Seeking advice about painful intermittent headache over left eye

I have a large left parietal AVM diagnosed after a bleed when I was 6 years old. I am now 53. I have be counseled against treatment. My symptoms over the years have been very minimal – some right-side numbness and some trouble using my right hand. But over the past few weeks, I have been having headaches – over my left eye, sharp pain, lasting less than 5 minutes. Last night I was woken up by one. this is new for me. Are AVM headaches treated with a particular pain killer? If I go in, I have a feeling I will be asked to have an angiogram (my last one was 15 years ago) and I really don’t want to do that again.

Welcome! I’m sure everyone will give you what works for them but often I read of people using Tylenol / paracetamol. One of the key things is not NSAIDs like ibuprofen if there is any danger of you having a bleed because it will just bleed and bleed.


Exactly as what Richard has mentioned

But, I’d consider going in - it’s totally up to you & definitely get it the point of not wanting to go

Just watch yourself ya kno. . . We know our bodies best

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My pains behind my left eye happens when bad weather aproches for about 30 sec… or in a car going up and down hill… I was told if mine goes over 1 min to contact the doctors… its not the same as you and mine is small to yours but holding my knoes closed with my fingers and blowing air into it closed puts presure behind my eyes and subsides the pain… hey one never know it might work for you

John Paul

If you’ve got unusual stuff going on, go in. I’d think that the first scan for “is there anything going on” would be an MRI. Then, if there is anything visible on the MRI, an angiogram to look in that area is sensible. But I’d think a more general scan is the first step.

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Unusual is loose term

I almost went in about a week or so back - again, I started having tired spells out of nowhere. Luckily work has been slow - so I just been taking it easy, the other day I felt tired out of nowhere, sat down - next thing I know I wake up a few hours later

Had all of my blood work pulled by my PCP a week ago - on paper, I am as healthy as a horse

No pains or anything else way odd - so, I have no idea

Hello again so I just heard from the Dr . I will need one dose of radiation for the 2 small veins I have left for my AVM.
I’m so freaked out by the mesh mask I have to wear I think that’s bothering me more than the radiation!!!
Does anyone have any advice on how to get through it and also has anyone had one treatment of radiation and if so any side effects. The Dr told me with the small amount I’m getting I shouldn’t have any ???

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Hello. Smiles I send your way…

I take it you had those frozen/heated mesh masks placed on your face to fit and provent you from moving as they put radiation to you… that is the best way to have it done for you…

I was required to have a halo bolted 4 ways into my skull leaving very small dents that are shrinking but will alway be there… its all scary at first but over time it get easyer…

In my case it was me scared of the unknown more then what I did know… your story and what you going through is as important as the rest of us…

I have had only one treatment and my recovery from the halo was a couple bandages wrapped around my head… everyone is different but in my case and some other I speak too get small pains in the area of the AVM as it shrinks and puts pressure on other parts… they told me if it last more then a min contact doctor for more information.

Sounds like your heading down the right path… chin up you got this…

John Paul

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I would expect they will offer you a slight sedative to get through it if necessary. It is important to talk to the team about how you feel so they understand and look after you properly.

Since you are using the mesh mask, is that planned as cyber knife rather than gamma knife (which I think uses a head frame)? The head frame sounds quite uncomfortable, so it may be that following a cyber knife approach they already are trying to help you!

I’m with the doctors on the radiation exposure thing: if they are confident you’ve got a tiny bit to zap and you won’t be in the radiation long enough to cause any side effects, just believe them.

You’ll be fine. Ask about a sedative and tell them how concerned you are.

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That’s y, the invented Valium - seriously, it’s the only way I’ve gotten through all my stuff. From the MRI’s to being awake during my last angiogram. Y’all better sedate me, cause I really don’t want y’all to see me completely lose it.

That’s just me though

Regarding the sharp pain. I have a sharp pain over my right eye. It comes like an electrical shock. I’m having some as I’m writing this comment. The neurosurgeon prescribed Carbamazepine, for nerve pain. I had an AVM near the brain stem / cerebellum, that was treated 4 years ago with gamma knife. My issue was my AVM affected the sheathing of my 5th cranial nerve, causing a type of trigeminal neuralgia. When you speak with your physician, ask if this could be part of your sharp pain. During the gamma knife procedure, I had a square aluminum frame fitted to my head to immobilize it during the procedure. It was not fun, but not that bad. To deal with the stress of it, I used “yoga breathing” where I would breath in for a count of 4-5, then breath out the same. I watched my heart pulse rate on the monitor drop as a result. Breathing was something that I could control, when there were other things I could not. You might try that with the mesh.

