Fear of rebleed

[Nat Baker]

Hi everyone,

 

I hope you are all well. I had my SAH in October 2014, and ever since then have been convinced that it is going to happen again.

 

I still get headaches quite often, and every time I do I am certain that it means I am having another bleed; the constant stressing and worrying is absolutely exhausting! I am on Google most days looking up any symptoms and attributing them all to my haemorrhage; it's getting to the point where it's getting in the way of life a little bit!

 

Today I am aching a bit and I have a headache, so I have convinced myself that I am going to end up back in hospital by tomorrow, even though I know that this is a bit silly and probably not the case, I can't stop worrying.

 

They said that fear of rebleed was common in the early stages of recovery, but I'm 16 months on now and it's not showing any signs of getting better.

 

I suppose I was just wondering if anyone else has anything similar or was able to overcome this fear and anxiety and could offer some advice?

 

Thanks. x

[Super Mario]

Hi, just about everybody has the fear of a re-bleed initially but your fear has gone beyond that. I would say a visit to your doctors is called for with the view of asking to be referred for counselling to help you come to terms with what has happened.

[Karen]

Hi Nat,

 

Your fear is pretty normal to be honest ... it takes time to build confidence up ... in the sense that your body won't let you down in such a horrendous way ever again.

 

Stop searching .... I realised that Google wasn't my friend after a while and to be honest, you'll just drive yourself nuts with worry.... I know that I did exactly the same as you and now, I don't search at all re: SAH, unless it's website related ... sit on your hands and don't be tempted..... you won't find the answer that you're looking for and you'll just make your anxiety worse and then it becomes a vicious circle.

 

Time is definitely the best healer and it does take time to re-build confidence. My first two years were the hardest ones to tackle and as time passes, it gets easier and the negative thoughts will go.

 

If it helps, I've been running this website for nearly 10 years and I don't know of one member who's had a re-bleed.

 

Take heart Nat ... you will be okay and as Super Mario has said, go see your GP and get help if it's overtaking your life. xx

[ClareM]

Hi Nat

 

It probably doesn't help but I often feel the same way. I am 12 months on and the headaches are getting more frequent rather than less. Probably because I do too much and don't drink enough water. I have found that exercise helps as it takes my mind off things and as I don't have to use my brain much to do it I usually feel pretty good afterwards. The other thing is pain relief. I was told on leaving hospital that I may always be more prone to headaches now and to not be a martyr to them. Take the paracetamol, pain relief is there to help.

 

What type of bleed did you have and any surgery?

I agree with SM and Karen about contacting your GP for some help, especially as it worries you so much. Re-bleed I was told is about as likely to happen as it it likely for anyone to have a SAH, so rare.

Keep positive and try and find things to take your mind off your worries. Remember you are a survivor!

 

Clare xx

[Chelle C]

Hi Nat,

 

I have to say I do agree with all that has been said to you, if you Google believe me you worry more,

 

I had my bleed in June 2014 and I did the very same thing, please try not to do it.

 

As Karen said, headaches are normal for pretty much all of us and it does improve as time goes on,

 

Make sure you are drinking plenty of water, keeping hydrated really does help, you will find a lot of

people on BTG will recommend this, I find it helps me a lot with the headaches.

 

To much stress also can be a contributing factor, like Karen said it can become a vicious circle, I do

think maybe seeing your GP would help, I had some talking therapy and I found that helped also.

 

If you think of Googling come on here instead, post your fears on here, you will find a lot of support

and make a lot of friends here also.

 

You will find as time goes on the fears lessen, you will get there and we are here to help you do that.

 

Love

Michelle x

[jess]

Hi Nat so far this year I would of had meningitis once brain tumour twice stroke three times and sah at least ten times if I had googled it everytime I felt ill (which I used to do that's how I know). You need to drink plenty of water rest and relax.

Go to your doctor tell them how you feel but panicking will only make your symptoms worse believe me I know xxx

Hope things improve soon xxx

[Winb143]

Hello Nat,

 

Before I came on BTG I was thinking about songs I want when I die.  I was so sure that was in 2010,  6 years later they cannot shut me up.   I sing and before I go to bed,  I think of times when I laughed so much, I make it a point to sing and laugh.

 

My Surgeon told me "No Stress" then signed me off and said if you feel ill tell Doctor and come back to me.  So at first I had a lot of headaches, a lot bought on by myself and my anxiety.  I came on here and everyone was normal.  ha 

 

So I decided to think one time in life when I have laughed so much I finished up crying/shoulders moving tears of laughter falling..get the idea?  So I think who made me laugh the most and it was my Mum and Sisters so I think of times with them before I go to sleep. 

