Sufferer Newly Diagnosed And Finding It Hard

[Emzie29]

Hi,

I'm Emma. I've never been on any kind of chat forum before but I hoped that it might help me somehow. I've had a hard few years suffering from what I was told was Severe Anxiety and Depression, but was re-diagnosed by a therapist three weeks ago with Post Traumatic Stress Disorder.

I'm 27 and I've had a heart condition and a pacemaker all my life. I've had so many operations and pacemaker changes I've lost count. However, 4 years ago I started receiving electric shocks from a fracture in my pacemaker lead. I didn't know the cause of it at the time only that it was a sickening and very distressing thing to experience, and the shocks gradually got stronger as the months went by. When I complained about it to my cardiologists they checked over my pacemaker and said everything was fine and left me to it. It continued to the point where it was no longer a few times a day but constant. I kept going back to my cardiologist and kept being told that everything was fine and I was just anxious. It got so bad that when I went back again insisting that there was still something wrong they brought in the head of cardiology, somebody who had treated me from being a baby. He told me there was nothing wrong with my pacemaker and it was "all in my head".

By this time I was an absolute mess of a person. I had lost all of my confidence and I genuinely thought that I was losing my mind. I had trouble coping day to day which caused me to drop out of my final year of university and caused issues in my job and relationship.

Finally, months later after going back to the cardiologist again in distress they brought in an external technician who checked me over. It was only upon increasing the voltage of my pacemaker that they were able to witness me experience a massive shock causing me to jump up in the bed. The regular cardiologist overseeing the testing actually laughed.

From this they finally figured that there was a fracture in my lead and I was booked in for surgery. Two days before the surgery I attended my pre-op where I was sat down and told that it had been cancelled. I was devastated. By this time I was falling apart. I had to wait another few weeks before being booked back on, and during all that time I was still receiving shocks and being driven completely mad.

I finally had the surgery in January 2013 but it didn't go well. I was in theatre for 4 hours longer than expected as they had difficulty removing the pacemaker wire since it had been in there for over 20 years. There was also a tip of a lead left inside my heart that they weren't able to get out as I started to lose a lot of blood and things were a bit touch and go. When I came around from the anaesthetic the nurses were frantically telling me not to move as I looked around at the clock and saw how long it had been. That moment when I realised how long it had been and that something bad had happened is etched into my brain.

Afterwards the recovery was very difficult as I had a lot of tissue damage from recurring operations. I lost a great deal of weight and started having severe breathing problems and major bouts of depression. I was tested for asthma, lung infections and further heart problems with no diagnosis. Eventually after a year or so I was diagnosed with anxiety and put straight onto medication. This didn't seem to help and have been struggling day to day ever since. I finally plucked up the courage to go to a private therapist a month ago after being on the NHS waiting list since January this year, and it was then that I was diagnosed.

I've been plagued by nightmares, unpredictable extreme highs and lows, breathing difficulties, social anxiety, tics and a crippling lack of confidence. It's not something I've been able to understand and for some reason since being re-diagnosed with PTSD I've been feeling so much worse.

I feel like it's now taking over my life. I'm still on medication to battle it but at the moment it doesn't seem to be helping at all, I feel like I'm going crazy. I thought that being able to explain it would help but now I'm such a mess and I can't see how it's going to get any better. I feel so lonely and scared of myself.

What do I do?

Emma

 

[Bloomy]

I am just so deeply sorry to hear what youve been through. Cant imagine how hard this must have been for you. Ptsd is just a diagnose. Have you heard about ptsd growth? That means we can work our way through it. Not all hope is lost.
I understand when you say you feel alone and scared. So do I. But here on this forum there is support to be found.
Wish you all the best and blessed healing.

 

[Emzie29]

I am just so deeply sorry to hear what youve been through. Cant imagine how hard this must have been for...

Can't thank you enough for this reply. I've never heard of PTSD growth. I knew very little about PTSD before I was diagnosed and all I thought when I was was that I didn't deserve to have it. Other people go through so much worse.

I think I've just reached the end of my tether, I feel like I don't know myself anymore and I hate the mess of a person that I seem to have become.

