my situation. I outlined what difficulties I am facing when I am at work (a list of minor cognitive deficits that I pulled off the Traumatic Brain Injury site I found). And, I informed them of my researches on SAH (including the propensity of survivors to start to "feel better" then overdo it as they take on too much again) which lead me to conclude that it will be 9 to 18 months before I start to feel really functional. While I am definitely noticing vast improvement at 2 1/2 months post SAH, and my good days outnumber my bad days. I am also aware that my energy is inconsistent and unreliable. I still can't predict bad days and I am still learning where my limits are, and what are the early warning signs that I'm approaching them, before I hit crash mode. So, back to the meeting on Wednesday where I briefly informed them of the reality of my situation (rather than the lunacy I was told at the hospital) and made a request that I continue to work my 2 - 4 hour shifts, but that I do both of them from home. And, that they hire a temporary replacement to do the office support, for 3 months. After 3 months we will again meet and assess the situation. Luckily for me, they were very receptive to this proposal. They had thought, when I requested the meeting a week prior, that I was going to resign from my position. I am happy to say that they value me enough as an employee that they are willing to make concessions to support me in my healing journey. I did tell them at one point in the meeting how important those two little shifts each week are to me. I am unable to parent my 2 year old for longer than a few hours (which is a few hours more than a month ago!) and she spends 5 days/week in childcare (she used to be in childcare 2 days/week pre-SAH). Those 2 - 4 hour shifts help me to keep from feeling totally useless. And, they help me to contribute some small amount to our very, very tight (dare I say dire) financial situation. Mags, you asked about the financial repercussions of not working. Yikes! We have trouble even considering them in our house. Not only is there less money coming in, but there is more going out (extra childcare, food we buy that I previously would have grown in the garden, yoga, acupuncture, trips to doctors which involve a ferry, etc, etc). I just have to keep invoking trust as yes, my health is the most important thing right now. Period. I leave no room for buts in that concept. So, I now have 3 months in which to focus on healing. I did want to ask for 6 months (which is what my intuition tells me would be good) but that was just too far beyond my husband's comfort zone and, I suspect, my work's comfort zone. Instead, we will assess after those 3 months. If I still need more I will take it. That is one of the many gifts of having contact with all of you folk here - I get to learn from those who have gone down this road before. I can be mindful of the warnings of doing too much, too soon then suffering the backlash of overextention. Slow and steady wins the race (and haste makes waste...of my brain in this case).

Hello again, Mags. Welcome to BTG. I also had a PM-NASAH I read above that you were told that no follow up is needed. I respectfully beg to differ with your doctors. I would suggest that you look into getting a follow up CT angiogram at 3 weeks post SAH. This just assures that there was no aneurysm hiding out during a vaso-spasm as they were taking pictures of your brain the first time. This is very unlikely, but it is possible and has been known to happen. If you do have an aneurysm that would be good to know as it is has proven to be unstable. If nothing is found that's great you get to join the ranks of "certified anomaly". Over here in certified-anomaly-land we wear silly badges, hats and sing ludicrous songs. Oh, wait, that's all of us here at BTG (right Win?). A word of caution, I have found that the onus is on me to be the leader in my recovery care. This is difficult since the last thing I want to do right now is lead, but I have come to realize that the doctors know so very little about SAH and even less about PM-NASAH. There is lots of information available (if you're into information), and there are the simple steps like rest, rest, fluids and rest... ...and get that follow up scan so you can sign off assured that there is no aneurysm. If information is too much for you to process right now, feel free to get hubby to PM me and I can give him a kazillion links so he can get more educated on what's happened to you, and what the recovery journey might look like. Keep in touch.

