Karen

Thanks Liz for clarifying, very much appreciated. xx

Elizabeth, sometimes people say inappropriate things to make "light" of a situation... such as 

 

 

In fact one told him he'd feel like a new man in January because he was a doc he would recover much more quickly... ??????  Because of who he is....  Sigh..

Men are Men ... the alpha male .. they don't want to admit any weakness or feel vulnerable.  I don't think that your Husbands profession actually comes in to play post SAH. If you're the major wage earner, it's bound to have some effect. I've seen a fair amount of Men on this site who were the major wage earner having difficulties with many aspects of their life.....including work and having to make decisions in that area as they weren't coping.

If your Husbands SAH happened after having sex, then yes, he will probably be finding that this area of his life is difficult at the minute ... there's not many of us in the early weeks, months etc that don't experience a bit of post traumatic stress or flashbacks ... perhaps you need to talk to him about it and tell him that it's okay if he doesn't feel like sex at the minute ... you can still both be intimate in other ways.

Your Husband will eventually realise what he can and what he can't do, as in energy levels ... he will work that one out for himself ... you will have to pick up the pieces in the meantime... no, you're not his Mom, but he's had a brain injury ... love, guidance and telling him that it's okay for a while .... he will find his own level over the next few months .... be patient with him and work it through......xx

 

 

I believe there's a Wessex Neuro support meeting this Saturday and we are going to try and make it to that one as the next one isn't till March 28th.

Hi Mandy,

If you manage the Wessex meet you will find the support helpful and meeting others in the same position as yourself is pretty comforting too. 

Re: Eye patching - I was told to patch alternative eyes, as it can make the muscles lazy in your bad eye and told that it's these muscles that need to be strengthened to bring the bad eye eventually back in line with the good one. I used to patch the bad eye when I was out and about, but patch over the good eye when I was in the house. 

xx

Admin Note to Members:  It is an offence not to declare a medical condition to the DVLA that would affect a persons ability to drive safely. You also could be fined up to £1,000 if you don't tell the DVLA about your condition and you could also be prosecuted if you have an accident.

If you have an accident or injured a third party and your medical condition which you knowingly witheld came to light, you would not be insured as you would be driving illegally. 

From my own experience with the DVLA I was allowed to hold onto my licence as long as the double vision was corrected to single vision. I was allowed to drive using either an eye patch or glasses with the lens taped over. I also informed my car insurance company who were absolutely fine.

As frustrating as the process is with the DVLA the rules are there for very good reason and that's to keep all road users safe.

Wishing you well Liz and for tomorrow too ...xx

Elizabeth, I can't advise you what to do ... but from your post it seems like your Husband is looking for you to give him an answer or to tell him that it's okay? It's not just his decision, but yours too to some degree.

A SAH is not an excuse ... it's a medical condition and a brain injury. It took me six months to get my Husband to have some sort of understanding as to why I was going to have to quit my job. I wanted to get back to "normal", but I couldn't ... I was too ill and it wasn't for the lack of trying to work. I put myself through hell and at that point I still didn't understand it all myself. I was waiting for him to tell me that it was "okay" to quit and he was waiting for me to tell him that I wasn't "okay" ... lack of communication and non acceptance... trying to make it all okay for the other person... It was me that had to tell him in the end and I felt like a complete failure, but I couldn't continue feeling like I did and the pressure had become huge ... trying to cope with feeling so unwell and trying to look and continue as if all was normal, when it was far from it.

Financially, it was difficult and a worry... I was self employed, earning pretty good money pre-SAH and my Husband had just taken another job that was salaried rather than hourly paid and we needed two wages in at that point to pay the bills or so we thought.  However, we had no choice and I had to stop working .... we looked at all of the bills, the two cars and where we could reduce our finances. Our lifestyle altered, it had to ... but you know what? .... we did it.  I'm not saying that it's easy .... it wasn't....but life has worked out pretty okay. 

I have gone back to work on occasions ... but only on a temporary basis.

May be have a look at the alternatives and see what you can do financially..... neither of you are happy at the moment and it sounds as though you're not talking because you don't want to upset each other.  It's not about fixing each other, but communicating and being realistic as to what adjustments can or need to be made.

