rince

Having been involved with quite a few "new" launches of websites I have to say that this looks and feels like quite an expensive commercial venture! It's always tempting to keep putting in that little bit more but thankfully you've managed to keep that siren song in the background. Far from being a site on a shoe string you've made it look like you've had an almost unlimited budget. Well done, but the important thing I've found about this site is that you put content over all other items. Having it all together in one professional package is a huge bonus, shame that this is one area where success actually costs more than failure! We're probably on the verge of almost bankrupting you in terms of bandwidth, maybe time to find a corporate sponsor? Scott

Just checked and found this..... http://www.nelm.nhs.uk/Record%20Viewing/viewRecord.aspx?id=559640 Looks like it's been debunked. So if my new dentist tries to give me antibiotics I'll put him/her straight!! My last dentist was struck off so I've had to get a new one.........

I've been told that it's because of my shunt that I have to take antibiotics before any dentistry get done.

We've got to be honest with each other, and as you say Karen at least you and I are having these "episodes" so they should become less frightening if we know that we are not the only people having these thoughts. Just because they are not either logical or rational doesn't make them any less frightening. Another reason for you to give yourself another pat on the back. If you hadn't started this site we wouldn't be talking about this and making other people aware that they are not alone.

I've given this a couple of days to think about my reply, mainly because it's very difficult to talk about. I've experienced all the symptons everyone describes and in the begining I too thought that I was having another heamorraghe and was going to die. Now four years on I know in my head that it's not going to happen and there are reasons why the "experts" are so blaise about the risks medium to long term. BUT try telling my body that during one of my "spells", even now I try and convince myself that I'm not about to die but for a few split seconds I KNOW I'm going to die. I'm still here many years later so logically I know it's a long shot, but emotionally it's not so straight forward. I only wish that the "experts" had been open with me about the very real long term downsides about surviving and living post SAH. They all want to talk about "recovery" and how many people go back to living a "normal" life, but not one health care professional has spoken to me about the issues we're talking about on this thread. It's very easy to sit and tell someone that they are not about to die if you haven't experienced one of the "panic attacks" that some of us have on a regular basis. Only on here have I been able to talk about this, and amongst people that I know can relate to how I feel. On the positive side my BP seems to be under control again!!! Best of all the football season is almost here!!! Only a few weeks until the first BTFC game of the pre season 14/07/07 Scott

Post SAH I've picked up the only points on my license in 20 odd years of driving! Still having set cameras off I've been very lucky not to of gotten more speeding tickets both pre and post SAH (I will qualify that and say none of them was on single lane roads with anything other than clear roads). I am getting very fed up with the way I feel tho! Four years on and no sign of them going away. The good periods are getting longer and longer which makes the down periods more noticeable. Scott

At the moment I'm feeling really due to my blood pressure going through the roof. I was wondering how many of you suffer from the same and the medication you take, I've had my doses doubled (which bizarrely means less tablets) and something else added and I'm waiting for it all to kick in. I've been given.... Amlodipine 10mg Valsartan 160mg Bendroflumethiazide 2.5mg We all know that we need to keep our BP under control and along with the smoking my hypertension is the "smoking gun" of my SAH. The symptons I have are the same as ever but more intense dizzyness, detached feeling and strange headaches. I'm also picking up the wonderful sounding 24hr urine sample kit which promises to be a good day! Any thoughts? Scott

There's some good stuff on this site... http://www.srht.nhs.uk/patient--visitor-information/our-departments/sub-arachnoid-haemorrhage/pdf-store/ The website is a collabaration between Salford and the Wessex unit. Scott

Speak to your local PALS (Patient Advice and Liaison Services) http://www.pals.nhs.uk/ and speak to them, I would be demanding an Angio or at the very least access to a Neurologist. On the symptons and after effects side she's been through a potentially life threatening experience and needs support from the people around her. Brain injuries can have a wide spectrum of outcomes and it's very much down to the individual on how much they either recover or lose. (invidual case that is) Hope you get the help you need. Scott

Clare, You access the local services via referral from either the hospital or your GP. Make sure your Mum doen't slip through the net and get her both physio and an OT. OT (Occupational Therapists) are an excellent gateway to the other help your Mum might need. Try also and contact your local Headway and speak o them as well. http://www.headway.org.uk/branch.asp?step=1&navid=78 Is the link for Headway and they'll have a better idea of what help and services are available locally to you. Good Luck Scott

The MRI thing is something I also incured the wrath of the Doctors about..... My hip rather than my head tho, if they can sedate me for hip manipulation why can't they sedate me for a MRI? Scott PS The trial of my MRI was an epic story in itself!

Clare it's too short a time for anyone to say that "crazy mum" is here to stay. Drs really don't know how the recovery will go thats probably why they are ignoring/avoiding you. As long as your Mum can demonstrate even basic self care she'll be turfed out, our modern NHS for you! Take heart from the fact that I've never heard of anyone (touch wood) who's had major problems with the SAH in the weeks following initial discharge any problems will be picked up at the follow up appointment. Make sure you find out if the hospital has a specialist SAH nurse who can advise on the end of a phone, we had one and Lesley was a God send calming my wife and I in the first few weeks. Good luck, and I hope you Mum gets to grips with what has happened to her ASAP. Scott

Common recurring theme is that whilst most of us have been told exactly what we've been through a fair number of us can't remember. Given that a common result of SAH is short term memory problems why do they not write down what they tell us? Surely there is a way around this as I know for a fact that the doctors used to come around when I was on my own but what I don't know is what they said or did! Scott

Hi, Not a lot I can add to what others have already said. Time is the great healer and we're not talking short amounts of time we're talking an almost indefinite time.... Sorry to sound so negative but count the positives you still have your Mum and the likelyhood is that you will have for a good while yet. As Karen said I had almost an identical clinical history, and I'm still here four years later! Scott

There are huge problems with "hidden" disability, just because we don't present in a physical way people are all too easly dismissed and their problems swept under the carpet. Headway is an excellent starting point for finding information about the majority of problems any aquired brain injury (ABI) can cause, they can also point people in the right direction to get help as well. The stigma of "mental illness" looms large and can put many people off seeking help, help which is there if you know where to look. Scott

Pre SAH I used to help out at our local Headway, and as far as I know this is a fairly common condition caused by head injury. There were a couple of people who suffered from this complete lack of inhibitions with the opposite sex and we as helpers were fully briefed on how to handle any situation that could be seen as being even remotely "sexual". Scott

Polycystic Kidney and Marfans are "common" links in multiple annies, they are also indicative that a genetic cause is more likely. I am vaguely aware of a study going on at the moment about multiple annies but I can't quite remember where! Scott

Good luck and swift returns! Scott

Hi Cindy, Welcome to the family. Strange but all of us have more in common than just a bleed, we have shared experiences which mean a lot in the early days. Let your guard down and relax you're amongst friends here.... Scott

S'Ok Cindy we all understand how difficult it is to tell the story the first time. It does get easier with time, like everything else. The important thing is that you know we're here for you. Scott

Hi Moony, Welcome aboard! Scott

When I was kicked out of hospital my wife found it all a bit overwhelming (I can't remember what I thought). To be suddenly left on your own with someone who only a week earlier was unconcious and in need of 24hr professional care would effect anyone in that way. My home only has a toilet downstairs and I had to sleep downstairs for a week before I could start on the stairs to go to bed, even a simple thing like a pee bottle would of made my life so much easier. The complete lack of intial support probably came down to the fact that we didn't know what to ask for! No one told us what we would need given our circumstances, and if we asked it would of been provided! Much of the fault with my personal circumstances is that a SHO made the decsion to send me home (needed the bed space) whilst my Consultant and Specialist Nurse were on holiday, if they were there my discharge would of been handled very differently. Post intial tho I had a very positive experience with all aspects of my aftercare being handled in a very professional manner. GP, OT, Neuro Physio, and other support agencies being there for me. Scott

This has the potential to be very interesting. When I try and ask about why I'm dizzy all the time I don't get any straight answers. Upto now I've just written it off as one of the effects of SAH and accepted it. Scott

Logically yes is the answer to that, but all the doctors I speak to say that smoking weakens the artery wall and that is the most likely cause of my "annie" poping. I sometimes feel the smoking is too often the easy option when it comes to asking "why?" BUT then I remember that smoking is SO bad for you it deserves the blame, although in a few cases there are other reasons why an event occurs.

Hi used to suffer from those, but haven't had one since the SAH. I too wondered if there was a link and asked..... I was told that as migranes are so common amongst the general population there is no evidence to say it's a precusor to any sort of problems further down the line.