Annie

Oh Karen, I would be SO happy if this helped you!!! xo, annie

Welcome Cindy! It's probably a club you're not happy to join, but it's a fine group here. xo, Annie

Hi Stephanie, For me and my husband, there were many traumatic things, but I guess among the worst were: Having to CONVINCE the emergency room attendents to do a scan. Bad reactions to meds including body rash and severe nausea (which of course made you wonder if you were having another SAH) Complete cutoff from access to a neurosurgeon to answer questions after coming home. Lack of communication between the hospital and my GP. Extreme and terrifying leg pain (causing collapse) for days after returning home. This led to an ultrasound check, and then a full body MRI, when all it was was the disipation of blood throughout the spinal cord. But no one had said that might be part of the recovery period. In fact, no description at all of what is to be expected in recovery. I experienced pain, illness, dizziness, headache, shakiness, extreme fatigue, light and sound intonlerance, reactions to meds, depression, and fear. I was told I would have a long and happy life, and be completely recovered within 6 months. I am now a year and a half post SAH and still dealing with fatigue and memory issues. I have since read, due to my own research, that the non-aneurysm SAH such as mine can take as long as 6 YEARS for full recovery. A particular lack of concern for the non aneurysm SAH patient in follow up. Thank you for your work. There is a monumental lack of follow up care and information for the SAH sufferer. I am in the states, and the only online care I found was this website in the UK. Every SAH patient and their caregiver should have access to a network of care post SAH. Those of us on this site have also been frustrated by the enormous variety and conflicts in post SAH advice from doctors everywhere. I still do not know what painkillers I should or should not be taking. Even with aspirin or ibuprophen there are those that say never take it, or sure yes, take it. I hope this entry is useful to you. Annie

Hi Punk! Welcome! I guess I'm almost your polar opposite... the blonde ex cheerleader suburban housewife children's book artist. Just another "gift" from the SAH... I get to meet so many interesting people! Keep writing and let us know how you're getting along. xo, Annie

Hi Andy! So nice to hear from you, and I'm so glad to know you're doing well!!!!! Couldn't tell you at all about the DVD. I know the one that Keith sent to me about the brain unit at the hospital worked for us. Maybe ask him? (bogbrush) Thank you, xo, Annie

Hi Aine, I've been on zoloft (AD) for 20 years! There is a history in my family of clinical depression and I went on when I was really unable to get off the couch and stop crying. I find that they knock the edge off the highs and lows and kind of even me out. I have looked into tapering off since my SAH, and I still want to eventually, but the docs are recommending that I get through the menopause first so as not to confuse issues. I would be interested in knowing though if Zoloft was one of the red flag AD's that your doctor said may cause a bleed! Can you find out for me? It sure didn't seem to be a concern while I was in the hospital. They continued my dosage daily right through the intensive care period and after. Anyway, I second Karen's opinion that an antidepressant probably won't do anything for energy unless your immobility is due to extreme sadness. The whole SAH experience is certainly loaded with fatigue issues for me, (and that's WITH the ongoing anti-depressants) so I imagine that's where it's coming from for you too. If you do decide with your doc to go on the AD, remember that there is a week or two of side effects and then possibly as long as 6 weeks before you get the benefit. Maybe that's changed over the years of improving these things, but I don't think so. xoxo, Annie

I don't want to be an alarmist, but Sarah, has anyone mentioned to you that jaw pain is a symptom of heart trouble in women? It is much more common for women than chest pain, which is more typical for men. Couldn't let this slide without saying something. Wouldn't hurt to have it checked out. xo, Annie

Hi folks, Sue and Richard recently joined us as non-a's, so I'm starting a thread again on our specific experiences. Sue had asked about whether our recovery is the same as the aneurysm folks, and in most ways it is, in my own experience. As we all know, it is VERY different for everyone, so if anyone else wants to contribute to this discussion, you are most welcome. Below is my response to Sue when she asked about my recovery so far: It will be good for us to compare notes as Non-A's. And yes, many of the symptoms and recovery problems seem to be exactly the same, aneurysm or no. I don't have the vision trouble that Karen does, but I have experienced just about everything else. All of the headaches and dizziness improved a lot after my initial terrible seven weeks. I hope to post my "story" for everyone before long and you can read all the gory details there. After those physical painful issues, I had trouble with intolerance of noise and visual overload. I found for a while that I could watch TV without the sound, OR I could listen to it while my eyes were closed, but to see and hear it together made me crazy. I had the same experience when I went into a store for the first time. Wow! It was too much to bear and I had to leave. I had a period of time too when walking was extrememly painful for me in the area of my tailbone. It was so bad that I would collapse. We ended up getting an MRI for that and they found nothing unusual. And of course, it went away on it's own. My main troubles at 17 months after are stamina and memory. I have to pace my day carefully and I still take a nap in the afternoon more days than not. I tire more easily during activity too. But again, I see gradual improvement still in all of that. The memory is an ongoing issue. The long term is fine. Short term is very spotty. I don't remember what is on my calendar without checking it frequently, and I have moments of total blank out sometimes right in the middle of a sentence, which can be very embarrassing. But I am learning to cope and just tell people of the problem as I go along. I can't say I've seen much improvement in that regard over the 17 months though. I am also going through perimenopausal changes right now, so it's hard to say how much is attributed to that instead of SAH. But my husband seems to agree that it's more SAH than the big "M". So, in a small nutshell, that's what my experience is at this point. I would also say that the doctor's suggestion that I would be good as new in 6-9 months was bogus. I've since read that it can be up to as long as 6 years for the non-aneurysm full recovery. I'm counting on less than that of course, but it was comforting in a way to know that fact. At my one year point I expected to celebrate and spent the day in tears because I wasn't 100%. Since reading the correct statistic, I feel better about coping and letting it take it's necessary course.