Hubs gets the hump lol as he is trying to sleep and I shake the bed with laughter.  Then I sing and I'm afraid I will type a song to you also.

 

The others have gone through it so beware Win in Concert with Carolyn and Subs sometimes xxx  Now you can join in or go oh no not her again lol,   Also  I read a smile stops worry ..while you are smiling you cannot feel sad but you have to want to smile.

 

You will get there trust me I sing and smile lol.

 

Goodnight and Welcome to BTG

 

Love

 

Winb143 xx xx  

[Daffodil]

Hi Nat

As you can see from above how you feel is entirely normal but that said it is really horrid and unpleasant living with this level of fear and so I think all of us are united in saying don't suffer it alone. Go to you GP, ask for counselling and in the meantime do things that help you relax and let the panic and worry subside when that feeling comes upon you.

Survival is a funny thing. Our adrenalin kicks in and that helps us deal with the unpleasantness of our trauma in the early days but that wears off and then we are left with the legacy of knowing and feeling the trauma of the experiences, it reaches into your soul and has changed us all, all that takes some getting used to. Time helps but also so does talking about your worry.

I had counselling after SAH! Once in the first year and then again when my fears intensified for no reason, I was then diagnosed with PTSD so was able to learn some techniques that helped and still help me get past that fear and feeling when it grips.

Main thing Nat is when you are at you most worried is to just sit, watch and wait. like Win says if you can hum a tune, or look at a nice picture or suck a mint, basically concentrate on something small and then just notice whether your pain has shifted or moved. The reality is if we have another bleed that is not within our control anyway but trying to stay calm will help the blood pressure which is a good thing and get help. As Karen says it's incredibly rare as far as I know but the fear of it is incredibly common. It is a viscous circle, the more you stress, the more you get headaches, the more you worry, so the more you stress....try to break the cycle.

Worry is normal but in the end it will change nothing . Sorry if that sounds harsh, I really do get it but I have had to let my worries go( and they can still grip me four years on ) Yes my shunt could need replacing or block, yes I could re bleed but I could also fall down the stairs, get knocked down by bus, worry won't keep me safe, you get the picture.
Life is for living lovely lady. Yes In an adjusted and different way but we have to choose to accommodate our new fears and knowledge of our fragility and then we can smile more broadly and enjoy our days.

Go talk to someone x

[subzero]

Hello Nat-Thanks for sharing your SAH bleed fears on BTG. It must be so difficult for you to cope with having survived your SAH, and then finding that the fear of another bleed has blurred the joy of making such a good recovery.

 

Those who have already replied to your post have given such clear pointers on how best to go forward.

 

My wife had her SAH in May 2011, and I am sure I experienced the fears of your close family and friends. Mrs Subs had to wait three weeks before her coiling. During this time she felt pain at the back of her head. This was a nightmare for me as I was the one feeling that any minute she was going to have another bleed. When she finally returned home, it was me who was full of anxiety, and often I awoke during the night to check to see if she was still breathing. When I went out for messages, as I returned home and saw her asleep in the conservatory, I was always full of apprehension in these early days to know that she was still OK.

 

However Nat- these feelings  I had gradually faded as we concentrated on her recovery and attempt to phase back into her work. (I should add that Mrs Subs never had those fears-it was me !)

 

For you, this uncertainty still seems to be taking over your thoughts, and as everyone advises, getting professional help is a wise move to help you move on with your life.

 

You have been so fortunate in your recovery from SAH and I do hope you are able to find the guidance to live as full a life as possible. Enjoy making plans for the future and be oh so thankful- life is a wonderful gift to us all.

 

Best wishes

 

 

Subs

[Bman250]

Hi Nat,
I think we all go through that fear. I did, especially during times of exertion such as exercise, sneezing, coughing, sex, going to the bathroom etc. My SAH occurred New Years Eve 2014 shortly after having sex. As you can imagine my fear of having sex post SAH. I eventually did and confidence has finally returned as with most other activities. It takes time, I think so much info on the web is just opinion and therefore bogus so beware and stay clear.

 

Focus on the here and now, be close to those that you love, start excepting that stranger in your body as the new normal and it will get better. Laughter and exercise for the endorphins, water for cleansing and chocolate because you deserve it!

