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Well at Annie's suggestion I am starting a new thread as there are several of us including Annie, Me and Barney who fall into this category!!

 

We had bleeds but no abnormality was found-therefore no treatment..although 2 Angios/2 MRI and a CT scan...apart from the Imodepene which is standard to prevent a vasospasm.I had one almost 2 years ago and as I said previously-I still have issues.

 

I notice that not as many people appear to read the articles than do who read these threads but there are some good articles posted that are worth a read.

 

I posted details of my SAH in September so won't repeat them and one on life lessons too which I am still working on myself to change my ways!! Also something on sleep and worry ...Issues that I struggle with.

I still find 2 years on that not a day goes by where I don't think of the SAH.

 

I still have questions..I suppose that there was nothing to find does in itself sort of leave a question...but life is more important now ''especially what I do with it and how I relate to and treat others.

I often think I am over it..only to find that it really has left a shock in my system..after all it was a scary thing!!!

 

I am grateful to Karen for setting up this site which is really getting a lot of hits now!

So come on then..who is going to carry on this thread?..also if you have questions put them down..i am sure someone will have some pearls of wisdom to offer!

 

Andy P

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Thank you AP!!

 

I think one of the frustrating things about our sub-group is that the hospital seems to wash their hands of us when we leave and are content to say it's not likely to ever happen again. I really felt and still feel cut adrift and I know my husband does too.

I'm taking a lot of comfort from this group.

 

Thanks again, Karen. Andy, after 2 years it sounds like a lot of your lingering effects are emotional. Are you still having any physical effects as well? Any fatigue, memory, headache, or dizziness issues for example?

 

I know what you mean about the SAH being with you EVERY day. I think about it a lot too. I haven't learned all the lessons from it that I am supposed to though I am working on that. I'll try to make it a priority before long to post my story too, and to look at the articles.

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Hi Annie-

 

I think that most issues are emotional-the shock /facing death head on/realising life hangs by but a thread/finding out your life can change in seconds/disorientation/etc-although recently i have had terrible tiredness again around lunchtime.

I have had recent sleep problems and headaches but I think with me much is down to work stress and a dental issue that is still not fully resolved..but you do wonder of course!!! I saw someone else on the board still tired after 5 years!!!

 

What bugged me was that it took 9 months after the SAH to be told that the check up MRI taken 4 months before was ok..I hadn't seen the consultant at all in that time -9 months since the SAH and I did feel cut adrift like you say. It was just when he told me how bad my bleed was that really threw me-so a year later I had more of a shock! I was never really that dizzy but my short term memory sometimes makes me wonder if there are still problems..It may just be that I am getting older..47 now..

 

I would encourage you to tell your story though-I think that can really help others a lot.

We do have an SAH group at Southampton which I no longer attend and hopefully the DVD production soon to help others, also Alisons book which I think will be really helpful ..with around 27 interviews of various people's experiences.

 

I think you are in the states aren't you Annie....Whereabouts?

 

All the best for now

Andy P

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Hi Guys,

I think that I can understand how you feel about your SAH. At least I've now been given an explaination for mine and fingers crossed it's been fixed!!......but I can understand that you guys must feel as though you've been left in limbo.......this thread is a really good idea and I hope that other non-aneurysm SAH'ers will continue to add their views and experiences to it.

Love K x :)

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Guest barney

Hi Guys,

 

Thanks for setting this thread up Andyp. I guess at the moment my main concern is that my GP is intent on getting my blood pressure down although I got a second opinion the other day on my BP. Went and saw another GP with records in hand, including a recent 24 hour monitor, and he was not really concerned with the results. Indicated that if I averaged the 24 hour data then my BP was looking OK.

 

I am taking betaloc (Metoprotol) - a betablocker, which is making me feel really tired and my concern is that the BP medication is having the main effect on me now and not the SAH, so I am taking steps to self-monitor my BP, build up a good record and then have a serious discussion with my GP re: reducing or eliminating the medication (assuming that my record indicates that there is no real cause for concern with my BP).

 

I agree that both the hospital system and the GPs just seem to cast you out into the cold with a handful of tablets. I have found that you really have to keep at them, in particular the GPs, and tell them what you want checked. From what I have heard from other people who have had such contact with the health system, what you have to do is just keep at the medicos until you are satisfied that they are really addressing your concerns. So go to it - don't just accept all that is given to you - actually that is one of the benefits of the internet - if you don't know the answer then Google it !!!

