Sandi K

Hi everyone, just wanted to advise what the neurologist told me in my appt last week when I asked about BP. He said the NASAH and blood pressure are in no way related and there is nothing to show that bp caused the bleed. He explained that they don't know what causes perimesencephalic brain bleeds. Sorry everyone, we didn't talk about other types, just the type of bleed I had. He told me to carry on with a healthy lifestyle and don't change anything. It's unsettling to have no known cause and I still can't help but think my head exploded from stress. I just really hope that I'll be better at prioritizing and understanding what's worth worrying about when I go back to work. I sure don't want another one of these!! Sandi K.

Took me a long time to understand that SAH is a type of stroke. Especially because the neurosurgeon told me clearly 'you did not have a stroke'. What the heck. Only confused me more and I didn't need any help with that!! Sandi K.

Karen, no wonder you are nervous about the 25th! Maybe a day at the spa is in order?! Any excuse is what I say! Good for you on the return to work! Are you excited? I went to visit work on Thursday and just say hi and everyone was so nice to me it took everything I had to remain composed! It must be a relief to you to hear the details of what happened during your operation. Just knowing makes such difference! Sandi K. Xox

Hi Julie, welcome to BTG! I'm amazed at what you have been through and how quickly you've gone from coma to 2 hours at work. You are one determined lady. Your near death experience is also incredible. Your dad wants you here with your children and says it's not your time yet! To go from SAH, to surgery, coma, and then working in such a short space of time truly is amazing. How are you feeling? I had a non aneurysm SAH in November 2010. I didn't need surgery and the bleed stopped on it's own. I only spent 3 days in hospital and had no coma. I went back to work on January 5th and the lovely people here were concerned for me and advised it might be too soon. I pushed on thinking I was different because I didn't get coiled or clipped or have invasive surgery. Over the next 3 weeks my symptoms became intensified. My blurry vision became double vision. My heavy arms and legs became cemented down. I felt huge anxiety and cried at the tiniest things when I'm not a cryer and do not normal cry in front of others. I sobbed like a baby almost every day. I couldn't think and began making bad decisions. I couldn't calculate or follow complex conversations. Finally mid February Occupational Health sent me home. I've been home since. I will try again but not until May and it will be a very gradual return like yours. My symptoms are much better now and I'm not as emotional or tired. Julie, we are all different and our recovery is different. Im telling you my story because if you recognize any of this in yourself you need to give yourself a break and take more time to recover. I needed 'permission' to feel sick. Supporters here told me its ok to acknowledge that I'm sick and need time to heal. I also had counseling to help me with that. I had huge guilt and anxiety about not being at work. Take care of yourself, you are a survivor! Sandi K. Xoxo xox

Well said everyone. I had my first appt with a neurologist 4 months and 1 week after my SAH. The appt was yesterday. I agree with Lynne, so much changes in a few weeks and think the docs wait to see how we are managing before saying anything. He explained to me that some people are back to work in three months but others take 6 months or longer. He said the 'type a' or 'overachiever' patients take longer because they are unable to do 5 things at once which was their regular routine prior to the SAH. They don't know us and they don't know how we are going to experience symptoms through our recovery and they don't want to draw out the path for us. I learned that I might have some permanent eye damage but he doesn't want me going for an exam yet because again, things will change in the next few weeks so he suggested I wait until at least the 6th month mark. It's hard to accept that it all takes time and in the first month or two it seems to be taking forever to get better but even at just 4 months now I understand that this just a blip and my brain is working magic in just a few short weeks. My perspective has changed significantly, once I accepted I needed to give myself time to get better. Sandi K.

Hi Amelia, I'm glad the test was easy peasy! Now we need good test results, good thoughts coming your way from Canada! Sandi K. Xo

Nessie, thank you for the giggle! "as long as you all keep quiet". Hahahhaa! My family has been visiting and they like the TV on at all times. I know it's just their regular routine but I need quiet in my day. Makes me wonder how I'll ever get back to my job or how I managed at all when I went back too early!!! Sandi K.

Yes, I had a perimesencephalic SAH and I have all my reports now so will reply to the other thread asking for details once my visitors have gone home tomorrow. I had one cerebral angiogram and 2 CT scans. The first CT scan was an hour after arriving at hospital and the second was three weeks later. Will follow with details tomorrow afternoon. I'm also finally (FINALLY) seeing a neurologist tomorrow morning. I've only seen a neurosurgeon so far and I didn't know there was a difference. Sandi K.

Just pulling this thread forward so it's easier for the new members to find it. This one shows the links to the studies on NASAH's. Thanks Surfer! Sandi K.

Hi Ian, I wonder if you had a perimesencephalic SAH which is a non aneurysm SAH, (NASAH)? If you did then they dont likely know the cause of the bleed but they couldn't find an aneurysm in the angiogram or CT scan. If that's what you had then you probably won't have another. There have been some studies on this and Surfer34 has posted links under the peri forum here at BTG. Reading those should set your mind at ease. Hope you are feeling well this evening. Sandi K.

What kind of SAH did you have? I had a non-aneurysm SAH on November 10th. I've found this group at BTG to be the best source of support and information. The biggest lesson I've learned is don't go back to your normal pace too early. I thought I could be back to work January 5th and tried it for a month. I ended up feeling worse and am now at home listening to my body and giving myself time to heal. We are all different but that's a common theme I see here at BTG - go slow and expect it to take time. I found counseling helped me understand that better. It's nice to have you here Ian. Sandi K.

Good afternoon all! I agree, panic doesn't help. It's reassuring to hear that just because the symptoms are bad one day doesn't mean they will never go away. Its important to stay calm and relaxed, not always easy to do but it sure helps to keep the symptoms at bay. Sandi K.

