New Member - Charlotte

[CharlieD]

Not really sure what to say or what I am hoping to get from posting but I have my SAH 22 days ago and am still very much feel as though I am in the thick of it.  I had a CT angiogram, 2 angiograms and an MRI and the surgeons was happy all was clear. I spent 2 weeks in Queens hospital and home for a week. 

 

I have chronic head pain that I am treating with a mix of pain killers. I feel myself getting lower and lower as I try to cope with the pain and anxiety of having another one.  I have 2 children aged 8 and 11 and want to be positive for them but am finding it very difficult.

 

I am incredibly lucky to be surrounded by an amazing husband and friends and family who will do anything they can to help me.  However I have felt massively overwhelmed by the experience and reading that it has a 50% survival rate and I am fixated on it happening again.

 

I read some posts on re-bleeds on here with lots of words of reassurance but all I could focus on was the 2 people who commented that they have had re bleeds. So maybe I do know what I am hoping to get, advice on how to cope with this level of anxiety in the early stages. I am hoping if I can get the anxiety under control I will manage the pain better.

 

I see how much support others seem to have taken from this and tbh am hoping it can do the same for me. 

 

Thanks in advance

 

 

[CharlieD]

Thank you CaseyR. I had an amazing neuro surgeon who I will see again in 6 weeks. He actually called me at home and reassured me that, as he put it, I am no more likely to have a bleed than he is. I want to believe it but my anxiety and probably the shock of the last few weeks stops me. I notice everyone comments on hydration and will be sure to stick to the amounts I drank in hospital. Anything to help.

 

All the best.

 

[Catwoman23]

Welcome to BTG Charlotte.

 

I know its overwhelming. I cannot give medical advice, but please read some of the posts on the website, you will find them very helpful. You are still in the early stages. Drink lots of water, rest, relax, don’t think too much. Good luck to you.

[Daffodil]

Morning Charlie. 

 

Its a hard world we wake up to post SAH as our brain ,our typical  reactions, and previous level of health and comfort have literally changed overnight and you are right in the thick of  this as it’s such early days for you. 

 

Right now as Casey and Catwoman say the best advice is to rest and not to try to resume or pick up too much tempted though you may be. Imagine if you’d fallen down the stairs, how black n blue and stiff you would be from that, the very visual image of that Injury would force you to take it easy. Now realise that essentially your brain has been through similar. It is trying to heal post bleed and procedure but it’s also got to run the show of your body and functions too and it uses huge amount of energy to do so so it struggles and anxiety which is chemical in form can run riot as things are out of whack.

 

The anxiety is horrible. I was never previously anxious prior to SAH but there were times when post it really sat on top of me. Things that helped me were counselling from early on and also I practise mindfulness and did before bleed so I used to sit and observe my worry and let it pass and shift as most thoughts do. With practice I know that as long as my symptoms don’t get worse then it’s just a thought and it will pass given time. That might sound flaky but it works for me. Also eat well, don’t get hungry and make sure you eat healthy food with lots of minerals and proteins. 

 

My daughters were a bit younger than yours when I had mine and I explained to them that I would get worried sometimes which was part of the injury and effect but if I was being still they could help by just sitting with me and holding my hand, on other days I needed more of a hug with my husband just holding me but human touch helps. 

 

I can sit from where I am now 6 plus years on and tell you time will Help but equally dont suffer , talk to people. Write the good and the bad down each night before bed, be kind to yourself and remember you’ve had trauma, it won’t just bounce back into place but in time you will feel differently to now. 

 

Take care . Tread gently and kindly with yourself. 

 

 

[Winb143]

Hi Charlie,

 

My Daughter found this site while I was in hospital and she put me onto it.  My early days were doom and gloom and I was singing songs I wanted played at my funeral!! that's how bad I was.  

 

Then I saw people talking laughing and getting on with life and they had been through it and one girl was pregnant.  

 

I came on here and went into green room and we spoke and I knew I wasn't the only one.  So keep happy, sing and try not to stress as I did in early days and if you are worried come on here, we cannot give medical advice but when you hear "Yes I got headaches in the early days" we then realise it is part of recovery but if ever worried always see Doctor.  

 

Welcome to BTG (Behind the Gray)  and maybe I wont sing to you  lol cannot promise though xxxx Trying to say life goes on and does get better slowly but surely and take no ones  problems on and keep happy when possible it all helps in our recovery.

 

 

Good luck 

Win xxxx

 

 

[SarahLS]

Hi Charlotte,

 

Like you after my NASAH (6 months ago tomorrow) fear and anxiety were my biggest worries, especially as I wasn't kept in hospital apart from one night.  My GP took this really seriously however and we tweaked other meds to help this. Once the fear was under control I did also find that the severity of the headaches decreased too.

 

I can still feel my anxiety levels are high, and there are definite moments of panic - and like Daffodil this wasn't how I was pre-bleed, but again some deep breathing and the feelings do ease for me (mostly). It has taken me a long time to get anywhere near back to the confidence I had before December - it took me 7 weeks to even leave the house without my husband but again thinking positively and talking openly about my fears/feelings is definitely helping me. Along with lots of hugs from husband and my nephew...

 

Can I just say how impressed I am that you are back at your computer/reading a message board at just 22 days after falling ill. I couldn't focus on a screen for any length of time for a lot longer than that.

 

I hope that you do start to feel less anxious soon but look after yourself, and be kind to yourself,

 

Sarah

[Swishy]

Hi Charlotte,

 

I just saw my Neurologist for my 1 year visit after my SAH ...He told me again that it is not likely to happen again and I laughed....I laughed because when he told me this a year ago I almost couldn't hear him...the fear was blocking my ears...I know sounds crazy but that is how it felt...I told him this when I saw him the other day...

