How do you manage to calm your anxiety?

Symptoms & Treatment
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For some time now I have been struggling to find out exactly what my deformity is.
I also have some family problems related to an abusive and idiotic father who made me waste months of treatment.
The point is that fear, frustration and panic are in the air…and something I have never been good at was controlling my emotions
I cry very easily, I get angry very easily and I get very consumed.
I am writing this because last night I thought it was the end…
Last night I got really angry and unfortunately I think I had a Tia?

I felt pins and needles in my face and hands, blurred vision and later I felt like cold water was running through my whole body…
I went outside, took a breath of air, drank water, prayed and later the symptoms calmed down…
I know you are not doctors and the purpose of this group is not to diagnose each other…
But do you think what happened last night heralds the catastrophic moment?..
Thank you!
I hope everyone is well!!

Amareea

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Hey @Amareea ,
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends.
I too have hit that point before where “…that fear, frustration and panic…” can be overwhelming and those physical effects (pins’n’needles, vision, etc) do make us question ourselves. But I think you did the right thing, you changed your environment (went outside), rehydrated (drunk water) and mellowed out.

Over the years I’ve had a few ‘WTH’ moments. With the first post surgery incident, I panicked, thought I was have a heart attack too and wifey shot me off to the nearest hospital in a heartbeat, only for them to do scans and send me home again. Every ache, every pain and I was questioning “Is this it…?” over time I have learnt what is ‘normal’ (as if any of it could be called ‘normal’) and what was a sign of ‘ACT NOW!!!’. I also saw my GP who sent me to a cardiologist and found I have an irregular heartbeat too, so no wonder I was getting some weird symptoms.

I wouldn’t say ‘a catastrophic moment’, you’re still here to talk about it. Maybe more a 'Heads-up" moment, an ‘Early warning’ of sorts if you like. Speak to your Dr, have scans/tests, get some answers. Look, it could all come back as something as simple as a ‘Panic Attack’, but if it’s something of concern, the sooner you know, the sooner you can act. If you are worried, then it’s time to act, get the answers you seek. Speak to your Dr.

Hope it helps
Merl from the Modsupport Team

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Hello Merl,

Thank you for takeing the time to write this to me.

My situation is very sad actually….i m trying to advocate for myself

Hopefully i will get treated before something happend to me..

Also about Cardiology, i did all the tests and everything it s fine with the heart….brain is the problem….

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Hey @Amareea ,
When it comes to rare conditions, understanding from family/friends can often be a challenge. (As if it’s not challenging enough for us already) Often others don’t understand, I’ve tried to explain my ‘brain’ situation to some, tried to educate and it’s like you can see their eyes glaze over. They honestly have no clue just how bad ‘BAD’ can actually be. Prior to me receiving a confirmed diagnosis I was made out to be psychotic because “We can’t find anything wrong. It can’t be THAT bad… We think it’s all in your head…”, little did I know just how real that last statement would become when they, later, found something growing in my head.

You know your body better than anybody and don’t ever doubt it. The brain is unlike any other organ in the body, it’s our body’s CPU and is unique to you. Small, little changes in the brain can have some HUGE, MASSIVE impacts. I am yet to hear of 2 patients having the exact same AVM or the exact same outcome. Others may have an opinion, they always do, but this is about you, not them. Even with medicos, some make out they know all about it. Often they don’t. I obtain the medico’s opinions, then investigate. I get 2nd opinions from external medicos. I hunt online and at the local medical university for information. I want to know, “What are my options?” by keeping myself informed I can then make an informed decision.

I’ve had 6 neurosurgeries to try and manage it all, endured years of dealing with more medicos than I can count on my fingers (and toes) and more opinions than I care to count at all. It was less than 12mths ago it was suggested I have yet further neurosurgery, which I declined. And that was my choice. Could things be better? Definitely. But then could things be worse? And again the answer is: Definitely. My recoveries from each operation have been harder and harder each leaving me a little worse. I’m not prepared to risk more surgery for ‘worse’. That’s my choice.

Merl from the Modsupport Team

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Thank you so much for sharing your experience with me, Merl.
I totally agree with you and I won’t stop until I can heal…
I admit it…I’m so scared I’m going to lose the fight…that sometimes I feel like giving up and leaving it at that because it seems so hard to be victorious…I think part of the problem is that I’ve read too many stories of other people who have marked and affected me so badly…
I’ve always been a very empathetic person and since this situation I feel like my heart is broken into pieces
I used to love the world a. believe that there is beauty in it
Until I realized how cruel everything it is…
The only motivation left is when I see how many people have succeeded
And I keep hoping that I will succeed too

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Hey @Amareea ,
These things are sent to challenge us. It’s how we deal with them that makes us the people we are. I could so very easily have fallen in a heap and given up when I finally received a diagnosis. But what for? Giving up doesn’t get me anywhere. I had plans and this thing wasn’t going to beat me. I had been telling the medicos for many, many years that something was wrong, only to be written off and minimised each time. It wasn’t until I had a major incident that things were investigated fully, then they came out with the line “Ohh, look what we found…” like it was all something new. I wanted to scream.
I was SO VERY frustrated/angry/demoralized. I was at the end of my studies and received my qualification. I’d just landed me a new role, which I had trained years to obtain and next I’m being told I need a craniotomy. To be honest, I thought my life was over. But as it turned out, it wasn’t so much over as taken a sharp right hand turn. I took on a role teaching people with disabilities.

