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I am very grateful to have found this forum. The stories that so many survivors and carers have shared has educated me so much. I have worked with people with  disability for 25 years, I had never heard of a sub arachnoid hemorrhage.  My husband had a non aneurism sub arachnoid bleed on 20th May 2019.  He knew immediately he needed emergency medical help. 

 

We live in western New South Wales, Australia, in a small country town.  So many stars aligned that night: the one local ambulance was available and came immediately; the local GP at the hospital suspected the diagnosis quickly and hubby was transferred by ambulance to a bigger regional hospital 90 minutes away for a CT scan (no CT available locally after hours); the bleed was located on the CT and the diagnosis given but there was no MRI machine or specialist neurology care so plans were made to transfer him by the Royal Flying Doctors service to the Neurology ICU at Royal Prince Alfred Hospital in Sydney (600km away);

 

I flew ahead to meet him there only to arrive in Sydney and receive a message from my husband that the doctor on day shift had cancelled the transfer and didn't see why my husband should require specialist Neurology ICU!!!  The doctor didn't bother to call me himself. There ensued a very frantic (and tearful) 4 hours of phone calls to advocate to overturn the doctor's decision.  I won, and my husband arrived within hours.  He spent 16 days in Neurology ICU. 

 

Words cannot do justice to the surgeons and nurses who cared for him. Hubby had angiogram with CT twice (he reports the second was excruciatingly painful and traumatic), developed hydrocephalus day 3 and had MRI and emergency surgery to drain fluid (no permanent shunt though).  He had Nomidipene for 23 days, Endone and paracetamol for pain, sodium, magnesium and potassium intravenous fluids, had a catheter for 24 days ..,... I can't remember everything now. 

 

Poor darling developed major complications with enlarged prostate and endured 2 attempts to remove and reinsert catheter (not related to NASAH, but poor timing!!).  He spent 3 days on the ward and was flown back to our local hospital before coming home, then being readmitted because of fever and infection so had IV antibiotics.  He's been home 5 days now. 

 

I know it is very early days for him, for us.  So far he has retained full strength, speech, cognition and memory ( other than when hydrocephalus set in).  He has good days that are relatively low pain, and days of high pain where he cant move or function.  I am amazed and astonished at his strength, patience, and non complaining acceptance.  We are a very close and loving couple, we will tackle what comes together.  But oh my god, the suffering and cruelty of SAH is something unbelievable. 

 

Thanks for reading. :-)

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Without Loved ones we would be lost V Mama xx 

 

I had ventriculitis  hydrocephalus also and remember nothing.

 

Also had a lot of germs attacking me.  Body sent me into cuckooland mode.

 

Trouble with catheter also dreamt a man was chasing me with a big pipe in his hand,  I put it down to not being emptied enough hence I also got Sepsis due to back flow.  But I was not with it for a long while and once I had shunt put in I woke up.  But I know it must be horrid for those who are waiting for us to improve.  This I have since looked at when I awoke..

 

Cannot fault surgeon but Hubs and Daughter were brilliant.  Sisters sang to me.

 

When OT's tried to make me do therapy while brain was not with it, Daughter said I called them witches ha !! None I remember ???

 

Daughter said when I started to eat again while in Hospital she told me I thought we had gone out for lunch to a cafe and I said my treat Sa lol.

 

Anyway good luck with hubs and remember he is a Survivor xxx Keep him happy and keep him away from stress while healing xxx

 

After I woke up. Approx  6/12  months later hubby and I went back to normal  ie cross words.  Well he'd been good to me for a whole year and a bit. 

 

Never give up and get songs at ready and bring  a smile to his face  xxxx  You also will need rest xxxx We are a handful xxx

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Hello, and also a warm welcome to BTG

 

Great to hear that you are already finding support from reading the various threads by our members.

 

So glad  that your hubby is now home. I am sure that your own profession will be of great benefit as you help him in his recovery. It is very early in his journey and the very nature of SAH means that only over these next few days and months will you both begin to discover the damage caused to his brain by the bleed, as the after effects begin to become apparent.. Prepare yourself for the highs and lows along the way.

 

Please ensure that you take care of yourself too. It can be easy to overlook that your own health is beginning to suffer in your attempts to give dedicated care to your husband. Take time out and talk often to family and friends about progress. Eat and rest well.

I trust that your own employers are being sympathetic in these early days and giving you the time you need to rearrange your lives.

 

Well done for ensuring that he received the medical support he needed when you found out the decision had been made to cancel his trip to Sydney.

 

Your desire to give hubby whatever it takes in terms of support will not go un-noticed and he will thank you in his own time.

 

Take care and thanks for sharing.

 

 

Subs

 

 

 

 

 

 

 

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Hello, so glad you found us,

 

My goodness you and your hubby sure had a difficult time, so sorry to read of all that happened.  Sounds as if you had a great team getting him to where he needed to be.   

 

Happy he is finally home and has all his cognition, memory and and speech in tact.  As you said it is early days for him but he sure sounds like he is doing well for all he went through.

 

How are you holding up through all this, it is so traumatic for family.  I was the one who had the SAH, but I know my husband was floored and probably in shock for a while.  It took his feet out from under him.  Thank goodness I have done well, am now 2 years out.   It is an event that takes time to recover from and I still feel it is very close not two years ago.

 

I want to let you know there are so many wonderful people here for support, I feel like I fell into their arms 2 years ago.  I have much support and understanding here...My best to you and your husband as he continues his recovery.

jean

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Thank you all for your kind words of encouragement.  I don't think I know how I feel yet.  It's been 4 weeks tonight since our lives were turned upside down.  Coming back to our home town has been a relief and very hard all at the same time.  When we were in Neuro ICU, everyone there understood exactly what was happening.  I didn't have to explain myself, and there was constant support.  

 

Now, I'm back to going to the shops, where everyone is going about their business, and I feel like an alien.  If people ask me how I am I don't know how to answer, so I just say 'I'm ok thanks'.  Our friends and family, and my husband's colleagues have continued to check in, to ask how we are.  My husband is improving each day, but I know he will have good and bad days, and eventually people may stop checking in with us, get sick of the same answer.  

 

The crisis has passed, now it's back to 'normal', only there is no normal, everything has changed, and we can only go forward not back.  I have worked for years supporting carers of children and adults with a disability, I've always thought I was compassionate and had insight to their experience, I realise now that one can't have true insight until one has lived that experience.

 

Anyway, thank you so much for listening, and for caring.  Your stories of your own experiences really have helped so very much, I'm sure you understand what it is like to converse with others who understand.  V

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People do look at me and think I am fine and some days I am but then I just need to sleep so be patient with hubby and perhaps to get some normality back when he gets better you could go for a coffee together when he is up to it. 

 

When you have things sorted perhaps, as early days yet for Hubs ..My hubby got me a teacher beaker and went up to a small carboard cup.

 

Wishing you both Best of luck and if you need to give  vent this is a good place to come.

 

Water is a must for him so get him to drink plenty XX  

 

Keep well V xxx

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Some great comments posted already, time, support therapy and Physio will all help you in the long run.

 

Just ask away if you have any questions as we are open all hours.

 

Taking your time restarting your life again is a must. Too much too soon and it may slow your recovery a little.

 

Theres a lot of stories here on BTG, some will be of use, some may be funny, most are very informative and you can learn how we recovered and helped ourselves with help from other posters to get as far as we have. 

 

I wish you both the best of luck in starting your journey please return and let us help you help us?

 

Regards 

 

Michael 

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Thank you.  It's such a rollercoaster, the aftermath of SAH.  My husband has had a few good days, relatively low pain.  But nights are dreadful for him.  He gets restless legs, and head pain seems to start around 2-3 am every morning.  Yesterday was really bad, the worst he's had since he left hospital.   It shakes both of us up when it's that bad.  Paracetamol does nothing to reduce the pain.

 

Can any of you comment on whether you found anything that worked to reduce the pain?  There doesn't seem to be any predicting it.  He drinks lots of water, he always has, and even more so now.  He probably drinks around 1.5-2 litres overnight.  He has also found that when the pain gets bad at night he has to get up and walk around, as being upright seems to reduce the pain.  

 

From reading the forum posts it seems that ongoing head pain is a big feature of recovering from SAH, and as many write, everyone is different on how long it persists and how bad it continues to be.

 

Thank you for your replies.  It is so good to talk with others who understand the journey. x V

 

 

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Speak to the Drs as mine prescribe co-codomol and I still have headaches 17 years later but they have got better xxx

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Hello and thanks for your comments.

 

Relentless pain is so debilitating for your hubby and so hard for you as you feel helpless to offer any relief.

As Jess comments, definitely continue to check with your medics.  Also, as it seems to be worse during the night, has he tried sleeping in a more upright position. Elevating him with these longer `V` shaped pillows is worth considering.

 

Subs

 

 

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23 hours ago, subzero said:

Elevating him with these longer `V` shaped pillows is worth considering.

 

Definitely get a V pillow!!  I've used one since day one and still use it now - I take it everywhere I'm stopping over night too.

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Definitely v pillow and I still sleep upright for the most as I had Hydrocephalus too with bleed and now have Shunt,

 

I found a heated wheat bag really helps with my pain , or hot water bottle as good. I also used to give myself a ‘self massage’ with a base oil and essential oil that I found relaxing an soothing, I used Rose or lavender but hubby might prefer something different. I personally didn’t want anyone to do that for me early on after discharge so did my own shoulders but you could offer to do  his hands or shoulders if he is ok with that..very relaxing 

 

i was under the care of the Pain management team when I left and they stressed how important it was to ‘smooth ‘ the pain so not allowing it To peak and trough so that meant keep taking my pain relief medication consistently and I only tapered that off after my Shunt was placed which was a good few months after bleed. 