 

[Silver.]

Welcome to the forums, that must have been such a scary time in your life. There are some great resources out there to help us on the path to healing, take care of yourself x

 

[Emzie29]

Welcome to the forums, that must have been such a scary time in your life. There are some great resourc...

Thank you for your support. I know I've got a lot to learn about what's available to support PTSD sufferers.

 

[SeekingAfrica]

I understand this is scary. 8 years ago, I remember I once had a panic attack and I can only now understand that it was a panic attack. I didn't even know that, I'm not sure I'd even heard of PTSD. It's scary and it's big.

It's also reassuring though. Knowing what the full problem is, is a huge part of the solution. And this forum is a trully supportive place, I can vouch for that. Dealing with anxiety, depression, abuse, PTSD etc. I've been in many forums. Some of them are unresponsive and I have to wait for weeks to barely get a response. Some are extremely negative and critical and even in my worst bouts of negativity I feel need to oppose and try to help, which is at the end fruitless.

But here I have found a lot of support and it is trully helpful. Learning to work through emotions, talk through issues rather than sweep them aside, learning to manage anxiety and panic attacks and ground yourself rather than want to get over it...is a huge process. But steps are building up over over another like a snowball.

Eventually, you have more skills to handle this, you are stronger, better. Sometimes it gets worse, and then better again, it's part of the process. You can do this! And what you are describing, having those issues from a child until now, I can see how that can create problems and stress. But you're here- that's a step. Keep working on it! Knowing is a good thing, I promise.

 

[Ronin]

Hi Emma, welcome. :)

It's okay to not 'know yourself', though. I know it's very distressing, but it's also a chance to grow. Just because you have learned something new about how your body functions that better explains parts of your health doesn't mean you are losing it, or that you are going to stay in this state of confusion forever.

More acute symptomatics following diagnosis is also rather common, and probably will even out as you have more chances to educate yourself and get appropriate treatment for your issues.

 

[Emzie29]

I understand this is scary. 8 years ago, I remember I once had a panic attack and I can only now...

Thank you @SeekingAfrica. I know that it should be a good thing to finally put a name to it and to hopefully be able to start battling it but at the moment it's all feeling overwhelming and my symptoms are just taking over. I've never spoken to friends or family about anything which is why I was so apprehensive about speaking to people on here, I wasn't sure what to expect.

It's nice to know that there's somebody out there willing to listen :)

 

[Emzie29]

Hi Emma, welcome. :)

It's okay to not 'know yourself', though. I know it's very distressing, but it's als...

Thanks @Ronin. What you've described is spot on. Since being diagnosed I've just gone a complete downward spiral. I was doing so well but now I seem to be just struggling with everything. I've been telling myself that it will pass but it's just really difficult to manage at the moment.

 

[Ronin]

I was doing so well but now I seem to be just struggling with everything.

Would you be helped by thinking of it as a big reorganization?

Not saying reorganizations aren't messy :rolleyes: But there's definitely coming out of them on another end.

& Baby steps, one thing a time. Pick something that you're able to tackle with where you are right now, the rest will come to you as you get through issues one by one.

 

[Bloomy]

@Emzie29 appriciate aand grateful that my comment made sense and ment somethin for you :)

Recommend you to learn about fysiologcal consequence and impact on your body and your organism. Then you more easily whats going on inside you.
All you gone through has caused your organic system to get out of balance. Ptsd is know by flight or fight which incl pverflow of alarm hormones and cortisol to invade the body. Which again makes heart beat faster, msucles tense up and so forth. Or freeze and get paralysed. And all implications.

Knowing this and knowing the heart is a muscles and thoughts are feelings that creates the body system to react one way or another you can as @Ronin said take step by step to resettle and grow and heal and get life worth living. Thats whats keeping me going. And personally I am actually better in many ways then I used to be.

I think a summon up of the above goes to learn to accept what became ours. Accpet what we can not change anyway.
And find a way to bloom from that.

I cheer for us all to make this crooked windy and also sometimes nice road.

 

[EveHarrington]

:hug: