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Hi from Tracy in Sydney, Australia


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I am so pleased to have found this forum! It has a great sense of support and postivity about it as well as some useful advice and resources. I am an almost 54 year old woman and I live with my partner in a beautiful beach side suburb of Sydney, Oz. We both have grown up children and my partner has had to support and endure me as I have endeavoured to regain my health after my SAH.

Still, I have felt a bit alone in my journey since having a SAH in early October 2009 and although having recovered very well, still have some annoying health issues. I am keen to explore this forum to learn from others who have similar issues as me and possbily to share as well.

My SAH happened while visting with my family, the Blue Mountains which is 100km west of Sydney. I got a sudden strong headache while walking in a park. I thought I would test how bad it was and drove to our next desitnation (only 500 metres down the road). I decided I couldn't drive any further and asked if someone could drive me home (I didn't want to alarm anyone especially as I was with my brother in law who was being treated for leukemia). My sister offered to drive me and I then told her I think I need to get my blood pressure tested. An instincitve reaction I guess as 3 members of my family have had SAH and 2 died on the spot. I was quickly assessed and treated at the local hospital and transferred by ambulance to a specialist trauma unit in a Sydney hospital. Still I had to wait from 4pm on the Saturday to 11pm on the Sunday to be operated on and have my aneursym clipped. I then had 2 weeks in intensive care and was then sent to a general ward. I hated it and the hygiene was appalling (really bad). I asked to go home after one day and they let me. Hooray.

The problem was I had no information at all as to what I could or couldn't do and what I could expect in my health. I still don't know much. I saw the neurosurgeon after a couple of weeks and said I wanted to go back to work asap and he agreed. So, maybe stupidly, I went back to part time work 4 weeks after the SAH. I worked full-time for all of 2010 and then decided this year that I was so tired and struggling with work, commuting and life (and trying to hide from work some of my memory probs). So now I have contracted to work 3 days per week until June 30 this year. I have been walking regularly to try to get my strength and resiliance back and have just started yoga too.

My ongoing health issues include chronic stiffness and pain in the jaw, around my skull and neck and shoulders (I feel like they put on head on wrong and i have a few screws loose). Tiredness can be an issue and some memory problems, some short-term memories and in recalling names). I have had to practice using my brain at work where I do new work reguarly. I would still like to improve the short-term recall though.

I do feel very lucky though but really hope that this was a one-off event.

I look forward to exploring this forum and finding out more about others and myself.

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Hi Tracy and a very warm welcome to BTG. I would agree, finding this site is a godsend when recovering from a sah and being amongst other people who have experienced the same thing. Suddenly, you don't feel quite so alone. I didn't discover it until about 15 months after my sah and cleary remember the relief when I did! One of the overriding things that a lot of us have in common, is not being given any information when leaving hospital as what to expect. We all recover differently, but another common factor is the memory issues that you mention - I still have problems with this, recalling names and even words sometimes which is quite frustrating.

I think your decision to cut your hours was a wise one - I work, but I have not worked full time since my sah and really don't think I would be able to cope as I still suffer from extreme tiredness - then there are times, like now, that I am up during the night:roll:

I don't have any head, shoulder problems like yourself -although there may be others on here who can make suggestions with that.

I hope you join us again - I know others will be along at a more sociable hour in the uk to say hello - there are also one or two regular inputters who live in Australia who will no doubt welcome you too.

Sarah

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Hi Tracy! I really wish you had found the site sooner, you must have felt so lost since your SAH! I feel really badly for you that you've gone all this time trying to find your way on your own. I was only 'lost' for 2 months and when I found the site it was the best thing that happened to me after my SAH. These people are very supportive and have helped make this experience less frightening.

It's good to hear that you recognize you need to scale back your work. Your brain needs time to heal and that's the priority.

Sandi K. Xo

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Hi Tracy from Sydney

From another Tracy Sidney in England. Welcome to the site, your find lots of help and useful information here. Its like my second family and i believe we have some guys from your end of the world on here. Look forward to hearing from you .

Take care

Traci (my new way of spelling) S xx

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Hello Sarah, Sandi and Traci

Thank you for the warm welcome, I really appreciate it.

It is reassuring to hear that it is common to be tired and have some problems with memory. I do wonder if I will gain my full health back, I guess it's hard to know and I am getting older too. I will need to practice using this forum to search for info I need, I am still confused about doing searches at this stage and would appreciate any tips.

