Were you aware that a SAH is a type of stroke?

[Karen]

I would be interested to know, how many of you that have experienced a SAH realised that it was a type of stroke? Were you told that it was?

From my own experience, I wasn't told that a SAH was a type of stroke. I only discovered from my own research that it was ... many months, after I set up Behind the Gray and hence the change of description to - "Subarachnoid Haemorrhage and Stroke Support Group"

However, I would also be interested to know, whether that knowledge would have helped you or not? From my own experience, I have discovered that if you tell somebody that you've had a brain haemorrhage which caused a stroke, they tend to be more understanding and normally can relate to a stroke, rather than the SAH itself ....

On the other hand, I'm not sure whether the knowledge of having a stroke, is a good thing or not, as in terms of recovery and positivity with recovery. I visit other stroke websites and found a comment the other day, that there weren't many positive postings .... and to be honest, there wasn't.

So, would you have found it a help or hinderance to your recovery, to have had that knowledge .... and to a degree, is ignorance bliss? ... We all perhaps have a stereotypical image of someone that has had a stroke .... I did, with my own Grandmother who sadly passed away after a stroke due to a blood clot and I'm not sure whether or not, the information would have helped me in my early months.... personally, I don't think that it would have helped and maybe would have been more of a burden in the first year or so ...

As for the FAST campaign, I still think that it didn't do enough to hi-light SAH .... as in sudden onset or prolongued headache .... but then again, the only anagram that I can come up with to include the letter H is SHAFT .... which probably wouldn't make for good advertising copy! On a lighter note, maybe they could have used the following tune from Isaac Hayes! http://www.youtube.com/watch?v=AAa5rP64YbQ - certainly brings back memories!

Would be interesting to know if you guy's feel that it would have been helpful or detrimental in your recovery. xx

[Louise]

From the start I knew that the SAH was a form of stroke..

No the FAST campaign I didnt find was good really although hopefully it saved many lives my Aunt had a mini strok and to be honest (as I was there) the only thing in FAST that was evedent was 'F'

Although sometimes with the SAH its SO difficult to detect which is why people get so annoyed that it was missed for hours or days or thought to be viral, but I know that its just not that easy (personal knowlege of someone else)

For me it wasnt one way or the other knowing about the stroke in my recovery....

but be interesting to see the responses to this on Karen.....

[Karen]

Hi Louise,

From what I can see and have heard, the FAST campaign has saved lives, that's for sure .... which can only be a good thing! ...

However, the survival rate of SAH is still pretty awful and something that needs to be addressed and in my opinion needed to be included in the FAST campaign ... Another area to be addressed is the education of GP's ... there's plenty of warning signs that still seem to go unheeded ...

I agree, it will be interesting to hear the responses .... as you know, I'm nosey!

I know that I'm going off topic Louise, but lovely photos! xx

[johntaras]

Hi Karen,

I must confess I am a nosey curious inquisative person who likes to know why everything happened. I still have issues with my lack of memory of the event and subsequent seven weeks. Any information that helps to expain what happened I believe is helpful. The not knowing I feel does more hurt or worry.

A stroke to me before this event was always a picture of a person with a dropped face (palsy) I was ignorant of the real effects. The variety of symptoms and effects from reading the blogs are limitless. The use of the phrase Subarachnoid Haemorrhage makes the event sound very dramatic. But of course not as many people are as lucky as me with their recovery, and of course sadly some people do not survive or recover. My family could not believe the news that greeted them from the A&E Consultant, I was just dehydrated, I could not have had a Subarachnoid Haemorrhage, that threatened my life.

I know not everyone is like me and wants answers to every query. But that is me and I am glad that I have retained that characteristic. But judging the FAST Campaign it did not help my family diagnose my condition. But I did not display the normal symptoms.

So Karen too me detail is important. I like to know as much as possible.