Wow Sandi, days like that suck! (mods...am I allowed to say suck?) Perhaps we are our own worst enemies as our ego and our brain struggle with each other for control. Those best laid plans can be helpful if we stick to them and take scheduled breaks. And they can harm if we are over scheduled and want to stick to the plan in spite of the reality of our energy level. Then there's those dratted surprises, like your car not being ready. I have found myself on more than one occasion taking a break and resting in my van before leaving somewhere to drive home. I'm just too messed up to be driving because I overdid it (always in social interactions so far) and got to my vehicle then realized I was done! Thank goodness for your friend/colleague who came and got you. A little sanctuary is nice. Please do stick to your 4 hour shifts for a while. Don't forget you only just added that extra day. Baby steps, my dear. And, stay patient with yourself when you fall down. Baby steps, my dear. Gentle hugs to you as you cry your tears. R:-)

Just pipping up that Sandi's route to work is stunningly gorgeous, it is after all a mountain pass with incredible views down to the ocean/inlet and the forests. It is also amazingly treacherous when our rainy season hits in October. (Our climate is a temperate rainforest, so buckets and buckets of rain can fall). Then, when the cold weather hits the road ices like crazy and snow and fog are daily occurrences, even if only briefly. And that's not to mention the traffic. Sandi, I take my hat off to you (as long as we're not outside) making that trip to work. Can you take the Brentwood Bay ferry instead of the Malahat, or does that take you too far out of your way?

Hey John, I was just wondering about this today. I've read that people get the feeling of "water trickling down their heads" which I have had a couple of times. Mostly though these days I find myself reaching up to take my hat off only to find I have already done so (I can't yet go outside without a hat on my head and sunglasses). Sometimes I feel like someone has taken individual hairs on my head and pulled them, hardened up the individual hairs, then pushed them back into my skull. It's a very strange feeling. Even when I am wearing my hat I have to sit it up high on my head 'cause it feels too tight. But the "hat on head" feeling is different from the tight band across my head that I used to feel a couple of weeks ago. Oh the joys of sharing the infinite variety of head (and other body) sensations post SAH. Thank all that is good that we do have people to share it with. Let us know what the neuro says about it.

Hooray Win! Well done!!! I guess one of the "gifts" of SAH is the opportunity to appreciate things we used to take for granted. What a wonderful thing to be able to climb the stairs! You must be chuffed! (don't know if you have that saying over there? It's a good thing) Keep smiling and singing. R:-)

Hi James, Another PM-NASAH here. I live in Canada where I am increasingly sure that we have abysmal follow up care, compared to what is available to you folks across the pond. I'm glad that you seem to be doing so very well. I hope that you continue to do so. I had my POP exactly 2 weeks after you did. I am fair to midlin and getting better everyday. I hope your healing journey continues well.

Hi Sandi, How was your second Monday back to work? I have a meeting at work on Wednesday. They have been so understanding and patient with me the past 10 weeks. I am up to working 2 x 4 hour shifts a week and that seems to go well (most weeks). But that is my maximum ability right now and for the foreseeable future. They have been waiting patiently for me to feel better and increase my hours again. I have a meeting scheduled with my bosses on Wednesday to check-in and look at the future. I am going to ask them to keep me at 2 x 4 hours per week for the next several months. I am taking the experiences of others around here to heart. I don't want to jump back in and suffer a set back. I would rather take this time to heal and continue healing. Plus, getting back to parenting is more of a priority for me than work. So, I'm going to suggest that they hire a temporary person to fill in and cover the duties that I am not able to cover and that have gone the past 10+ weeks uncovered. Wish me luck! And so, how was your the start of your second week? Does your commute take you over the Malahat? Nice weather for it these days. That could be a tough commute when the rainy season hits. R:-)