 

Eating frequently and well can help with the pain, look at getting plenty of protein and fibre and also anything that helps the vitamins in the body replenish the brain, sunshine and vitamin D was important to me . 

 

Sleeping and rest  will Help with his pain control. Learning now where his red lights are and stopping before you get there and resting and doing NOTHING. Brain needs that pause space to helpit continue on its mammoth healing journey, all happening unseen.

 

main thing though is if Pain is getting worse then seek help, don’t ignore that. It shouldn’t be escalating and if it is that needs to be looked at. 

 

Good luck and welcome to you and hubby. 

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Daffodil. I too have Hydrocephalus and a shunt, diabetic, Epilepsy, high/low blood pressure, diabetic highs and lows, now a possible heart condition to boot!

 

The stress gives me headaches, like you too I use Aromatherapy too, I actually qualified as a very young fit man. I had a business in this field.

 

I currently have 87 different essential oils in my collection.. several great base oils, 3 different burners/misters.

 

One mister in my bedroom uses, Lavender, Sandalwood, Ylang Ylang and tea tree oils. All combined help keep my head and body very relaxed and now quite pain free.

 

In the last month I've only used 8 Paracetamol. Normally I have it on repeat prescription at a high dose, but no more, now only 500mg as needed.

 

Over drinking in a short period can cause pain believe it or not! It's called Hyponatremia. You can also get intoxicated by drinking to fast too.  This can cause pain... little and often...

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V.mama. have a word with your Dr. Ask if they can check for migraine issues, these often go hand in hand with a brain injury, these can be treated or monitored using blood tests/medication...

 

Consider making a diary of activities rests, meals, sleep patterns and drinks too. You may find a pattern of stressful situations and then you can adjust the times to suit...

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Thank you everyone for your helpful suggestions.  We tried elevating hubby on pillows, in different ways, he did find it helped.  The headaches are easing a bit, they always start during the night and worsen by morning, then usually start to ease by 11 am once he has been upright and walking around (the Dr suggested it could be due to changes in intracranial pressure while he's lying down?).  The other morning hubby gave himself a whopper of a headache when he bent over to pick something up.  I don't think he'll be doing that in a hurry again.  :-)  

 

We have managed to start going on longer walks, he still feels weak from losing muscle strength while lying in his hospital bed for 16 days, but that can only improve with more walking.  The hospital physiotherapist didn't prescribe any follow up treatment, he just told hubby to keep up the walking.  Is this usual after a SAH?

 

Mike157 he is starting to log his daily routines/activities to try to find any causal pattern of head pain, thanks for the suggestion.  Fortunately our home and lifestyle is relatively low stress (aside from the NASAH of course, and raising two teenaged boys!!)  and we practice mindfulness, so hubby doesn't feel that stress is a causal factor as such.  We're also both very fortunate to have outstanding employers who have bent over backwards to be supportive, plus the support and love of a close and strong community.  Two doctors have told him that 'anxiety' is causing his headaches, which neither of us feels is a fair assessment.  Yes, nearly dying is anxiety provoking, but surely having one's brain squished by hydrocephalus after a brain bleed is sufficient to cause ongoing headaches?  Am I wrong on that one?

 

 

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Hi apart from the prostrate problems your husbands bleed sounds very similar to mine. No aneurysm detected and hydrocephalus drained using an external drain.

 

Mine was 4 years ago, I have recovered well except for the invisible signs - weak memory and fatigue. I have just had a very busy socially active weekend and it has floored me. 

 

I too had headaches to begin with but took regular paracetamol and drank plenty of water - it really does help. My nurse specialist did not seem to think that the hydrocephalus would cause any problems once dealt with by draining. I do find though that if I get stressed or anxious that I get headaches and stabbing pains in my head. They pass with time and I use them as a sign now that I have done too much.

 

Unfortunately there is nearly always a lasting legacy of fatigue and poor memory after sah and it can go on for years if not indefinitely. Very hard when to everyone else you look fine but you know inside you're not.

 

Keep up with the exercise, it helps with the mood and fatigue. I can be brain exhausted but after a run feel much better.

 

Glad to hear you have sympathetic employers - they are often few and far between!

 

Take care, Clare xx

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Hi vmama,

 

hubbys poor brain is reeling from two assaults, one is the bleed itself spilling blood where it had no place being so that’s aggravated all kinds of things and knocked circuits out and secondly the Hydrocephalus placed pressure on his brain which caused a different vice like effect. 

