Hi everyone, it’s been a while since I’ve posted. I hope everyone is managing to stay safe during this unprecedented time.
I’m coming up to my 2 year anniversary since having gamma knife surgery (July 2018) for my left occipital AVM. Since having gamma knife (GK) the road to recovery has felt rocky. I feel low in mood most days and feel like I’ve had a complete personality change. I don’t feel like my usual happy & bubbly self. I feel angry all the time and tearful and I feel like I’m under performing at work since having GK. I have general dark thoughts and sometimes I feel like ending my life. I’ve been to the GP and they have referred me to talking therapies. I’ve also been doing mindfulness most days.
I just want some general advice from others who may have experienced something similar. Is it normal to feel this way? Or do I need to seek further help? I’m open to all advice and support.
Hey @chaning, I want to tell you first, “YES!” I’ve been brain injured for 20 years, first from an AVM bleed in 2000, then another in 2010. Now I’m legally blind from damage to the occipital lobe. I’ve switched antiseizure medication for that same mood you describe. But take heart! It can get better. I recommend talking with your treatment team about a different antiseizure medication. Keppra has a history in some of causing depression. There are many other antiseizure meds out there and your doc can try different ones out with you. Don’t wait though. As a survivor of 20 years, I can tell you, if something changes, let the doc know asap. Blessings as you continue!
I had a craniotomy two years ago and it’s been a long tough haul. I’ve been down and pretty angry. It’s such a big change in my life. I hate being unsteady and vulnerable.
I have found a good therapist and that has helped a lot. I highly recommend finding someone to help you see things from a different perspective.
I also was on an antidepressant for a while, which helped.
It’s really hard, but it’s doable
Carol
Hi @Chan Channing I think its very normal to feel low and angry after you have been diagnosed with an AVM or any other illness. I think what helped me was mourning my old self - accepting my new self and striving to get back to my old self. My health drama started out a bit different where I had a massive rare stroke due to Blood clots in my brain CVST -went into a coma was paralyzed and then got a DAVF for bonus points as I was regaining my ability to speak and walk again. I was left with centralized pain syndrome and unable to work a job in the financial sector which I loved and was successful. At one point I could not even balance a simple check book and I had to deal in millions of dollars at my job. I had to face the reality that I could no longer work, accept I had memory,pain and sleep issues. I now volunteer with my local aging commission and with other charities I think for me I just had to let some stuff go and learn to say no to things which was hard but necessary. I needed to put my own health as top priority. I think its also hard because people cant see our AVMS and we look fine but may feel like crap. I know my dad for the last 9 years asks each time he sees me if my head hurts - mainly cause I rub it without even thinking about it and no matter how many times I tell him my head never stops hurting and he just doesnt seem to get it, I know it was esp hard for him to see me in a coma and have brain damage - when the dr told us that I did have brain damage my dad said " Thats ok she has plenty and can loose some…" I was thinking inside SHUT UP I need all my brain power. I am the fixer the family but had to let others take the wheel - We are here for you
Hugs
Angela
I had gamma knife a year ago following my bleed and diagnosis of a large right occipital AVM. I do also feel down sometimes and get feelings of anger, irritability and mainly I feel mental overload more easily, and can feel quite stressed when minor things go wrong. I attribute this mainly to my bleed which left me cognitively intact and with only minor visual field deficit, but I do feel ‘brain injured’ to varying degrees and every day is different. I haven’t had such a low mood as you, but I do think we have been through an awful lot with diagnosis, bleed, treatments etc, and I strongly advise that you talk to somebody. It’s not ok to have suicidal thoughts and keep it to yourself. It may help to talk to someone outside your family and friends. Either way, like any serious injury your brain may take some time to heal and just because it isn’t totally better today doesn’t mean that progress isn’t happening. In a year you may feel a lot better. Hang in there!
Best wishes
Jonny
Hi there!
What I’m reading, besides this board, yes it’s normal. Before my AVM diagnoses, I have never had anxiety or depression. Post craniotomy for my AVM, I have both depression and a lot of Health Anxiety. I found this board is very helpful to see that I’m not alone and talking with a therapist is also helpful
Hi everyone, thank you all for the lovely words of encouragement and advice. It is greatly appreciated.
I spoke to a good friend last weekend about how I’ve been feeling and that was very helpful. It does feel like people don’t know about AVMs because generally we may ‘look normal’ but the brain is a delicate organ. Sometimes it feels like people think you’ve had gamma knife so it’s gone just like that but it’s not that simple.
I’ve been a lot more kind to myself and taking each day one step at a time. I’ll chase up my referral to counselling to find out what has happened.
Once again everyone thank you so much for all advice & support.
Thanks for checking in. I’m getting there slowly. In relation to my mood I still have some very up and down days but I’m not having suicidal thoughts which is a huge positive. I still haven’t heard back from the counselling services yet even after chasing. I have an app on my phone called Headspace which is very helpful. I’m just taking each day as it comes and trying to keep busy.
I’ll keep you posted on my progress. Thanks for asking and checking in. It’s much appreciated.
Great to hear that you are doing ok. I know the up and down feeling well. I have periods when I hardly think about my AVM and then others when I feel scared and worried. It’s easy to think in terms of binary outcomes - it bleeds and I die - whereas my experience thankfully has been relatively mild, and anyone who has a bleed may be only lightly affected. It’s a lottery like crossing a busy street, only here you have less control. That’s what I struggle with, having little control. I drink little and stay healthy and active, and the main thing is to try to avoid stress. All of my neuro’s have said this. Whatever it takes to keep you chilled, is what you need. I’ve taken up yoga, painting, and try to enjoy each day as it comes. Not always successfully and I sometimes slide back into stressing about minor issues which is really dumb! I see you are in London, I live in Kent and work in London, albeit mostly from home right now. I had my treatment at Sheffield. So how was your last scan? Any change yet??
Cheers
Jonny
Thanks for your lovely message. The up and down periods are hard. The last few weeks have been tough in relation to my mood. I get some days when I can’t be bothered to do anything and some days where I don’t want to be here. It’s hard because it feels like my work colleagues forget this and just think I should be ‘over it’ as I had gamma knife surgery in July 2018!
I’ve been keeping busy with baking, listening to music or binge watching box sets on Amazon. I had my treatment at Queen’s square.
I am due a scan in September to review progress but not sure whether it will be then obviously due to COVID-19 and the delay in routine procedures. Not sure what changes there are. I’ll just have to wait and see.
