Newbie - Rachel

[Rachel]

Hi,

I stumbled across this website whilst trying to find information on the web re PSAH and I am so glad I did. I will try and keep this short and sweet so here goes.

I am a healthy 40 year old working mum of two with no previous medical issues. On 3rd July 2011 whilst sorting out my wardrobe I felt like I had been hit over the back of my head with a bat, collapsed, waking up inside the wardrobe, with

the 'worse headache' ever, vomiting and feeling as though my head was going to explode. By the time I was able to get downstairs to get my partner, I was unable to explain what had happened other than I had a headache. He thought that I had a migraine even though I have never had a migraine and got me to bed with pain killers. I spent the rest of the afternoon and night vomiting, and in agony and feeling as though the right hand side of my face had dropped even though it hadn't.

The following morning, i didnt feel any better and took myself to my local GP who arranged for me to go to A&E. I had CT scan where they told me it was fine and that I was to have a LP. Due to the initial result, I was told that I had 'pulled my neck'. I was then informed that I had had a SAH and required a further scan with dye but they couldn't find the causeand no intervention was required. After 3 days in hospital, I was sent home with a bag of pain killers and told that this wwouldn't happen again....that was it, no follow up appointment, just to go home and get on with it.

More than 4 months after my PSAH, I have yet to have a day without a headache which range from pressure type headaches to migraines. I have problems with my short term memory, some word finding, fatigue and mood swings. I have spoken to my GP on a regular basis re the above and just get blank looks which is very frustrating.

I must say that I have been left feeling out on a limb, frustrated and upset about it all with no answers to any questions I have asked.

I have finally been referred back to the hospital where I am due a MRI scan this month and a further consultation in Dec.I am wanting to go back to work by the end of the month or certainly before Christmas if I can control the severity of

the headaches.

I feel very lucky especially after reading the experiences of others on this site and I can honestly say that I have received more information from this site than I have from the hospital or my local GP. I no longer feel like I am imagining my

side effects having read other peoples experiences and that things will get better. Thank you

[Bill B]

Hi Rachel,

your bleed may not have had a specific source(according to the medics) but it was a bleed , non the less, and the residue is the same for all of us.

It seems to be typical of Non Aneurysm SAH's that no urgency or due concern, is applied by the professionals.

In a way ,those of us that have had burst aneurysms are lucky, because we have a definite cause for our event.

We are repaired, fixed and propelled back into society with a definite assurance that we will be OK.

We are not, of course, but that is a much longer story.

The vague, head- scratching world of NASAH is much more disturbing, in my opinion.

Your up- coming scan will, most likely, show nothing at all, and you will be sent home with words of solace and encouragement.

The medics will probably be correct, when they say it is very unlikely to reoccur.

What they won't tell you is what they cannot imagine.

There may be no, actual, clinical brain damage but the effect of the blood spreading across the surface of the brain has a definite impact.

Many people on this site will testify to loss of concentration, stamina, familiar words and a myriad of former instinctive functions that , frustratingly,

evade you.

If you can return to work by December you will have done really well.

I'm sure everyone on this site will agree, that you should really take your time and make sure the headaches are gone before you return to the

treadmill.

Remember, when you're back at work, you're back at work, with no scars or deformities, everyone will soon forget, that anything happened to you at all.

Take care Rachel, this was no small event.

BRAIN- HEMORRHAGE, say it out aloud, it's the same as HEART-ATTACK or CANCER- SCARE and if you survive, your status, in the public hierarchic of

illness, should be the same.

After seven years of recovery, I milk it now. I'm a medical miracle, and I make sure all my bosses know it!

Take your time, slip back in when your ready, on your own terms.

All the best,

Bill B.

[goldfish.girl]

Hi Rachel,

It is awful to be given no information after this happens - I think a lot of members on here have gone through the same. It is a very scary & frustrating place to be, more so when your GP seems clueless too!

You could ask to be referred to a Neuro psychologist who can help to explain what has caused all the symptoms you have now and help you learn how to cope with them. Several of the other members on this site contacted Headway (there isn't one locally for me, so I have no experience of them) but they seem to be extremely helpful too - maybe you could look them up too?

Best wishes

Michelle x

[shirls]

Hi Rachel

I don't think GP's have much idea to be honest I feel like giving him information rather than him helping me. I was luckier than you if you can call it lucky in that I had a cause and a repair but this site has given me much more information than the hospital although they were fantastic it has only when I have got home and began recovering that I needed answers. I have found the headaches are getting better slowly but if I do to much or don't drink enough then I feel ill. Good luck I'm sure you will get help from the peeps on here.

Shirls

[Rachel]

Thank you for your replies and advice, all noted and taken onboard.

Work have been great and very understanding. When I do go back it will only be for a few hours per day and I will see how it goes from there. I am not looking forward to being amongst a lot of people as I can't take in the conversations and hate the noise. Having considered myself very outgoing, sociable and confident person, since my PSAH I don't like to be around a lot of people, hate being in shops and noisy places. I feel agitated which then causes my speech to do weird and wonderful things which doesn't fill you with confidence. I will definitely be taking one step at a time as I have found that what you were able to do and what you can do now are two very different things.

Will be looking into Headway - thanks for the advice x

[SarahLou]

Hi Rachel,

Welcome to BTG, this site has been a god send to me. A light at the end of a very dark tunnel.

It's full of advice, support and understanding.

Reading your latest post is like reading my own thoughts. I still feel the same with crowds and busy shops etc but it has got a little easier over time.

As I say to everyone.. Read 'a letter from your brain' in inspiration on the home page. I still draw strength from that piece of writing.

As you say yourself, it's all about taking one day at a time.

For me it took a while to accept I'd never be the person I once was. Some times resentment does come through and I kick out at the world for a bit but I think that's normal, we go through such a range of emotions.