Hi Richard, I am another "non-A" SAH victim (perimeso.... is such a long word to remember!!! haha). A few of us on this chat line are. However, I can't offer you any advice about how to get up to speed with your cycling. I found the hospital pretty much said "all better!" and sent me off with little follow up. I think we all just have to listen carefully to our bodies and engage in as much or as little as we can tolerate. I also suspect that you will find some days a lot better than others for a long while yet. Everyone is so different. There doesn't seem to be any magic formula that works for all. Sorry I can't offer more. xo, Annie

I'm still just on the OUTLINE! I'll probably bore people to tears. But it's been good for Jack too. He chimes in with things I might have forgotten (me? forget???) and also with a few things from his own perspective which I will include too. Still catching up with work so it will be a while I'm afraid. Hoping you sleep like a babe tonight. xo, annie

Wonderful!!!!!!! Yay!!!!!! You made my day. Remember she still has a lot of recovery ahead, but I am so thrilled for you both. Our love to you both. Get her online later if she's a computer gal. xo, Annie

Welcome Christine!! Yes, Keith is right... you are VERY early in your recovery. Rest Rest Rest. You might take some comfort in reading the section called Your Story where a lot of the posters have entered accounts of what they went through. As for the ongoing recoveries, you'll find a lot of "comparing notes" here in the Discussion area. Lots of fatigue, headaches, some dizziness, foggy thinking, memory loss are the main complaints. You will also read about how things DO get better with time too! We are all dealing with how our lives have changed and this site (thank you Karen!) might someday also help clear up some of the contradictory advice given us by the dear docs. xo, Annie

Same here. My BP has always been low.

.... and yesterday I finally started my outline for My Story. It's going to be a volume. But it's cathartic and it might help someone.

Sure! I'm in if she needs another one. Might be good to have the non-a perspective in there too. If you talk to her soon, please give her my email address. Thanks.

I always love hearing about Louise's recovery rate. I am sooo proud of her. She really showed them!!! Your sister's progress is very impressive too. I think Karen is right. As they check off the multiple problems stacking up right now, her body will have more ability to begin the brain recovery. As far as her lying in bed and your having fun.... my own experience in intensive care I found to be such a gift really. While I was not feeling well, it was such a pure sense of rest knowing I had every good reason in the world to let everyone else care about things and JUST REST. Believe me, that's what she wants right now. So your having some breaks from the stress are well deserved and she is doing what she wants and needs to do right now. Hang in there. And thanks for the update! xo, Annie

Hi Sue, Yes, everything you're experiencing sounds a lot like what most of us go through. I've been lucky on the headache end. I suffered those first few months but it's rare now. It does seem though that when I have one it's a bit worse than I used to have, but that could be my imagination. The fatigue and memory thing are the primary bugaboos with me. tgif! Annie

Welcome Sue!!! I am one of your fellow "non-a"s. (no aneurysm) I will be happy to chat with you at any time about our mutual recoveries. My sah was in Oct 2005 so only a few months before yours. I'm 51 years old. Yes, fatigue and stamina are the main bothers as well as short term memory problems and just general fuzzy thinking sometimes. The other frustration is trying to let people know that you are not as strong as you were before without sounding like a crybaby or broken record. Then we all also suffer low times emotionally because of the above. We're happy to have you with us, and look forward to hearing more from you. xo, Annie

That's great news. I'm very impressed with the progress!! It probably doesn't seem like much to those of you who see her daily, but it seems to me like great strides. That is so cute that she remembered about the clothes!!! If she's unable to go out, maybe someone would like to shop for her like I do for my husband... that is go buy several outfits, have her try them on, and return what she doesn't keep. I do this with Jack and he gets all proud and says "I shopped!" xo, Annie

Welcome, Eyeball! And I'm so glad you found this site and that it has been helpful to you. YES, you must give yourself permission to "re-enter the earth's atmosphere" slowly. Even a year later, it's not unusual that you are still adjusting. I'm sure having a big family means added pressure for you. Or perhaps not, if they are all helpful. Anyway, you're doing great. Best to you! xo, Annie

Yes, memory is my biggest buggaboo since SAH. It's significantly worse. I don't keep track of my work schedule as well as I used to. Just yesterday I found out I had remembered a due date wrong on a current project. Now I have a hellish month of work ahead trying to make the date. And yes, that's WITH writing it down. I forget anyway. I think now I'm going to begin to keep my work schedule on the computer calendar as well as the desk calendar and the bulliten board. Maybe the triple whammy will do it.

wow, I'm getting really boring here ( or more boring)... wasn't warned of anything, didn't change anything. Still drink coffee daily and have a drink at night.

I never smoked either. Thank God. Considering how I am with sweets I'd have been hooked for sure.

Personal summers!!!! That's GREAT!!!! I can sure use that one. Here I've heard ladies say "I'm glistening". hahaha I tend toward cold, generally, but then we're having a record spell here of a week of below zero temps at night. I like the winter less and less as I get older. You must get your spring earlier there. We don't have the birds singing just yet. Our spring is usually here to stay by the end of April.

I wasn't told a thing about driving or about contacting the insurance folks. Maybe because I'm non-A? Yeah, conflicting advice again all over the place.