Fellow bleeders

[Guest dirtypunk1970]

I think my brain haemorrhage was brought on by the use of amphetamines. I'm lucky to be alive and still mobile. I have to have another MRI in a month, after which I'm hoping to return to work. Had bleed on my birthday 17th feb. So don't think I'm doing too badly. didn't know amphetamines could cause this kind of thing. I feel like I've fallen off a cliff and landed on a ledge, been given another chance. My consultant said I've got away with it. Considering I went to hospital 3 times before I had a CT scan. I was sent home because, unfortunately for me, I look different, I have a mohican and lots of tattoos. I've been so very lucky.

[Karen]

Hiya,

Glad that you managed to get onto the site! You'll probably find that the site is quieter this weekend, as a lot of members are on their hols or just generally out and about.

Cocaine can also be a trigger, as can smoking, binge drinking, sitting on the loo... etc...there's quite a few different things. I suppose that it's the rise in blood pressure that causes the problem, especially if your artery is already weakened. ... it seems to happen in the "hangover" period.

Was your SAH caused by a burst aneurysm? A lot of us had mis-diagnosis, with GP's, A & E etc.....it seems to be the norm.

How have you felt since the SAH? Fatigue for most of us is still quite an issue. For me personally, I've had a slow recovery and physically, I still have a way to go and I'm 19 months on.........I thought that I would be back to normal 3 months post SAH.

Anyway, will catch you later ....

[Karen]

Hiya,

I thought that your name rang a bell when you e-mailed me! .....Sally Wilson said that she had given you the name of our website, as you hadn't had much help/support since your SAH.........Sally, is a lovely lady and Sami on our site, is having her SAH story published, some time in April.

[Guest dirtypunk1970]

Thanks for your reply, I was a bit concerned how my post would be received, as I've admitted to taking amphetamines here, and that most people would think I've brought this on myself. But if I had an aneuryism it would have burst at some point anyway.

I don't think the dangers of speed and other amphetamines are well enough publicised, most people know heroin and crack are 'dirty', but a great many of the people I know, and not just punks, use 'recreational' drugs on a night out. I had no idea this could happen, and I've learnt the hard way. I won't be doing that again. For the sake of a good night out? It's just not worth it.

I'm assuming I had a burst aneuryism, all I was told when I eventually had my CT scan was I'd had a bleed to the right hand side of the brain....

and I was kept in for a week. Before that they told me it was just a migraine, and sent me home on two occasions. It was only because I had lost all my co-ordination and was in a state of total confusion - I kept falling down the stairs and shutting myself in the bathroom, because I couldn't work out how to get out....And holding the telephone receiver th wrong way round! - that I went back to the GP and kicked off that I finally was sent back to A&E for the third and final time.

My partner had to manhandle me into the bath and wash me, he even had to pull my knickers up for me. I can't remember most of it. It was like being paralyletic drunk.

No, I don't feel tired now, I did at the time, slept through most of it. When I came out of hospital on 8th March, for about a week after I got tired very quickly, but because my routine's gone up the wall, I'm finding it hard to sleep at night.

If I'm in a busy crowded place I get disorientated and just switch off.

I'm just hoping this MRI scan comes back clear, I don't half miss work! Managed to get some spring cleaning done, though.....

Looking through oher peoples experiences, I realise how lucky I've been, because my bleed must have been very mild. Although I'm clumsier than I was, and my memory's shot to pieces. But I've always been a bit scatty and haphazard any how.

One thing that Ive noticed is that I forget my left hand side, not just my hand and body, but I'll only draw the curtain on the right hand side of the window and things like that.Bizarre...

And now they're waiting for the clot to disperse, in case its hiding another aneuryism, before I have another scan. Apparently I'm in danger of it happening again. I feel like a timebomb!

[sue]

Hi,

Happy Easter and welcome to the site. Sure it will be a great help to you, it certainly has been to me.

I had my SAH on 31st December 2006 so about 6 weeks before you had yours. Like you I was diagnosed as having migraine and after my initial visit to A and E I saw, over 4 days, 4 different G.P.s who came to my house to see me, (I couldn't get out of bed only for the loo) All said the same thing, migraine, sinusitus, even a chest infection, in the end I couldn't stand it any longer and my husband called an ambulance, got to hospital, had a CT scan, diagnosed with an SAH then immediately transferred to neurosurgery hospital.

I think you're right about the fact that if you look different you're sometimes not accepted, its a bad attitude to have!! It's good to be different!!