Welcome to the site. I am so happy for you that you still have your partner with you. She will need tons of your love, compassion and understanding over the next months as she journeys through recovery. Some resources I have found useful are: The Southampton site here where there is tons of info on recovery A letter from your brain here. And the video of Patients experiences here. This video is about 1/2 hour long and may be easier for her than reading, although it may not, depending on her personal recovery. In my darkest down days I tell my husband that what I need is for him to see me, accept me, love me and trust that I will find my way out. On those days I feel like a child and need his leadership to direct me to tasks (including rest, drinking water) and remind me often. At the same time it drives me crazy when he tries to "fix me" by suggesting how I can make it better - he really has no idea what it feels like in my brain. He has learned not to do that. It's a tough balancing act for him. He has been amazing, he has been my rock and I don't know how I would recover without his love and support. On good days I still can't make what used to be simple decisions. My husband didn't ask me to participate in decision making for a while. That was something they told him at the hospital and we came up with a code phrase. He'd tell me, "Don't worry, I've got this covered." That gave me permission to not have to spend any of my limited brain energy on problem solving. But, as I have gotten better he has started to consult me more. I can't stand this, it feels too overwhelming for me. I have just recently asked him to stop consulting me, let me know what we are doing, what is expected of me, make requests, be clear. I guess my recovery requires me to be "child-like" instead of the confident, over functioning woman I used to be. Perhaps this will ultimately lead me to a more balanced way of life (one can only hope). It has certainly led to a more balanced marriage. I wish you and your partner all the best in your journey together. Be her rock, it will do you both a world of good. Good luck.

Hi Mags, Welcome to the site and the SAH club! (dubious honour though it may be!) I had my PM-NASAH on June 17th of this year. There was no offending vessel/artery found, they have deduced that my offending vessel also killed itself off during the event. I just had a follow up CT scan a couple of weeks ago. I had to push to get it booked. I would suggest that you look into getting a follow up CT at 3 weeks post SAH. That just assures that there was no aneurysm hiding out during a vaso-spasm as they were taking pictures of your brain (unlikely, but possible). I was very socially and physically active before my SAH. I am a dancer, walker and had a lot of community involvement. Since my SAH I got back to walking at about 3 weeks, I walk for an hour a day, up hill for some of my route, on the beach for some and quiet forest for some. I have learned to take my earplugs along for the road portion of my walk since my ears are still very, very sensitive. I tried dancing for the first time the other day but found it too hard on my neck and right shoulder (which are both still "stuck" since my SAH, tho' it is getting noticeably better). I just have to give myself more time to recover since i dont' want to end up compounding injury. I have no community involvement these days, but see one or two friends at a time a couple of times a week. Currently, I can't handle crowds of people because of my new post-SAH anxiety and because when they see me people start to ask questions. When they do I don't feel confident enough to say "Please, answering questions tires me", so I answer their questions and get depleted. I find my key words at 2 months post SAH are ENERGY MANAGEMENT. I am still learning what that means, so sorry I can't offer a definition I'm finding out pretty clearly what happens when I push my brain...it goes on strike and everything but life support and other basic functions shuts down. Not a pleasant feeling. I had the dubious joy of experiencing an "ocular migraine" the other day - a first for me and makes me wonder what other surprises are in store on this brain journey. Two things to read if you haven't already are a letter from your brain and the spoon theory. Of course there is all the great Recovery Advice and other information on SAH available at the Southampton site. One site that I found very useful for getting to know the new version of my brain is the Traumatic Brain Injury Guide. While I don't technically have a traumatic brain injury, I do have an acquired brain injury. My GP and I don't see eye to eye on this (and other things), but I have come to realize that while he knows quite a bit about a lot of things, he is not an expert on SAH. However, I am slowly becoming one. It behooves me to educate myself and push for the treatment I need...of course this is difficult since I find my self-confidence has suffered greatly in this experience (another common SAH effect), but perhaps it will prove useful in the long run!? Good luck in your journey. Drink 3 litres of water a day. Rest lots. Give yourself a few months to ease back in to life...then give yourself more if you still need more. All the best, Riane

Apologies if this is too off topic. Winter, I just finished reading Jill Bolte Taylor's Stroke of Insight. She suggests donating one's brain to the Harvard Brain Bank (after you're done with it, of course) at 1-800-BrainBank. Your brain could go one way while your body goes another (umm not only off topic, but a big gruesome, perhaps...yikes). Back to the thread at hand I must admit I was interested in the topic of the research paper, but i just couldn't get past the methodology paragraph. I like those cute little Norwegian rats!