 

At the time he had he had Hydrocephalus his ventricles were blocked or compromised due to the blood from the bleed which meant they couldn’t absorb cerebral spinal fluid as they should, and as the ventricles are responsible for the accurate production, transport and removal of cerebrospinal fluid, which bathes the central nervous system you can see any disruption is then tricky and whilst life threatening in it’s own right also has long term implications.  

 

 Typically a drain is placed after a bleed when Hydrocephalus also presents to assist the ventricles and remove the pressure build up and this unclogs the ventricles and then it is removed and ventricles recover function  but it can take months, maybe longer for the blood to be absorbed.

 

After an EVD the CSF level is really out of whack and also the ventricles are trying to adjust and keep up and maybe they are a bit slower than they used to be and that can give you high pressure feelings which causes headaches when lying flat, moving to fast or changing positions.  That said if symptoms get worse you should always get checked out , things of note are if eyesight changes, or he feels suddenly nauseous , has increasing dizziness, these would all be reasons to go and be sure all is ok. 

 

Keep going with sleeping upright, tell him also don’t shift position fast from sitting to standing etc. Stop, pause between every movement. Walking is great but pace it, keep food and water levels up and no heavy lifting. 

 

It’s no secret on here that I  ended up having to have a Shunt placed after my SAH  some three months after I discharged. I spent nearly 7 week in hospital initially and had EVD for most of that but after coming home  My high pressure symptoms returned and got worse and scans revealed that actually my ventricles has been too damaged and hadn’t recovered as they hoped. they had some function but not not enough. I am not sharing that experience  to scare you , my case is pretty unusual  but more to let you know to trust your gut as I did. I knew something wasn’t right and Hubby will know . If he feels like things start dulling down and balance starts diminishing then don’t delay, that was my red light, things which weren’t great started actually deteriorating, like my balance, I started falling , so if that happens pleaseget checked over. If the pain is pretty constant and als,that’s predictable and has a routine then sadly that’s just pretty typical post sah effects. 

 

sending the good vibes 

 

 

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Nothing beats gut instint...

 

And I think walking is a great way to build up strength...

 

Doing a daily diary is great too gives something to focus on doing it and helps if there's a pattern.  Remember keeping hydratated helps with headaches.  And could just be the blood going back through the body that's causing it...

 

take care.

 

 

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I thought I'd give you all an update on my hubby.  Reading back through this conversation thread has shown me just how far he has come.  I cannot thank you all enough for sharing your knowledge and stories.  I felt so alone when we left hospital, I wasn't alone socially, but I was alone in terms of people who had experienced SAH and what it was like to witness it as a partner.  You have also helped my husband and given him hope.  At first he couldn't cope with hearing other people's stories, then he started asking me 'do other people get this sensation, is it normal'? so I would tell him what others on Behind the Gray have written about their journey.

 

Hubby's head pain has reduced a lot, he still has almost constant pain, but it is manageable, and not so debilitating.  He still can't bend over or move suddenly, but he knows that now.  He says his brain feels woolly, he finds it very difficult to describe the sensation.  He fatigues if he does too much, but it is the following day when his body really gives him the message.  So he is learning from that and trying to figure out his own limits.   

 

 I am back at work 2 days per week, so the first few days of work was a real test to see if he would behave himself.  Of course he overdid things and was exhausted - but he is the one who suffers for it not me.   

 

We go for walks most days, it's good for both of us.  His strength has improved enormously, he's doing so much better.  

 

He hopes to get his licence back in 6 weeks after he goes back to his Neurologist for a review, then he hopes to start thinking about working a few hours a week.  He can't return to his usual job as a locomotive driver for at least 12 months, but at this stage, he's not sure if he will want to.  There is time to figure these things out.

 

kind regards

 

Veronica - V.Mama

 

 

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7 hours ago, V.Mama said:

Hubby's head pain has reduced a lot, he still has almost constant pain, but it is manageable, and not so debilitating.  He still can't bend over or move suddenly, but he knows that now.  He says his brain feels woolly, he finds it very difficult to describe the sensation.  He fatigues if he does too much, but it is the following day when his body really gives him the message.  So he is learning from that and trying to figure out his own limits.   

 

Hey there

 

I was exactly the same as you describe above.  Bending to put anything away felt like a heavy weight on my head.  Moving suddenly made it feel like my eyes were trying to catch up in slow motion to where I'd moved my head to.  The woolly feeling - definitely!  Feels like you're trying to think through fog and that your brain is wrapped in cotton wool.

 

It does get easier as time goes by and all our journey's are different.  I'm coming up to 13 years next month and, for the best part, I actually sometimes forget this has happened to me - or at least I don't think about it so much.  Its hard to adjust in the early years, but your husband will find a "new" him and his "new normal".

 

Wishing him, and you, all the best xx

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