Glad you're not going to have any more speed, I'd never thought about it being able to cause an SAH before but like Karens said to you, there are loads of things that can do it. Before I had my SAH I smoked 20 cigs a day, thats supposed to be a contributory factor as well. Haven't had one since though.

Like you I get very disorientated in crowds of people, still get very tired, memory is shot! But, hey!!! We're here to tell the story!!

Anyway, have a good day,

Love Suex

[BIG AL]

Hi Dirtypunk,

Dont be worried about what people think regarding the speed!

Im sure a lot of us are reading your story a bit tongue in cheek remembering the things we got up to once upon a time???

I myself was a punk rocker once upon a time and even went on tour with THE DAMNED, we used to kip in hotel lobbys and get on the tour bus with the group the next day(great memories).

I think the worst drug i ever took was "MAGIC" MUSHROOMS? but what a laugh we had on them,smoked a bit of blow here and there( and you would be surprised to know how many people who smoke actually smoke blow and from all walks of life too).

Anyway i had blue hair,red hair,green hair and mohicans and never used to give a monkeys what people thought as im sure you dont with your mohican even though it was more common in my day so i do admire you for having the bottle to sport one nowadays!

I had two aneurysms and had to walk around like a timebomb for 6 months after my first op knowing i was gonna have to have another op and its a feeling that only someone who has to do it can explain? does that make sense? Just try not to worry too much(easy for me to say!)because now that youve been properly diagnosed you really are in great hands.

take care and good luck-BIG AL

[andyp]

Hi-Welcome to the site!

You sound like you are doing reasonably well considering what you have been through-I wondered if it was a bleed with no cause found-I am presuming that if it was an aneuryism that they would have to have taken some interventional action?

I guess none of us can ever be totally certain of the cause but the important thing is that you are still here and like you say you have been given a second chance!

Disorientation and problems with crowds are not unusual-but can be real frightening at the time.

So I really hope your MRI scan is clear and you get back to whatever normal is-make the most of the rest of your life and take care,

all the best

Andy P

[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

[Karen]

Hi Annie,

Me too.....I'm "Mrs. Boring"! ...... very conventional ..... but, very accepting of other peoples lifestyles .... it's what makes the world an interesting place ..... Frances, you will find the majority of people on this board, very accepting .... I don't think that anybody would care what type of hairstyle that you have or how you acquired the SAH ..... think that we've all probably overstepped the mark in the past and hindsight is an exact science isn't it? I had never heard of a SAH until I had my warning bleed.....but if I had known that I had a "ticking time bomb" in my head, then I wouldn't have done half the stuff in my life and that would have been such a waste. The fact is that we're all here for the same reason and we can't change what has happened and there's no point in beating ourselves up about it either, but hopefully we have learned not to make the same mistakes.

[Skippy]

Hey there

It doesn't matter what you've done in your life before this or how, why it happened - at the end of the day we all do the three S's - shower and shave being two of them I will leave third to your own imagination

Know what you mean on the tattoo front though - I have four and people do tend you look at you differently - its only ink so personally I don't know what the problem is - the thing is about this site - we don't care why it happened or how you lived your life - all we care about is that you are still here, you found us and we share our hopes, dreams and worries - this place has been a lifeline to so many of us, so there's only one thing left to say...

Welcome to the family

TTFN

Sami xxx

[Guest bikergrrl]

Not a bad thing to lay of the speed but having said that would it really be the cause of a haemorrhage any more than going to the toilet or having sex?

Speed was always my drug of choice in the past and although ive not had any in 12mths, know its not exactly good for me and am unlikely to ever use it again im more scared of drinking and having a hangover at the mo than I am of using speed!

[Guest dirtypunk1970]

Oi Oi! bikergrrl!!

I'm not really sure if the speed caused it, but its happened twice before on two other separate occasions a few years back when I'd taken some speed before a night out to make a good night better, and got instant migraines on both times...I just put it down to a white out and ignored it, and went to bed until the migraine wore off. And had no other effects afterwards.

Yet on other occasions I've taken a great deal of amphetamines in various combinations and suffered no bad effects at all.

Only this last time all my co-ordination went and I was in a state of total confusion, did I realise something was really wrong this time.

Does this mean the other occasions were like 'mini' SAHS, or some kind of a warning? Because the migraines I had then were exactly like the last one when a haemorrhage was diagnosed. I'd like to tell my consultant about them, but not sure.....

