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Newbie -Linda


Linda Hunter
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Hi, I have just registered having suffered a small SAH.  I am still reeling from the whole experience. I was discharged on 23 August having been in hospital for just over a week.  I feel I didn't have any information on discharge and no ongoing support.  I am feeling scared and every time  I get a headache I think I am going to get the Thunder Clap and, well to be honest, die.  I would love to hear from anyone who has had a small SAH and your journey. Thanks in advance.

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Hi Linda, Welcome to BTG

Sorry you have suffered SAH, you have come to the right place for help and support,

you will find a wealth of information here.

 

I will say it is normal to be a bit scared when you first leave hospital, I think most people have felt that,

You have to be kind to yourself, make sure you drink lots of water it really does help with headaches,

also listen to your body and your brain, they have both suffered trauma and regardless of the size of SAH,

they both need lots of time to heal, so plenty of rest is always recommended.

 

You are just starting your recovery journey, it`s still early days for you yet, 

The recovery road can be a little bumpy at times, take things slowly.

 

Have a good look around this site, let us know a bit more about yourself, just when you feel up to it.

You will make a lot of new friends as you go along the recovery road,

 

Also have a look in the green room when you feel ready, lots of daily banter goes on in there,

 

We will be here for you as you start your recovery journey, so don't feel like you are alone,

Love & best wishes

Michelle xx

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Thanks Casey & Michelle for your kind words.  I am still trying to navigate the site. I have always used computers at work but new technology and smart phones are a bit hard for me (I am 63).  Hospital did not say how long I should expect my recovery to be and I suppose everyone is different.  I am still getting headaches, nausea, I feel incredibly tired and I have like a pressure noise in my head/ears. I think it is more about knowing that what symptoms I have is normal and part of the recovery. I am having a bad day today so I am feeling a bit sorry for myself.

 

How long did it take before you got back to your normal life?  I am retired and live alone with my little dog, Jack.  I don't do too much now but enjoy pottering, I watered my little garden and felt lousy after. So it was back to bed, pain killer under the tongue, and dozed.  Did they give you any nausea and strong pain meds when you got out of hospital?

 

By the way I live in Perth Australia, I think this forum is British!  I emigrated to Australia when I was 23 from Birmingham.  I must check out the green room as I love a bit of banter.

Cheers

Linda

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Hi Linda

 

The one thing we can't do on here is advocate medications or give medical advice, we can only offer the wealth of experience and knowledge that we all have of our own specific recovery journey - and everyone's is different.

 

I was back at work three weeks after my SAH but was lucky enough to be working with my husband in our graphic design company at the time so I had a bed in my office and would have naps during the day when I needed them. It took a year for me not have a nap during the day and feel OK. After stopping the antispasm drugs I went into free fall and was diagnosed with PTSD and had counselling and found this site.

 

You are very early into your recovery and it may be a long road to get there.  I say this all the time, but you are allowed to make as many pit stops along the way as you need to.  At the moment you will need lots of rest and you must drink plenty of water to keep the brain hydrated.

 

You don't say what you were doing at the time of your SAH or the procedures you had after.

 

I wish you all the best with your recovery and please do stay on here - the Green Room is a great place to be of a day - it takes your mind off things a little and really does make you realise that you are not alone (just beware of Win and her singing ;))

 

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Hi there

 

Warm welcome glad that you found us.

 

I think we all leave hospital without hardly any to no information and you're definitely not alone in having that feeling 'what if'. It does get easier as time passes.

you'll more than likely get an outpatient apt and then you can ask questions - advice there is to write questions down and take someone along with you to the appt.

 

Rest lots, keep hydrated...

 

Oh I have family in WA.  you'll be going into spring/summer so do please remember the hydrated thing...

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Hi Sami,

I understand about the privacy of medications.  I realise I have a long journey ahead of me now, perhaps it was denial or not really understanding the magnitude of what happened to me.  I feel a bit of a fraud as all of you guys needed surgery etc. I only spent 8 days in hospital.  My daughter kept telling me "Mum you were so lucky" and it is only just sinking in, I was lucky compared to other peoples stories. You are all inspirational. 

 

My story started initially getting a echo stress test for heart palpitations. I got my heart rate up by 87% and got straight on the bed so the technician could ultrasound my heart. As soon as I lay down the Thunder Clap came with all the other symptoms that go with it. My bp soured and I thought I was dying. They didn't seem overly concerned and after about 45 mins I was ok accept for a bit of a headache.  I don't do much on a daily basis as I am retired due to other medical problems and I went about my day but around the same time I had my stress test the day before I got the Thunder Clap again.

 

I reluctantly went to the Emergency Room as I thought I was having a migraine and they did a CT Scan.  They then transferred me to another hospital that was more equipped with Neurosurgery Teams. That is when they told me I had a SAH.  During the 8 days in hospital they did an MRI and then an Angiogram and loads of medications.  They discharged me as I said 8 days later with no information.  I booked an appointment with a GP and he is going to do a care plan starting with all my medications.

