Hi from Pete the fish

[pete the fish]

Hi everyone. I am so glad to have found you earlier this week after months of surfing the web to find out more about what happened to me. I have been busy reading all of your experiences, and feel ready to introduce myself.

My name is Pete, I am now 46 and have been with my wife for 25 years. We have a daughter of 15.

My SAH occurred whilst having sex. It felt like someone had taken a flying punch at my eye. I stumbled to the toilet because I felt like being sick, but wasn't. I nearly passed out getting back into bed, telling my wife I am sure it will get better in the morning. I don't know whether I was sleeping or unconcious, but I made it through the night. My wife had already made an appointment with the doctor before I had managed to gather myself in the morning.

The doctor had a number of issues with my diagnosis as I, whilst feeling washed out and still having a banging head, looked OK. Diagnosis could be a thunderclap migriane or an orgasmic migraine, both of which normally subside. She was concerned with the lack of movement in my neck and the pain it was giving me. After a telephone call to the Norfolk and Norwich Neuro unit an ambulance was called to the surgery to take me for a scan. All this fuss for little old me over a headache.

The scan was negative, so I was relieved to think it was just a bad migraine. Once again the consultants thought I looked absolutely fine. The movement in my neck was improving and the headache whilst still there was actually subsiding.

As a precautionary measure the consultant wanted to undertake a lumbar puncture. As I did not see the colour of the fluid I was not alarmed, but my wife saw the fluid and realized it was not good. I tried to remain upbeat, but realized it was serious when another scan was organized with perfusion and an ambulance to Addenbrookes was arranged.

I was bumped down the operation list for 2 days before they coiled the sah. The immense emotional pressure for my wife, daughter and myself was at times unbearable.

At least all my vital signs were stable and I still had all my facilities.

Unbelievably, whilst I thought it was serious, in the back of my mind I thought that it could be fixed with some good drugs and a little rest. Lay off the wine and cigarettes and we will be back to normal in no time at all.

It was not until the neurosurgeon told me that there was no alternative to surgery as the next time it happens will certainly be the last. I was told I was extremely lucky. I didn't feel lucky. At that moment my little world shattered like a china cup dropped to the floor. Every thing seemed to move in slow motion whilst the surgeon explained the procedure.

I got the drift of what was happening but was so upset I couldn't really take in anything that he was saying.

My procedure was on Tuesday and I was discharged on Friday. One of the most memorable weeks of my entire life.

The team at Addenbrookes were stunning, nurses, surgeons, doctors etc.

My only gripe was I wish there were some after care help. It's very scary coming home not knowing what is going to happen next. I was still suffering with headaches, was this normal? A leaflet would have been good!

My recovery has been relatively fast. I am self employed, so I have eased myself slowly back to work after 3 weeks, working a few hours then gradually increasing the hours. I am not up to a full week because I get tired, but I still think I have been doing very well.

This was going OK, until recently when I have noticed my concentration is terrible and my close vision deteriorated. Both of which are very important for the work I do.

I have also been feeling low, I won't say depressed, but seem to have no joie de vie. All the fizz has gone from the lemonade.

Throughout my brief stay in hospital I could not help myself from thinking about the Monty Python song, Alway look on the bright side of life! I'm doing my best

Thanks for reading Pete

[Gill C]

Hi pete & welcome to the BTG family. I have to sya you are doing incredibly wel working after 3 weeks but adda note of cuation that maybe it is too soon to be so active. You've had major surgery & although physicaly you ook fine the recovery from brain surgery is a long one

I was lcuky ot have been given a leaflet when I eft hospital btu you can also get a copy from the Brain & Spine foundation who publish it. It's pretty basic & doesn't really deal with the overhwheming fatigue in any detail & certainly doesn't go into the emotiona rollercoaster that goes with an SAH 'er post op. i think every one of here will identify with yout feelings so it might be worth dpeaking to your GP about counselling (I have my first appt next week so there could be a long wait!). I also contacted headway who help people with brain injuries & our local branch runs modules on anger management, reationships etc so I a starting those next week too (you can choose which ones you want to do).

Please feel free to come on here & talk to us all when you're unsure or worried about anything or even when you jsut need a hug ( a group one s very theraputic). This place is fab & will really help you with your recovery & understanding what you ahve been through xxx

[karen78]

Hi Pete,

Thank you for sharing your story with us.

Welcome to what i hope will become your new extended family like it is for us on here.

