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Dealing with fear post SAH


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Hi everyone.

I set myself up for a challenge today, i wanted to test myself. I organised a charity coffee morning. Something I have done many times prior to having an SAH but as the day approached my pain levels and symptoms increased. Yes i have done more but have paced myself as best i can. Even with that this morning i woke up with a feeling of dread, and pain and fear which increased as the hours passed.

Suffice to say that during the actual coffee morning I had numerous tears, difficulty talking and speaking and left midway to go an see my GP to check on my increasing pain level. (I am very lucky as he is a sympathetic and knowledgable chap on SAH ) I did go back and finish up and it was a success, and yes I used up ALL my spoons which really annoys me but

my question is this.

How do you deal with the fear when it creeps up on you?

Yes I know and truly believe that the fact that im coiled and regularly checked means I am far safer than many, but how do you ignore symptoms that really could be your shunt playing up but ,ore likely may just be your brain playing tricks or healing.

Today was the first time I have actually thought,"but what if the coil is leaking" and then my beloved brain had a field day with me.

I know we talk about anxiety a lot on here but I'm struggling with my manifestation of fear and what it does to me. The pain is so real I'm just never sure if I should ignore my symptoms or not. Lucky so far I have always checked it out and one time thank goodness I did as that's when I had my shunt put in. I have had some counselling and will ask to go back I think but I would be interested to know from our lovel SAHers further down the line how you talk your brain down off the ledge of fear?

Thanks

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Hi Daff,

I had my 2nd SAH nearly 8 years ago (had a sentinel bleed 3-4 years earlier) ... In my case, I can only say that the fear lessens with a lot of time and once you regain confidence that your body isn't going to let you down again....but it won't happen overnight and even if you had a bad experience today, don't let it put you off from trying it again...keep going lovely and you will eventually reap the rewards.

Just keep doing what you're doing, start to regain the confidence in yourself and you will get there too. Even if you have to force yourself to do what you've done today .... it will get easier, so never give up. You're doing really well in my books and well done for also raising money for charity, what a shining example you are! :-D

I'm still experiencing recovery at this stage and am very grateful for that.xx

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Forgot to say, that I'm on a low dose of Propranolol (it's a Beta Blocker) for anxiety and to help prevent migraines with aura. I've been on it for probably 7 years now and it does help with both, but it isn't the complete magic cure. xx

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Thanks for the nice words Karen. That helps me it really does. Relights my hope.

I had a friend with me today who had a brain op two years ago who just held me whilst i sobbed and said' I know' ...you guys know too. that's huge comfort.

I feel very blessed to be here so it was nice to be able to do this morning for a good cause but selfishly the plan was it was part of my ' go back to work' stamina plan. Part of what I used to do at work was manage some huge staff events , in fact I was at a major event when I popped so it's pretty disconcerting that I don't think I would want to do that anymore and im pretty sure I'm woudnt even cope with anything on a scale that i used to. Wow. Some thinking to be done. But will keep on keeping on. :wink:

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Hi Daffy D,

Sorry you had a rough go but you made it through strong as you always do. You are doing great and organizing this coffee thing is huge for an SAH'er.

I don't have a shunt so I cant imagine the anxiety but I do have daily pain that is concerning. I swtiched meds a couple of weeks ago and starting getting terrible shooting pains in my head. Like 10 SAH type pains. They would last for about 30 seconds and go away. They are scary though.

I try and look at the big picture and am confident that I am going to be ok in the long run. Thats about all we can do.

Hope that helps DD

David

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Hi Daff,

I am sure there are plenty who can offer lots of experiential advice on this subject, but I would echo Karen's comments. You are doing so well, do not be too hard on yourself. You should be proud of what you have achieved.

Each time you get through a new challenge you are building your own confidence and experience in your understanding of how your brain copes with the pressure of a 'new' milestone. Today was a big day for you, but in time you will find the confidence and understanding to be able to 'talk' yourself down in situations such as that. You strike me as being a very strong individual, draw on that inner strength. How did your GP allay your fears?

I had a similar experience this week, I decided to go into the office to attend the MDs quarterly presentation at work. I didn't have to, but I chose to do it to keep myself 'visible' to senior management and also keep myself up to date with the Company's short term and long term strategies.

There were many things that put me under pressure, the presentation was actually back in the room where I collapsed from my SAH a little over a year ago. The difference was at that time I was presenting to my team, this time I was a member of the audience, no longer one of the senior managers. This fact has hit me hard again this week, but that is another story.

The journey in was fraught, public transport is not a viable option for me as it is pretty much non existent where I live. I considered driving, but did not feel confident enough to tackle motorway driving in the rush hour, and attend a 2hour presentation so I opted for a taxi, which seemed to take forever to arrive.