Hi Katie, I have just sent you a PM (private message). I went back to work 3 weeks after my PMSAH. I did 2 shifts a week for 6 hours. I have had to cut back to 2 x 4 hour shifts per week. Some weeks I can't do it. I'm getting better, but won't push myself. The recovery needed from pushing myself at work just isn't worth the inevitable setback. I want to get better. It sounds like Tuesday was what is referred to as a "hangover" day. It's where you have (over)spent your energy budget the day before and suffer for it the next day. A stroke clinic or doctor may be of use to you in recovery/healing. This whole healing journey is a learning curve, but you'll get there. Give yourself time, then more time, then more. Be patient with your fragile brain. Drink water to keep it well hydrated. R:-)

Hi Katie, How are you feeling these days? Are you able to take some time out of being a busy mother and running your business? I have gained tons of weight in the 2 months since my PM-SAH. This is mostly due to taking on an attitude of "life is short and dessert is good". I get a moment of discouragement when I look in the mirror, but this is quickly followed by a gentle reminder to go easy on myself. I do trust myself that I won't keep the weight on for ever, I love to dance and move my body too much. At least I used to. I haven't danced since before my PM-SAH, but it is my top goal for this week. Getting your thyroid checked out is a good suggestion. I think it's more than just our thougths that get scrambled by a SAH. It is a big event for a little brain to handle. Take Care, Riane

Hi Kate, Welcome to BTG, glad you found it. I hope your Dad is able to make it over here one day. I would suggest that you try (when he is ready) to watch this 1/2 hour video with him. It may be easier for him to watch a video rather than sit and read. He could even do it in small segments if that's easier. I have found it so helpful to see that video and hear from other people who went through the same things I am going through. The video and drink 3 liters of water each day are the two most important things I would suggest. I wish you and your family all the best in this journey of recovery. It sounds like your Dad is a strong man, he'll make it through, and it's a journey... Riane

Hi Katie, Welcome to BTG. Glad you found it/us. I found my way here about 3 weeks ago now, which was 5 weeks after my "event". I had a PMSAH on June 17th. I live on the West Coast of Canada. One thing I have encountered so far in my recovery process is a whole lot of frustration at how SAH's are dealt with here in North America. We are given very little information on the recovery process and many of us are told to resume our lives in a few short weeks. Some people seem able to resume their lives fairly quickly. Others of us need MUCH more time to heal than we are given permission for by the medical providers (who, I have come to realize, have very very little information about what happened to us or what the road to recovery might look like). As a result, those of us who need more time to heal feel like there is something wrong with us, and/or we are damaged beyond repair. I found my way here after a particularly frustrating day at work (my introduction is here) where I couldn't do what I thought were the simplest tasks. I was so frustrated at myself, but also realised that there was something more than just my own personal difficulties. I have found, through being here at BTG that what I was/am experiencing is completely normal for the recovery of SAH. I would suggest you watch this video about patients experiences of SAH, with your husband as soon as possible. This may help you both to normalize what you are (both) experiencing. Also, look around on the home page here at BTG (as you have the energy) and find links to info. There is way, way, way more information about what happened to us over in Great Britain, than there is here in North America. You will find links to downloadable PDF's on both what to expect, and how to support your healing. Also, and this is very important with the headaches, drink 3 litres of water a day. I know it's a lot , but you'll find that it helps TONS with the headaches. By the way, I have kids too. I have an 11 year old, and a 2 year old. We have had to put our 2 year old in childcare 5 days a week while my husband is working. I can parent the 11 year old (who is much more less high needs than the 2 year old), but I cant' parent the 2 year old by myself. When I start to get down on myself about my inadequacies as a mother, I remember that while she doesn't have her mama much at all these days, she does still have her mama. I will get better in time, and in the meantime, my husband is not a single parent widower dealing with his and our kids grief and my children still have their mama here. Sorry if this is a tidal wave of information, I know it may be difficult to process info right now. I just wish that I had been given this information myself by the doctors or nurses who tended me...so I offer it to you. I'm so glad you made it here. Vent away, the folks here understand and everyone has something useful to offer. What a godsend BTG is. It may be helpful for your husband to look around here as well, he will learn that what you are experiencing is normal and perhaps let go of any expectations he may have for you. Hugs, Riane