I wish you all better health and some happy times.

it's 9pm in Sydney time (not Traci Sidney time) which is about 11am your time. So time for me to go to bed on this wild and wet night. Work tomorrow;-)

Nice to meet you, so to speak

Tracy

I

Hi Tracy from Sydney

From another Tracy Sidney in England. Welcome to the site, your find lots of help and useful information here. Its like my second family and i believe we have some guys from your end of the world on here. Look forward to hearing from you .

Take care

Traci (my new way of spelling) S xx

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Hi Tracy

Welcome to BTG. You're doing really well. I can relate to having problems with peoples names, I really struggle with that. I was told that it's a concentration/memory thing. My brain has to concentrate on taking in the name at the same time trying to remember facial features and then have to put the two together! I now just tell people that I'm rubbish at remembering names! look forward to hearin gmore form you.

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Hello and first things first: you've found us, which is brilliant! The one thing I kept disregarding was "take it easy", and every time I crashed and burned it set me back. Now I've realised that everyone was telling the truth - it does take a long time to recover! Now I'm nearly 16 months in and I finally feel like my cognitive issues have improved a LOT!

Take care :D

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Hi Tracy,

Nice to 'meet' you. I had my SAH in July 2008 and still have quite major cognitive problems, especially memory. You might smile at a comment I got from my physiotherapist - I have slight balance problems and she told me that eventually my friends would catch up and be the same!!! I am 41 now so it might take a while before they do!

Michelle x

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Hi Tracey,

Glad you found us. It’s a horrible thing when we leave hospital with no information.

It took me 12 months to get a proper handle on things which is when I commenced counselling sessions with a neuro psychologist. Have you considered counselling?

My psychologist started talking to me about brain injury. I explained that I did not have one. I had physically recovered very well and there were no outward signs that I had suffered a SAH 12 months earlier. He told me that ABI, (an acquired brain injury,) is an injury caused to the brain in childhood or adulthood. There are many possible causes, including a fall, a road accident, tumour and brain haemorrhage. ABI can affect the way the brain works and does not have to leave a physical disability.

To understand a brain injury, imagine a very busy city with lots and lots of traffic. Imagine there is a road block. The traffic has to work out a different route to get to its destination and the cars might try other roads and side streets. Neuro patterns in the brain are similar. When there is an injury, different paths are sought, but it takes time for different routes to become established; and even then, they may not be quite the same as before. This is where we sense that things are ‘a bit different.’

A SAH can affect the cognitive effects of the brain. This is the way we think, learn and remember. Maybe this is why you are struggling with your memory. I struggle with names too. It is so frustrating!

A SAH can also affect our emotions and behaviours. I am definitely different to before. Not massively perhaps, but enough for it to seem life changing to me. I am quieter and need more time on my own. I can find people quite irritating sometimes!

If we do not know what out problems are, we cannot work them through. When I spoke with a neuro psychologist and he explained why I felt different, things made sense and I started working with my brain injury, not fighting against it.

I will look forward to chatting with you again,

Lynne

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Gee, this is such a unique experience talking to people who have had some similarity of experience and are positive and supportive! Any time I have mentioned to my Dr a health issue that I believe is related to the SAH he has dismissed me. He's a s...t but his wife who is a part-time GP is ok!

Lin-lin, your advice about a neuro psychologist is helpful and I will look into it (if I can afford it too). I would like to see if I can actively work to improve my brain pathways. I friend recommended a book called "The Brain That Changes Itself" by Norman Doidge. I will try to get it from the library. I would like to work with my brain injury - now that's a term I have only just allowed myself to use in the past few weeks!

I have spent a fair of money having massage and gentle osteopathy. I have had such a bad jaw, skull, neck and shoulder pain. I still do but it has diminished. I also wonder if all the spine can remain stiff and tender after SAH. Mine feels so different and when I was in hospital my spine was so sore (not just from being in bed). I do begninners yoga one night a week and I think it helps.

On the whole I really do feel very lucky - I have survived and a lot of issues I had earlier have faded eg. dizziness, lots of sore spots, many strange swellings on my head and face, horrid scalp problems and heaps of hair loss to name some. Weariness and at times deep fatigue go on, but I am now so happy when I have energy I just have to be careful not to use it all up in one go. I know that many people on this forum will have experienced much greater trauma than I so I don't want to be a complainer here but a learner. I will pay good attention to the sage words of advice offered here from people who know what it's like.