The upshot was I could barely concentrate on anything the MD was saying, the sensations coursing through my body were so intense that I was afraid I may have a seizure, but I didn't. The fact that I didn't have the seizure is what I cling to, I have no doubt I will experience those same sensations again under different circumstances and I will cling to the fact that I have successfully weathered that particular storm and I will do it again and again and again until my anxiety fades into the distance.

I am sure you experienced anxiety in your pre-SAH days (I know I did) how did you overcome the intense feelings then? Can you use those techniques with your post SAH anxieties?

Your SAH was an incredibly traumatic event, it is natural to be afraid. I imagine that fear will be with you for some time to come. I am no expert, but in my humble opinion the trick is to understand and accept that and to consciously apply coping strategies: deep breathing, talk yourself down, reminding yourself of other similar experiences that worked out well.

Stay positive, you are doing amazingly well.

Wem

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As Karen,David and Wem have all said,

You have done so well.

So here is my plan Daff.

Next time you have a coffee morning call it "Make your own coffee Morning" you could buy cakes, shhhh

pretend you made them.

I will come and sing with you, lol David can harmonise with us, in fact lets have a BTG concert and get caterers in

to do food for after party.

Serious Daff don't beat yourself up over it, when shattered have a break, albeit (Like that word) a 10 minute break

or just sing a happy song.

You are doing great, now keep happy xx

Love ya Pal

WinB143 xx xx hmmm coffee anyone ~ joking xx

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All steps forward are positive ones, even if we stumble along the way and boy, did I stumble and kept stumbling for a long time and I often thought that the fear would win ... but it didn't.

I can remember in my first year of recovery taking great comfort from certain quotes and one of those was “Success is not final, failure is not fatal: it is the courage to continue that counts.”

When I first started this site in my early years of recovery, I used to put one of these on the home page each day to spur me on, as I hadn't met many other SAH'ers at that stage to be able to "normalise" what I was experiencing and it was a very lonely time.

Daff and Wem, you're both doing really well. xx

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Daff,

Your annie has been treated and checked since & it is all OK. It takes such a long time to believe in that but you know it really is ok. In time (a long time :frown: ) you will have faith in that and feel calmer about it. Honestly!

I can't comment too much on the shunt as I know that I still freak out with Dylan's but I hope to, one day, feel reassured on that issue too. For us both to learn what is a serious issue & what is normal. We will get there (him probably sooner than me :wink: ) but I am sure the just not feeling right versus feeling like it's serious will come to us both and you too.

I'm picturing the same words of long term shunt patients as we have on BTG from long term SAH survivors- where they were really scared too at first & now have the fear under control with experience?

Both you & Wem have done amazingly well today. Be really proud of yourselves & your achievements just one short year on.....Can you imagine what you both still have to offer in months to come as you recover even further :biggrin: Well done to both of you!

Michelle xx

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Daff,

You have done remarkable already with your recovery, and I agree with the confidence and experiences the more you have the stronger you become. Geez……..a fund raiser- that takes talent!

I have been meaning to make a new thread on therapy. I started it maybe 3-4 months ago and have gone 3 times. I am logical and very well adjusted so they say- I am in harmony most days where I am at now in my life.

With that said I have bumps in the road weekly. I do not usually get to do what I want. Someday I can't get off the couch, someday shooting pains in my head. I do not fear "dying" I fear suffering. So when I go to therapy it always ends with him asking if I NEED to come back or if this even helps (I answer almost all my own questions LOL) but I do need it.

I need the quite office and someone to tell me I am normal for where I am at. One thing is I thought I was becoming very OCD because I check double check triple check and still screw up or leave the burner on etc. or I can only seem to watch NCIS returns or Criminal Minds both run many episodes a day & during the evening. I really have a problem when I turn the channel, I thought I was turning in to “Rainman and Judge Wapner” but therapist told me it is easy on the mind to watch those marathons of same programs and many people with brain injuries do just that to relax. There is no real thinking involved.

SO I feel better that was worth $200 for that piece of advice. This week I told him I am crashed on Wednesdays 1/2 days it just about throws me over the edge and I come home and never get off the couch from noon till bedtime and he said "That's good". I was shocked by that but you know I know my brain and body need that rest but I need someone to validate that for me once in awhile. I need that professional to tell me this IS normal to have some of these feelings. SO I am thinking therapy is a wonderful gift I have allow myself have. I need to be reminded that this is the new normal and it is ok to have certain feelings. I do not panic ( I am the opposite I never cry – I think my cryer is broken!).