Hi Elaine, Welcome to BTG. I had my PMSAH on June 17th, I am coming up to 9 weeks along myself. I can't even imagine going into a store these days. Just thinking about it makes me anxious. Being around that many people, trying to process the sensory information, and making decisions! Yikes, decisions and I don't mix well these days. I do drive these days, but I live on a small island with a population of 1000 people. We have about 5 stop signs and no stop lights anywhere on the island. Any driving here is bucolic country driving. I have to drive myself into the nearest town next week for a test. That means contending with all the Sandi outlined above...I anticipate that Sunday evening is going to include an anticipatory anxiety freak-out before Monday's driving. I'm just trying to say...go easy on yourself. The folks here are full of wisdom about what this road to recovery looks like. It is worthwhile to listen to them. I have had to deal with myown frustrations and expectations. I have compared myself to how I was pre-bleed and every time I come up lacking with a burning desire to prove that I can get back to that, and soon. This has only led me to more frustration and exhaustion. As it was said on another thread, compare yourself to how you were when you came home from the hospital and you will see how much better you are doing each day...even the set back days. Drink the 3 litres of water, walk every day, go easy on yourself, watch the video Karen linked to, read the letter from your brain, know that you are on a normal recovery journey from an abnormal occurrence, and carry earplugs with you everywhere (that's what I do and I have been so grateful so many times...mind you, I have a 2 year old so loud noise is part of my daily reality). You are not alone in these experiences...we can all identify. Riane

Hi Janet, I'm over on the west coast of Canada (waves from across the big pond and the continent between us) so I have no idea what your health care system is like over there...but that in mind I would suggest the following: a) listen to the other 'more experienced' SAH'ers over here on BTG (I had my PMSAH on June 17th, so am a newbie, like you) - we are indeed in the early stages, they have gotten through and are futhur down the road of recovery...they've all been here and made it through, they have lots of wisdom to share. see your GP as soon and as often as possible. I think I"m annoying my GP with my (almost weekly) presence, but at the same time I think (hope) I am helping him to learn as we go along. If nothing else, he is charting my progress each week/two weeks which may be helpful for me down the road. c) if you haven't already, watch the 1/2 hour video (click link here) produced by the NHS with patient's experiences following SAH, and share the video with those close to you. This will help you feel that yes, you are normal, and help those around you know the same and what to (not) expect from you in the coming months d) let yourself cry...lots...and then lots more. I have found myself on the floor wailing many times in the past weeks. I wait until I am alone at the house because I don't want to worry anyone, and it gives me such freedom to cry what really needs crying. To say this is part of the grieving process begins to explain it, but there is so much more in this that words can't even begin to describe. e) go easy on yourself, check in here, believe us when we tell you "Yes, it is normal" and go easy on yourself again. You've been through and are on an indescribable journey. f) do walk everyday, even if only for a few minutes, get some air and get out of your house/flat g) drink the prescribed (by other BTG'ers) 3 litres of water each day. It will help clear the drugs out of your system and flush your body cleaner...it does stave off headaches. h) check back in here at BTG as often as you want/need to. Good luck on your healing journey. None of us asked for this, but it's the hand that's been dealt to us. I thank all there is that I am still alive - even tho I often feel that life is overwhelming me these days. All the best to you. Riane

