Sandi K

Lynne, that's funny!!! She was on Piers Morgan on CNN the other night and I was really hoping she would discuss it but all she said was how it was such a bad time for her. There are more articles on the Internet regarding the details of her SAH and her recovery. She would be such a good spokesperson, it's too bad she doesn't talk about it more. It's interesting that both she and Brett Michaels are diabetic and both had SAH's. I'm a sugar hound, I eat healthy but my vice is candy/chocolate. Sandi K.

I read an article a couple of days ago about Sharon Stone's SAH and how exercise was appears to be related. See here: http://www.dailymail.co.uk/health/article-86282/Have-got-Sharon-Stone-Syndrome.html I hope th link works. I dont have much success with copy paste on my iPad. Sandi K.

Hi Karen, I'll be thinking of you on the 8th as you go through your test. I hope it goes well and that you are also able to find out some info on the study. There is some stuff posted on the Internet but it's hard to read through it and figure out what is what. Sandi K.

Like Surfer I bought a home monitor and was checking pretty regularly for a few weeks. The hospital 24 hour holster showed my pressure to be more stable than what the home monitor was showing. I think I jump up and down and I think that's what caused the bleed. The jumping up in BP is from stress (adrenaline). Doctors seem reluctant to point to stress, they want us to quit smoking, quit drinking, eat well, and exercise. I already do all that. I had loads of stress at work and I was absolutely exhausted. I see that now in retrospect. 'hindsight is 20/20' right! The trouble with this is my BP problem comes from the natural flight or fight response. So how does one change that natural reaction? This is going to take some time and thought. I already know that I can't go back to the same pace and that I must do things differently. Now I need to start defining how. This is such an eye opening time for me. It's such an opportunity to make things better! Sandi K. Xoxxo

Hi everyone, Wondering if blood pressure is considered a cause for an SAH or is it just something to be monitored after an SAH so as not to stress the body systems further? Does everyone who has an SAH have high blood pressure generally? I was asked to monitor my BP for a few weeks after my PM-NASAH and it would be high sometimes but generally it was really good. I was fitted with a 24 hour holster and wore it while I had returned to work. It was a very stressful time, I wasn't feeling well, my brain was not working, and my boss had an important meeting that day in which I had to provide some information which we didn't have ready yet. Very stressful but the BP report came back ok. In fact the BP report said it was good. However, my GP said the neurologist might want my BP lower than the general 'normal' because I've had a brain bleed. Is this a 'what comes first, the chicken or the egg' question? Sandi K.

I guess we can all feel lucky for lots of reasons. The first is that we survived at all. My doctor asked me today if I was grieving and yes I am. I'm grieving for my old self, the new self survived and I'm not ready to get to know her yet. After that we can feel lucky for different things, any of us can see something that is 'worse' for someone else. That same thing may not feel worse to us when we have it ourselves. I'm a typical type A overachiever who sees illness as failure and weakness... Boy have I been learning a lot. Being sick is out of my control, not a failure. My GP says I will recover but it will take 2 years. I've learned from this forum that you can't put time limits on it. Saying '2 years' just means it will take time. And I'm certain I won't be the same person I was when 2 years is past. This is the first time in my working life (15 years old first job) where I've had to rest and not tax my brain. It's giving me time to think about what I was doing. It was all about the job for me. I climbed the ladder of success and was the boss. My ego still wants that, but if I go back to it the terms will have to be different. I need to take care of myself and find that balance that people talk about. Sandi K.

Oh Michelle, I'm so sorry to hear about the driving. Are you able to get a second opinion in the UK? It seems unfair that you travelled 2 hours to be 'written off' in a matter of minutes and no test given. It is frustrating trying to explain to the docs how we feel when we need our brain to be able to do that! I started keeping a diary on Feb 10th and although the doc hasn't asked to view it it helps me summarize my symptoms. Sandi K.