Take things slowly, give yourself patience and understanding.

It's great that your work are so understanding. I'm 5wks into my phased return to work. I'm enjoying being back, getting that little piece of 'normal' back, but it is hard work.

I had clipping after my SAH in August 2010, it's been at times a very lonely road to recovery but one that has been made much easier by this wonderful site.

I wish you well with your recovery.

Oh yeh... Drink plenty of water, it really does help with the headaches.

Take care and keep smiling,

SarahLou Xx

[KelBel]

Hi Rachel

Welcome to the site!

I had an aneurysm SAH so as Bill says we had a cause and were operated. I cannot imagine not having a reason why SAH happened. To me it has been difficult enough knowing what caused it.

Although I have still suffered from a lack of information from both hospitals that dealt with me, and also from GP's. Blank looks are quite normal now, and I tell them more than they have ever told me!... but it is quite rare for a GP to see an SAH case, although when they do it would be great if they could do a little research...it would be more reassuring!

I hope you manage to contact Headway and get some advice from them if they are in your area. I have not used them personally but others on here have done so and made great friends there.

You can also try the Brain & Spine Foundation who have a wonderful helpline staffed by Neuro nurses if you have any queries/worries.

Good luck in your continued recovery

Take care

Kel x

[Janet]

Hi Rachel, welcome to the site not much to be added to what the others have already said just take it easy and listen to your body not always easy to do Wishing you all the best with your recovery and look forward to getting to know you.

[Louise]

Hi Raechel

Warm welcome to the site.

others have said the lot, but I was told that the hospital cant understand stuff unless we tell them how we are after....

& like the others say, drink plenty liquids, listen to your body when it says its tried dont fight it, & dont over do things.

[Diduck]

Wow - reading this thread today was just what I needed.

I had my NASAH 21 months ago now and I have reached the stage of feeling lost an d desaperate to move on.

Strangely I contacted Headway at the weekend to ask for help or advice as to whether I needed counselling or to see a neurophyscologist.

I feel that I have been in denial trying to push my way through my lasting symptoms to prove nothing ever happened to me.

Now, at this late stage, I have accepted I should get help to come to terms with things instead of beating myself up with constant fatigue from doing too much trying vto prove I am the same as before

Making the first move to ask for help has been enormous but I am optomistic that it is the right move.

I have printed the whole thread and I am taking it to work with me to keep lookng at to remind myself that I have had a brain haemorrhage and not just toothache or a bout of flu. I really appreciate your words, especially Bill B, whose words made me really think. I went back to work after 8 bweeks and have been full on since then. I have burntout a couple of times but now realise I was being silly and a bit selfish to my family to do this.

I will let you know how I get on with Headway but I must say they have been brilliant so far with personal contact and reassurance. They are specialists in this area and understand much more than GPs who seem to think we should "get on with it" after discharge fvrom hospital.

All the best to you all

we are our own family here but I believe we share more with each other than with anyone else

Di

xx

[JellyB]

Hi Rachel - I was a NASAH in June. Just thought I would chip in that the headaches will go eventually with luck. They were constant but cleared somewhere between 16 and 20 weeks for me. Now only occasional and something has to kick it off - usual noise or lack of sleep for me. Noise still bothers me and I avoid noisy places but thats easy to work around.

The body is brilliant because it can often fix itself. Machines never can do that. So I think be grateful you have nothing for the docs to fix. It should mean a great outlook for you. Just imagine that you have fixed yourself without surgical intervention and thank your body. Its the best you can hope for.

Bye JellyB

[tracy]

Hi Rachel

I had the same thing happen. I was 41 healthy with 2 children when on 29th june 2010 had a blinding head pain. I wastnt sick till i got to hospital but couldnt open my eyes properly, which is why they thought i had meningitus. I was sent to the john radcliffe in oxford and stayed for nearly 2 weeks. I was sent home with medication and thats it, just get on with it. I have the same as you with fatigue, memory problems and mood swings especially when i feel angry i really cant cope and show my anger now.

I am a year plus now and only really starting to get on with it. I dont think i could work fulltime as the fatigue is still here. But not classed as disabled so its like limboland.

There really should be more help for us NASAH instead of just get on with it.

Take care

Traci x

[amexdm]

Hi Rachel,

Welcome to the site. Everyone is a big help. I had mine 7-30-11 so bout 4 months ago. Biggest issue is headaches and fatigue. Still have a headache every day. Hit the wall about 5pm. It seems like the doctors dumped you and your GP does not have much info. You will find alot here but certainly find another GP. What do you take for the headaches. Listen to Sarah Lou and drink a ton of water, it really helps. Hope we can compare notes as we are in about the same stage.

Take care,

David

[Jaibird]

Hi

I am new to BHG and am struggling, the rheumatologist and neurologist disagree on the cause of my SAH. Rheumi says vasculitis, neuro idiopathic . I am going to Johns Hopkins on Tuesday the 29 for a second opinion. I am glad to have found this site, my husband while fabulous still gets frustrated by the ups and downs emotionally. Today drying off in the shower I pulled a muscle in my back, adding insult to injury:( not knowing the cause, or if I could bleed again is frightening. not knowing when I can return to work is hard, well frankly this whole darn thing is hard. I appreciate all of the information in your post, it helps tremendously since the Doctors don't give you a lot resources to help.

Thanks

Jai bird

[Winb143]

Hi all

Honestly singing helps,,,,,,,,, You remember words to songs....you remember names etc etc ,,,no more

" Hi thingymebob" or names for the life of me I cannot remember like Sainsburys Supermaket is the

Orange shop !!! lol.......

Cheer up it gets better and just rest when you need it ..... Keep smiling

Regards

WinB143 xx

Edited November 27, 2011 by Winb143