Hi Michelle, I wish there was such a thing. Really, it's like the Wild West here on the North American frontier. I can't believe what I read about what you folks have in the way of support and facilities over there. It sounds wonderful. Like an imperfect system that actually cares. Unfortunately there is no such thing as a SAH worker (not that I've ever heard of, Sandi? have you heard of one?) over here. It really is patient follow what your doctor says, or try to educate yourself. Surfer, thanks for your feedback. I really do value your perspectives. I also share a lot of them. Doctors (and insurers) deal with stats. Patients deal with their own lives. Unfortunately, I think my doctor is a bit fed up with seeing me. While he believes that I dont' need the CT angio, he has agreed to send me down to Victoria for it. He told me he would order whatever test I want. I have asked many questions of him and he has answered them to the best of his ability (he does have experience in Neurology and with SAH). I've taken a whole lot more of his time than I've been allotted for appointments. I have put so many questions to him and I believe (I may be wrong) that he is growing a bit tired of my questions. I think I'm now gonna give "the office" the rest of the day off. Step away from the computer, go out into the garden and get some perspective here....

I just found this article (from the local hospital that does the CT angio) about a review of the findings of one of the radiologists there. I was trying to find out if they had the 64 slice scanner and found the above article. Then I called the hospital, they do have the 64 slice scanner and a different doctor is working (and reading the scans) next week. (appointment is set for Monday). All this angst isn't good for me head...

I don't know what to think! I thought I had it figured out...where did that easy button go? I'm overwhelmed again by what feels like an enormous decision with enormous implications. I feel like I'm supposed to put the pieces together and try to come up with a decision, when the pieces dont' even make sense to me. I haven't seen the original report or photos from the first CT scan. What i have is the report from the 2nd CT scan, where they say: "A small amount of subarachnoid hemorrhage is again noted in the interpeduncular cistern and has not appreciably changed, but is less well-assessed on the current study. Not gross parenchymal mass lesion or infarct is seen. There is no shift or herniation. There is no hydrocephalus." The 3rd scan (a catheter CT) says: "No aneurysm or vascular malformation is seen. No dural fistula is identified." Last week's report from the Neurosurgeon says: "She underwent conventional catheter angiography and CT angio, both of which did not show an aneurysm. I reviewed her CT from June 17, 2011 which shows some blood anterior to the midbrain which is consistent with 'perimesencephalic hemorrhage', a benign entity. Headaches may persist for weeks or months, but there is no specific treatment. All that I would suggest is a follow-up CT angio of the Circle of Willis either at (local hospitals named). in the very unlikely event this shows an aneurysm, I would refer her to one of the vascular neurosurgeons in Vancouver, otherwise her headaches will hopefully resolve with time." Based on the above recommendation my doctor booked me for a CT angio, rather than a catheter proceedure. Of course, instead of trying to put the pieces together and come up with my own decision, I could always turn it over to the doctors and go with what they think. The problem with that is I have never been very good with that. It's not their life they are dealing with, it's mine. They are dealing with stats. I am dealing with my head and my mortality. I just dont' know what to do...

Thanks Surfer and Sandi for your information, Thanks Win for your good wishes. I did more research last night (gawds I'm getting tired of research...never thought I'd say it before...I used to love it) I found a very useful article on the American Heart and Stroke Foundation website which discusses a study done rating the different follow ups in the case of NASAH. On closer inspection I am concerned about the potential serious side effects of the catheter angio, and the study indicates that there really is very little difference in results. Soooo, cap in hand I must write a note to my doctor, serve up myself some humble pie and apologize for my little freak-out yesterday. I will also cut some flowers from the garden for him. Too bad the raspberries are done for the season,otherwise I'd have brought him a nice basket of fresh ones. Hmmm, maybe I'll bake him something. Seriously, making decisions is so over my head these days. I have trouble deciding which clothes to choose to wear in a day. On a side note, Sandi, I did find some mention of the effects of the radiation from the catheter scan (they use 2-3 times more dye in that one) on subsequent brain function. I can't remember if it was in the study linked to above, or if it was a different one. I don't think it is far fetched to think there may be some residual brain function difficulties as a result of the invasive tests. Thanks again for your feedback my NA (North American) fellow PMSAHers. What a trip, eh? As Win says, I'm off to do the more painless, quickest and easiest route. Ahhh, the easy button, there it is!