I'm only 3 and a half months post PM-NASAH and I already have moments where I feel 100% but those moments can be devastating. I know I should look at them like each time I have them they will get longer and it's a good sign. But instead it's like a peek at my old self and I resent the symptoms when they creep back in. Also, when I'm feeling good I have that awful guilt from not being at work. At least when I'm symptomatic I know why I'm home and I pay attention to my recovery. Am I nuts ? I'm still believing I will recover. But... Im accepting that I will be different. Its still early days but honestly, I can't see myself ever going back to the same pace as before. I look back in awe at that person. I can't believe how much I could coordinate in one go. No wonder my brain yelled STOP and blew up. I'm wondering if I can return to my old job and just do it differently. I don't know if I'm strong enough for that, people have expectations and it's so easy to try and meet those expectations. We do have to be more assertive but that takes some of our precious energy. Sandi K.

Hi Nessie, someone from the UK will reply about Headway. Oops, Lynne and I must have been typing at the same time! Sounds like recovery time from your outing is slow going. Its good to hear that you listen to your body and if you need sleep and rest that's what you do. It sounds like Hubby is supportive which relieves some pressure doesn't it. After my venture to Vegas I am on the couch. It was expected and that's just the way it is. I'm just so grateful I'm not back to work yet. I would be in tears from exhaustion if that were the case. Take care and rest lots. Sandi K. Xo

Nicely put Maggie. I like it!

It's really tough to have an invisible injury isn't it??!!!! I want to put a big bandage around my head sometimes! I know people mean well when they say 'you look great!' and some days I agree with them. But most of the time when I catch glimpses in the mirror I see a sad, sick, tired, pale girl. Donna, lots of members say we never go back to who we were. Because we've had a life changing event. I think some of my sadness is grieving for the person I was. At some point I have to figure out who I am now. That's hard to do when we are tired all the time! Sandi K.

Hi Mary, welcome to BTG! Mary, you've really been through it! Since you were 23 in 1990 and continual angiograms, you are a trooper! I think I would say 'enough is enough' too!! I wonder about perimenopause symptoms too, some are very similar to effects of the SAH. Forgetfulness, can't find the right word, emotional, aching, and tired. It's hard to know if these are menopause or SAH. I was feeling some of this prior to my SAH last November but everything is intensified now. I also wonder if these symptoms were not perimenopause but were signs that my head wasn't right. It's all very confusing. Sandi K. Xo

You must be relieved Sally.

Hi all, I have the 'zone out' thing too. Usually as a passenger in the car. Suddenly I'll be aware that I don't know why I'm in the car. It only lasts a few seconds but as it all comes back to me my head hurts similarly to an overworked arm or leg muscle. I also had it while in the trams in Vegas moving from hotel to hotel. I haven't noticed it when I'm the driver or when I'm walking - perhaps because I have to pay attention at that time and can't drift off in a day dream. Maybe these 'daydreams' are little rests for our brains? Or maybe the movement lulls us off to 'sleep'. Sandi K.

My feet had an x marked on them too. I had an angiogram and although it sounds scary and painful to have a tube run through an artery from your groin upwards I didn't find it bad at all. I think I was pretty drugged up! I was already on both morphine and codein and then they gave me a shot of something that calmed me and made me feel quite content during the procedure. I thought the whole thing was really cool! I felt as though I was part of the diagnostic team and asked lots of questions (how much does one of these cost?) but don't remember the answers! The worst part was lying flat for 3 hours afterward and having to pee so badly!!!! Sandi K.

Hi Sue! Welcome to the BTG family! My goodness, your introduction could have been copied from me!! 46, otherwise healthy, in charge, sent home and told to carry on. I'm just over three months now. I wonder if your friend meant 'take an opportunity to slow down' and instead said 'take it as a warning'? I expected to jump back into my old shoes. When I did that they didn't fit right, at least not yet. I jumped back into 'normal' too soon. Im now on a break to rest my brain and allow it to recover. It's true that our chances of rebleed are nil and our recovery is expected to be good but that doesn't mean it will be quick. I thought it meant quick! Listen to your body. It will tell you what you need. Nice to have you here Sue! Sandi K.

