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I get scared and then my brain has a field day


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So I potter along most of the time , slower than the old me, a little frustrated that I can't do what I do but tempered with the gratefulness that I am still here. I like others found you could fall off a cliff post SAH with regards to support but have been able to get some great help from Headway and my GP , counselling from my company and because of my hydrocephalus have access to some great staff at my hospital who will always listen. I feel very lucky and have come such a long way since last march. Add onto that the meditation I do, the pacing I am learning and I feel I am doing ok.

Thing is that I think the brain always has the upper hand and I got taught that lesson again sharply this week. I wasn't going to write this but figure it might help me get rid of the horrible feelings a bit.

I thought I had been pacing things pretty well but I think all the emotion of dealing with my mum and dad's health issues, a slight increase in hours at work and just general mum stuff, well you get the picture, maybe I wasn't doing as well as I thought I was.

The upshot was That earlier in week my husband felt he needed to dial for an ambulance because I became very very unbalanced, disorientated very quickly and began to struggle with words after feeling off colour for a few days. Everyone was thinking a blocked shunt but I'm pleased to report I'm ok. So I'm back home , a little sheepish even though they all told me I did the right thing but feeling battered emotionally( and bruised) for the A&E experience which was just awful :shock: but pleased there's nothing worse going on.

Thing is in my rational head I knew there was major nothing going on , I genuinely didn't think I was having a bleed nor that my shunt wasn't working but but the very physical and real symptoms persuaded family and medics otherwise and scared me witless. I can see that we needed to take action and I'm pleased of course that I got help , but I hate , hate , hate those feelings that run away when the physical symptoms take over. I also hate it's scared everyone around me so much. Kids not happy :roll:

Anxiety? Maybe, no one is that sure. I am going to try some CBT to see if that helps after talking with GP and I'm due for consultant check up next week so we will check out stuff then too. it Could just be a nasty virus that is taking its toll on my still recovering brain as I felt very very hot in my head.

So not sure what to gain by sharing this, I know you marvellous lot will reassure me which means a lot but does anyone else have moments that their brain just won't respond to any of the calming logical steps that you take to talk your worries down, mine listens mostly but this week it was like ' no messages can be taken at this time'....

Edited by Daffodil
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Daff, it's okay to be scared ... I was scared witless for many years, not that I would have admitted it back then. I don't think that there are many of us that don't get another spell or two back into A & E and nothing has been found. I've been there.

It sounds as though you've totally gone into overload ... or meltdown ... you're doing too much and you're going to have to off load some of it where you can.

I'm just a phone call away Daff, if you ever need to talk.

Sending huge hugs and remember that you're never alone with this. xx

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Hi Daff

I think it is your brain saying to you...overload !! Sometimes it takes you by surprise because you think you have been pacing and coping ok.

Sounds like you have had a lot to cope with recently with your parents, extra work hours and Mum stuff. Not surprised that your family wanted you checked out and that a panic set in. You did the right thing to get checked out, you cant take chances with your health.

Anxiety is a horrible thing and it can just take over, it still happens to me now sometimes and i cant control it.

It may well be a virus making you feel so unwell, but also I think its your body telling you to rest up.

I hope you can slow down and have some me time bless you, don't be so hard on yourself and take care lovely lady xx

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Hi Daffs,

You are sensible, so do not feel down Pal xx

I went to A & E because my eye went bloodshot, family was worried, etc etc , I am waster but my mind was put at ease and feeling "oh I am okay phew !" cannot be priced after SAH xx

So be well and rest and all will be well, now lets sing a happy song.

Love

Win alias shewhodoesn'tmakesense xx xx

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Daff, I think most on here will be able to relate to this post.

My theory is that as we become physically stronger we expect our brains to move at the same pace as our bodies. For the most part they give it a **** good try, but like a finely tuned set of balancing scales, if we add one more thing into the mix, then we are hit with overload.

It isn't always imnmediately obvious what causes the overload, again my theory is that it is usually the cumulative effect over a period of time. When it happens to me if I look back there were subtle signs that I either didn't recognise or I chose to ignore.

This whole journey is almost like going through the teenage years again (without the fun!). We think we have life worked out, only to find through bitter experience that we got it wrong, not sure how much sense that makes?? Other than the fact that I feel I am learning some valuable lessons as I meander along this path, but I don't always take heed of these lessons.

When I crash I lose the use of my legs and turn into a jibbering wreck. My last major episode saw me crying on the shoulder of my male boss at work and also my GP (that resulted in the failed attempts to get a neuro phsyc referral). The whole thing left me feeling extremely embarrassed, anxious and depressed.

My theory (again) is that we suffer from pathological fatigue, that is so diffcult for us to understand let alone explain and during a 'crash' that fatigue feeds anxiety, depression and stress.

You are so good at pacing, I am sure I can learn lots from you. As others have said don't be too hard on yourself, this phase will pass and you will come out of the other side a little stronger than when you went in. I also believe our brains plateau and need to take a rest for a while, Kris may have something when she says a period of 'pain' is a sign that the brain is repairing itself.

Take heart you are doing really well, rest up on your plateau and enjoy the view. The summit can wait a little longer to be conquered.

Take care,

Wem

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When I have a lot going on I get kind of like this, but for me being as you say Unbalanced, disorientated, struggling with words for me usually means de-hidration. Your body's saying slow down.

Don't feel sheepish you did do the right thing defo, & I’m so glad that you are ok.

Those feelings that run riot are just normal I think we all (whether we’ve had a SAH or not) have them.