 

At this stage I feel that I have been too busy getting to grips with my recovery rather than dwelling on what happened - my philosophy I guess is to address what has happened and move on, I am not too keen on putting too much energy into dwelling on the event. There are pros and cons for our situation - that is they were unable to find the cause or site of the bleed, no surgery and no further problems with that event.

 

My opinion is that we all now have to concentrate on reducing any factor(s) that may have caused the bleed - in my case I am only working part-time and may never work full time again, try and get my weight down, get fitter and reduce my blood pressure. Some years ago I did a course in TM relaxation, so I am increasing my use of that technique because it has been shown that meditation decreases your BP - worth a go.

 

My suggestion is don't dwell on the past put all of your energy into ensuring that you are fit for the future.

Cheers,

Barney

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Thanks for all that Barney-useful stuff!

 

I must say I would most certainly prefer to be in the non-SAH category.

We are the fortunate ones-no coiling or clipping although a bit of a mystery.

I am all with you..don't look back-you can't change anything...move on and look to the future!

 

Andy P

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Thanks, guys. Glad you're here to talk to.

 

Andy, I'm in Ohio. Near Columbus. As far as I know, there is NO support group here for SAH, and I never did find an online group that is concentrated in the states.

 

I think what bothers me most is that I just don't feel like I'm the same person at all. I used to compete on my horse, and now I can't even muster the energy to ride every other day. I see my peers moving on up the levels in dressage, and I feel so left out. And with the decreased energy I am gaining weight. It's not critical yet, maybe 8 pounds over, but it doesn't feel good and it sure COULD get critical fairly easily.

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Annie-maybe it is one small step at a time??

Somehow dressage may seem far off..but are you riding again??

Can you set yourself some reasonable goals... but stretch them a little each time??

I bet you can..

.

I had to really push myself to swim again..it was hard..it hurt..but I did it!!!!

You can too I know it...

Andy P

xxx

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Thank you Andy.

 

I think I've realised this week that I am just now beginning to figure out what the new me can and should handle. All this time I expected to get to the one year mark and be my old self. So, I need to reassess. Yes, I am riding!!! I think that's been the yardstick that's been the hardest thing to change. I used to ride 5 times a week and compete. Now I'm doing good to ride 3 times a week and I can't even consider competition.

 

I have a real mix of feelings with this because it involves another living breathing being that NEEDS exercise and attention. So, I'm exploring ways to keep him worked without knocking myself out. One thing's for sure... when I'm riding, I''m not thinking about anything else. I love it. I'm so glad to hear that you're swimming Andy. Good for you!!!!! I sure know how hard it was for you to start up again.

 

Thanks for the reminder about small goals. I need to start setting and achieving those instead of putting my heart on hold hoping to be what I was before. xoxo,

 

Annie

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Guest Ember

Hey everyone! I'm a non-aneurysm SAHer too, 3 1/2 weeks after my bleed.

 

I'm wondering if my hospital stay was typical. I was in an intensive care unit for ten days, on Nimotopine, anti-seizure medicine, a mild sedative every six hours, Plavix (a cholesterol lowering drug that I was told is helping patients have better outcomes with SAH) and in addition to normal IV fluids, I was on 3% sodium. I'm not sure exactly why. My blood pressure was aggressively controlled to below 137/80 and I got IV Labatelol every time it went up.

 

I had mild swelling in the brain but didn't need and drains or shunts. I had two angiograms nine days apart, two CT scans (three counting the first on in the first emergency room I went to, before transfering) an MRI and a MRA. I'm told I had a category II bleed and all my neuro checks were fine throughout my stay. I had the headache and a very stiff neck and vomiting, that's it. My entire stay was exactly 14 days.

 

I'm just curious, because I heard from several nurses and my primary care doctor that the neurosurgeon is "very conservative" and I'm wondering if other people had a similar hospital course.

 

I love this site. It has helped me understand what happened better and it is so good to meet other people. It's been a bit of a roller coaster. Finding out that I'm in a life threatening situation, then to find out I'm in a lucky group who will probably have a good outcome, then learning that there are still obstacles to overcome. And not knowing why it happened can be pretty frustrating. You guys rock. Thanks for listening!

 

Love.

Ember

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I'm not sure but I don't think any of our other nonA's here stayed in the hospital as long as 14 days. If your surgeon was conservative, that's really wonderful. Better safe than sorry!!! I was in ICU for 4, and then 2 on the floor. 2 angiograms and an MRI. Had the anti vasospasm stuff, and morphine, and IV fluids, but not sure what else. I also have no idea what catagory mySAH was. :/

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Guest Ember

I think I was waiting for a second angio too, my doc wasn't convinced that it was non-aneurysmal and held out the possibility that vasospasms or what have you may have been hiding the aneurysm. She first told me I would be there for at least three weeks, for three angios a week apart! I was happy to get out in two!