Hi Bay! Lots of good advice in this thread! It does sound to me like you need a rest. I think you say that you feel like you are going to collapse after delivering leaflets. Maybe that's not a good idea yet? It took weeks before I would acknowledge that i was doing too much. Now I've been home for a week and I am feeling better than I was even a few days ago. My head is tender to the touch too. Especially at the top. Almost like a bruise. I noticed it felt like that 6 months before my NASAH. I thought it was sunburnt in Mexico. But Mexico was 9 months ago now and I still have a tender head! Sandi K.

Hi Dermot! Welcome to Behind the Gray'. I had a non aneurysm hemorrhage and my neurosurgeon (i did not have surgery) said absolutely no weights for one year. It's been just over three months and I am doing wee weights. Just 3 pounds per hand (hand held weights- not the bar kind) to keep my arms in shape. Your neuro specialists should tell you what you can do. I say that with a wink because they don't tell us much! Sandi K.

Our recovery times are different for all of us and you sure can see that in this thread! I think the important message is to keep an eye open for that 'F' word - fatigue. If it creeps in and is ignored it won't remain ignored for long. Rest if and when you need to. Sandi K.

That is a good video on YouTube. A few time since my SAH it has seemed as if I'm looking through a glass of water. I wonder if it's similar to scintillating scotoma (sp). The ocular migraine I experienced had more movement, kind of jiggly and wavy. thanks all for your posts, I'm pretty sure it's related to my SAH but I'm not worried. Docs appt tomorrow! And, if there is ever a study going I will be one of the first to volunteer! I can't believe how little information we have! Sandi K.

Hi everyone, As I was getting ready to go see 'The King's Speech' this morning I developed an ocular migraine. I've had it once before, a few years ago. I didn't feel well this morning, shaky arms and legs and blurry vision and pale. The ocular migraine came and I didn't panic because this time I knew what it was. If you have never had one there are some great animations on the web that show you what it looks like. Basically it's like your vision ripples, like the rippling of water. I told Peter what was happening and I just sat down and waited it out. It lasted about 10 minutes. I was left with a whopper of a headache in my forehead/sinuses and it's lasted all day. Peter drove me today, glad for that! Does anyone think this tied to the SAH? I do have a docs appt Tuesday but wondering if anyone else has these? Sandi K. P.S. The movie was great, even with a headache!

Hi Rog, I'm glad you are back. I was wondering how things are going so thank you for writing again. Liz asks if perhaps your wife senses your anxiety so she's acting normal. It's also possible that she is using all her energy to get through her day and she's not aware of just how freaked out you are. Peter has taken to hiding his anxiety from me and I'm surprised when he tells me things like he was up at 2am worrying about me. He might not be hiding it from me, i think maybe I'm just so wrapped up in myself lately I don't notice! Either way, I agree with the suggestions of counseling. These feelings of anxiety can be overwhelming and a counsellor will help to bring some calm back into your life. I live in a rural area and didn't want to drive for face-to-face counseling because I would be 'done' by the time I got there. I had my first session over the phone last week and found it very helpful. Sandi K.

Hi Jan! Its true that all the stories are different but what happened to you is just as hard for you as it is for anyone else here. You life isn't the same as it was before. That is really difficult. It can have a profound impact on our emotions, up and down, elation and sobbing. It helps to read everyone's stories, I always cry! I think it's because we can feel for everyone here. Although everyone has different experiences and recovery times there are many many similarities that we all share. It sounds like you have concerns speaking with your kids about possible genetic factors. Some members have their family and friends read these posts. Would that help you? Sandi K. Xoxoxx.

well done Surfer! so i must be angiogram negative then because they couldn't find the source of the bleed. my letter says it was perimesencephalic so now I know what that means. weird about the stroke comment from my neurologist isn't it. I've read that he's an excellent neurosurgeon but a rotten communicator... i would have to agree with that. i didn't need surgery so have to assume that his surgery skills are better than his communicating skills!!! All the studies show that it shouldn't happen to us again. I don't get that. Why not? Wouldn't you think that if it happened once it could happen again? And if it's a type of stroke, wouldn't you think that you are prone to more strokes? It's not sitting with me well. For a bit I was satisfied with this info but right now I'm not. If it happened once why wouldn't it happen again. Sandi K.

Thanks Gary!