I too had no after-care, and i am still struggling to accept what has happened, Please don't push yourself too hard and take everyday as it comes x

[winter]

Hi Pete and welcome to BTG! Glad you found us - this is a most helpful site for information, support, and friendship.

I too, received no after care, pamphlets, nothing. Other than being told to drink lots of water and get plenty of rest, I was on my own as far as finding information and support. It is amazing to me that so many hospitals have such little help for us afterward.

We've all been through it here, so please feel free to ask any questions, complain and rant, whatever you need. We're here for you!

Hope to hear more from you.

Do take care,

Carolyn

[maggie]

Hi Pete and a warm welcome to this wonderful online community. Your doing really well as Gill says 3 weeks and back to work! WOW!

If you follow the posts one thing is sure for all of us and that is there are so many ups and downs during recovery and seemingly at any stage we can expect fatigue to plague us and it wipes us out. It takes different forms but the result is the same.

I was very lucky with after care and left hospital with fatigue managment leaflets after having it explained thoroughly but it still hits you like a tonn of hot coals when it happens.

You'll find your 'joie de vie' ;-)than lose it again many times :crazy:but don't despair be patient and keep talking especially to the doctor and don't be afraid of not being able to do things same as before. It will happen eventually but just not yet!

Look foward to hearing more. And since it's starting to become customary to give out hugs have a BIG HUG frm me.x

[paul99]

hi pete

welcome to btg you are doing so well im glad your able to do the things you are doing but please please take note of your body and learn to understand what it is trying to tell you take time out and rest if you can its going to take some time to get over what has happened and you are at the beginning of a long road to full recovery

i think rod comes from your neck of the woods his wife suffered an sah and was treated at addenbrooks i think he will pick up on your posting as well i hope your family have recovered and are a little more relaxed as such remember they can come on here as well my lin had hers in 2008 and there are also other carers on here as well we are a family and we support each other no matter what i wish you well in your recovery and that take each day as it comes take care

[kempse]

Hi Pete - nice to meet you:-D

I think the others before me have summed it up quite nicely - we're here to support if needs be. Recovery is unique to us all and is not always as quick or as easy as we'd hope for.

Now that you have found this site, make use of it, you are amongst some very friendly people who are more than willing to give help and advice where those non-existent leaflets failed!

Sarah

[KelBel]

Hi Pete!

Welcome to the site! Glad you have found us.

There is a wealth of knowledge and support available on here for you. Any questions just ask and someone (or even many) will surely have an answer or some advice/guidance for you.

Sorry to hear you were also given no after-care - it's seems the majority of us experience a lack of after-care, or even some advice upon discharge from hospital. I was only told to drink 3 litres of fluid and rest...

Hope to hear more from you soon - hang in there, it does get better...slowly but surely

Take care

Kel

[Lin-lin]

Hi

Welcome to the site.

You are doing incredibly well and it is amazing that you have been able to work.

Remember to listen to your body. Feeling tired, (sometimes exhausted) post SAH is common and it is the body's way in getting you to slow down.

It is important that you balance your active times with some quiet, calm moments. Sometimes, I would get (and still do,) a little spaced out. This is often reduced if I have some quiet, 'me' time.

Your brain is healing from a trauma and it can't get better if you push it too hard. You would not put pressure on a broken ankle, so we need to learn to take the weight off our brains and give it the rest it needs.

I used to be in to fitness in a huge way and 'rest days' were always scheduled into my training programmes because muscle repair can only take place during rest. The same goes for the brain. It's great that you are as active as you are; but remember to reward your brain with some quiet days too, as a little gift and thank you to it!

You are very early into recovery. You are doing incredibly well; but don't be too eager to slot back into how you were prior to your SAH. You don't have to do everything 'yesterday.' 'Next week' is fine and 'next month' is better. Take things easy and be proud of what you have achieved already.

Lynne

[sallym25]

hang in there, it does get better...slowly but surely

Kel

Hello there Pete,

Like Kel says... slow and sure. I am 18 months post clipping now, so I'm a veteran in comparasin to you, and I'm amazed you felt able to do any work at all as early as 3 weeks. i was still in the hospital at that stage. By the time they discharged me, I felt a bit alien. Well done for that. Be proud of yourself. We are all so different in terms of recovery times, but that has got to be the speediest I've ever encountered. Please take it slowly and don't be disappointed if you find you have to pause for a long but well deserved rest. You have had such a massive trauma to deal with, that expecting to bounce back so quickly might be pressurising yourself too much. Hope it works the way you want it to, but be prepared for the fatigue to be pretty long term. I just love the expressions you used " the fizz has gone from the lemonade", and no "joie de vivre" . I was quite confused by " am i out of motivation or have I just no energy"? It's hard to know the difference.