Love!

Ember

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Yes Karen I'm a newbie non aneurysm SAH.

 

In my case they couldn't find the cause of my bleed even after 3 angiograms, untold ct scans and a MRI I had a second bleed after the shunt had been inserted approx 3 weeks down the track, they put this down to a weakness after the 2nd angiogram and pressure from vomiting when my gall bladder got inflamed, they thought I might require further surgery thinking the shunt wouldn't be able to cope but thankfully it did,

 

it's all pretty hairy as I was not really with it in those early days, I would like to hear from others that have experienced this type of SAH and know how they are doing now. Its 7 months since it happened and I’m starting to get on top of it slowly, my short term memory and concentration levels leave a bit to be desired but that too is improving. Hey it’s so good to be here I am very lucky.

 

Diane xx

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Hi Diane, a big welcome to the site.

 

I haven't been on here for a while but only because of life's busyness.

Everyone on here is so friendly and helpful, I have found the support invaluable.

Like you I had a non aneurysmal SAH. Mine was on 31st December 2006, so I am certainly going to be celebrating this new years eve!!

 

My consultant, after looking at my CT scan, explained to me the 2 procedures, one of which he would be doing after my angiogram, he then came to see me just after the angiogram to tell me that I should be rejoicing, there was no aneurysm, I came out of hospital on 14th January, after having almost total bedrest, anti stroke drugs and loads of pain relief.

 

The time around my SAH was a very sad one, the day before it happened my uncle passed away after being very ill and 4 days after I came out of hospital my wonderful dad passed away, it's all still a fog to me, I think sometimes that i'm over it then I get really upset all over again, I miss my dad so much.

 

However, I am just so happy to be alive and relatively well!! I have a very supportive family around me, I'm a carer myself for my youngest son who has mental health problems (although very stable now!) and also for my husband who has lots of physical illnesses, so since my SAH the tables have turned a bit!!!

 

I find still that my short term memory is not so good, tiredness is a big problem still and my inability to sleep properly!!

All in all, I think that the recovery for non aneurysmal SAH is about the same as if you've had an aneurysm.

I think it's important for us to accept that maybe we can't do quite as much as before, take it a day at a time, some days better than others,

 

your recovery sounds as if its going well.

I think it took me quite a while to realize the seriousness of what had happened to me but hey we're all here to tell the story.

Whatever you want to know about SAH there will always be somebody on here to help you!!!

 

Love to you,

God Bless,

Suexx

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A Big Hi and thank you for getting in touch. I'm so sorry to hear about your Uncle and Father it's hard to find the right words of comfort for you right now but my thoughts are with you. You sound like you are a very loving capable person Sue I wish you well.

 

I have to agree with you though and settle for almost as good as before but hey one day at a time is good, sleep patterns for me are also all over the place one night is good the next well you know how it is I find if you make time for yourself to rest a little during the day after the bad nights it helps.

 

I hope you don't mind me asking but do you have a shunt inserted if so hows it going? mine is there I feel it but overall it's not bothering me at all. My biggest thing is my neck soreness/stiffness I do my exercises but it hasn't done much the worst is probably when reversing my car and finding a comfortable spot for my head at night, I'm hoping this too will settle in time. thanks again it's been great talking with you.

 

lotsa luv

Diane xxx

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Hi Diane, thanks for your reply, its great to communicate with someone on the other side of the world!!

In answer to your question about a shunt, no, I don't have one, I had no surgical procedure at all, I was in hospital with a girl who had a shunt, she coped pretty well, i'm still in touch with her.

 

I love this site!! even though i've not been on it much lately, I have 8 grandkids and see them a lot, my house is always busy!!! but they have come to realize that when nans tired that's it!! I have to disappear upstairs and get a lie down, people on the site meet up occasionally, its just so good to be face to face with others who have had the same problems.

 

Maybe it would be good in your part of the world if you could actually meet up with other SAH'ers?

There's a load of photo's in the photo gallery of our meets!

 

How does your tiredness affect you? I read a thread yesterday where Karen said she feels like she just switches off! That is exactly how it affects me, i'm seemin ok then all of a sudden, i'm drained, I call it going into brain freeze, don't seem to be able to take anything in when i'm at that level of tiredness. Looking on the bright side though, we have a perfect excuse for creepin off and having a nap in the day!!!

 

Don't forget Diane, a day at a time!