You have to put aside hateing scareing everyone & think of yourself know that’s not easy but it will just make you feel worse..

I love that ‘no messages can be taken at this time’ because that was exactly ME when my Dad was in hospital with Leukaemia I knew there was no hope, I had all the symptons you describe & the whole month he was in it was like my brain was ‘out to lunch 24/7’

Try slowing down a bit and be kind to yourself.

take care

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Daff you have some wonderful replies here I don't think I can add much more, except to say I have been back twice to A&E and first time they discovered I had mild hydrocephalus and they kept me in for a week, second it was nothing and like you I felt so bad about that.

I definitely think it sounds like too much emotional overload, I find it really hard to cope with the emotional stuff and if there's too much going on all at the same time I just can't handle it anymore. And my brain lets me know big time.

I think its important to establish just what you are capable of, know your limits that kind of thing. I know exactly what can push me over the edge now and I frequently have to take a step back. I also try to tackle just one thing at a time...not easy when you have a family though.

Sorry to hear about your parents and I hope you are beginning to feel a lot better now.

Your consultant should be able to put your mind at rest.

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Daff, I hope you are feeling better now? I've not experienced those kinds of symptoms, but I did end up in A&E for 8.5 hours a month after I left hospital as I had an ocular migraine. We had been told to get anything unusual checked out and as the GP was a locum, he sent us to A&E. They wanted John Radcliffe to look at my scan and discharge me rather than taking responsibility themselves. It was a long and embarrassing day, by the time I had the scan the migraine was long gone. It's best to get checked though and it's very good news that it's not your shunt playing up x

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Hi Daff! I am really glad you started this thread!

Great responses here and I can't add anything other than I've experienced the "anxiety" aspects as well. I've had a few bouts with the emergency room too. Had the same feelings you described - feeling badly for what your family goes through, guilt, anger, and FEAR.

I'm almost to my 4 year mark and still have bouts of anxiety/panic. I am on medication for this and it really helps, as does switching my thoughts (cbt). Before I was on the medication, I was unable to switch my thoughts. I tried very hard to do that but I just didn't have control (another difficult issue). Anyway, at this point, I am soooo much better than I was last year, and the year before that. It does eventually get easier.

As the others said, different situations such as dehydration, brain overload, fatigue, can and do play a part in triggering the anxiety - at least for me.

I think you're brave to talk about it and hope others will add to the thread.

What a great bunch of people here, that we can all help one another!!!

Hugs to you, sweetie

Carolyn

Edited by penny
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I have read this thread a few times and the comments are always so well put like they always are. I have nothing to add as even though I was told I had anxiety I just do not think I do. How is that:lol:?? Maybe still in the denial state of all of this. I have anxiety from everyday life, money etc.. but I do not have panic attacks or go off and worry about it too much. But I think with the NASAH we do not have as much to concern ourselves with other than the headaches & fatigue as it would be really rare to have another bleed. So once that was said I was good with that and took that worry off my plate. I did however have a nerve face pain attack about 3 weeks ago and laying down made my pain so much worse I was considering possibly going to the hospital.

I am reading a book called "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)" IN this book it has such helpful tools to control chronic pain and daily stresses. It was almost everything my neuropsychologist told me to do when she went over my results of my cognitive testing.

I am not by anyway saying that fibro and SAH are compared but the life style is similar where you have to adjust your sails many times during a day. It is a good coping tool. Someday hopefully in our lifetime we will have a "SAH Recovery Manual". We will probably have to write it ourselves. :lol:

I was amazed at how much is the same such as "triggers, weather and all that jazz". It tells you coping strategies and even has chapters on head pain and trigger points for those areas AND what we may of done to cause pain in that area. It is pretty enlightening. I really like the chapter on pacing and having to write down what you need to do in a day for as simple as that sounds I still cannot get dinner on autopilot. If I do not write down my 3 or 4 things to do it will not get done. So as simple as this always sounds I am amazed when I read a book and it breaks it all down for me.

The head pain chapter really has intrigued me as they talk about simple things like holding a phone with your head and shoulder how it can cause pain in a certain location. It was talking about if you had a problem in your brainstem how this could affect it. I think reading and comprehending this book someday will help with my overall health and other may check it out at the library and see if there are any helpful hints for you.

So anyway Daff I am sorry you hit a slick spot in the road but know we all do and it is ok to come and talk about it. I find I have to find a solution to my problem.. when my brain won's turn off I literally say "Shut up!".. I quite smoking this way. When my mind would go crazy with wanting a cigarette I would tell it to shut up or later I could or after I do this or that. But I would put off that noise that was driving me crazy.

Good Luck Darling!

maryb

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I'd like to add that the only symptoms that others can experience are physical or verbal. The other stuff we deal with inside our brains and minds goes unnoticed. So we have all this craziness that we deal with everyday that no one else is privy to, and yet it shapes how we move in the world. But, when a symptom is an outward one, then everyone else notices and freaks. If they could notice ALL of the symptoms, they wouldn't freak as much over the physical changes.

That being said, we should always consult a professional, if our loved ones think we might need to. They may be wrong, but it is better to be sure.

An aside:

When my brain thinks I've overdone things even if my mind doesn't, I talk in idioms, get dizzy, spill things if I try and walk at the same time, cry at anything especially things that I don't care to cry about, tell really bad jokes with elusive punch lines (crickets don't even sing for me...complete silence), and I keep wondering and wondering and wondering about my life and my actual role in it.

~Kris

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