I wish you both well .... life does and will work out..... sending hugs and love. xx

Elizabeth, I think that it's going to be up to your Husband as in finding "his new normal" post SAH ... my advice has always been, especially in the early months, not to compare yourself (in recovery terms) as to what you were like before the SAH, but judge your recovery against the day that you left hospital and see the improvements. I think that it takes time to find acceptance and get into that mindset.

If you pit yourself up against your pre-SAH normal and start failing to achieve, then you feel like a failure and this starts to lead to feeling very frustrated and in some cases depression. Life does and will get better and good improvement is seen by most people on here. This does not just happen over the early weeks or months, but we experience it over many years. It really isn't all doom and gloom and the brain will take time to heal .... it also learns new pathways and we also learn ways to cope and to try manage and get the balance right with our life.

Whether your Husband will achieve all of the activities that you've listed ... I can't tell you.  He may or may not .... but if he doesn't, he needs to cut himself some slack, as it is possible that next year, he will achieve it and if he doesn't, may be the year after ... recovery from brain injury is an unknown quantity and individual to us all.

Your support and understanding is the most important aspect .... make sure that he does rest up/take a break .... if you see him struggling with fatigue or isn't coping with any aspect of life .... talk to him and keep the lines of communication open. What you see now, is not necessarily how it's going to be, this time next year ... or the year after ... it will get better but he needs time to recover and his brain to heal.

I was told that it takes 3 months for the blood from a bleed to fully dissipate down the spinal chord. A minimum of 3 - 6 months in return to work and that obviously depends on how severe the bleed was and damage etc. I've never managed to return to work, but I'm going to be 10 years post this SAH this year and I can promise you, that I can do stuff now, that I couldn't do 5 years ago ... it does get better and knowing when to rest up and knowing your limitations is key ... however, you do have to find those limitations yourself and discover what does and doesn't work for you.

Did you show him the video?  Three of those guys were early members of Behind the Gray and we were treated in the same Neuro Hospital .... When I was sent one of the first copies from them in my early years, it was very emotional.... It was the first time that I'd really had a decent cry and could say that I wasn't abnormal as to how I was feeling .... I suppose that it was acknowledgement as to what had happened to me and probably to be a lot kinder to myself. I did watch it in private though, before showing my Husband and children. 

You've described yourself as feeling "helpless" .... it sounds to me as though you're being thoroughly pro-active .... it's as much a learning curve for you, as it will be for your Husband.  You're doing great and you're on here looking for help and recovery information .... don't see yourself as being helpless ... we're all here if you need anything.   xx

Hi Elizabeth,

The following link to a video may be of help to you... http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/PersonalExperiences/Videopatientexperiencesofsubarachnoidhaemorrhage.aspx

I can only say that what you've written about your Husbands problems post SAH, doesn't sound that uncommon to me. From my own experience and with running this site for 9 years, I would say that what he's experiencing are pretty common recovery problems in the early months and even the first year, but every recovery is individual re: time scale.

Returning to work at 3 weeks must have been absolutely hellish and I feel for him.  

xx

Admin test move this thread to advice and tips and leave a re-direct.

Hi Sara and welcome to BTG .... some lovely replies to you and all I can say, is that you're early days post SAH and life will get better given time  ....don't rush it and be kind to yourself. xx

Jill, without going too much off topic ... I can see that you've done wonderfully well since you first tried to post on Behind the Gray and the amount of help that you needed in your early days on here ... I know that there have been quite a few members on here, who also had never used a computer until after they had their SAH.... but all have made so much improvement and being 70+ years? .... well, you are a complete star in my eyes and driving a pony too! 

Be proud of yourself Jill .. and if your family forget that you are over 70 and recovering from a SAH .... I don't ... you're an inspiration to all of us. Happy New Year to you too and wishing you all good things. xx 

You will get a fair amount of water from other sources such as food....vegetables, salad, milk ... etc

I would also say, that with any tablets that you take, drink a good glass of water with them and from what I've been told, it gets into the system quicker .... especially with painkillers. I have a Husband that still swallows them dry and then wonders why they're not getting into his system faster and taking the pain away.

Carolyn, unfortunately Coffee can dehydrate you .. it probably depends on how much of it you drink .... there seems to be mixed opinion on the effect of caffeine.  I've only just started back on coffee, just one a day and it gives me a bit of a kick start.

I have found that drinking a glass of water before bed time does help.

It's a bit of a fine balancing act, as too much water can also affect your sodium levels .... so, you need to be careful and just make sure that you're hydrated.

Admin note:

Due to the nature of this thread and possible legal implications would any member who wishes to reply to Lauren, please contact her via Private Message. 

Thank you. 

 

 

 

I would ask all hospitals to refer people to here for follow up advice.  The whole gamut of levels.  From a 1st person perspective.

 

Hi Julian, there are a few Neuro Hospitals who do use this site for information and also refer people who are struggling with their recovery. Lack of recovery info and support is the main reason why this site was set up and the need to talk to others in the same boat to share experiences .... wish that somebody had done something similar before I had my own SAH. x

 

Let's all get better and when we have bad days say to ourselves "Life is Good" 

and smile xx

Be Well All

I don't think that Win's post was intended to make you feel upset or to make you feel personally offended. Nobody is telling you that you can't have a bad day.....we all have those. The above comment from Win was well intentioned and I think that you've perhaps misread it or taken it out of context, as Win always ends her posts on a positive and light hearted note as that's how she deals with life.

Win's had it tougher than most of us on here physically and it's a miracle that she can even type a response on this forum from the early days of her daughter posting on here when Win was in hospital and the outcome sounded extremely bleak.  

I've seen Win's progress since she first came on to the site with her typing and posts ... and it's been personally uplifting to see her positivity after such a traumatic brain injury and to see the kindness that she's offered to others with her support, even though her own life isn't at all easy.

Hi Oliver,

I think that Tina means did you have any surgery. I'm presuming that you hit your head when you fell and that caused the bleed? Very scary experience for you and would imagine that it's probably put you off of the drink too. 

I was told by my Consultant that it can take up to 3 months for the blood to fully dissipate down the spinal cord. Many of us have had sleep problems after the initial trauma of a bleed. I used to be awake often until 4 am in the morning and it was like torture. Plus you've probably given yourself a bit of a shock with your experience.

Fatigue is extremely common especially in the first few weeks/ months as the brain is trying to heal. As Tina has said, keep yourself hydrated as it does help with headaches etc. 

I'm presuming that you're not working at the minute since your injury? If you feel that you need help with sleeping, go and have a chat with your GP, I know that some members on here did have something prescribed to help them get back into a sleeping pattern.

It does honestly get better.

I was out with my friends for a night out in leeds. Somehow I ended up separated from everyone else and outside the club that everyone else was in. I realise that it was my fault and I should never have been as drunk as I was. But either way I ended up on my own and fell against the curb and had my haemmorhage. I woke up in hospital and it was probably the most terrifying experience of my life. Waking up and having absolutely no idea what had happened was awful and I would not wish it upon anybody.

I got out of hospital quick enough though and assumed that that meant I would be okay. Turns out I have massive problems sleeping and incredible tiredness throughout the day though if I dont get about 10-12 hours sleep. So I know this is a common problem after SAH and I was just wondering if anybody has found a way to conquer it and if so I would greatly appreciate any advice you could give.

Thanks,
Oliver

Oh Janet, I am so very sorry to hear your news.  What a tough year you and your lovely family have had. I'm so glad to hear that little Freddie is doing well.

Have you tried the E-Cigs? I know that Keith (Bogbrush) was using them at one point to quit.

Good to hear that you've finally won your pension ... the struggle that you've had with work hasn't probably helped your stress levels or  health. 

Would love to be able to give you a massive hug right now .... know that I'm thinking of you .... Love to you and Morris and I hope that he's keeping well. xxx

Daff, that's a really good response and I think that you've pretty much covered it. 

I've pretty much become headache free most weeks .... well, I still have them and probably more frequently than others who haven't had a SAH, but it's manageable. I still have a neck left on my aneurysm, so I'm not completely fixed.

I do have the odd week where I suffer ... but nothing like the earlier years. You may hate me for saying this, but I think that the initial 2 years are a marker to understand what's happened to you and at about 5 years post SAH you probably learn what is and isn't good for you and what works for you.

If you can offload additional stress, then do it ... a little bit of stress isn't bad for you and we will all have stress in our lives to manage and we can't always change things, such is the nature of life.