I'm more scared of drinking, because alchohol just brings out violence and aggression in me, and that's why I took speed, it kept me in control while drinking large amounts of lager, and it brought gigs to life.

Oh well..Back to gigs in 'black and white'

And to crown it all, I won't be able to smoke at gigs either soon, with the upcoming smoking ban...Although I have been trying to cut down, rather unsuccessfully......

My mate made me laugh (he's a biker) he said "what no drugs, no drink, no fags.......can you still have sex)!

[Guest bikergrrl]

Haha, well never been a smoker so im not going to suffer from the ban and I think I probably used speed more as a way of making me more sociable since Im quite shy or an ignorant ***** as some put it!

Gigs is another thing though, ok I live in north wales at the mo and the closest we have to gigs is a folk night several villages away but I was looking forward to getting away to loads of gigs this year since Ive changed my job but cos Im so noise sensitive im terrified I'll get there and want to get out again straight away!!

[Slim]

Welcome to the Site,

I look forward to hearing about your recovery, I too was sent home think most of us have been ( I'm a tattoo virgin)!

Some of the best advice that I've got is not too focus on the cause, but basically drugs aren't the best thing regardless of your health. I was really worried about having another Anuerysm, My consultant is quite to the point. He said there's nothing you can do about it. But I'm fat and he basically said lose weight and you could help prevent a stroke. He wasn't as blunt as that. But he was right.

I would concentrate on getting better and getting out to enjoy the summer!

Tog go bog e

Aine x

[Sasbo]

Hi there DirtyPunk

Sorry not to have been here to meet you - been away on holiday! Welcome to the site. Everyone I've met here has been absolutely fantastic - I had my SAH last September, so now at 7 month stage. It's pants! Still not back at work, still got, it seems, a long way to go and, like Big Al, I have a second aneurysm which is going to be sorted out when I've improved some more from number one. Mine was probably exacerbated by smoking so haven't had a cig since the day it happened.

The great thing about the site is that nobody judges anyone else, we can all be just us and are accepted for being ourselves. Hey, we'll have no problem recognising you at any meets will we??!! Where are you based? There are a few of us Northern/Midland subbas meeting up for the first time soon. All welcome - venue still to be confirmed.

Sarah

[Skippy]

Hey Sarah

Sue mentioned that Birmingham was probably a half way point for us all, so we were waiting for you get back from your cruise (did you go on a cruise? you never mentioned it!!) so that we could arrange a time and place. It will happen, we're just not sure when yet!

Nice to have you back

Sami xxx

[Sasbo]

Yo Sami

Yep, back from the High Seas adventures - can't remember if I mentioned it or not.

However, we are going away again end June/beginning of July. Fiona's not told me the dates yet, she says I don't need to know and I'll only get confused. She's right! We're going to Dubai, cat sitting of all things. A friend's parents live out there but come back to the UK for their holidays. Anyway, they need someone to live in with their cats whilst they're here. We've been doing it for a couple of years now but sadly one of their cats has died so we're thinking of surreptitiously finding them a young kitten to replace him. It sounds globe-trotty and I suppose it is, but it only costs us the flights out there, car hire (dirt cheap) and food which is about a third cheaper than here. Not sure about the flights with my head but I can always stick it in a bag if it's getting too much!

Sarah x

[Guest dirtypunk1970]

Hello, and thanks for welcoming me - hope you had a good holiday.. I'm hoping to be back at work fairly soon - it all depends on my MRI which is on 1st May. They've been waiting for the blood on my brain to disperse before I'm scanned again..the're concernd the blood could be hiding another aneuryism...So I'm hoping it's been absorbed back into my body, and scan comes back clear of further problems. Apart from being bored rigid, SSP is pants!!!

It's not just work I miss, its the social interaction, too, we all love a good moan where I work! - I'm a chambermaid.

I'm based in Herts. I wish to God I'd been able to stop smoking, I didn't have 1 fag in nearly 2 weeks when this happened, wasn't capable of it, but as soon as I 'came back' the first thing I wanted was a ****** cigarette, some people have said even the smell maks them feel sick..not me...only Chanel No 5 does that for me!! And hairspray. Guess I'm just lucky like that

[Sasbo]

It's all pants! It's official - SAHs are PANTS. It finally dawned on me this morning, all I want is to be me again. That's all, not a lot to ask. The pants thing is not knowing if that'll ever happen. If there was a light at the end of this tunnel then I'd be a bit more patient (I think, but then again, maybe not!).