Take care,

Bill C

[Karen]

Some really good responses on this thread .... love to all. xx

[kpaggett]

I sensed that my fear response was way out of whack towards many things.  My feelings had changed after NASAH.  I sought professional help when I started to feel panicky and that just wasn't who I was at all.  It was one of the best decisions I made and it really helped.  You shouldn't be able to handle this alone, it isn't a character flaw, and for me, I really didn't want to put my husband through my worries every day.  By having an impartial person who is giving you new information on how to deal with fears, it improves a whole lot of other things as well.

 

 As you can see, many of us have had this exact experience.  I went so far as to get my medical records and look at my scans over and over in case the doctors had missed something even though I had never been trained in reading films!  I googled everything, I read research papers to make sure they were giving me more than just the standard of care.  I didn't trust the professionals knew what they were doing in my particular case.

 

All of this worry.  I dealt with it when I got the tools from someone who works on this professionally.  If I were to just keep to my own devices, I'd get the same result every day because I didn't know what else I could have been doing differently.

 

Once you learn, then you can work it out when it comes up.

You don't have to do it all by yourself.  Take it easy,

~Kris

[momo]

I also got professional help to deal with my fears and anxiety.  It was difficult to come to terms with the fact I needed help but I really did.  To speak to someone you don't know and who knows exactly how to help you is key.

Don't let this consume you...it will.  Learn the techniques to cope with this, get the help you need.  We've all been through so much, don't try to deal with this alone.

Hope the fear subsides soon. I understand how you feel and its horrible..

 

I have no fear at all now.. 

[Colleen]

Hi Nat,

I too have anxiety issues related to the SAH. I finally saw a neurologist who explained to me that the bleed had damaged the part of my brain that controlst fear. I now take a medication that helps, but I also use techniques described by others to distract my focus. It will get better with time, but after more than seven years I can still get a bit freaked out, especially if I hit my head.

Best wishes, Colleen

[Chris G]

My doctor told me repeatedly that the chance of a re-bleed is no greater than the original chance of a bleed.  He said it would be like getting hit by lightening twice or winning the lottery twice.  So I finally believed him.  While I will not do anything to purposely jar my head around (like rollercoasters), I have learned to move on with my life. 

 

If you think about it, before you had the SAH, it was in there waiting to happen.  Now it is done and over, so you are in a way healthier than you were before it.  At least that what I keep telling myself.

[Carolynusa]

Hi Nat - I wish I could throw fairy dust on you to help ease your mind. It's a hard thing to handle without some kind of help. The messages above should help in that most of us have or had some kind of issue relative to what you described. You are definitely not alone.

I had a whopper close to 2 years ago; in a coma for a month; another 4 weeks before I went home. Don't remember any of it. I was terrified of a lot of things, including the possibility of another bleed. I won't lie, Nat...I sometimes feel like that again. My head might hurt more than usual so I am sure it is going to happen again. I'm still here! I worry less and less about that.

 

Aftercare helps. Ask for it. Take every opportunity you can to help you feel better and reassure you. Read some threads on this site. Don't give up on yourself! I can tell you are strong. Use your strength now. Try to be as positive as possible. It helps!

Come back and be our friend. Friend's are great when you are fearful.

Be well and positive. Hope you will come back and keep us posted on your progress.

Positive thoughts to you.
Carolyn
P.S. Win is right about music and smiling!

[missran]

Hey i know it's been a while since you posted,  but i wanted to say,  I'm afraid all the time.   Every head ache,  every dizzy feeling,  every nausea.   It's been 10 years.   It's ok.  I have a deal with my doctor that he continue to give me peace of mind every couple of years with regular checks.   I go whenever i feel scared.   

[Winb143]

Missran,

 

It is always with us, guess we just have to say to ourselves "We will beat this" easier said sometime  !!

 

But a song and a smile can always help us xx

 

What happened to us was out of the blue and scared us, but we are still here xx

 

So keep smiling and singing Happy songs, we do need happiness in our lives after what we have been through xx

 

Love

Win xxxx  you have a  Good Doc xxxx

[Shobs]

Hello Nat, welcome to this comforting place.

(my husband had his first SAH, followed by a fair few mishaps back-to-back in Oct 2016)
Like all of these lovely people have said, it is normal to have this fear. Baby steps at a time helps.

Both my husband and I took up Yoga in April and it has been very useful. (please PM me if you need more details)

Set aside a time in the day, when you will ONLY worry. If the fear crosses the mind, check the time and say that one is for my worry time. It has helped me a lot, personally.

Stay close to people that wish you well and give you lots of positive vibes. Speak to people that smile and laugh a lot!

Time is a big healer, for all wounds physical, emotional and physiological.

Hope it gets better for you very soon.

Hugs

Shobs xx