[paul99]

hi karen

thanks for bringing this up as it has been driving me nuts ever since lin collapsed and being in the pre hospital care for over thirty five years all on the front line and being told that lin had a stroke is really antagonizing me rotten to say the least

the interpretation of a stroke is that a blood clot has blocked the flow of blood to a certain area of the brain and deprived it of oxygen and therefore that area of the brain affected affects the area of the body hence the dropped face and lack of movement to the limbs

a tia means that a temporary blockage to that area hence a fairly short time of disablement in most cases

the sah is in a different class of its own because it does not discriminate who it affects 99% are very sudden and very explosive presenting many different symptoms but the main one in every case is a blown or grossly enlarged pupil on the side that the bleed is it does relate to the blood pressure rising very suddenly and because the artery is weakened by weak walls the body cannot cope hence everything just blows be abit a small bleed or a catastrophic bleed

no matter how big a sah is one thing to remember is that the brain is being starved of oxygen at that location and the blood covers the entire brain but wherever the vessel burst is the area immediately is affected so as far as i am concerned and the sooner drs realize that the person who has suffered an sah should rename the person as a sub arachnoid hemorrhage causing a stroke not a stroke

a stroke is classed as a closed blood vessels blocking

the mechanism of a sah is totally different to a stroke

sorry to go on

Edited May 17, 2010 by paul99

[Ern]

Hello.

I sort of new from the start that the SAH was a type of stroke. my wife was a medical student at the time, ironically enough, studying neurology at the same hospital I was admitted to. It was a med student who pointed out that I had had a SAH.

There is an appalling lack of information about SAH both in the medical profession (The number of people who have been misdiagnosed is staggering) and in the general population. I must get around to putting my story on the site. I didn't have the sudden onset headache or the prolonged painful headache. but I did feel a pop.

It's risky generalising about the symptoms. That is why they missed me. A male? 35? No trauma? He wouldn't be having a SAH, surely?

So. I think that knowing what I had to contend with was a big help for me. It also gave me a new perspective on what my dad (he had a stroke in his fifties) went through.

but nothing could have prepared me for the things I had to go through to get back to being me.

The F.A.S.T could have given a mention of the SAH but then as there are many types of strokes, where would it have ended.

[Liz D]

Hi Karen

Prior to my SAH (I was 5 weeks into a new post) I worked for the department for the elderly in our local general hospital as a secretary. Our office was right outside the stroke ward, so I was very often on the ward. I regularly came into contact with the consultant (who has spent many years in stroke research) and the stroke research nurses. I also came into contact with many stroke patients and all the relevant bodies involved in rehabilitation of these patients. I knew that strokes were caused by a clot and had heard that they could also be caused by a bleed. But never once had I heard of a SAH! I never knew about the sudden onset of a severe headache and certainly even after my SAH I didn't put my bleed with any kind of stroke. That is until my neighbour, a nurse workng on the stroke ward, told me!

The doc that dealt with me on the ward when I was admitted was a colleague. He had worked on the stroke ward for 12 months and had just moved to work in the medical wards. From the outset he said it was a SAH. I think having known me for a year and then seeing me in such distress, was why he was so adamant, even though the CT scan was negative. I'll be forever grateful to him because he phoned Edinburgh Western Neuro docs straight away and was told to treat it as a SAH until it was proved that it wasn't. So my treatment started immidiately and SAH was diagnosed the next day by lumbar puncture.

I am almost evangelical in spreading the word about a sudden severe headache because of my experience. I had my SAH on the Tuesday and went to work the next day!! The bleed on the Saturday is called a sequential bleed. I thought I'd had a severe migraine as my migraines could be horrendous and last 3 days! I've also spread the word among my exended family and this is how I discovered that my parental grandfather died from a SAH, my 52 year old cousin died last June from a SAH and another cousin suffered a SAH Feb 2008 and survived.

There just is not enough information out there about SAH. No one, in all the years of being treated for migraine told me the relevance of a headache coming on suddenly, if they had done then I would have gone to hospital when I was 37 and had just had a SAH!

Sorry for having a rant but this thread has touched a raw nerve with me!

[Karen]

Thanks guy's for your feedback and I agree with all of your comments ...

John, I'm like you and have a real need to "know" .... information is power and after my warning or sentinel bleed 10 years ago, I really knew that something wasn't right and took to researching it on the internet ... I truly believe, that this saved my life, 4 years later and when this SAH hit ... my family knew what I had researched and when I was too ill to relay it to the paramedics, they did it for me.