It's tough, but trial an error to see what you're managing and when things go wrong, take a mental note of what you've been doing. Sometimes you have to develop a bit of a selfish gene .... ask for help, accept it and do what's good for you too.

I'm nearly 10 years on from this SAH and its a learning curve, but life does get better. xx

Phil, you're very early days post SAH ... emotions will run riot for quite a while and we all understand that here.  If you need to talk, then just keep talking on here.

A non aneurysm bleed, normally seems to have a very good prognosis .... not that this helps you at this time.  It's a scary time and you will feel of the things that you are feeling....but life will get better.

I'm sorry to hear that your wife and son have had to go away ... get yourself better, keep the contact up with your wife and son .... she is probably feeling pretty scared too and has done what she thinks is good for your boy....to be honest, as a Mum, I would have done the same if my partner was hitting the wall and you would probably have done the same too if it was your wife.  She's only looking out for your boy.

You will get better ... the anti-depressants will help you and will take a few weeks to kick in ... get plenty of rest, keep your fluids up and accept help. Talk to your wife, don't bottle it up ... she will feel better if you do and you will too. Be honest and open about how you're feeling ... 

Life does and will get better given time and there are plenty of people on here who will help to support you. x

Lovely to hear about the positives with Conrad ... but so very sorry to hear how he has been treated ... it's really enough to make anybody weep.

Great to know that Conrad is sharing his story with us and you are too....it really does make a difference.

Say "hello" to Conrad from me ... I can remember fighting too and if he's still feeling traumatised please do tell his GP and get him referred for counselling. Post Traumatic Stress Disorder is something that many of us suffer with flashbacks ... I wish that I knew then, what I do now, but didn't have the knowledge ... I couldn't sleep and had flashbacks and many of the other symptoms.

What Conrad has suffered, is probably a lot worse than many of us .... it's always good to talk.

Hugs and love to you both. xxxx 

Forgot to say, that in the early days/months with the double vision, dizziness and stabbing pain in eye, I found a little bit of relief in patching over the bad eye for a few hours ... I used to use a round make up remover pad and surgical tape to apply it ... gave me some respite, but not the cure all. A cold wet flannel left in the fridge can help too with the eye and head pain. I also found (still use them) that eye moisturising drops help.

It's all a bit hit and miss really ... but hope that your Husband can find some respite from the pain or at least something that helps to make life a little more comfortable. xx

Sounds as though it could be nerve pain .... which is what I had for quite a while and you need to consult his GP to perhaps try a different route.

Try a bath for him, before bed time, as a good nights sleep will help ... something like a Radox muscle soak, which are herbal bath salts and pretty cheap ...you can pick a box up from Tesco or the Chemist.

I didn't find that Co-Codamol worked for me at all after the SAH ... I often have pretty bad eye pain on my right hand side of my face (had a third nerve palsy) ... I found that taking Paracetamol with Ibuprofen worked for me ... not that we can recommend drugs/painkillers on here, but it's another route to take, as in asking your GP to see if it's suitable.  One size doesn't always fit all ....xx

Put your feet up and hope that you're healing well ... great news! I may be another one that needs further surgery .... lovely to read your post. xx

 

 

Is it safe for me to fly?

Flying is perfectly safe after a subarachnoid haemorrhage; however, you are unlikely to feel physically well enough to fly within the first couple of months of recovery. You may find the journey more tiring than previously, and it may take you slightly longer to recover in the first year or so, but it will not cause you any problems specific to the subarachnoid haemorrhage. Pilot's licences will need to be reviewed.

This extract has been taken from the following hospital website, where some of us were treated in the UK:

http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/FrequentlyAskedQuestions.aspx

The full article is 7 pages long, so it's quite lengthy and for me personally, I find it easier to print it off and read it, rather than reading from the computer screen.

I am still in contact with Dr. Noble and he thanks you all.  If you would like to leave feedback on this thread, then please feel free to do so.

Psychological distress after subarachnoid hemorrhage: Patient support groups can help us better detect it - Adam J. Noble & Thomas Schenk - Journal of the Neurological Sciences 2014

Introduction

Noble &amp_ Schenk_&#39_14 Journal of Neurological Sciences.pdf

or if the above doesn't work, click on: http://fulltext.study/download/1913480.pdf