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It doesn’t seem possible that I sit here 10 years on and can survey where I am now. Not that I have a direct comparison from that day as I have no memory of events for a good few days after my aneurism let go , it was not until I left the ICU and moved to HDU and wondered what on earth was all the kit around me for that I have any memory at all and they aren’t that nice. I pulled my ventricular drain out , my catheter, cannula, I mean they were just an annoyance! Those days though are far in the rear view now but for some reading they may be very present and reality and so just know healing is NOT confined to the first two years, regains continue , you learn more, but just don’t try and rush it faster than your brain is telling you it wants to go. Trust me in that if you learn your warning lights and heed them then you’ll gain confidence and move forward. There’s no going back, getting back, it’s all about what’s possible from here. stay curious. https://popgoestifty.blogspot.com/2022/03/lowering-curtain.html

Good morning, I hope everyone is feeling well, its sunny outside in the UK for a change, we are all happy to be alive... Genuine question in need of explanation please.. What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating I suffered my SAH at the end of January, I was told I would suffer lower back pain as the blood dispersed but never did... I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little.. Then a month ago I had to move house and the old me kicked in and my fiancé and I did the move ourselves, packing renting and driving vans unpacking the whole thing and although I was tired we got through it.. Then trying to settle I decided 3 weeks ago to buy a greenhouse on ebay, it was an incredible deal but 2 hour drive to dismantle it so I booked a van and off we went at 7am A strenuous 14 hour day plus 4 hours driving and a greenhouse in peices is in our new garden Since then, I feel like I went 12 rounds with Mike Tyson... I hurt everywhere from my toes to my nose.. aches, pains sore and it will not go away... it has lessened a bit in 3 weeks but I am still feeling quite broken and don't know what to do with myself... I had always been very physically fit and strong with incredible recovery powers... Is this Post stroke fatigue..?? Did I just break all the rules and advice I am reading on this forum of being good to myself... Is this the way my body will behave if I push too hard.. for the first time in my life I feel my age and its really depressing me My doctor admitted she knows very little about SAH and the recovery process, she has called me in for blood tests on Monday so see if I have infections or viral markers.. I have increased my fluid intake and have done next to nothing in 3 weeks, the greenhouse is still in pieces in the garden like it's mocking me for being weak Should every part of me hurt after 3 weeks.. apart from not having major headaches I feel worse than when I left hospital 3 months ago... Any advice or thoughts on what I have done to myself or what help I should be seeking please let me know... I am desperate to do things without being busy or being able to self medicate with "herb" I am driving myself and everyone around me nuts.. The one positive if it is a positive is I stopped smoking herb after 30 years of heavy use in a heartbeat... the day my SAH happened was it... so I do wonder if I am suffering other kinds of withdrawal... All ideas and opinions welcome, as said at the beginning the Sun has come out and I want to go out and play, not just sit around like a lump complaining of my aches and pains, that is not who I was or who I want to be... If its sunny where you are I hope you can enjoy your day and the weekend coming.. D x

Hi, wondering if anyone can just help settle our worries a little bit. I know every case is different would be great to hear what other people went through watching a loved one during recovery. 2 weeks ago my Dad (aged 51) suffered a very large SAH. The last 2 weeks have been such a rollercoaster from the point where we were sat in room with a doctor telling us there was nothing they could do as he was not responding, to the doctor coming back in saying scrap that, he has just started responding. He has been in Neuro critical care and the staff have been absolutely amazing. He recognises us all, he can eat and swallow, his eye sight seems ok as he can read big signs on the ward etc. 2 weeks on he is extremely confused and just rambles on his own little world about random dates. Each day he thinks he is a different country in a different situation. Is this confusion all normal? If we talk directly at him and ask him direct questions his memory is there and he knows the answers. But we just want the normal dad back, not the confused one. Is the confusion and being in your own little world normal and if so how long did it last for other people? Also the surgeons have said they have looked at all jis scans and stuff and stuff and they have decided they do not want to intervene or operate as the risks are too high. They have just said they will continue to monitor and it will take months and months for recovery. Is it normal for people to be untreated? Especially when it's a large bleed? Thank you, just looking for some re-assurance that the confused patient is normal and all part of recovery. Thanks Dotty