John, I have a lack of memory too, not anywhere as bad as yours ..... but for me personally, it's something that I don't need to remember and when it happened, I felt total peace at that point and that experience still gives me strength, that when it happened and I couldn't take any more pain, I didn't know anything about it, so maybe the brain has a way of blotting it out... ? May be the drugs that we're given at the time, also play a part, as I was having seizures....

Paul, I agree with you .... I had a SAH that caused me to stroke .... unfortunately, it's like a double whammy ... the bleed on the brain, the stroke that follows it...and the fall out..

Ern, I often think that peoples description of their SAH can vary .... some describe it as a pop, being hit over the head with a baseball bat or a pro-longed and severe headache .... my two experiences vary .... the first was having a "weird" feeling in my head and then being clubbed with a bat over my head .... my 2nd was completely different and it was a pro-longed and severe headache ... well over a week, but boy, did it cause havoc!

Liz, I feel that people who have experienced a SAH, should find out their family history .... my Grandfather died of a SAH in his late70's and we have a history of stroke on my Dad's side ... my Husband's Mother also had a brain aneurysm (coiled before it bled) and died of a brain tumour ... so both of my children are aware and if they're experiencing problems, then hopefully this info will help them to be taken seriously if anything arises.... well, let's hope!

The FAST campaign could have taken into an account a stroke that is caused by a bleed .... the abysmal survival rates of SAH deserve to be taken seriously.

Hope that this thread hasn't caused anybody upset ... if it has, then I apologise. xx

[myratas]

Hi Karen

To be honest I never was told what I really had, maybe I was but I cannot remember, like John there is a need to know. My hospital did not even tell me exactly what I had I read the information on the discharge form the rest I had to learn from the web and from this site.

I did not know that a SAH was a stroke I always thought what has that to do with an aneurysm rupture, off course now I have learnt a fair amount on SAH and I feel we are misunderstood by others when we say we had a brain haemorrhage which is a like a stroke and trying to explain the differences is too tiring for me.

A lady that lives just next door had a TIA recently, she is about 54 years old I was happy to see her back to her old self again but she had a hard time wondering why my stroke is different to hers and why am I left with disabilities and not her. I told her about this website, well I showed it to her, she's not computer literate and now has a better understanding.

Sorry if my post does not make much sense, I am too tired but hope this helps Karen.

[bogbrush]

I didn't know that SAH was a type of stroke until several weeks afterwards when I started to do my own research. When I had my SAH, my wife was told I had had two strokes and that they couldn't afford a third. This was confusing to both of us until we found out that subarachnoid haemorrhage is in fact a haemorrhagic stroke. I don't think it would have made any difference had I known that from the start.

Karen, you're right though. People understand better if you say you had a bleed on the brain causing a stroke.

[Karen]

Thanks Myra and Keith for your response ... Always very interesting to hear of everyone's personal experiences...xx

Keith, I'm not sure what my family were told or have ever asked what they were told, but I was never told personally that a SAH was a type of stroke ... unless, I wasn't very compus mentis at the time ...... which could always be a possibility! However, when I mentioned the word "stroke" to Eric when I found out, he was pretty shocked ... so I doubt that it was mentioned to him .... will have to ask!

[tennissmithy]

Hi guys

I had absolutely no idea at the time or for nearly a year later until I joined this fab website and found out from there. I do agree that if I mention to friends that I had a stroke I get a completely different reaction to a SAH. I think that people are often too embarrassed to ask what a SAH is so they just want to live in blissful ignorance.

As stupid as it sounds I have had people who haven't realised how bad it was until I say that my insurance paid off my mortgage and then people go wow it must have been bad then, tell me exactly what happened- how stupid is that!

When i first went to my doctor after being discharged from hosp, my doc had no idea and I must say no other doctor at my surgery has either or any of the registrars at the hospital. It really infuriates me!

I rang my local paper last week to say that as it is brain injury week this week did the health reporter want to run a story on my SAH-heard no reply- thought that would help promote SAH. Might ring him again tomorrow.