Love to you,

Suexx

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Hi Sue, thanks for this it's so nice to get your reply and yes I have my Nanny naps during the day too especially when I've pushed myself that little bit extra like yesterday I was cycling with my friend around the waterfront (20k)we do this once a week anyhow the weather turned nasty on us thunder, lightening etc.

 

Typical Aussie storm for this time of year so we had to push the pedal pretty hard to make it back to our vehicles before we got soaked, I was exhausted but ok after that mind you my neck and shoulders felt like I'd been hit by a steam roller this morning and I was pretty lethargic as well, nothing a good hot soak and a lazy day today didn't fix.

 

I find that when I do get tired I can't get my words out properly don't seem to co-ordinate mouth with brain but I'm learning to laugh at myself now rather than get upset we must always keep our sense of humour don't you think.

I have 6 grandchildren 4 from my daughter and two from my son, all living in New Zealand my daughter and family came over recently and spent a week with me it was lovely to see them all, I really miss them.

 

It really has been nice talking with you Sue please take care.

lotsa luv

Diane xx

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Guest tekemeee

I was looking on the internet and found this board. I am from the United States but most topics that I find dealing with SAH are for people that have had aneurysms. I had my SAH on July 26, 2003. I felt fine when I woke up that day - actually I was packing to go on vacation the next morning. I felt a funny feeling in my head (not the "worst" headache of my life like the doctors kept calling it.) just a really strange feeling sort of like firecrackers or something.

 

I was carried to the emergency room and I walked in myself. They did a CT scan and hooked me up to an IV - when they came out and said "you are bleeding from the brain" I honestly thought it was a joke - I kept saying "no I'm not". They called my entire family up to the ER - I'm from a small town - so they said they were going to transport me to a large med center - and I said "no you are not" I told them that I was going on vacation and that when I got back I would have it checked out. I had never even heard of anyone bleeding from the brain.

 

They transported me by ambulance - which I also argued about - I told them that if they insisted that I would get my husband to drive me to the med center. When I arrived at the med center - I was told "most people in your condition arrive dead or in a coma". I will never forget those words as long as I live. I couldn't believe it - because honestly I felt fine.

 

They took me in and did an angiogram - I was awake during it - they found nothing - they put me in NICU for 23 days. During that time I had vasospasms the entire time - they couldn't believe that I was able to talk with them being so high. The man that came in and did the doppler each day to check for vasospasms said that as long as he had been doing that - he had never been able to carry on a conversation with someone that was having vasospasms like me.

 

During the 23 days I was in the NICU they did 2 more angiograms - a total of three - none of them showed where the bleed was coming from. I was never in a coma or anything - I actually did my bank statement while I was in the unit. I asked that a telephone be moved into my room - they said that was a 1st also - they didn't let me walk for the entire 23 days - they pushed me on a bed or in a wheelchair.

 

I did get up and go to the bathroom - which was only a few feet away from my bed. I have to end for now - but I wanted to let you know some of my story. I have no known side effects - I work full time. I am really blessed.

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Welcome to behind the gray!

Sounds as though you had some very good medics looking after you ....

It's great to know that you haven't suffered any side effects .... early detection/care seems to be the crucial factor with a SAH. I've believe that a non-aneurysmal SAH stands an excellence chance of a very good recovery....

Take care and keep well....

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Hi Tekemeee, So nice you could join and tell your most interesting story, you are amazing one of the lucky ones I'd say, so glad you are on the mend. I wasn't as alert as you when they were firing all those questions at me you know like What day is it,Who is the Prime Minister, what hospital are you in etc. on one occasion I apparently pulled the bed sheet up over my head(I'd had enough) hell I'm not from this country (Australia) I'd never heard of this hospital..how was I supposed to know all this.

 

I fixed them I found some paper and a pen and wrote down everything I could so next time they asked I'd have the answer by just adding a day, when the team looking after me discovered this they told my husband I was a very crafty woman nothing too much wrong with her brain to think to do that in the first place, tehe it got a few laughs as they called it my cheat sheet. Any how good to hear from you keep on getting well.

 

Diane

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I've had a shunt for almost three years now, and apart from the "party trick" aspect of it I never really notice it. Not a lot to say really as it's become normal to me even to the extent of sleeping on the opposite side to the thing!

Scott

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Hi Scott, glad your shunt is behaving. tell me do you still suffer with neck stiffness or does that ease over time? it's been seven months for me now and it hasn't got any better, I don't know if it was the SAH or the hydrocephlus that triggered mine. anyhow I would value any information or advice you can give me re this. thanks

Diane

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Think that this topic deserves to be "bumped" to the top of SAH discussion .... thanks Janet .... xx

It would be good to find out how all of you guys are getting on?

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