Thank you I will try to be more patient and let my body heal
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Hi there. Yes I get this too. It happens any time I move my head quickly and is probably related to change in pressure. For a few seconds I feel very disorientated and/or dizzy until it rights itself again.
Lulu
Hi Lulu thank you it’s reassuring to know I’m not the only one having this condition
As long as it isn’t doing any damage and is simply a change in pressure then I am ok with that and will just get up more slowly in future
Thanks again hope you are doing well
Hello there!
I had my craniotomy for a ruptured cerebellar AVM 28 years ago, and still have to be careful when changing positions. After sitting at the dinner table (or sitting anywhere for awhile), I must rise out of the chair slowly and hold on to the chair in order to steady myself, before walking. I also will feel VERY dizzy if I forget, and bend over to brush my hair forward, then straighten up. Agh!!! I will get this feeling if I forget, and look under my bed, turning my head.
I have to remind myself of what we used to instruct our patients. (I’m an R.N.). When getting out of bed, do so slowly, swinging your legs over the edge. Then rest a bit before standing up. People often feel lightheaded from postural hypotension.
I just have to keep all this in mind or I FEEL IT!
After all this time, it’s kind of nice knowing that others share these feelings!
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Yes I agree it’s helpful to know you’re not alone and thanks for the advice I will definitely take more time especially getting out of bed and standing up after sitting down
Hope you are well
Paul
Hi Paulofcfc,
I’m only 10 months out of my craniotomy for my Davf. I experience what Lifeis good said. I have to be careful changing positions or moving too quickly. I finished my physical therapy but my neuro said I have to go back. So, I’m thinking it’s going to be a long process to be back to whatever my new normal is.
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Hi Puff
I expect these things take a long while to rebalance themselves as we’ve been living with our set up since birth and then someone changes the wiring and the body takes time to re adjust
Like you I will just get up slowly now and this helps and we will learn to live with it
As you say we will have to find our new normal
Good luck and all the best
Paul
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Thanks Paul and all the best to you too.
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@Paulofcfc welcome to the group so glad you found it
I have a DAVF mine is on the left occipital area .
I was having really bad head rushes and even passing out prior to my embolism, my DAVF was retrograde, making my blood flow go backwards.
They knew this from my MRA . I am wondering if this is your cause.
I go to Stanford where they have very good machines. My gf used to run the Dept and told me to always ask and if it’s not at least a Tesla 3 not to bother .
Hugs
Angela
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Thanks Angela so much for your reply
That is so interesting as no one has ever mentioned about the direction of the flow of the blood
I did have headrushes which started a few months before my embolisation so you may well be right
Just a quick question if I may …do you still have the headrushes since your treatment?
Hope you’re doing well
Paul
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The retrograde thing is where the arterial pressure blood is gushing into a vein. Given the pressure, it doesn’t just flow “downhill” back to the heart but can spill into the vein with such intensity that it flows a bit both ways. You may have had that going on pre-op (I’m convinced I did) but if you’re all glued up, should be ok now but as you said to @Puff the replumbing takes a fair bit of getting used to after it being wrong for perhaps a long time.
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Thank you 
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@Paulofcfc Hello Yes I do have a constant pain in my head where my fistula is located on my left side- kinda llike someone is pulling my hair very hard and laterly just in the last week which is weird I am havubg some new symptoms where it feels like a bone bruised pain.
Prior to my DAVF I had a rare type of stroke (CVST) due to blood clots in my brain and I was in a coma
I had 5 blood clots in my brain and was paralyzed and couldnt talk. I was 43 and had to learn to do walk etc - then about 6 months later they found the DAVF- People with CVST type of strokes are more prone to DAVFs - Since my stroke was rare I see the head of stroke at Stanford and I see the head of neuro radiology who also turned out to be friends with my friend who ran the mris for Stanford -then since also my cvst stroke also was causing so much pain my stroke dr sent me to see the head of the pain dept
My pain neuo said that if I didnt try something for the pain that I risked feeling like this for the rest of my life cause then our brains think its normal. This was before the opiate criisis. I cant take them anyway I seem to be allergic to most of them and dont seem to have opiate receptors so she was pushing Botox and occipital shots. Which do help alot - but then I got an allergy to liodocaine so we cant do the occipital shots anymore 
- But I do go every 3 months for Botox for my head jaw and traos I dont do my neck cause I have a weak neck -
we were also doing ketamine infusions prior to covid I was also diagnosed with Centralized Pain Syndrome since my stroke killed my thalamus
Do you have a pain neuro you are seeing?
Hugs
Angela
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Hi Angela
thank you for your reply - sorry it’s taken me a few days to respond just been having a couple of down days
I’m based in the UK and looking at the message boards you have a lot more information and treatment available in the US than we do here
Sounds like you have really been through a lot so am hoping you are doing ok
After my embolisation and follow up angio for my DAVF my neuro surgeon told me to go and live my life there was no mention of speaking to a pain neuro in fact I’m not sure we have that service in England
I have seen a couple of doctors here and they just say there’s a lot of psychological trauma and will probably take some months/years to come to terms with it all
So I’m now getting up very slowly and if my head spins or i get a head rush I just take a few moments to recover and compose myself
Not great but it’s the best advice I’ve been given do far
you take care
Paul
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@Paulofcfc Hello No worries about the delay I myself fell off my bed some how and landed on my head of course my DAVF side and my bad stroke side shoulder so I have had a few down days myself.
I think I am just fortunate to live close to Stanford and that weirdly I had a super rare stroke so the head of stroke was interested in my case and well I found out everyone was and even talks are given about my brain, even my sisters Stanford ortho who puts people back together who have been hit by trucks has seen my brain scans. So my stroke dr was the one who made sure I saw his student who is the head of pain -
I am very lucky to have her and she literally has tried everything on me to try to help she can without hurting my DAVF some things that impact the Vagus nerve for some reason cant be used on us.
My sister and my mom see her as well.
I am sure you must have a neuro of pain some where in the UK. I used to talk via email to a lady in UK who would advocate the heck for her dad there but since lost touch with her cause I cant get into my yahoo email since they sold the company. I know it can be hard to navigate the system from some of her stories.
There are also pain psychologists , PTSD is real regardless if it medical or from being in the armed forces.etc We really dont get over it but learn tools to deal with it . I actually have it from my little sister being at Stanford with the flesh eating virus and one dr who kept making mistakes so I felt like I could never leave her alone .
I hope you are doing ok and it is good that you are taking your time to get up slowly . Keep us updated on your health
Hugs
Angela
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Thanks Angela
I can’t believe how well informed you are I’m so impressed
Thank you for your kind words
I’m having some stabbing headaches throughout the day that only last a few seconds but hopefully that will subside
Thanks again for all your support you have been great
Take care
Paul