I recently tried taking a job, which, due to weather conditions and the festive season turned almost full time. Unfortunately I discovered my cognitive problems are more obvious to others than I had originally believed. I am now trying to decidde if I am just a liability to the company owner rather than an assett. Time will tell.

No matter what, All we can do is our best. Am sure you will find this site a great source of support, as I , and many others have. Hope you continue to improve at such a speedy rate, Keep us updated.

Look forward to hearing how everything goes for you.

Sally xx

[Tina]

Hi Pete a very warm welcome to BTG....glad you found us ! Like you and many others i came home with no aftercare, nothing ! As the others have already said...you are doing very well Well done you ! Please take it slowly and rest up lots. Look forward to hearing more from you. Take care Tina x

[tracy]

Hi Pete

A warm welcome to this site, it has really helped me after i was left to come home with no information just go home and get on with it.

Mine was 29th June 2010 and i got going again in the Aug trying to do what i did before so elated i was a alive. But then in Sept came down with a bang, suddenly realised the severity of it all and tat i had to pace myself. I got very low with anxiety and panic attacks.

You need to slow down and pace yourself it really works.

Take care

Tracy S xx

[Liz D]

Hi Pete

Welcome to BTG. It's such a pity that we leave hospital with no information on what to expect. I found such relief when I joined this site, so many people further down the road than me and so much information! We should all leave hospital with the address for site.

[Louise]

Hi Pete

Warm welcome to the site, thank-you for sharing your story....

You are early in the recovery thing maybe you have gotten back to quickly although you are pasing yourself rest is the best tonic...

You are SO right about the aftercare help being next to zero it is very scarry but you've found a great place....

take care, rest lots, drink plenty of liquid....

[Vivien]

Hello Pete and welcome to the site

You are doing remarkably well, and I agree with the others, try and listen to your body.

I also was told nothing of what expect after being discharged from hospital except one doctor told me that it takes a long time both emotionally and physically to recover. When I asked how long, I was told ' How long is a piece of string' so basically everyone is different and they don't know.

Vivien

[Skippy]

Hi Pete

A very warm welcome to the site and to the family.

My circumstances were very similar to yours - when it happened. I felt no pain at all until I came to after passing out and tried to stand up. My right side was paralysed and I fell to floor which tehn sent the blood through the brain. i was taken to Barnstaple Hospital in Devon and then transferred to Derriford in Plymouth - they operated 36 hours after the bleed - luckily the found two an unburst anuerysm and coiled that at the same time.

Like you I went back to work three weeks later - more becuase of the anxiety of being home alone (my husband and I have a graphic design company). I slept during the day on a bed in my office, so I was lucky to have that facility at work. I found that my concentration suffered greatly and trying to proof read a 25 lanuguage leaflet gave me the most horrendous headaches which in turn made me angry and frustrated. I eventually learnt to listen to my body and rested more and drank plenty of fluids, whilst making certain changes to my diet. This all helped and 4 1/2 years on I can honestly say I'm about 99% recovered.

You are very early on in your recovery and its vital that you listen to your body and rest as mush as possible - I was advised to look it at as my brain having a heart attack - it helped put things into perspective cos the only time the brain rests really is when you do nothing.

As the others have said - if you need or want to ask anything there is bound to be someone here that can help, reassure and advise.

Take care

[pete the fish]

Thanks to everyone for thier uplifting comments and advice.

Of coarse you are all correct!

I have been pushing myself. I have always been extremely active, fishing, gardening, diy etc. It is a real blow to me to do less. But this weekend it has hit me, and my wife has advised me to cut back my work hours. She has been correct so many times and I am sure she is right this time. Pete

[Lin-lin]

It's all trial and error and we've all been there.

It is only through pushing ourselves too much and feeling exhausted as a consequence, that the penny finally drops and we take the foot off the accelerator.

No matter how many times people tell us to take it easy, it is only through suffering the effects of pushing ourselves too hard, that we begin to listen and slow down.

I sometimes explain to others that my brain is like a Trade Union. If I place unrealistic demands upon my body, my brain will 'down tools' and insist upon better working conditions!

I now use my tiredness as an indicator of what my brain needs me to do, instead of raging against the fatigue and forcing my brain to work beyond what it feels comfortable in doing.