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I wouldn’t take any chances my AVM was diagnosed after I had a brain bleed which left me unable to move or talk for about five min.I had been having severe right pain over and behind my right eye for a few days prior.I had many signs prior to this that I ignored for years main one being sudden painful headaches that caused loss of vision for short periods of time 1-3 minutes long enough that if I was not able to grab and hold on to something or be able to sit down I was going to the ground regardless.I know angiograms aren’t fun I probably had 15 of them over a 11-12 year period,but they weren’t near as scary as not being able to move or speak for that five min period when I had an aneurism burst.Do yourself and your family a favor and get it checked out.Best of luck,my prayers are with you!


I’ve had one treatment.
When I had my treatment they put a cage on my head. It’s open at the front so no claustrophobia. They numbed my head where it was screwed into my head.
They first did an MRI. They did an angiogram on everyone bar me. I have musculoskeletal disabilities and have a lot of chronic pain in my back. As my AVM is in the front right quarter of my brain and is quite large, they said they could proceed without one. They could see sufficiently with just the MRI. I was in a lot of pain from the MRI and I still had the stereotactic radiation treatment to go through.
They clamped my head into the bed of the tunnel. I had forty minutes of radiation. Once done they took the cage off my head . They warned me my head would feel abnormal as the cage straightens up the head and once off it’ll go back to it’s normal position. It did feel a bit weird.
Later on that evening I had a really bad attack of deja vû. The nurse said it was quite normal for this to happen after treatment. As I also have bipolar and sometimes deja vû happens with that I ask for some Lorrazapam. Which I was given.
During the following week I had quite bad diarrhoea. I have IBS and it gets upset by so much stuff. Pretty sure it was the stereotactic radiation treatment though. I also felt quite tired.
Since having the treatment. It’s been five years now (Covid messed things up … should have been seen earlier). I’ve had pain in the area of the AVM and quite bad deja vû … I did get seen by my consultant. He said the pain was impossible to be from the AVM as they cause no pain. He said it was probably from the Giant Cell Arteritis that I also have. But the rheumatologist who deals with the Giant Cell Arteritis says It’s the AVM. An impasse!
I’ve since had another MRI. I’m having a telephone appointment with my consultant for the AVM mid March as there’s some of the AVM he’s concerned about. They’re looking at doing an angiogram. Not looking forward to that. My back never improves!
If you’ve any questions I’m happy to answer you. It’s not a bad procedure. At my age (60 this year) it’s safer to have the AVM dealt with. As we age tte walls of veins and arteries thin and any pressure can cause them to burst.

Can I say that is complete tosh. It takes no time at all to read around here and find plenty of people with brain AVMs who have regular and/or debilitating headaches of all kinds. There’s no way that brain AVMs can’t cause headaches. Just b*llocks.



I couldn’t agree more! I had no inkling that I had anything in my head. Until I had an MRI to see why I had temple pain (turns out I also have Giant Cell Arteritis) .
Once I was diagnosed with an AVM and had the stereotactic radiation treatment I then got pain in the area of the AVM and it’s a different pain to the pain I get in my temples from the Giant Cell Arteritis (GCA). My rheumatologist who deals with the GCA says the pain in the top of my head, on the right side where I have the AVM isn’t from the GCA. I get so sick of the consultant at Sheffield who deals with my AVM… he will not consider the slightest possibility that the AVM is causing huge amounts of pain at times. Plus the deja vû, which can hit repeatedly, is really disorientating, to say the least! That’s a sign of epilepsy. He does absolutely nothing about it!
Can’t wait ti my phone call next month with him! I’ve had enough! I’ll be polite , but I’m not putting up with his outdated knowledge any longer. Maybe he should retire… he’d looks to be about sixty(ish)!

My experience of reading posts on here is that neurosurgeons regularly will not make a connection between headaches and AVMs. I think there are two reasons for this:

.1. When patients are asking “Will this treatment (embolisation / craniotomy / radiotherapy) fix my headaches?”

No. The answer is always no. No neurosurgeon will warrant that intervention will fix headaches. The main reason for this is that the brain is so complex / picky / idiosyncratic that nobody in their right mind would warrant that an operation will fix headaches. There’s just as much chance of an operation making things worse as making things better. That’s how it seems to me, anyway.