This gave me an education no textbook could offer. I’ve seen the ‘Good’, the ‘bad’ and the ‘Ugly’ (No, I mean the REALLY Ugly) of disability. And as selfish as it may sound, I can look at myself and think “Things could be better, but at least I’m not in their position” and I know I so easily could be. It gives me a bit of a ‘reality check’. Yes, the world can be cruel. I have to deal with and manage symptoms every day but I can still walk, talk and make my own choices. Some people can’t. I’ve got to be thankful that I still can.

Merl

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My second AVM was treated a few months ago, but it will be another 2-3 years before I will know for certain if it is gone, so there’s always that worry in the back of my mind (literally!) of a second bleed. I’ve certainly lost more than a few nights of sleep panicking about headaches that come on suddenly!

‘Is this it? Is it happening again?’

’Do I need to get to hospital? Should I call someone?’

’It’s 3am- maybe I should give it a few more hours and see how it goes? But if this is real I’m wasting precious minutes?’

I’ve replayed the memories of my brain haemorrhage over and over in my mind, trying to remember exactly how it felt. It’s almost like an old VHS tape that has been rewound too many times- details have gone fuzzy, images blurred, artifacts have crept in. I’m not sure I remember it reliably anymore.

But- I do remember the instant, instinctive feeling I had that something was very badly wrong. When my haemorrhage started I just knew it wasn’t another migraine. I have to believe that if it were to happen to me again, I would know it straight away.

Regardless, it isn’t easy to get back to sleep after such a moment of shock and fear. I try and strike a balance between pragmatism and over-worrying. If a sharp headache comes on at night I will get up slowly, turn on the lights and do a few simple eyesight/speech/balance checks on myself. If nothing is amiss then I will try and hold myself to waiting 30 minutes before trying to return to sleep.

Like everything in life, it’s a balance. I can’t turn up at the hospital asking for a scan every time I get a headache, but equally I can’t ignore anything that might be the onset of another potentially life-threatening bleed. We do, sadly, have to accept that there is a limit to what we can control but I have been able to make peace with that by giving myself a little leeway- it’s healthy and logical to worry, but it’s unhealthy to panic. I want to be cautious but not paranoid!

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Thank you🙏🏻 You really are right
But it s very hard….

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As I’m often saying to others:
If anybody, anywhere ever tells you this is easy or simple to deal with, they have NEVER been in this situation themselves, so how would they know…?? They don’t. I’ve had people say things like “My friend “John” had one of them and he’s OK…” like the next line’s going to be “…so what’s your problem…”. I’ve had medicos try to minimise my symptoms “…well, that just can’t be happening…” but it is. I tried to ignore it all and just push on through, bad idea, BAD, BAD idea, something went POP and found myself back on the neurosurgeon’s table

The bottom line here is that you have to manage for YOU. Listen to your own body. It will tell you when it’s had enough. You just have to listen. I didn’t. I convinced myself I was building stamina by pushing my limits. The reality was I did myself more harm than good. Don’t do that.

Merl

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Hi amareea,

I’m not sure of how much help I can be except to tell you about my experience and situation. It’s about 20 years now since I had my first anxiety attack. Just out of the blue, no idea why. Went to trauma and was sedated. I still get anxiety attacks. I have meds for it. Just one pill for when it occurs. The second it comes on , I take the tablet. I don’t await, because I know it gets worse for me. Sometimes the meds don’t help, and I supplement it with applying a pure lavender gel on my chest. Lavender gel/oil, is the ONLY time I believe in non - western medication, aka, pills.

I’ve been getting these attacks long before I was diagnosed with the AVM. I’ve had a rupture, but living with the AVM. It doesn’t bother me much, I just “forget” I have it, but my constant, daily pain is of course a reminder. But I just do what I need to help ease the pain. The pain doesn’t go away. If I’m lucky, my meds will help take a bit of the edge off, but otherwise, I have to ride out the pain.

I use to be very temperamental, but taught myself to be calmer. All that went out the door after my kids were born (changes in hormones lol). But I’m getting back there, simply because I know when something affects me emotionally, over a period of time especially, I develop micro bleeds or very debilitating pain. I made the choice not to let anyone get under my skin (still working on it), because I say to myself that no one (except my kids) is worth going through that headache. So I’ve developed somewhat of a blase attitude. I don’t even bother explaining myself to anyone anymore nor providing explanations, reasons, etc. if I don’t take a call or visit, or simply just not engage. There’s a long rant here I posted a couple months ago which will give you more insight into why I’ve chosen this way.

The way I see it, if I can manage my pain and go about my day, that’s “normal” for me. And that means I’m good (irrespective of pain), and my kids will be good too. That’s all that matters to me, but I’ve been very vocal recently that no one is worth me going through worse headaches than my daily ones. And I don’t feel badly about it. If I don’t look out for myself, and by extension my kids, no one will. And it ticks me off more because those around me just don’t get that me laid up in bed for days takes time away from my kids and what they need from me. So if the people around me can’t think about the kids first, there’s no place for them.

I’m not sure if you’re open to talking to a psychologist or seeing a doc about medication when you feel like this, but I’ve found it helps me. Even speaking to a psychologist.

When it comes to the AVM, I’ve learned to listen to my body. Best case scenario is that there’s no rupture again, but I’d rather err on the side of caution and be thought of as “blowing things out of proportion” than take the risk. Believe me, I’ve been made to feel that way if I go in for a scan and it’s clear. In those instances, I’m grateful the scan is clear and now I don’t even mention if I go in for a check up.

I would say listen to your body and do what’s best for you, because if no one else will, what then? It’s a lonely journey, this AVM. Most, if not all of us feel it. But know you’re not alone and we’re here anytime you need. The people on this forum have been the biggest support I’ve received and I’m thankful everyday for it.

I hope you feel better soon and always here if you need an ear.

Best wishes,

Suraya

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