Sorry for drawn out post but wanted to be clear about things
I’m just curious how many (if any) have developed severe anxiety or health anxiety since their diagnosis or since their surgery?
And what did you do?
Curious about all but moreso the irrational fears
I have definitely always had some anxiety but my anxiety has been extremely high from about 12 months after surgery compared to usual and have developed chronic phobias (almost all revolving around health). Mainly (mostly irrational) phobias such as being scared of mri contrast (had a previous reaction) so i have now put off mri follow up for my avm for over a year, developed a phobia where i am too scared to take my blood pressure because i get anxiety over it and then get a very high reading which reinforces the anxiety so i literaly cannot take it anymore, scared of needles where i get so scared my heart rate goes to over 140bpm from fear, scared of veins i find in arms and legs and always examining them and how much they protrude, scared of a prickle in finger or toe that it will get infected or something very bad, always scared I’m going to hemorrhage from the slightest pain in head or vision problem etc. I’ve never been scared of these things^!
Crazy scared of covid to the point i won’t go places or see people at all (even though i had covid which might be the problem too - was always scared of covid and then the first day i let my guard down snd ventured out, i was out for 15 minutes and i got covid)… unlucky i guess but that set the fear in worse
Plus much more
Basically I’ve noticed it almost all relates to blood or blood vessels (this is after surgery to avm)…but definitely all relates to death/severe health outcomes
My sleep is terrible
Yes i have pain and my eyes hurt and head hurts but i always think the worst when so far it’s not. I just can’t see how i went off track so much from being so positive overall so any tips would be highly grateful
I am sorry to hear that your anxiety has got really bad since treatment, but I promise you are not alone. Mine has gone through the roof as well, so I can definitely understand and sympathise.
Tips re anxiety (from my personal experience and what I learnt in therapy) -
Write a worry list once a day - put everything down on the list that you are worried about.
Once you have written the worry list go through and identify if they are practical worries (something you can take action on right this moment), or hypothetical worries (something that either you can’t take action on, or is only a potential thing not a definite thing). In this case a headache which you are worried about would likely be a hypothetical (because you can’t be sure it is a threat), but if it has lasted for a couple of days could become a practical (because you can email your consultant and ask for help).
Once you have divided you list and identified hypothetical vs practical worries - go through and name the type of worry. Are they catastrophic worries (thinking the worst), are they predicting the future worries (thinking something will happen before the event), are they mind reading worries (thinking that someone else believes X about you).
Once you have done all of this - take your hypothetical worries list (keep your practicals so you can deal with them) - scrunch it into a ball and fling it into the recycle bin (I like to yell - “in the trash” to these worries to make me feel better)
Other things you can do to help:
Write a good things list (this can be a list however long you like of good things that have happened today or this week)
Exercise if you can - yoga is great for gentle stretches and there are loads of videos on YouTube you can follow along to
Do a craft - this is from personal experience but I find doing embroidery/cross stitch requires focus in the moment (focusing on what you are doing and what your hands are doing) which helps bring you out of your own head and into the present moment - thereby calming the anxiety
Re blood tests and needles - this is a safety behaviour not a proper coping mechanism but needs must - explain the phobia to a nurse, lay down, put earbuds in and blast music as load as possible and shut your eyes. Ask the nurse not to speak to you until it is over and you are plastered up. This has really helped me cope.
Well, I completely went nuts when I came out from my embolization - it too them a while to figure out what to put me on. My mind would just race with random thoughts - from what I have pieced together, it’s some form of medical PTSD
They put me on a decent dose of Valium - I’m like ok. My anxiety would get so bad, it’d raise my blood pressure.
A month or so later my PCP asked me how I was doing. I asked to be put on Xanax - The Valium seemed too habit forming, I started to notice I’d take it when I didn’t need it.
He put me on Xanax, about 6 months ago he said I needed to start coming off. Apparently this isn’t as easy as it sounds. Without it, I don’t sleep whatsoever. Me & him had a good conversation about it - but, this was right after I left a bad review for his office - they were 2 hours late each appointment & were just rude. The MA called my Pharmacy & had the pharmacy tech tell me to find a new PCP
I switched PCP about 4-6 months ago. Told her my issues & Xanax dependence - she said she’d prescribe me enough till I can get my own - she suggested going to a Psychiatrist(I went to Mexico) - if I go to a Psychiatrist here, I’ll lose my commercial driver’s license
That about covers my anxiety problem. I never used benzodiazepines at all before being put on a long term Rx.
Hi, As soon as I read you caught COVID so quickly I knew 100% you were in Australia lol… I’m in Sydney so I know how bad its really been with the whole COVID thing.
I can say I developed bad anxiety a while after my surgery as I was traumatised from my initial AVM bleed… everytime im alone at home or get a headache I do get a sense of fear as I suffered my AVM bleed while home alone and it was very very scary.
It is normal for most of us to develop anxiety especially after everything we have been through and the whole pandemic thing… I find trying to keep busy and having a hobby and passion for it will really help… do something you enjoy or try some new things, you’ll be surprised.
If you ever want to chat there is an Australian Group here, which really helps… God bless!
@AlwaysCurious Hello Well first off I want to say its perfectly normal once you have had a reaction from contrast to be concerned. You and the rest of us have been through a lot , then freaking COVID hit and of course things went coo coo.
So sorry you got COVID.
So as another has mentioned its called medical PTSD and sadly PTSD no matter what kind it never goes away we can learn tools to deal with it. Sadly there is no dedicated book just to medical PTSD.
I go with family and friends to the dr appts to advocate and take notes - one of my good friends and my mom are both afraid of needles and one of the head neuros of one the depts at Stanford who was told of my friends fear did not warn her that he was pulling out a needle to test her reflexes and she got scared …and started to cry… and then he started to treat her badly and start to talk to her about seeing a Therapist…and I raised my voice and said HEY YOU KNEW SHE WAS AFRAID OF NEEDLES WHY DIDNT YOU WARN HER??? He shut up!
He is really lucky it was me with her and not her huge husband,
Maybe you can ask a friend to go with you for your MRI even though they cant be with you in the MRI room but they can be close by for support, Here in the states they will give a valium ahead of time to take if we have issues with tight spaces.
Another drug that has helped me with sleep is low dose naltrexone and it also helps with ibs and pain. It also helps the immune system. And I have yet to get COVID and I am not vaccinated because I had 5 blood clots in my brain and my doctors dont want to risk me getting more clots and going into another coma.
One Dr I have been following since COVID is Dr JOHN P.A. IOANNIDIS who is supposed to be the world best dr of Epidemiology and Meta Researcher. He is at Stanford.
Check out page 7 of this pub of his https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9111437/pdf/ECI-52-0.pdf and earlier he said that by 2023 things would be safer to travel . He also said why things were so bad in Italy was because they have an older medical team, and older population which was never talked about.
We are in a unique club and its hard for non brain issue people to relate to our medical stuff esp because most of look fine. I always get that well you fine …I say great but I feel like doo doo…with a smile. I mean I am grateful to be alive and that I got my movement back and ability to talk and swear . But would love a few days of no pain etc.
We are here for you and sending you hugs from California
Angela
There’s a few i already do and a few I’ll give a try
Exercise is the one that helps me the most so i do it daily
Yes i feel like I’m going to die or have something pop with exercise because of heart and blood vessels e.t.c but after the first few minutes of getting over those thoughts, it’s pure bliss!
I’m glad you got some meds sorted and hope you’re doing ok
Funny i never really connected the dots…
I have had a form of complex PTSD my entire adult life from (private) trauma but I’m thinking because i already had ptsd and anxiety, medical ptsd may have pushed me more over the edge making everything i already had, even worse
I fully understand your shoes where no one seems to understand what you’re going through. It’s so frustrating how people don’t understand it.