But enough of the moaning. Good luck for the 1st May, fingers crossed and all that. I still miss smoking but it does get easier. I think I'll always miss it, still get the odd pang now but I do feel better in general (though I hate to say it and prove all those anti-smokers right!).

Now I have to ask and forgive me if it's impertinent but - how do you keep your mohican mohicanned? Surely you need hairspray for that and if so doesn't that make you feel sick? Pretty much agree with you on the Chanel #5 though.

Cheers

Sarah x

[Karen]

Definetly agree, that having a SAH is total PANTS!! 22 months on and I'm surprised at how much patience that I actually have.... mind you, haven't had much choice in the matter...

I would also love to know how you keep your hair up, if you don't use hairspray or is it some sort of wax or gel? .... and being even more impertinent than Sarah, do you do it every day.......sorry, hair that is?

Good luck also for your next MRI....

[Guest dirtypunk1970]

I start off by crimping my hair, then backcombing it, then I hang upside down to start it off....Then use a very strong hairspray called "Helmet Head" which sets like cement, and its got a really powerful smell, which is so strong it now makes me gag, which it didn't do before the SAH. When I do my hair now I have to have all the windows wide open!! So not only does it make me feel sick, I get freezing cold, too

I only usually spike it up if I'm going out to a gig, or I'm away on a weekender, then I sometimes leave it up and 'repair it' in the morning. A lot of people ask me if its real, and can they touch it.

Another strange question I'm always being asked is my make up tattooed on..I wear a lot of bright colours.

In all, it takes me about 2 1/2 hrs to get ready!!

Only the other day it took ages, I had to really concentrate. I was ready for my bed by the time we left the house.By the time we got home, I was on my knees with it all.

But I've proved to myself I can do it.

I agree with you & Karen about the patience, I am SO impatient with myself, I get so cross and frustrated. I try not to, but it is hard.

Said earlier I'm a chambermaid, and I lost my rag changing the duvet cover the other week, and I thought, my God, how am I ever going to get back to work if I can't even change my own bed, never mind 10 others on the trot!!

[Sasbo]

The frustration and the thinking you're ok and then suddenly realising you're not is the very worst thing. Also, when I get tired I get very clumsy and impatient with people and things - nothing and noone is safe when I get going!! It's because they can't see what we're having to deal with. We really really need to come up with some sort of sign, similar to what you said about the tattoo. A ruddy great arrow on a hairnet maybe?? Can't make us look any more stupid than I feel at the moment!!

Sarah x

[Guest dirtypunk1970]

I couldn't agree more. Just when I think I'm improving....

Especially as I've always been clumsy and forgetful, I think now, did I do that because of what's happened, or would I have done/forgotten that anyway?

Then other people making fun because of my extra clumsiness/forgetfulness. Then telling other people the sort of things I was doing when I was at the worst of it, the confusion and disorientation and making funny anecdotes about how I was looking for toothpaste in the dog biscuit cupboard. And yes, looking back some of it WAS quite funny, and lets face it, you gotta laugh...

But nobody knew just how ill I was...

Nobody knew how ill any of us was at the time of our SAH's.

And as you said, nobody really understands what we're all going through now, except us.

My partner Simon suggested I paint 'Stroke Victim' on the back of my leather, but I pointed out that most people would think it was a band I listened to, and would ask who they were!!

'You look normal!' all my friends say with surprise, and ask if I've got the feeling back in my left hand side yet, and trying to explain its not as simple as that is very difficult.

Yes, when I get tired I get clumsy and VERY irritable, and I feel stupid when I walk into things, even when I'm on my own

Frances x

[Blondie]

I used to do a fair bit of speed, and I do wonder nowadays how much that may have contributed to my aneurysm - although I hadn't done any for a few years when I had my SAH in Oct 2004. I was a heavy smoker too - but not once since the SAH - scares me too much!

I had to wait three months from finding out I had a 2nd aneurysm to having it coiled - it wasn't a good time. I am also clumsier now, and I get confused more easily - it definitely takes me longer to learn new things, and I tire out more easily. Also - I am useless once I'm tired - I stop functioning and end up weepy and pathetic. I dont feel that people are very tolerant - I think because I don't look any different, or because I mostly seem well.

I sympathise with you Fifibucks - I spent a lot of time missing my old self. I do think I've changed permanently, tbh - but for the better on the most part.

Just joined the site today - really pleased to have found it.

Blondie