Hi, all. My name is Jade, & I am new to all this, so please bear with me if I'm not doing this correctly. So, here is the background of the situation that brings me here: Right now, my boyfriend & the love of my life (his name is Todd, & he is 45) is in the ICU at a hospital 2 1/2 hours away from me. He suffered an SAH on Sunday, April 10, in the evening, while he was in the shower. I did not know what had happened until the next day (Monday) evening, when I called him after work & he told me he felt very sick (had gotten awful headache, vomited, had neck pain, etc.), & had been sleeping on & off since it happened. I urged him to go to the urgent care center by him, & he said he was feeling better, but would call the doctor the next day (Tuesday). He did, & scheduled an appointment for Wednesday. Late afternoon Wednesday, he texted me to tell me the doctor thought he had meningitis, or a brain aneurysm. I figured, surely, if it were an aneurysm, he'd have been sent to the emergency room. He told me a CT scan was planned for Thursday, but that he wasn't sure what time it would be. I received a phone call & voicemail from him Thursday morning (I was still asleep), telling me he was in quarantine in the ER for meningitis. I immediately called him, & was able to speak with him briefly. Later that afternoon, a phone call from his mother informed me that he'd had an aneurysm, & was in surgery for a coiling procedure. I immediately broke down, of course. She called later Thursday evening to tell me his surgery had been successful, & that he'd woken up & was able to speak. I was overjoyed that he came through surgery successfully, & told her I would be headed to hospital to see him Friday after work. When I arrived Friday, he seemed to be doing well, considering he was only a day removed from surgery. He was talking, smiling, able to open his eyes, move his arms & legs, & only seemed groggy/sleepy. They let me stay with him past midnight, & he seemed to be doing well when I left. Saturday was much more difficult- the occupational therapist asked him questions, & he struggled greatly with remembering the answers, & also, w/ his words in general. They told us his blood pressure must be kept high, to avoid "vasospasming". When his lunch arrived, he ate every last bit of it, which delighted me to see he had an appetite. He then became very sleepy (to the point his mother & I could not wake him), although he did kiss me goodbye & say, "I love you", before I had to leave to head home. Yesterday (Sunday, so one week after his SAH occurred), his mother told me he seemed to be doing better, but that they were still concerned about the risk of vasospasming, & were trying to adjust his fluids, salts, etc. accordingly. I called the hospital this morning to learn from the nurses that he'd required a procedure for the vasospasms late last night, was on a ventilator, & would be having a second procedure this morning. When I asked his mother a few hours later how he seemed, she said he was very sleepy prior to the second procedure, & that they'd made him fully unconscious. She told me the doctor said they'd do the procedure (again, I'm still not exactly sure what it is they're doing) as many times as necessary to stop the vasospasms, but from what she gathered, the doctor was indicating that my boyfriend is still remaining very strong through all this. As someone who is geographically removed from her loved one during a terrifying event, I am asking anyone to please give me any advice/information you may have about this situation, based on your experience during your/your loved one's SAH & recovery. Is it normal for me to feel more afraid than I ever have over these vasospasms?? I was so thankful & filled with joy that he survived the SAH, seemed to be cogent afterward, & seemed to be doing well after his coiling procedure, but this vasospasming has me in a panicked, sobbing frenzy. I cannot stop scavenging the Internet trying to find evidence that vasospasming does not necessarily mean fatality or permanent impairment. Please, if you can, help me understand the impact of vasospasming, & share your positive outcomes with me- I'm really, really scared for my boyfriend. Thank you all for reading this, I know it was a lot.

Hi there, My mum is 48 and had a SAH on the 19th of March 2014. She had the coil operation on the 20th of March and was discharged from hospital on Monday the 7th of April. Whilst in hospital my mum also had vasospasm, seizures and hydrocephalus. A lumbar drain was used to deal with the hydrocephalus and she is on keppra 500mg for the seizures. I was so pleased to have mum home and have been doing my best to look after her but she has had a constant sore head since she's been home. She tells me that the pain isn't getting worse but some days she can barely do anything apart from sleep or hold her sore head. The pain relief she has is codeine 30mg but this doesn't seem to have much impact. She finished her nimodipine course at home and then restarted her blood pressure tablets. I know that I am lucky to still have my mum with me without any major physical problems but I feel so helpless to see her in so much pain! She's been home for a week now and thought I would see some sign of improvement. This Wednesday will be 4 weeks since her SAH, and I know this is still really early in her recovery! How can I help her? Any tips for dealing with a sore head? She doesn't think she needs a doctor but when do I phone for advice? I have an oximeter, blood pressure and heart rate monitor and home and all of these things are fine. She's eating breakfast and dinner and drinking fluid - I've even got decaff tea bags! Some advice would be great! I want to look after my mum - I don't want her to get unwell again! Thanks, Chris

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

Please go easy, this is my first post, might be in the wrong section, sorry if it is, might offend some, sorry if it does, no intention to, just need some help, I am wanting to know how other people with SAH Haemorrhage are suffering, I want to know if what is happening to me is normal. Mobility Issues (starting to get worse) Leg Pains Left hand shakes a lot Body Convulsions Depression Headaches General pain Hearing Stuff Seeing Stuff Smelling Stuff Throwing Drinks over myself(or food) Incontinence at times (Urinaly) through not being able to get there on time I spoke to my doctor about him sectioning me, he said the fact that I asked about it shows I do not need sectioning. But I can not cook, taking care of peronal care can take in excess of an hour, I can not work, I can not walk my dogs, everyone wants me to give up smoking (a contributing factor rather than the cause of my SAH) but how can I with all this going on. I have really bad thoughts, but I would never act on them I feel it is a selfish thing to do (just my opinion, please do not judge me on this). My doctor has been great and it seems now like help is starting to trickle through, just had our first financial problem, think we have 2 more months before our lives fall apart in that way. Had my SAH aged 34 on the 1st of feb, 1 week in intensive care, 4 weeks in a ward, I was walking around, my only issue was pain, now look at the list. Yesterday, I was walking on frogs (seeing stuff) Smelling toffee apples, my dog I kept thinking was dying, I kept letting my cat in but it kept getting back outside, no windows or doors open. I suppose I was hoping to hear about how other people have attached things to their SAH and not feel like I am going nuts, even though I sort of am, lol Cheers to those that can help me.