I don’t bother anymore. Whenever i told someone what had happened because they asked, they would basically act as if it was a routine dental filling or something. I just don’t understand why they don’t understand…
I’m glad you have your son there for support buddy
Yeah i was saying to Mike that because i had PTSD and anxiety from past severe trauma experiences, i never clicked the dots that medical ptsd would be likely and make things worse
Helps me to know these things and learn
I was also just saying to Richard, they are hassling me for my MRI contrast scan as it’s overdue over a year but I’m scared. I actually have no idea how pn earth i had angiograms done while awake when now i can’t even go for a stupid scan lol. It’s so silly. I might try what you said and take a support person with me
And yeah it’s so frustrating that people think it’s like a broken bone. If they can’t see it, it must not exist. I just don’t even bother telling anyone even when they ask these days
I think I have forgotten about your PTSD. It honestly not a thing I’ve been anywhere near. If having someone with you to outside of the MRI room would help, take someone. If there are smaller things you need to do, maybe see if taking a buddy to one of those helps (because I hope it would and therefore you could be more comfortable you can try the same for the MRI).
If you need a remote buddy, heck, just tell me when you’re going in and I might be able to stay free while you’re going in. That’d be possible, too.
I’m quite sure the illogicality of PTSD is normal. I think the same things show through in depression and panic attacks: it is part of the “how the hell do I do this?” that you’d think you could reason with yourself to get through but it is (for some reason) illogically driven. The only thing I can say there is to find out from someone professional how this works but I’m sure you’re doing that sort of thing already if other PTSD has been a longer battle for you.
Seriously, I’m happy to do the remote buddy thing if it would help. A real, touchable, huggable, punchable buddy would be better, though if you’ve got one.
I mentioned it in the context of that we kinda just let it rip here so any slight chance of catching COVID is generally at high odds considering the overwhelming numbers we’ve had.
I’m glad you feel some comfort though in the words & experience I have shared… always remember you are not alone and that there is always someone out there much much worse… God bless!
I don’t know if anyone will read this here lol but it may help someone… i hope
I’ve been dealing with a lot of extra stress lately (mainly health - like most here I’m sure)
One thing that I’ve found that helps with the anxiety massively is not putting uncomfortable things off. Just do them.
The way i do it most likely isn’t the way for most but i say to myself “if i die, i die, nothing i can do about it… i just have to do it”
Then do it without hesitation
Those words do sound terrible i agree but it’s what works for me personally anyway. It’s basically me facing the worst outcome possible knowing that it most likely won’t come to that… it works for me
I realised through the help of someone else, that even though my anxiety may be sky high/debilitating… the more times i put something off, the worse the anxiety is in relation to that. Put it off 5 times and it’s basically impossible to do because I’ve made the anxiety so bad
So the last month or so I’ve been doing the things I’m scared of and just saying it will be hard but it’s only going to be harder next time if i don’t do it now so just do it
Of course if you have a genuine reason like you had no sleep and cannot function, you might want to put it off but if you’re making “excuses” to get out of being scared, you “may” be like me and making things worse each time
I have faced about 10 major scary (potentially deadly) things in the last month or so and only put one off (and yes it became harder but i got it done)
Hi Mike and Dural, (I’m in AZ) I think medical/complex PTSD is a real big issue for a lot of us, me included. It’s still the wild West and not really recognized in the US. But it makes sense to me that if I have a huge stressful trauma it will have a multi-dimensional, maybe debilitating effect.
Regardless of what it’s called we know it’s real. So let’s continue to talk about it. Best wishes, Greg
All of this sounds like very practical advice: that putting it off only makes it even worse for you is a great insight.
I think it is fantastic to hear you being in an [almost remarkably] better place, despite or because, you’ve had pretty dreadful other health news or because of this new insight. Honestly, you sound in a much better place really. It’s very good.
buddy would be better, though if you’ve got one.