By 'negotiating' well with my brain, it rewards me with better days; and as time goes on, the better days become more frequent.

Wishing you a nice, restful week.

Lynne

[Karen]

Hi Pete and welcome!

With time, I am sure that you will be able to achieve more .... most of us do. It does take time and patience to know your limitations as such, but there's not much that isn't achievable, even if it is, at a slower pace than before the SAH and you learn to work alongside your capabilities and the fatigue.

It's all a learning curve post SAH and I'm still learning at over 5 years on, but life does improve and I'm personally still improving and managing more than I could, this time last year....

Wishing you all good things.....xx

[adam]

That's a familiar story, no after care, it seems as though the surgeons know how bad it could have been and just figure, well at least you're still alive, get on with it!

I did so much research afterwards, I nearly scared myself to death, my sister who is a nurse got quite cross with me for looking stuff up all the time, mind you I think I know more about an SAH than my GP does now, I even know the names of the arteries in the brain..how sad is that.

I'm amazed at you going back to work, I was in hospital a similar amount of time to you, but there was no way I was capable of doing anything vaguely useful at home, never mind at work, are you sure it is the right thing for you, don't be hard on yourself if it turns out it is too much for you, you've been through a major life changing trauma, and are lucky to be alive.

I hope things do work out for you, listen to your wife, I've learnt that mine always knows best...or at least that's what I let her think

Good luck and best wishes. If you need any advice or just a shoulder to cry on, I found BTG was far better than anything available elsewhere, use us, moan at us, whatever it takes, we've all done it, it did me good, I don't drop in very often nowadays, but when I do it's good to see the support network is still there.

TTFN

Adam

[jess]

Hi Pete welcome to btg look forward to chatting sometime. Jess.xxx

[Grace]

Hi Pete,

Welcome! I am in the same boat as everyone else. I was only told to lift no more than 5 lbs and not to bend my head towards the floor.

But it is so amazing that you eased yourself back into work!

Take care,

Grace

[JayKay]

Hi Pete! Welcome and glad you found us. I can't believe you're back at work after 3 weeks - or rather, I can believe it but I'm glad (in a way) I was in hospital for 6 weeks in all, and that the people around me were much more aware of how serious it was than I was. I was all "oh I've survived this, I'll be alright" but I've been like a stupid fly hitting the windowpane over and over again... until now, 11 months on, I've really realised that I do have to take it easy and listen to my body.

I was very lucky with my aftercare - first of all, the National hospital have a specialist nurse, and she came to see me, gave me the brain and spine leaflet (you can view it online on their website), told me to get my family to read it, and gave me her mobile number saying I or my family could call any time. Then, I was sent back to my local hospital, and there I met with the social worker and people from the Stroke Association. I was only allowed home with a full care package (and this, my partner had been told by someone to insist on, but I don't know who that was...!) and I've had an OT come to my house, as well as sessions with the neuropsychologist at the rehab place.

Really, reading everyone's posts, it makes me realise we should be campaigning for equal aftercare packages across the NHS!! Who's with me??

[Sandi K]

Hi Pete! In Canada I too was sent home with no information. I spent three nights in hospital. While in hospital I had tests, one being an angiogram where the technicians, radiologist, and neurologist were all very happy that I didn't have an aneurysm.... But I didn't understand why everyone was so happy and relieved. When I was discharged I was given these instructions: no driving for 4 weeks, no swimming, no lifting over 25lbs. I was very confused. When I finally pulled myself out of bed 2 or 3 days later and my husband drove me to the family doctor she said 'it sounds like you have had an aneurysm'. I didn't find much help on the Internet because I didn't even know what to search for!

Almost 2 months after my event the family doctor printed out the letter from the neurologist that she finally received. It said I had a perimesencephalic brain hemorrhage. I finally had something I could search on.

I've learned everything I know from this forum over the past few days. It shocking really, that someone could have something so disruptive and so serious and be sent home with nothing.

I've been trying to 'pick myself up' and get back to work. I was working from home a few hours a day 3 or 4 weeks after. I expected to be back full time by now. Yesterday I took the gentle advice from our fellow NASAH'S and only worked 4 hours from home. I had planned to go in the office. I felt so great this morning!! What a difference! No kidding, just scaling back that little bit helped. I went into the office today and my head hurts, face hurts, I'm really tired. Tomorrow I'll stay home.

I'm lucky to work in healthcare albeit in I.T. No one that I work with understands what happened to me but they are supportive of my recovery so far. The pressure to be 'normal' is all coming from me.