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Hughes Syndrome APS Forum

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help!!

Greenmil3 profile image
11 Replies

I’m getting more and more impatient and angry / moody is this the effects of my cerebral APS of me just turning into a grumpy old man. I need everything done immediately and my way. So frustrated and fed up with myself.

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Greenmil3 profile image
Greenmil3
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11 Replies
HollyHeski profile image
HollyHeskiAdministrator

Hi, you've had such a battle, now this to contend with! What ever the cause, the frustration of it all is enough to make anyone grumpy.

The only thing I can compare to is the symptoms of a head injury, which is basically what you are experiencing?

Talk to your GP, having someone to listen and understand may help in return cope with the anger etc, also there are drugs that can help lift the mood and help cope with the changes your brain is going thru.

I really wish you well.

Greenmil3 profile image
Greenmil3 in reply toHollyHeski

Holly the private clinical physiologists near to me are all full I was seeing a wonderful lady last year on our wonderful nhs but she did 6 months with me instead of 6 weeks but had to bow out before she got in trouble. I can’t find anyone to compare but she can’t see me as a private patient . Already take quiet a few mins altering drugs such as pregabalin and Amytryptaline but maybe need to up from 10 pills a night including my warfarin etc but hard to see anyone who fully understands! The physc I saw was attached to Guys hospital Haematology so had experience with APS patients so at least didn’t have to explain all about that.

Sorry for the long story but as you know it helps a lot to sometimes just write it all down. Thanks for always being there.

HollyHeski profile image
HollyHeskiAdministrator in reply toGreenmil3

Yes it helps to write things down, it's also important to talk things thru,

I'm sorry your not getting the continued support you need - keep trying.

Also try the charity Headway, they have local support teams and activities, aswell as support line covered by well trained nurses.

Hopefully others here will support you with some other ideas.

KellyInTexas profile image
KellyInTexasAdministrator

I can’t say what it’s from, but the fact that you care so much about it, are worried about it , want to make a change to shift it…

this tells me you are incredibly self aware, and definitely NOT turning into a, “grumpy old man!”

Here is the united states the classic meme is the Grumpy old guy running out of his house yelling , “ You kids get off my lawn!” at the neighborhood kids who might have inadvertently stepped onto his front lawn to retrieve a ball , etc… - or just walking home from school….

So if your not running out of your house yelling at the neighborhood children for walking on your grass, your probably not a grumpy old man!

I’d talk to your doctor about it. Sounds to me - like your a problem solver! You need the right people to help you.

Star13 profile image
Star13

you mention that it helps to sometimes write it down, have you thought about keeping a journal?

Sher78 profile image
Sher78

Personally, this was very much the affect mine had too. I got easily frustrated, angry etc and if things weren't done the way I specifically wanted them done, I would get very agitated. My co-ordination had completely gone off kilter (more than usual) and I was also having hallucinations (both audio & visual). I was referred to a Psychiatrist and from there they discovered that my lupus had also gone cerebral (many scans etc). I was put on antidepressants and antipsychotics but I think the thing that helped more was talking to someone and understanding that there was a reason I seemed to have this 'personality change'. Once I started being kinder to myself, forgiving myself for being a moody bitch and actually explaining to loved ones etc that I knew I was being a complete cow but I couldn't help it, things gradually improved (also, the medication MAY have helped). A few little things I used to do, as others have suggested, try keeping a diary as to how you feel. Write down any rants, anything that annoys you, basically ANYTHING! Get it out of your head and onto paper. Talk to people and be honest (it is nothing to be ashamed of). I also used to count in my head before answering/responding to something if I could feel I was getting frustrated/annoyed. Try to explain to people calmly why you want things done a certain way etc. You just need people to understand that this is an effect of the condition, this isn't you. It is a lot to deal with and cope with so make sure you talk.

Greenmil3 profile image
Greenmil3 in reply toSher78

Sher

thanks so much I was so much better when I was seeing my clinical Psychologist but I am trying to find a good psychologist or psychiatrist to help but not having much luck Im hoping MIND will have some suggestions. Its hardly a shock to me as I have frontal lobe and brain stem involvement.

Sher78 profile image
Sher78

Not a problem. Maybe an idea to look on YouTube for calming mindfulness stuff. I have always scoffed at anything like that but I have found some of them quite useful in helping me to relax or just take a bit of time to chill. Good luck sir.

MaryF profile image
MaryFAdministrator

Hi, do confide in a trusted friend or ask your GP's opinion or both, being ill can make you feel impatient and you have been very unwell, and the brain can take a long time to get better. Perhaps the Clin Psych at Guys would see you again, or even do telephone appointments with your or come up with a solution for you, as clearly you need some support. MaryF

Greenmil3 profile image
Greenmil3 in reply toMaryF

mary the brain damage is permanent and was caused by minor strokes prior and during diagnosis so it’s dealing with the after effects that’s getting more difficult as it appears maybe having more minor strokes (not TIA’s)

MaryF profile image
MaryFAdministrator in reply toGreenmil3

Yes, I think you definitely need more help, can you get in touch with your main consultant? This way you might get more urgent investigations? You could always write/email their PA to be passed on to the right person. I do understand about your damage, I am also recovering from brain damage and not all of mine will go away either. MaryF

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