 

 The Drs in the hospital did not or would not say the bleed was because of the stress test but I truly believe it was. When your bp goes to 250 it must have ramifications on a 63 year old.  Anyway I am happy I survived because I have a beautiful daughter and 4 yr old grandson who I adore and of course my little dog Jack. He is a 3 yr old Moodle, crossed toy poodle and Maltese, weighs 3 kgs and has had 3 owners. I have only had him 3 months and he is still getting to trust me.  He is beautiful but can be a bit grumpy, like his Mum, lol.

 

I hope to make friends with people who understands and look forward to talking with everyone. Have a great day.

Cheers

Linda

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Hi Linda

 

Its sounds like you have had a NASAH (Non-Aneurysmal SAH) - no aneurysm but the artery has torn - there is a section on her dedicated to NASAH survivors but don't let that stop you accessing the whole site - we're all here for each other.

 

I felt like a fraud too when I first came on here - everyone else (there were only 9 of us back then) seemed to be having such a tough time physically and I was perfectly OK other than the fatigue.  But please remember, you are not a fraud, you have suffered and you have survived.  

 

I also left hospital without any information on recovery - what to expect etc or what had actually happened to me.  I saw my GP who explained what he could - he'd never had a SAH survivor in his surgery!!  This site has been a godsend for me and I am privileged to now to be in a position to give back to Behind the Grey and help people like yourself through those first few scary and confusing months.

 

By the way, you can ask where we're from - some of us have our details in our avatar.  I'm in Nottingham, England :D:D

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I too had no information given to me about what really happened or what to expect, this seems to be a common occurrence. Thankfully this forum is great for filling in the gaps, fatigue and headaches appear to be something we've all experienced.

 

Recovery times are different for everyone, looking back I've made a lot of progress, but it's so gradual that I hadn't really noticed, I rarely need to nap in the middle of the day now, and reading is getting much easier. I'm about 6 months post SAH now.

 

One of the main things to remember is don't push yourself to much, rest is key

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Hi Linda welcome to BTG. It is so common to be discharged without any information not really sure why this happens. I was lucky that there was a nurse specialist and her assistant where I was treated and they gave me a booklet and phone numbers to ring if I was unsure about anything. I did ring a couple of times but wish I had used them more in the first few months. My bleed was non-anuerysmal too but I had the complication of hydrocephallus so needed an evd for a week or so which has left me with my tell tale dent in my temple.

 

As others hae said take things slowly. It is really early days for you and your body and brain need time to recover. Don't rush to get things done be kind to yourself and have pleny of rests. Sounds like you have the perfect recovery pal in your little dog. I'd love to see a photo, maybe later you could post one in the gallery.

 

Drink plenty of water, rest and come back to this site for advice and friendship!

 

Take care

 

Clare xx

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Welcome Linda.

 

Don't feel that you don't belong here, because you do.  I only suffered a NASAH.  10 days in the hospital and just an EVD.  I am often amazed at what some of the other members have experienced and the courage they have as they continue to recover.  However, we are all part of the same family here and everyone is very welcoming. 

 

Leaving the hospital with little information seems to be common.  Fear of reoccurrence is also common.  Mine got much better with time as I hope yours will as well.  From my medical advisors, people on this site, and research of some studies online, I have become to believe that the risk of reoccurrence of a NASAH is minimal.

 

As everyone states, drink lots of water, listen to your body, try to avoid stress.  I am sending you best wishes for a speedy and peaceful recovery.

 

You are a survivor!

 

Chris

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Hi Linda    

 

You will get there and it isn't an overnight thing so try not to stress (I was told by my Surgeon) xx 

 

This is a good site to give vent to any worries although we do not give medical advice, It is good to share a worry.  

 

Keep well and smile when you can it keeps worry at bay 

 

Winb143 xx

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Hi Linda...

 

I too had a NASAH and was 12 days in the hospital.  I had no neurological deficits thankfully and was left with the question of why as well.  I am a 42 year old mother of 2 and I was simply running on a treadmill when it happened.  I do not have high blood pressure but have Rhumatoid Arthritis and a Platelet Disorder.  I too, like everyone else have no real answers on why it happened but have found comfort in this site.  I'm sad and sorry of what everyone has been through but am grateful that I have support from people that understand.

 

Recovery is/was difficult for me.  My 2 boys and myself lived at my parents for 2 months so they could care for us but 4 months out and I've been living back at my house with them on my own and even started working a little.  I guess everyone is different but for me I turned to meditation and acupuncture and some alternatives sources to help calm anxiety, headaches and my RA pain and it's working for me.  I wish you well in your recovery.  The people on this site are so great!! I live is Connecticut in the USA so compassion and understanding has no borders:-)

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Hi Linda,

 

Welcome to BTG!  yes we are British but pain and suffering has no barriers - neither does caring and compassion as is described so eloquently above by Kris. I had the dreaded thunderclap headache 7 years ago today and I'm still here, so that should be some encouragement for you.  I am now 62 years old!

 

My job was very stressful and I went back to work after 6 months.  I decided that I'd had enough three years later and took early retirement - best decision I ever made!

 

As you're in Oz, don't worry if answers take a little time to appear - the time differences are enormous between here and you and the USA.

 

Headaches are common after SAH but none of them are ever as bad as the 'thunderclap' one.  Seek professional help if you are worried but congratulations - you are a survivor!

 

Look at your glass as half full, not half empty.  Look for the new opportunities that open for you, not behind to the ones that have closed.  Life will be what you make of it.  Yes, you've taken a punch, but get up from the floor and punch back! - when you're ready to, that is!

 

Welcome aboard!

 

Macca

 

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  • Skippy changed the title to Newbie -Linda

Linda

 

Hopefully the greetings you have received from fellow survivors will make you feel less alone.

 

The immediate time after a SAh I think is full of anxiety and of course what is in charge of the anxiety and thoughts ? our slightly hurt and damaged brains , and so the chemicals all get off whack and every sensation feels heightened but each day you will see improvements. 

 

The best thing to learn as early as you can is to put pauses in your day. Think of it like punctuation in a great story, it makes it far more enjoyable. 

 

Before sah we probably all had tendency to get up and then stay up at full throttle until we rested again but now you need to create a new pace and pattern that will help heal your brain. So no one is saying don't garden if your physically able but take more breaks, drink and notice when you're weary and stop, don't push through. 

 

If you walk the dog ( who sounds super cute) , then come back afterwards and sit and rest together. If you do something even something  a small simple as a phone call then rest again and just be still. Enjoy your grandson but again maybe notice that you can't bring the same energy and attention for the moment, heal it now and invest in that and it will help , that's what I found. 

 

When the feelings of pain etc come , and they will, then if you can just watch and wait with them and try to focus on something else and slowly breathe. If things get worse then you know to do something but often you'll find it will subside and the pain will shift and change and with it you can let go the fear a little more each time.  Like Kris I meditate and practice mindfulness and did before sah but it's not for everyone but find your peaceful thoughts and cling to those when you get worried.

 

Take care and enjoy that Oz weather. 

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Welcome! My bleed was from an aneurysm but thankfully was a small bleed. I had 10 days in hospital (surgery on day 2) and was sent on my way with very little information. This site has been so helpful, especially understanding what the first few months would be like from other people's experience. As I say my bleed was small but I still took 3 months before I went back to work and then a further 3 months to get up to full time. During that time I was having daily naps. Even now when I have stressful days at work (like this week!) I go back to having evening naps. Definitely helps to reset yourself. 

 

Your theory on why your bleed happened is a bit like mine. I had been exercising WAY too hard in the days before my bleed and definitely feel I pushed too hard and that may have caused it. It's a difficult one because I really want to understand why it happened and "it's just one of those things that can happen" didn't really cut it. After time I found the need for a firm reason abates a little bit (I've no family history, no high blood pressure, don't smoke, don't do drugs!) but it did annoy me for a while. It's the feeling that there's nothing really that could have been done to know about it or indeed stop it takes a while to sink in.

 

As others have said, take it easy on yourself during your recovery. Think of it like a broken leg....it takes a while for everything to heal and for you to gain your strength again. I found my dog was very helpful in my recovery (at the time he was a 14 year old golden retriever...he's just passed his 16th birthday!!). I'd take him 2 min walks, then next week 5 mins etc. Really helped improve my confidence of going out and being by myself (even though it was within spitting distance of home!) .

 

Andrea

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Also Linda (She says remembering headaches)

 

Some of us get headaches and especially in thundery weather when the pressure gets to our heads.

 

Remember we are a lucky lot as we survived Yeahhhh!!   So anytime you are down just come on here and there is always someone who has gone through the same.

 

Hope to hear more from you and progress albeit slow or fast xxx 

 

Regards 

Win xxxx

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  • 1 month later...

Hi Linda, I’m sure all of the comments have been a comfort, this site is just amazing ? 

 

I had my nasah 19 months ago now, when I was 46. It was a small bleed. I too was discharged with little information-after nothing was found on my angiogram. No follow up checks. I had 6 months off work, now back to my normal part time hours. I’m a full time carer for my daughter , so life is never boring! I still get pressure headaches & the odd pains, but nothing major. I also still get tired much quicker than before, but I’m finally feeling much more like my old self again. I’ve got more energy & general get up & go. It’s definitely a long road, but I’m just glad I’m here to do the journey! Take care of yourself x

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