AVM Survivors Network

Can’t sleep

The emotional side can be very difficult as accepting the new me has been difficult and I keep fighting for my old self and I probably will never stop trying… for the most part I’ve accepted the emotional side of it and have control over it but I do have my days from time to time.

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Are you taking tylenol meanwhile? It may be simple stuff but it does help. I understand it may not touch it but if it does, or takes the edge off it may be better than anything opioid based. Good luck!

We are here as much as you need, ok?


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I’m taking ibuprofen 600 mg a few times a day.
The clanging and hissing in’s other noises in my head are crazy. The other night I put my head on my husbands shoulder and he could hear the pops. Wtf

The back of my head popped for almost 2 years; thankfully it finally healed and stopped…very odd sensation.

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If I’m honest, I don’t think you should do ibuprofen after an operation. It’s a blood thinner. Use tylenol instead unless you’ve discussed with with the doctor.

Very best wishes,



Pam, After surgery I had severe pain & doc gave me pain (sugar pills) that did absolutely nothing for me. I tried them all & advil was the only one that worked. It’s been 10 years now, I have eventually stop advil now able to use bayer aspirin. None of it is good, we just have to learn to live with it. Try to grateful you are alive, meditation also helps.

It’s only been two weeks. Be patient. I had similar issues after my craniotomy: couldn’t walk for over a month, constantly dizzy, and bizarre ocean-like sounds which eventually stopped after 3-4 weeks. And sleep…huh! Didn’t get sleep like a normal person for a couple of months.

We had one of the most invasive and risky surgeries that can be performed. With it comes very annoying post surgery effects. Most of which are unique to each of us. But you WILL recover. But recovery is slow and long. And all of us here have endured it. You will too.

Be patient. You’ll be fine eventually, which will be sooner than you think. Reach out. We’re here to help.



Ask your neurosurgeon to refer you to a pain management specialist.

Hi Pam, I’m sorry to hear this. I had gamma knife last year July so I don’t have any experience on a craniotomy. I would also agree that 2 weeks after surgery is still early days. I guess lots of rest is the best right now. Take it easy and speak with your consultant if you are worried. X

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What is a consultant? I’m a 6 hour drive from the neurosurgeon and have no real relationship with that team. They are not helpful by phone. I’m so grateful for this support online.

Hi Pam, here in the UK a consultant is a senior doctor. The main person who is in charge of your care and the main doctor who performed the surgical procedure. Sorry to hear that you don’t have a relationship with your team. Can your team refer you to someone else? They should be able to listen to you and help provide support.

When I had gamma knife last year I couldn’t get in contact with my team which was frustrating. Since I’m a diabetes nurse and work in the NHS myself my colleagues were able to help me as they knew my consultant. My point is they should be able to refer you to someone and help.

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Thanks for responding. The team knows nothing about the area I live. I’m a clinical social worker and am surprised they have no ability to find support for me in my area. I still don’t have a neurologist where I live. My brain isn’t working well enough for me to do this stuff.

Hi, I’m sorry to hear that. Have you got any friends and family that can help and do the calling around? You can’t do this on your own. I know what it’s like when your brain is not 100%. It’s not the time to be taking on this stress. I hope you get the support you require. Take care. X

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My husband has been my rock but he’s a retired construction worker and not very patient with idiots. Some healthcare professionals are difficult to deal with.

I’ve seen it time and again on this sight. People feeling abandoned after their surgery. I certainly felt that way. I was not referred to a neurologist (still have not seen one, fifteen months after surgery). I was two hours from the hospital, and I also felt like I had no where to turn. In hindsight I wish I had asked my primary care doctor for a referral to a neurologist, even if it was just for the headaches(seems like a very reasonable request). I finally asked for one a few months ago and the only decent guy in town has a huge wait. My appointment isn’t until the middle of August.
I’m still dizzy and lightheaded. I did a bunch of research online and found the guy I wanted to go to. Really the medical community has not been there to help.
Seems to me your best options are:
1- family doc referral to a neurologist. You may be the only avm your doctor sees in their entire career. He/she will not likely know how to deal with your issues.
Or 2- does the neurosurgeon have a nurse practitioner? In my case she was very knowledgeable and reachable by phone. Even if she doesn’t know the people in your area she should be able to give you a way forward.
Good luck, it’s so isolating and frightening.
I remember my friends asking- “what did the doctor say about that”. And my response “what doctor”

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What doctor is right. I’ve already asked my PCP. It’s like looking into the darkness.

Yeah, it’s not you only just stubbed your toe, or something😷

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My husband keeps telling me to stop saying “major” brain surgery. He says brain surgery in itself is major.

I guess he has a point. It did make me laugh though.
When I complain about what I can’t do , my husband just looks at me and says “Brain Surgery”, like I am just expecting too much.
He recently said I should stop saying “brain damage”, but that’s just the reality of the situation.


Susan, @DickD, and everyone else who commented. Here’s what I’ve been told…

Ibuprofen (Motrin) will attack inflation better than Tylenol - but extended long term usage of Motrin can be damaging to kidneys and to something else (but my AVM brain can’t recall what the other thing is.). The same thing - but different problems. My Doc recommended over the counter Naproxen. I take it every 12 hours no matter what and supposedly it is doing better than Motrin would without the risk of organ damage…

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