.2. There does seem to be a consistent view by the neurosurgery community that headaches are not associated with AVMs. Lots of people get told this yet a decent percentage of brain AVM patients here get migraines and other types of headaches. So it is definitely tosh. However, there may be reasons why your doctor is explicitly suggesting it is unlikely that your AVM is driving your headaches. It’s worth asking for their reasoning. It may not be your AVM per se. It may be damage that it or the intervention has done but I think that’s splitting hairs.

The trouble is that what a neurosurgeon can do to fix headaches is nothing unless they can see something that is amiss. So in reality he or she is probably looking for anomalies in there that they could do something about. If there’s nothing visible that they could “fix” then I’m kind of with them that there’s nothing surgically that they can do.

Others here do have pain specialists who look after them in that regard and it may be you’ll get further with a discussion not with a neurosurgeon or an interventional radiologist but with a neurologist and/or someone who specialises in pain.

So don’t take it out on the neurosurgeon or IR but maybe find out about pain management / specialists. All of this is me surmising, based on reading plenty of posts here. Maybe have a look yourself for posts referencing migraines or headaches or pain. Be careful about responding to threads that date back a long way (pre 2017) because people move on.

Hope this helps,



Thanks for your input. Could do with all the help I can get atm.
I recently had a MRI with contrast. The results state… “…. there is a good response to radiosurgery but there appears to me some enhancement at the side of nidus which needs further evaluation by cerebral angiography.”
So there’s something not quite right. Might explain the pain too! Plus the deja vû! When I had a bad cough after quitting smoking, the pain that came on that morning was so bad it was ranking as high as late stage labour pain. I told him that and he refused to have an iota of it. I asked him did he think I was imagining it! He just kept blaming it on the GCA.
I have morphine for my musculoskeletal disabilities. That doesn’t deal with it. I take paracetamol too. Combine has no effect! I can not take anymore pain meds. I’ll not be able to function. I have Amitriptyline too. It all helps with my pain, except the AVM area pain. It can make me feel quite nauseous at times.
I feel like I’ve been ignored and treated like I’m a nuisance! Am going through a lot atm with other problems. Between what might be sarcomas in my arm and oral cancer. I really don’t need that consultant being a prat!

Hi again yes the dr told me they would give me something I definitely need it . The mesh mask is just a lot for me . And it would be approximately 40 min procedure and I’m done I hope .

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Yes Richard, you can say that and I totally agree with you (although my language would probably be a little more colourful that that :stuck_out_tongue_closed_eyes: )

NikNak, here’s a bit of the theory behind why some medicos believe this. The brain itself has no pain receptors, it processes pain messages from elsewhere in the body, but the brain cannot ‘feel’ pain itself. Over the outside of the brain is three protective layers known as the meninges, this area contains nerves, vascular networks and it can and does feel pain. I too have been told ‘…It’s not your brain…’ my head is POUNDING, like my eyeballs are going to explode from my skull and they say ‘…it’s not your brain’ it sure as hell feels like it’s my brain to me.

Now, I’ve required a few neurosurgeries and I have found that if there are ongoing pain issues post surgery, some medicos will try to deflect any responsibility ie ‘Ohh, but you had headaches before surgery…’ Yes, but not like these. OR ‘You have a history of (insert any other ailment), that could be the cause…’ OR, the most direct and arrogant answer I received ‘It’s nothing I’ve done, it must just be YOU’. :face_with_symbols_over_mouth: GRRRR

ANY changes in the brain can have an effect and changes in blood flow (Such as an AVM) are a primary cause/effect. But as DickD says it seems a rather common theory in the ‘neurosurgery community that headaches are not associated with AVMs’.
I think I’ll again just refer to DickD “…Just b*llocks.”

Merl from the Modsupport Team


I’ve argued the toss with him and he’s adamant. I really don’t understand how this neurologist can do his job and insist on something that’s not true and that he should know!
What irritates me more is because I have an autoimmune disorder… Giant Cell Arteritis, which causes temple pain… like no pain I’ve ever known (and he knows this), he uses it to cover up for the pain at the top of my head and my forehead on the right. They’re two totally different pains and now I’m on Prednisolone for the GCA I no longer get the temple pain! Which he also knows. I got so pssd off last time I told him to contact my rheumatologist who also agrees it’s the AVM! Hah!