Hi all! I’m new here. I was diagnosed with an I ruptured AVM about 6 weeks ago. I had an angiogram on Tuesday. I came to with an awful migraine but was sent home to rest. In the middle of the night I woke with THE WORST headache I’ve ever had. I couldn’t recognize my sons name and it was very scary. I was sure I was having a bleed. Went to the er and thankfully just an awful migraine. I still have a small headache but I’m more impacted by the roaring in my head - not sure if that makes sense but it’s like I can hear the blood flow. I’m scheduled for embolisation and craniotomy on 11/29 and I’m scared these headaches will continue and become worse with more treatment. Has anyone had any experience with headaches like this during treatment?
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Welcome! I hope we’ll be able to help you out some. W have a wide range of experience here, a ot of similarities but aways differences. I have had three angios, and did not experience the after effects you are describing. I can say that a lot of folks have ho post here, and it was told to be as a possible side effect pre op. I believe it was due to the contrast material used during the procedure. I think some react quit a bit t the contrast.
I think the sound you describe is pulsatile tinnitus, do you hear it with each heart beat. Did it just show up post angio, or have you had it before. Mine I had before and still do now, but mine did change after gamma knife and certainly not nearly as noticeable now.
Thanks for joining us, and feel free to fire away any questions you have. You will find an incredible group of people here who really care! John
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@Jessica12 Hello and Welcome to the group. I am sorry this is happening but glad you found the group. Its scary and miserable to be going through this esp when you have a child and pets to take care of.
I have a DAVF on my left side and during my first angio it looked like a spider with 30 legs. I was not happy . I too like you got terrible headaches post angio- and I had a combo angio/embolism which took over 7 hrs which probably wasnt best. I am also allergic to the dye. I have to take steroids before the angio but still am super sick for a few weeks after
With a DAVF we seem to hear the blood flow and thankfully after my first embolism pretty much went away. I still have head pain and still have my DAVF but dont have that killer pain from the procedure .
What I did the second time was I had a bunch of stuff to flush my system like vit C , electrolytes and coconut oil in your tea or coffee and it wasnt as bad.
Listen to your body and make sure you have support.
Get your house and bedroom set up as much as you can. And get your favorite comfort foods ahead of time . Like I love tea and toast and chicken soup with loads of crackers,
Also dont be shocked if you loose some hair this is normal.
We are here for you. We understand and this is a safe place to vent and freak out. This is invisible illness and people forget you have something serious going on.
Hugs
Angela
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Thank you both for your kind words. The throbbing sound in my head does sound like that tinnitus thing. I’ve had it my whole life but has been non stop since the angiogram. Luckily the migraine finally went away yesterday (thankfully in time for my sons birthday party) I’ll definitely look into those comfort items before my surgery.
I’m most nervous because I don’t know what to expect post surgery. I was under the impression I’d be back to work in 6-8 weeks but they told me to request a full 16 weeks. Hoping that’s more precautionary.
Hi @Jessica12
It’s impossible to predict post surgery, so yes, think of the 12 weeks as precautionary. The variability is very wide. It’s important to be positive: you may be out of hospital in a few days but it can take longer and recovery post hospital can range very widely from being basically ok at home to needing specific therapies to recover.
However, much better to think positive but plan for longer should it be needed.
One of the things that someone wrote on here that I would have found a little comforting to know is that if you wake up post operation and some things don’t work: for example if you can’t see, or your words are all scrambled up: don’t immediately think “OMG!!” and think that’s the end of things because it is not. There’s every chance that it is just a temporary thing that will go away once the swelling and disruption of the operation has settled down. This is not to say you should expect such things to happen but just to say don’t panic if they do.
Welcome! Ask anything you want: that’s what we are here for.
Richard
Welcome to the family & sorry to hear about your recent bleed… I had an AVM bleed prior to removal & also experienced headaches after angiograms… unless you’ve had a bleed no one can understand the trauma it puts you through… still til this very day after 10years any weird major headache can rekindle the anxiety of a bleed, but this is normal.
Make sure to let the medical team treating you know of all the symptoms etc so they can monitor it & look into it if & where needed… if anything they may dismiss it which will give you some reassurance… I found resting after angiogram helps.
Please keep us posted after surgery & recovery… sending prayers your way… God bless!
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