 

A year later..yes I do believe him because I have read a lot about it and from the knowledge I got here on this site...I also think the fact that a year has passed and I am here and well helped also.   It takes time to trust your body again.  I hope each day brings you closer to inner peace...My best wishes to you.

 

jean

[CharlieD]

Thank you so much for you replies. It feels really nice to talk to people who have been through this and can understand the fear. Like you Sarah and Daffodil I was a very confident person who just got on with things and never experienced anxiety like this. I will certainly take everyone's advice. 

 

My mum called Headway to enquire about counselling but they felt it was too soon, that was last week. When did you start Daffodil? I also see people discussing neuropsychologists. Should I go to a counsellor or one of those? I think i will have to pay but I will mention to my GP.

 

I think the reason I have got on here so quick and probably why I am struggling to cope is I am real solution finder and it is very hard to accept there isn't one except time and hoping it never happens again.

 

I will find out more about the breathing etc. My friend downloaded Calm for me in the hospital and I listen to the nature sounds and the daily calm every night which i find helps. 

 

Thank you for your kind words Catwoman and Win, I think its best I don't sing for everyone's sake! My family have been through enough, 

[CharlieD]

Thanks Swishy I think our posts crossed over. I am glad to hear you fear has eased and everyone seems to say it takes time. I guess i need to manage it til that time passes and try to get some control over it as it making me not want to get on with things.

[ClareM]

Hi Charlie

 

I think anxiety is so common post Sah particularly after there not being a cause. Not knowing what made it happen in some ways makes it worse than having an aneurysm that has been treated. 

 

I saw - and still see- a neuropsychologist but didn’t start my initial assessment until 15 months post bleed. It has been the best thing for me, she has supported me so much and made me feel that although my life  has changed it’s not all bad. 

 

I have heard a lot about mindfulness and do try it myself though I find the technique hard. My neuropsychologist recommends it and I believe it is very good for anxiety. 

 

Hope you find the help you need , speak to your GP they should be able to make referrals and it should be on the NHS, you shouldn’t have to pay.  

 

Take care and keep us posted. 

 

Clare xx

[Daffodil]

Charlie

I had the good fortune that my work offers telephone counselling through a health cover I could self refer to and I did this about five months after my SAH and not long after I had surgery to place a VP shunt. It really helped. Then later at about 9 months my super GP diagnosed PTSD and so prescribed a medication I could just take if I had a high anxiety moment instead of a daily tablet as i was not considered depressed and I got referred for CBT on the NHS which was very good.

 

Finally my treating hospital recommended a follow up appointment based on the surgeries and history with a neuropsychologist before I could even think about getting back to some work , I had assessments , a few sessions with him and then attended six group session at Queens Square which I found hard but very  useful, that was at about 18 months out though when I could manage the travel and throughout had my own mindfulness practice.

 

Lastly I also had Headway support to regain some of the more physical challenges I had and have a community support nurse  assigned to me who listened, talked, adviced and coached me to help restore confidence in my changed abilities. For instance I wanted to go swimming but was scared in case my brain let in water.

 

Yes I know sounds a bit daft now but all I could think was what if I get water in the Shunt or EVD hole! Plus I had no drivers license as had to hand that back so she drove me, held my hand literally and we went swimming. That meant I could then go with my family without fear. Baby steps maybe but all built a new platform for me. 

 

Charlie do what works for you, we are all different, will have different worries and fear. Some will battle on alone, some will take medication, others counselling , some a combination of all those things and no one way is better but I honestly think the best thing you can ever do is to say ‘I’m struggling with this’ and reach out your hand for help. 

[Skippy]

On 05/06/2018 at 21:15, CharlieD said:

My mum called Headway to enquire about counselling but they felt it was too soon, that was last week. When did you start Daffodil? I also see people discussing neuropsychologists. Should I go to a counsellor or one of those? I think i will have to pay but I will mention to my GP.

 

I had a fantastic GP who referred me for counselling 3 weeks after my SAH - I was immediately diagnosed with PTSD and saw my counsellor about a week after the referral - best thing I ever did - besides joining BTG 

[CharlieD]

Thanks everyone, Yes Clare I think the anxiety of not knowing why it happened is the biggest thing for me. I saw my GP today he gave me the number for therapy services I have an assessment call tomorrow. I am hoping the wait isn't too long. 

 

Really appreciate everyone's advice. 

Charlotte

 

 

[Kay]

Hi Charlotte,  just wondering if that was Queens Hospital Romford?

 

I too got rather overwhelmed after finding out the statistics, so your definitely not alone there. For me the anxiety has certainly eased over time thankfully.

 

You are still very early on in the recovery process, so please don't be too harsh on yourself. I know you want to be proactive and that is great, just also try to allow your brain healing time, that may help a bit with the head pains.

 

 

[CharlieD]

Hi Kay, Yes it was I was taken into Southend but transferred to Queens. I am not sure if you are allowed to mention doctor's names on here but mine really was lovely and helped me so much through this. Hope you had same experience there?

[Kay]

I was originally taken to Basildon and then likewise transferred to Queens. They were fantastic at Queens, both times, especially my neuro team who were all absolutely amazing, I could not have asked for better (I do suspect everyone must think this about there own neurosurgeons though, it's hard not to). The nurses on the Sahara wards were also fantastic,  I feel very lucky to have had such great care.