On a small matter I would like to know how to search better on this forum to find threads for such things like jaw pain - I don't seem to be eliciting much from my searches. Can anyone offer me a tip here?

thanks again

Tracy

Hi Tracey,

Glad you found us. It’s a horrible thing when we leave hospital with no information.

It took me 12 months to get a proper handle on things which is when I commenced counselling sessions with a neuro psychologist. Have you considered counselling?

My psychologist started talking to me about brain injury. I explained that I did not have one. I had physically recovered very well and there were no outward signs that I had suffered a SAH 12 months earlier. He told me that ABI, (an acquired brain injury,) is an injury caused to the brain in childhood or adulthood. There are many possible causes, including a fall, a road accident, tumour and brain haemorrhage. ABI can affect the way the brain works and does not have to leave a physical disability.

To understand a brain injury, imagine a very busy city with lots and lots of traffic. Imagine there is a road block. The traffic has to work out a different route to get to its destination and the cars might try other roads and side streets. Neuro patterns in the brain are similar. When there is an injury, different paths are sought, but it takes time for different routes to become established; and even then, they may not be quite the same as before. This is where we sense that things are ‘a bit different.’

A SAH can affect the cognitive effects of the brain. This is the way we think, learn and remember. Maybe this is why you are struggling with your memory. I struggle with names too. It is so frustrating!

A SAH can also affect our emotions and behaviours. I am definitely different to before. Not massively perhaps, but enough for it to seem life changing to me. I am quieter and need more time on my own. I can find people quite irritating sometimes!

If we do not know what out problems are, we cannot work them through. When I spoke with a neuro psychologist and he explained why I felt different, things made sense and I started working with my brain injury, not fighting against it.

I will look forward to chatting with you again,

Lynne

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Hi Tracy!

Don't search often but when I do i just type one word in the search field and it seems to work when I need it to. Perhaps post your question in the part for computer questions on the forum. I think it's under the Green Room.

Sore back is an experience many of us share and it's been said that it's because the blood from the bleed is being absorbed along the spine. I also go for massage and chiropractor for craniosacral which I think is similar to the osteo work. And I go to 'gentle therapeutic yoga' once a week. The craniosacral is once a week too. I'm sure it's all helping because I feel re-energized afterward. I've also tried reflexlogy and reiki but I didn't get as much out of them, however when my feet were being worked on it was interesting that the tenderest parts were associated with my brain.

I think you should do whatever makes you feel better as long as your 's**t' GP agrees it's ok! :lol: My chiro and massage therapist don't do much with my neck, they are very careful and no manipulation.

Good luck with. You are lucky to be in sunny Sydney, I find that the sun on my face is one of the best healers.

Sandi K.

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Tracy with regards to the jaw pain I was also clipped and were they had to cut through the jaw muscle during surgery it did cause a lot of pain in the first few months thankfully its now only now and again I get a dull ache in my jaw now. I got told that chewing gum would loosen the muscles not much of a chewing gum person but gave it a go and it did help a bit.

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Hi Tracy! Welcome to BTG - so glad you found us :biggrin: I too, feel for you in the facts that you've not had much after care on what to expect, what happens to us. Unfortunately this seems to be the norm that too many of us have experienced!

Lots of great information and wonderful people here to help one another. I'ts been my lifesaver!

I'm 14 mo. post SAH/stroke. Have to say there have been huge improvements but I too, like lots of the others here, have some issues I'm still dealing with. Fatigue, depression, anxiety, inability to do many things I did before. It's been emotionally challenging and hard to accept.... still working on it! The folks here at BTG have been my biggest help and I'm sure you'll find it nice to be able to chat with others experiencing many of the same issues you're dealing with.

Hope to hear more from you!

Carolyn

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Hi Tracey,

Welcome to BTG--There are two of us on the board here in Perth. I haven't been signing in very often lately, but I'll send you a separate message with my phone number if you want to call and talk anytime. At least the time difference will only be 3 hours instead of 8+ :lol:

Deb

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Hi Tracy

Thought I'd already said Hi but apparently not:crazy::crazy: so...

HI Tracy and welcome to the site and to the family. You've obviously already found that there are a great bunch of people on BTG who's aim to is to recover and help others do the same.

Look forward to getting to know you.

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