Hi everyone. Have been having a hard time recovering emotionally from an avm removal in March via craniotomy. Everything seemed ok, I thought I was recovering well until I started getting focal seizures in May. Not many, but about once/twice per month. Have been tiering up to 200mg/day of Lamictal. I started a new job in June, and it’s been more difficult to adjust to than I thought it would be.
Other than work, I stay home and watch tv; I have little desire to connect with others. Do other people stuggle with this? My hope is that as time goes on I’ll feel better, but for right now it’s a daily struggle. How did you cope? Has anyone taken anti-depressant/anxiety meds? I’m also hoping the Lamictal will help w the depression symptoms.
Wow. I had a bleed in December then a craniotomy with removal of the avm in March. I can’t even imagine working. That’s pretty impressive.
I’ve also struggled with depression and anxiety. It’s been a really difficult process. Although I’m improving pretty well I’m missing how I used to be and scared for what the future holds.
I started going to a therapist for my emotional issues and it’s been very helpful. I think it’s pretty “normal” to struggle with this emotionally. What we have been through is very intense.
I hope you find something that works for you
I think this thing takes a lot longer than any of us believe at first. It could be you are trying to resume “normal life” a bit too quick and you need to remember to look after yourself as first and foremost. Having a job or something to keep you busy is a good thing because sitting around thinking too much is not good, especially if they are less than positive thoughts. But there is a balance.
There are definitely people here who’ve had as big an experience as you and it is tough. I’m much better off but it has definitely taken me longer than I thought and I need to remind myself to be sensible.
Depending on where your AVM was, and the parts of your brain it was affecting, it could have done a bit of damage that is affecting your emotions and motivation. The “journey” (over-used term) is a long one and you’ve got to keep at it. Keep believing in yourself and keep up the fight. You can get there but it could take a loooong time.
@slowcatharsis
You have been through a great deal. I think its fantastic you are working and started a new job.
I dont have anxiety or depression. Just a great deal of pain but mostly from my stroke that happened pre avm I do have lots of occipital pain from my angiograms and embolisms.
I am not able to work because of my massive stroke but I am a volunteer commissioner on my local aging commission. I also do some patient advocating -
I try to stay busy-
There are therapist that specialize in pain that might be able to help you with coping tools.
It is hard to explain to people what it is like to have an AVM and to go through everything.
Its very normal to have anxiety and depression.
I wish neuros would make it part of post op to talk to people to see if they needed someone to talk to - It is such a traumatic experience and they dont think about the emotional aspect about it.
Hugs
Angela
I have been struggling, too. After an initially “miraculous” recovery, I returned to work, and full responsibilities in my household. I feel like it caught up with me, and I got overwhelmed. I have encountered two camps of medical professionals–the “You are lucky to be alive” (so be glad and move on) group, and the “I can’t believe everything you have been through, of course you are struggling”(and others need to recognize this). It is confusing and hard. Mine rupture was right frontal lobe. I sometimes feel like a different person, and struggle with attention and concentration, planning, time management, etc. in ways I NEVER did before. I try everyday to reconcile the glad to be alive, and the wow, I feel kind of sorry for myself. I have found antidepressant medication to be helpful. It has taken me from “I can’t…” to “This is hard, but I can…”
I think as @DickD said it’s a difficult realisation that this healing process takes longer than we initially expect it would. I would say it is a great achievement that you have started work so soon considering having such a major surgery. It will take time to fully adjust but things will get better and less difficult.
I think your lack of desire to connect with people could well be a symptom of depression. I went on antidepressants and went for cognitive behavioural therapy which really helped me cope - I think a combination of both could help you get though this time adjusting after your operation.
Before my AVM was partially treated, I had a roller coaster ride with depression. I struggled to cope with the symptoms and also how my life had changed aswell as how others around me reacted. It was really difficult but I got through it and I no longer have depression - you’ll get through this too!
When we are going through alot emotionally and physically and feel vulnerable it is a natural response to close ourselves off. But you need to really try to reach out to the ones that give you comfort and make you feel happy, to treat yourself with much needed TLC. I’m not saying you have to do that daily, but when you can. These things will help you get through this despite feeling out of your comfort zone or the urge to avoid it.
Ofcourse also keep reaching out to us whenever you need emotional support, a rant ect. You’re not alone
I am on 100mg Lamotrigine at the moment to prevent my occipital/partial seizures. With this anti-convulsant I have no side effects thankfully.
Thanks everyone. It does feel a little better knowing others have gone through/are going through something similar. I’m trying to take it one day at a time, and just keep pushing through. I think I’m going to reach out to my neuro team about additional medication options(anti-depressants).
@slowcatharsis Make sure you are getting enough sleep as well. if not dont be afraid to ask for some sleep aid. Per my pain neuro sleep is the most important for our recovery.
Keeping a schedule for sleep seems to help as well. She also told me starting my day with protein. Since all this started I have seemed to lost my appetite but know I need to eat. I do feel better when eating and drinking plenty of water .
Angela