[Karen]

Thanks for your feedback Laura!

I didn't realise that it was brain injury week .... so, good luck!

[paul99]

thats true Karen

i just wish the drs treated every who suffered an sah not just as a stroke but treat the person for the cause and not just the symptoms shown after because there are far more complications which needs treating an sah sufferer than there is treating a normal stroke thats what upsets me it makes me very angry

[JayKay]

It's interesting to read everyone's take on this. I was told in the night after my CT scan that I'd had a SAH. I had heard of SAH because I'm a medical secretary, but I didn't know the statistics - which is probably a good thing! I realised when they said they were blue lighting me to Queen Square that it must be serious because that is the leading hospital (or so I understand) for brain surgery, but still I was blissfully unaware of the dangers. I think it was because I felt so ILLLLL ! When my pop happened, I felt very suddenly like my head and neck and upper chest were in a pressure cooker. I don't remember feeling like I'd been hit over the head, however I felt "this must be what a stroke feels like", and found myself running through FAST in my head. When I realised I could speak, didn't have a drooping face and could move all four limbs I thought it couldn't be a stroke.... But I'm glad I insisted to the paramedics that I needed to go to hospital. The young F2 there insisted on a CT scan and the rest is history.

I was told in hospital that SAH came under the heading of stroke, and when I got back to Watford the volunteers from the Stroke Association came and talked to me. One of the guys came back with literature, and in it, it said that 80% of strokes are ischaemic (clots/blockages) and 20% are bleeds, or "haemorrhagic strokes". So yes, definitely a type of stroke.

Not sure if that helped me, but having access to the Stroke Association volunteers was helpful, as was the Brain and Spine Association booklet on SAH given to me by the Specialist Nurse in Queen Square.

I just wanted to say also that since I've been home I've had contact with the Neuro nurse via Queen Square, and I have a full package of care in place via my local hospital with visits from Occupational Therapist, a neuropsych consult tomorrow, and a patient held record which is a big red folder where all my attendants can write their summaries etc. I am blown away by how good the follow-up is, to be honest!

[Karen]

Paul, I couldn't agree more with your comments and there are a lot of complications post SAH, that need addressing......even many years down the line.

Jen, sounds as though you're receiving decent after care and it's something that everyone should receive as the norm, but it does tend to be a postcode lottery, as what to expect after being released from hospital. It took me 2 years post SAH to get an appointment with an OT .... by the time it came through I didn't need it and cancelled it, as couldn't see any point by that time ... kind of been there and got the T-shirt scenario!

xx

[paul99]

jen

you were in the best hospital at queens sq thats where i did most of my training do you still have to go down the ramp to the basement for the ct scanner i learnt an awful lot there most of all to read the signs and symptoms and how to transport the patient feet first in the ambulance the other good hospital are kings collage or Atkinson Morley which i think is now attached to st Georges which are all good the other one which they closed down was the brook hospital i Greenwich im glad they got all your care plan set up and that you are benefiting from it on a daily basis good on you girl

[blueday]

when people here had a sah followed by the operation to stop the bleeding followed by their stroke......did any others have seizures?

[KelBel]

Hi Karen

I did not know at first that the SAH was a type of stroke, as when I was in hospital being asked to sign the consent form to have the aneurysm coiled, I was told that; if I had the op I would have a 5% chance of having a stroke and without the op I would have a 95% chance of having a stroke – therefore I initially did not think that the SAH was a type of stroke!

Having trawled the internet after discharge (when I was able to) I then read somewhere that an SAH is a haemorrhagic stroke. But it did not state that in all the information I read so I was still a little bit confused as to whether I had had a type or stroke or not; although I now know that I did.

The FAST campaign is good for the well-known type of stroke but not for SAH.

I agree with John, I have to know what is wrong, and why it has happened, and when, how, who or what may have caused it and what to do to prevent it. Knowledge is power and I also like to know. That is one of my biggest problems with my ‘story’, the lack of information provided, even when I have asked questions I have not always been given the information I needed.

I apparently did not have any neurological deficit when admitted to hospital; however I had experienced classic symptoms of SAH in the 4 days prior to being admitted. It felt as if something had gone ‘pop’ in my head, then I felt pressure in my head, then felt nauseous. After about an hour I started to get a stiff neck and had trouble looking down and then needed to sleep. I woke up feeling sick again and was violently sick for some time, having to hold my head as it was difficult to bend my head forward to be sick. I then suffered with excruciating headache at varying degrees, for days; which at times felt as if someone had smacked me round the head with a baseball bat.

I too suffered with migraine for years; they would start with me experiencing pins & needles and numbness in my fingers, nose and lips, a metallic taste in mouth, followed by an almighty headache with scythe shaped kaleidoscope patterns, and then nausea. I would have to lay down and sleep for at least an hour, and would then feel as if I had a hangover for at least 48

hours…

I find it amazing that some people get loads of after-care and others, like myself get nothing! It's no wonder I am struggling with the emotional side of things right now.

Kel x

[Janet]

Hi Karen

I didn't really know it was a stroke until I joined the site. I did know that my local hospital that I was in for nearly a week before being diagnosed and transferred to Walton, thought that the Third Nerve Palsy was caused by some sort of stroke behind my eye.

I really don't think that knowing it was a stroke would have affected my recovery either way.

[JayKay]

jen

you were in the best hospital at queens sq thats where i did most of my training do you still have to go down the ramp to the basement for the ct scanner i learnt an awful lot there most of all to read the signs and symptoms and how to transport the patient feet first in the ambulance the other good hospital are kings collage or Atkinson Morley which i think is now attached to st Georges which are all good the other one which they closed down was the brook hospital i Greenwich im glad they got all your care plan set up and that you are benefiting from it on a daily basis good on you girl

Yep, I think it was the best hospital! I don't know about a ramp to the basement; I think it's on the ground floor, but then I can't remember much about Queen Square...!

As for after care, maybe we should somehow petition the powers that be for more information on SAH and its after care... It doesn't seem right that some people are left in the dark. I am SO grateful for such great aftercare; as I said somewhere else, I've had the OT at home, I am followed up by Queen Square, and today I had my first meeting at the Rehab place, where the neuropsychologist explained what we are going to do and put me on the waiting list for physio so that we can work out how to pace my exercise regime to get back to "normal". I also have a bright red folder called "Personal Held Record", where every person I come into contact with can enter details etc. It's really good!

[Louise]

Blueday, I had the SAH & a seizure....

[Skippy]

Hi there

I knew it was a stroke cos my hubby told me that i'd been paralysed on one side. I find that people do relate more once they know it's a stroke as they can picture what a stroke victim looks like and the problems that they have to overcome.

I agree that there needs to be more awareness for SAH stroke and for people to recognise the signs, not only in others, but possibly in themselves.

[rod123]

Hi Karen, the consultant who looked after Merrill refered to her sah as a stroke on many occassions, or a bleed, Rod

[Anne Fleming]

Hi Karen

When I was in hospital the staff referred to my SAH as a brain haemorrhage, I don't remember anyone calling it a stroke except when the Specialist Nurse chatted to me and informed me it was also a type of stroke. As I might have said before on this forum, it didn't feel like a stroke to me. Mine was a sudden extreme pain in my head, being sick and confused but no loss of feeling/movement on one side or things which I would usually associate with a stroke.

After my op I had 2 vasospasms and they certainly felt like strokes with the side of my mouth drooping and losing power on one side and difficultly speaking.

Is a vasospasm a type of stroke? A friend said to me when I came out of hospital that it was amazing that I had survived 3 strokes within 10 days (one SAH and 2 vasospasms). This alarmed me as I didn't really think I had any strokes but maybe she was right.

Another thing which puzzles me is that I'm sure I've read that you can have a SAH but it doesn't always cause a stroke. I can't see how this could happen. Does anyone know of this?

If I meet anyone nowadays and it comes up in conversation I say I had a brain haemorrhage rather than a stroke. For me brain haemorrhage reflects the sudden intensity of the event, like being hit over the head with a hammer.

Best wishes

Anne