This is a question for people that have had surgery to treat their AVM…
I have horrible symptoms daily including headaches, nausea, dizziness and fatigue- has anyone had these sort of symptoms and then after surgery they have gone?
I wonder as I’m 28 if my brain is now damaged and won’t ever feel normal again…
Thanks
Natalie
@Natalie89 The good news is you are young. I had an unrelated stroke prior to my avm forming and that stroke caused brain pain. Also it was 7 months after the stroke that they found my avm. I think I should of waited a bit before my first angiogram cause my brain was still healing from the stroke but I could not really function because I could not sleep and felt terrible. I also did not listen to my neuros right away when they suggested botox for my head pain. It has really helped but the longer we wait to control our brain pain per my Stanford Neuros that is then how we will feel for the rest of our lives. With Botox most days I can function. I also use medical marijuana gummies tinctures and topicals to help with the pain and sleep. I dont have opiate receptors so reg meds do nothing. I do also take gabapentin which has also helped. I also stopped eating sugar and switched to coconut sugar when I use it and I do daily coconut oil which helped my brain heal faster than they thought from my original stroke. also had a stroke after my first angiogram. There is a national brain stem clinical trial going on that is going really well. I hope its fast tracked and then I plan on getting it to see if it heals my brain pain. I also take a slow release magnesium that helps with pain as well. Have you seen a pain neuro?
Hugs Angela
Thank you for your reply. It sounds like you have really been through it wow!!
No i have only seen one neaurosurgeaon so far… he says my symptom arent related but i know they are… i have been tested for everything else.
I have my 1st angio on tues- really nervous about it but hopefully will get more answers xx
most neuros are not good when it comes to brain pain and head pain see if you can get referred to a pain clinic at a local university hospital I go to Stanford and even the head of stroke who is my doctor and in charge of me at Stanford referred me to the pain neuro and they are really awesome I thought it was going to be bio feedback stuff but they have so many things they can do to help plus they really know if you can take xyz drug more than what a reg dr knows - they have occipital shots that made me feel normal ! They have trigger shots and infusions ,many many things that no other neuro has spoken to me about and they understand pain better. Really get a referral you dont need to suffer- We have been through enough. @Natalie89 Plus it is so tiring to be in pain all the time. One other thing my pain neuro told me is to start my day with protein. Protein and good fat like coconut oil, real butter and olive oil is what I do now. I even put a tsp of coconut oil in my coffee or tea every day.
Wow i have never heard of a pain clinic- i am noy sure if we have them in the UK. I will ask my neaurosurgeaon about it!
Protein in the morning & olive oil in your coffee how strange that they help!!
I cant imagine anything will until its gone for good! The problem I find with tablets is there paracetamol and ibuprofen doesn’t work anything stronger makes me really dizzy an feel out of it- i already feel like that so i dont need something making me more spaced out!
Xx
I had most of the same problems during and after surgery for a while. I mostly had nausea, dizziness, and fatigue. Most of the causes I think were just side effects of the medication. I was switched from one types of medication to another a lot. Some of yours may be your body just trying to get used to the change. I was 10 at the time so it was a little tricky for my body to get used to everything with the medication and the growing at the same time. Most of my side effects went away after a year but still had some for a while. My AVM story was a long one.
Its coconut oil in my coffee 
-
yes I can take the normal pain meds cause I throw up alot
Not sure if medical marijuana is legal there in the UK but the gummies , topicals and tinctures have really helped me. I sure hope they have pain clinics there that would be terrible if they dont. I have also read cherry extract or juice can help with pain. How long ago was your avm treated?
Angela
Natalie,
The angio is going to be fine. I think the worst bit is that it does hurt when they press on your wound when it is all finished but it is all done by then and it doesn’t hurt so much as to be scary. Honest.
Good luck on Tuesday. You’ll be great!
Richard
Hello,
After my surgery to remove my AVM, I had lots of nausea for about a month, and fatigue for 2-3 months. I had no headaches at all, after having had almost daily headache prior to the surgery. I was told by everyone to be patient with myself, and to tell my family to be patient with me. I hope you feel better soon!
Gwyn
Natalie,
Thinking of you. Hope yesterday went just fine. Let us know you’re OK.
Richard
Thank you for remembering that is very thoughtful of you!
Yesterday was just awful. The actual angiogram wasn’t too bad apart from the first Dye made me feel like I was going to pass out… I lost my eyesite in left eye when i came back onto the ward so had to get rushed back down… eyesite came back after about 30mins.
They found on the angio theres also somthing wrong with my heart- so he said its not safe to do the op to remove my avm (my bpm was 140 whilst doing the angio) not really sure whats going to happen now 
he said my heart is more of a worry than my brain…
Today my head is killing me way more than usual and i feel so dizzy- i am not sure if thats normal xx
Sounds like a horrible few months but so glad you feel better now.
I would do anything to be headache free! Xx
Natalie,
OMG! Every time I tell people they’re going to be fine, it seems to go the wrong way!! I’m so sorry you had such an awful time of it!
Did your eyesight go with one of the hot flushes from the contrast material or not seemingly connected to one of the injections?
I know @Angela4 has an intolerance (or poor tolerance) of the contrast material so has a tough time with angiograms but I cant say I’ve heard of sight loss before. I do know I got some scintillating scotoma auras occasionally for about 1-3 weeks after my op and angio, so some impact on sight or interpretation of it can result.
Let us know how you get on with your heart… Hoping very much for a good outcome!!
Richard
What is scintillating scotoma auras?
My vision went again this evening about half an hour after I had paracetamol and actually that is what happened at the hospital also- a while after paracetamol… maybe just coinsidence! This time it happened in my right eye an lasted for about half hour. It starts off like I can’t focus on anything and then goes blurry like i have tunnel vision.
I am still having horrendous headaches that are making me feel like I’m going to be sick, and when I stand I feel really really dizzy… is this normal?
Oh and also my Surgeons secretary rang today and he wants to see me this Wednesday- so soon!!! It’s great it is so soon but it’s also worries me that it’s bad news… he said for a management plan
It sounds like another type of visual interference, the tunnel vision, but again a type of migraine aura.
I had scintillating scotomas for about 3 weeks after my embolisation. I’ll have to check how often but I think a few times a week. Here is an article which shows a couple of scintillating scotoma images:
I understand that the effect is typically 10-30 minutes and is typical of a classic migraine. In the case of other causes, something like an AVM could cause migraine-like symptoms. Since I had mine only for a while after my embo and again very briefly after my angio, one or two of us here agreed it might be provoked by the contrast material.
I don’t have the book I’ve been reading about migraine to hand today but I remember tunnel vision and some other pretty weird visual effects being migraine aura-related symptoms, so I think it could be related to the contrast material for you, too.
Definitely worth mentioning to your doctor, especially if they persist or get worse.
I’ll find my link…
My first experience of a scotoma, though I didn’t know what it was called at the time. Read further down to see the progression…
http://www.avmsurvivors.org/t/my-update-dural-avf-embolization/16916/22
This is the C shape i was trying to describe to my nurse- this is exactly what i experience!
Cant say i had sore balls though 
… I did! I woke from the anaesthetic and it was the first thing I noticed. Gosh! It was uncomfy… perhaps I over-shared there…