AS far as thinking something is going on in the brain- sometimes when I have a headache and my blood pressure gets up there I think I am going to stroke out but I now know I cannot let myself get that out of whack with being upset or anxious etc. It just does not work for me. I tend to believe in my heart what will be will be and I cannot worry about something that has not happened. I will cross that bridge when it or if it comes. Maybe meditation, age, past experiences etc…. have brought me there but I cannot waste time on things I have no control over. I have had much practice with moving forward from struggles and maybe I gain some insight from that? I do not know why I just accept this and am thankful I can walk and talk! I cannot read a book or directions (I would have to quit my job and do that full time in occupational therapy- really). Maybe I am just way too tired to spend the energy worrying?

NOW, saying that I did panic a tad when Sandi went to that meeting recently and the speaker was still recovering 4 years after his mengioma surgery as I had talked myself into that if I have to cross THAT surgery bridge it will be so much, much easier and not like this SAH and Strokes recovery along with fibro and being auto immune! But again I calmed down as to not waste energy on something I cannot control. I am living in the moment and present state of being and really that is ALL my BRAIN can do.

You are doing great and should be so proud of yourself. Sorry to babble but this is how I cope by just not participating in worrying. There are certainly things I wish I could change in my life like workign so darn hard. I should be able to work as a volunteer and make a difference in this world- that is what I wish I could be doing but that is not where I am right now and I accept that what I do at work is important and I am still making a difference. But my recovery suffers from not being able to be on that kinder to myself end of taking it easier.

Best of luck, maryb

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Thank you all. Pickle of a head this morning .:roll:

I am thankful for this special place that I can come to and get these answers and support. Bless you Karen for giving us that, it must have been so lonely before, I'm so grateful you built this haven.

The fact that I actually don't need to list out how I feel, that you guys get it means such a lot. I'm not alone with my fears. It comforts me.

Wem, wow, you did a huge thing with your work visit. Well done. interestingly my doc acknowledged that it was fear of the known, fear of the returning pain that is a huge battle. He is pretty cool.

A make your own BTG coffee morning would be just the ticket Win. Us all sat in different corners, earplugs in, sunglasses on stuffing our faces with cake singing, quietly, ' hey ho silver lining'

Mary, thanks for saving me £200 on finding out why I resort to watching the Waltons when I can do nothing else.:lol:

Michelle. Your lad is an inspiration to me, when I find myself grumbling about my shunt I remember that those much younger than me are dealing with these adult issues often with much better grace and epic courage. Hope he enjoys the race this weekend.

David, your stamina is equal to that of an Olympian with how you battle each day.

Onwards and upwards.

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Daffodil, I can't imagine having the courage to tackle a fundraiser at 1 year. I really admire your determination and bravery.

Go easy on yourself. Our emotions in recovery seem to be magnified by 10 some days. It does get easier though as time goes on - although I remember thinking many times that the feeling of fright and anxiety was never going to go away. It has taken me what seems like a very long time to feel 'solid on the ground' and have confidence again. Self trust is something I've been working on - learning to trust myself and feel self assured again. Thinking 'I will be ok, I can do this'.

When I don't feel well I remind myself that it's temporary. I will feel better after some quiet time and a rest. It's taken alot of time to get here and it's not perfect at all but my fear and anxiety has subsided in a big way. Yoga and meditation - even just deep breathing helps me in a big way.

Hugs and congratulations on your success. Xoxox

Sandi K.

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Hi there

you will gain confidence but take things slowly maybe not such a bit thing like a charity coffee morning maybe just organizing a group of friends for coffee sometimes that can be a challenge itself. & work up to big things....

I get all emotional just going out for the evening.

dont beat yourself up about it hun

take care

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Daff,

I was very fearful even though I had no coil. Maybe because I had no explanation for my SAH. I questioned all the time if it will happen again, that maybe they missed something even though I had all the tests and all the follow-ups. Fear.

What I have found in my meditations is that at heart center is the seat of security. It is here we love and would do anything for loves sake, and not let anything/anyone get in our way. Strength. I meditate here when I feel overwhelmed by fear. It helps and only takes 5min. I had PTSD so my fear was WAY over the top. I've learned that because I lived (I almost died in the ER), I am stronger and more resilient than the 80% who were in my same condition and died. I am blessed, but I had to learn EVERYTHING all over again, including that. It also includes how to be in charge of things again. It is scary. I have yet to perform solo cello because I know the fear would overtake me at this point. Maybe soon though. Only fear holds me back.

~Kris

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Hi Daff,

I understand what it's like to live in fear although for me, it's all happened the opposite way about. After my mum died of sah, I was terrified for almost 9 years that I might have one myself. Every stabbing pain in my head would send me into a panic and I was worried I'd die. Now that I know what sah actually feels like, all those 'pains' I had before seem laughable. For me, having had sah has actually taken a lot of fear away and it's such a relief to have it out of the way.

That said, I do not have a shunt and I can't imagine what that must be like. You have come a long way, congratulations on organising a fund-raising event - that is an enormous achievement!

Dawn x

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