My husband has had his AVM removed and his memory is not the best but are daughter is now 10 and she is getting really bad headaches atleast twice a week and we are both really woried that she could have the same thing did any of you have really bad headaches before you found your AVM

Hi Stacy, yep sure did, I had headaches and migraines for 20 or more years before they found mine. It is one of the main symptoms but they never seem to look for AVM's as they are rare. I had heaps of MRI's, CAT scans and they still missed it until they used contrast die and MRI then they found it, I was most likely born with mine and are very very lucky not to have had a bleed. Does she have any other symptoms, dizzy, blurry vision etc, every AVM (depending where it is) has slightly different symptoms.

Get it checked out, my son get bad headaches and migraines, he has had MRI and CAT scans but they have not done it with contrast so the next one he has I will insist they use contrast just to make sure.

But my son also has really bad sinus which can also cause headaches and migraines so maybe check this out as well, or another reason is if she is having trouble at school, getting bullied that sort of thing sometimes they just don't let you know, is it the same days every week. Or maybe food allergies

Anyway I am not a doctor, just telling you some of the things we had checked out with my son who is 11, but has been having this trouble since about age 6. I hope some of this helps.

Best of luck

Stay strong and take care


When they found My AVM I was told that It’s a strong possibility it could be genetic, and yes they found it because of my migraines. The thing that they told me was that generally if it is genetic in your case. AVM’s generally skip generations, I think the first step would be to talk to your doctor, young children sometimes develop headaches as their mind is developing, it took six years for them to find my AVM because they figured my migraines were just from other causes. You can get genetic testing to see if the AVM is genetic and I undertsand with a ten year old chid that may not be the thing that you want to go through. But my doctor told me that it generally skips generations, so I hope you can get that confirmed and get a little comfort.

My husband had severe migrain headaches since he was younger and as he got older they got worse and became more consistant. He would take Excedrine and lay down for the rest of the day. He had a horrible headache and he went to the doctor and they did an MRI with contrast and found he had an AVM that bleed. We were told it could be genetic but that they did not have enough research to confirm that. Also he doesnt have a family hx of AVMs. Hope it all works out for you guys and he doenst have an AVM. 1 person in your family is enough, to have to go through this again would be horrible. Good luck.

Hi Stacy, I had headaches before my avm was found. I would take an aspirin and it would go away then return when the aspirin wore off. This was occurring for about a month or two before my avm was discovered. But also I have a 10 year daughter and she was also having bad headaches. We had several different things happening in our life at the time. The doctor came to the conclusion that it was stress related. She has not had those headaches for awhile. I would have your daughter seen by a doctor to see what could be the cause of her headaches. Let us know what you find out.

Hi stacy I also have migrane for 20 years I had my surgery march1st this year so far no headache and I hope it don’t come back. Hope everything works out god bless.

hi stacy,yes i had really bad headaches before i was diagnosed with my AVM i have heard that they can be hereditary but i have also been told that they arnt i would be really interested to know more about this as i have 4 children myself and my middle daughter has really bad headaches.Iwish you all the luck in the world and hope everything turns out fine for you.

Unfortunately there could be many things wrong. Everything from AVM to aneurysm to a bleeding disorder. Or it could be as simple as stress and worrying. I pray that it’s a ‘simple’ thing. My kids all get ‘sick’ . Seems that when my son has an episode (headaches,ER,surgery, etc.),they all react. My oldest starts chewing her nails,the dog won’t leave his side,oldest gets stomach aches. Then Danny starts watching him like a hawk,which is a little weird because he’s only 5. Finally my other daughter starts acting like a scatterbrain,she forgets everything and gets really over-emotional. They even do this when they’re at school. Today,my oldest called from school with stomach aches and a headache. When I picked her up she had bitten her nails to the quick. My son slept 1/2 the day with a headache. My son is on homebound. He was still sleeping when she went to school. It could be coincidence, but I can’t say for sure. Looking back,there seems to be a pattern. They love him and worry about him,even if they won’t admit to it at times. This his definitely hard for her. It’s a lot to take in even for an adult. I would look back and see if her headaches coincide with his headaches,surgeries, etc. If you don’t see a pattern or if Tylenol doesn’t help her headaches, I would talk with your husband’s neuro. Also I would get her talking with other kids her age who are dealing with a family member who has an AVM. I believe there’s a group here for kids. It’s probably easier to talk with them than with you. Hate to say that but she probably doesn’t want to add to your worrying. I’ll be praying for you and your family. I really hope that everything turns out ok.


My daughter gets a headaches and stomach pain every time before she get a seizure and thats how we found about it at school, The last time she got a severe headache she said it was like she has never felt before and when we took her to the emergency they did a CT and they found out that it bleed a little but from what doctors have told me avm are not Hereditary

Yes it was my main sympto. Get her checked!

My wife who never had a history of headaches was slammed with one so powerful it dropped her to the floor. That was the day we found the AVM. Her doctors also told her that her AVM was most likely genetic. She just never had any type of history or issues that would have required the testing to find it before it ruptured. Considering your husbands AVM and the possibilty of genetics playing a role, I would defenetely have your daughter checked out. Wishing you good luck and positive thoughts.

Hi Stacy,

My neurologist told me that AVM's are not hereditary and he also told me that my migrains & headaches were not from my AVM either. I will be getting a second opinion hopefully later this year & will keep you posted on what they have to say. I think because AVM's are rare they don't know a whole lot about them. I would go ahead and just get the MRI to make sure your children doesn't have this. Good luck & my prayers are with you!

yeah i have always had really bad headaches - before jumping the AVM gun though- I would respect how much stress your daughter would be under psychologically with your families ordeal and the avm - there are a number of reasons for headaches - stress, sinus, dehydration, neck being out - start the investigations if you are worried but try not to worry your daughter too much :smiley: many people get headaches and its 9 times out of 10 nothing sinister. x

Stacy taking her to her eye dr. they are able to see a lot going on. I just

had my son's eye dr. look he said he looked good. My husband had an avm. so with the hereditary thing.

Love and God bless


My husband was having persistent headaches, but the symptoms that really caught his dr’s attention was the ear pain—it would start in one ear, then travel to the other, then travel down his neck and back. Thank goodness for the MRI for finding it.

Headache was how they found my AVM. My neurologist calls it a pain that happens to be in my head because headache has a specific definition in the medical world. I hope you can get it checked out. My head pain started really suddenly and it took It took 2 ER visits before I convinced a doctor to do a CT scan. Lots of fairly benign things can cause headaches, but definitely better to check it out and be sure.

robin b said:

My husband was having persistent headaches, but the symptoms that really caught his dr’s attention was the ear pain—it would start in one ear, then travel to the other, then travel down his neck and back. Thank goodness for the MRI for finding it.

EAR PAIN?! My son has started complaining that his ear hurts. Hasn’t hurt it. Had our Ear doc look. No infection,swelling or anything out of ordinary. He’s been having more and worse headaches lately. Even took him to dentist and his teeth are fine.Should I mention the ear pain to neurosurgeon? Had anyone had this because of a bleed or a new or regrown AVM?