I wonder if ignoring the symptoms is what made them go away or if you were recovering in a timeline that would have occurred anyway, regardless of ignoring the symptoms Jess? I ignored my symptoms and thought to myself 'chin up, back to work, enough time off!' and then my symptoms worsened. Many here on BTG weren't surprised by that. I would love to be able to ignore my symptoms, if I could I would be back to work now. I wonder if you mean that we shouldn't focus entirely on our symptoms? That we should go for walks, and find things in life that distract us from the symptoms. It does help to have fun but when the blurry or double vision kicks in, the elastic band tightens, the legs get weak, the vertigo makes me fall down, and I can't understand what people are telling me, I know its time to pay attention again and get some rest. Sandi K.

3 week is very early, as the others say get lots of rest and don't expect too much yet. The brain needs lots of time to recover. All those connections in our brains need to be restored and that takes lots of rest and time. Too much stimulation is exhausting: TV, lights, too many people talking, loud noises. Do what you can to rest and let your family help you. Sandi K. Xox

Jess, does closing the door on the SAH mean ignoring the daily symptoms or that the symptoms go away? I'll feel like I'm getting better, and like a broken bone (which I've never had) I think I should get progressively better each day... But then my head will go right back to where it was 2 weeks after the SAH. How long will this keep happening? Sandi K.

It makes sense that our hormones go crazy when our brain explodes. Depending on what part of the brain blew up there will be some upset and chemical changes. I don't really know this for sure of course! My hot flashes subsided considerably after my SAH (yay!!!!!) but the week leading up to my period is not comfortable at all because those symptoms combined with my post-SAH symptoms become just too much! It's difficult to know what is PMS and what is post-SAH. And prior to the SAH I would pop some ibuprofen without thinking twice. Now I don't. My GP says NSAIDs aren't good for people who have strokes so only take them as a last resort. The other painkillers make my eyes hurt (reaction) which also just adds to the list of symptoms. Geesh! Sandi K.

Carolyn, I wondered where you were and if everything was ok. I cannot imagine what it's like to have the cost of thousands looming over you for an ER visit and being placed in a position of having to make a choice!!! Thats horrible! Can you get insurance? The cost will probably be high for pre-existing conditions but surely not as high as an ER visit, and emergency surgery and a stay afterward if all that were required. What a pile of stress on top of not knowing what the heck was wrong or how serious it was!! Scary! Sandi K. Xox

Karen, its awful to feel so down. You have had your one year mark and I'm wondering if it's all coming back to you. It's really wonderful that you went into the ward and took the nurses chocolates and I imagine that gives closure in some ways and also celebrates and values the good work that is happening on that ward and that they saved your life. At the same time, all your anxiety, grief, shock, and everything else may have been churned up during the visit. This is a big moment, the 1 year mark. It's a year you may not have had. I can see how along with the pleasures that life brings us it's hard work and a bit overwhelming to get through that year. I'm only at 4 months and I'm dropping stuff everywhere today! I fell down at the doorway coming into the house with a plate of smoked sausages! My head is swirling and the darned boat won't stop rocking today!!!! And I know I've many more months of this to go. Please give yourself time and go easy on yourself. This 1 year thing is a big deal. You are allowed to moan. It's what helps me understand what to expect coming up. I need you to moan and tell me what happens and then I know it's normal. Lynne gives such good and sound advice and explains it so well. Karen, cry for your year. And then find something small but positive that makes you feel good. We are all here for you. Sandi K. Xoxox

Jen that particular paragraph was of great interest to me too. I have no problems with sleep, I sleep like the dead at night and get some very deep power naps on some afternoons as well. But most times I still feel the enormous weight of fatigue and get tired very quickly. Today seems to be an exception, it's a good day. More of these good days would be very nice! Sandi K.

Karen, that's exciting news!!!!!

Surfer, that's gotta hurt when no one acknowledges that something life threateningly serious has happened to you and that it will take months for you to resume some kind of routine that looks familiar to your old one. Do you feel like you are constantly educating them? I've told everyone I can that I've had a brain hemorrhage. It's almost the first thing out of my mouth! I feel an obligation to talk about it. I'm surprised at some of the people who know way more about it than I would imagine. Others who I think should know something surprise me by not having a clue. I wonder if your friends and family refuse to see you any other way than your healthy athletic self that you normally are? Do they think that by refusing to believe the enormity of it they are somehow helping you to recover? It's hard to know why people react the way they do without asking them. I'm glad you've got us here at BTG, we know what you went through and what you are going through now. Sandi K

Thanks for the link to the report Jen. Very informative. SK

Thank you for posting it Momo, interesting read. Sandi K.

Hi all! I spent 10 to 12 hours a day commuting and working 5 days a week. That didn't leave much time for socializing. Many of my friends live far away and same with family. It's an hour drive at minimum, for most a ferry ride is required. So I'm not feeling like I've lost anyone through this. In fact it's the opposite. Now that I'm home all day I'm catching up with friends and family online with email and Facebook and I'm making new friends at BTG. I have felt like I'm losing touch with work but with counseling, talks with my Occ Health advisor, talking to my boss and members of my team by phone keeps me steady and grounded. I'm still very early days, next week will be 4 months. I don't know what will happen in future but however it looks Im confident Ill be ok. When I feel down (and boy does it hit big) it's hard to remember it's not forever. But that's the truth, it's not forever. It just our brains needing to feel that as part of getting better. I just said to a friend 'one day at a time'. Really, that's all there is. One day at a time. Sandi K.

Blame it on the brain injury.... :lol: Sandi K.