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AVM Survivors Network

Headaches and AVMs

Apparently headaches, dizziness and nausia, are not caused by AVMs. That is official from a Neurologist from Royal Berks. So there you have it… What a load of rubbish to be polite. I get so frustrated with these people…
Mick

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I always felt that neurologists and proctologists should be able to discern one end from the other, you my friend have located what I hope is a rarity in the neurologist world! I would suggest seeing if there is another option and get another opinion on that. Stay strong Mick, John.

Sheesh.

If I may say something, I rarely get headaches, as in the only time I remember getting head-splitting headaches was when I was probably 11 or 12 years old. That was about 45 years ago.
When I had my stroke, I didn’t have a headache. Not even a little one. Had some neck pain but not a headache.

I never suffered from headaches as bad as I do now, until I had a Tonic Clonic seizure last June. ever since then it has been relentless. Just a bit weird that the headaches started the same time. I have been told Gamma Knife will not cure my headaches. I have an AVM of the left partial lobe with an aneurysm…

There are a lot of doctors saying this kind of stuff. I always get headaches in the exact same spots. Right where my AVM is located so how does it not cause those headaches.

The first neurologist I’ve seen told me that none of my symptoms are caused by my AVM.

I went to another one who takes it serious now.

I hope your headaches become better in time!
-Jonathan

Thanks Jonathan.
Might help if the Doctors didn’t cause so much stress…

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January 30, 2018 - date of my major brain Embolization. January 30, 2018 - date of my first major headaches.

While I have been awake, I have had maybe 3 to 4 hours without any headaches. They vary, but they are always there.

I don’t believe in coincidences when it comes to health and medicine - so, of course they are related.

TJV

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Wow, that came from a Neurologist?! Maybe they can explain why I was throwing up every thirty minutes and had non-stop head pains after my AVM ruptured. eyeroll But sadly, there are some Doctors and Neurologists that don’t know much about AVM or don’t know what to look for when someone comes in wanting to know why they’re having many migraine pains. Hopefully with more education and awareness this may chance. Again, hopefully.
I hope your headaches get better. And that your doctor finds some way to obliterate your AVM. My AVM was also found in my parietal lobe (right side) but also the occipital lobe. Since I ruptured, the Doctor that was overseeing my surgery wanted to act fast and perform that GammaKnife surgery to stop of the bleeding (mainly).

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My wife had poor balance, projectile vomiting, blurred vision to name a couple.
Her AVM was in the Cerebellum. We had two Nero-surgeons say to not touch it.By the time we were done, we had 5 (five) opinions before we were comfortable about a decision. The Doc we got was well known (Country wide) and did both surgeries and gamma-knife.
He ended up doing both . The Gamma took 4 years before the total effects were in.
She was left with a little left side weakness from the initial bleeds.

Sorry to hear that you were given such silly advice. The reason I found my AVM is because I suddenly started regularly getting migraines and got checked out.
Double sorry because I’m due an appointment at royal berks in Aug (recently moved from Bristol, so new neuro), hopefully I don’t get the same one lol, because my migraines have gotten more frequent and I’m keen to discuss why!
All the best Mick
Harry

OMG. How awful. There is no way this can be true. We are all living proof of it! This is totally frustrating. I know these people are far too busy but to fob off someone with a genuine medical condition with this sort of advice is so unhelpful.

I’m now being told it’s the medication…:rage:

So sorry. Many medications can cause headaches, unfortunately.
I hope you find the answers you need to address your medical issues. I had migraines for over 40 years before my dentist treated me for TMJ. I couldn’t believe it worked!!!

Wow. It all depends on where it is and every one of us is unique in that regard.

My presentation was a sudden headache but it was definitely not the “worst of my life”. It was pretty bad though and I’d put it in the top ten. Some of my migraines have been worse, and they are always accompanied by pretty bad vomiting too. What was different with this one was that it just felt a little different, not worse, the vomiting was every couple of minutes instead of every twenty minutes, and I did have a weird “floaty” feeling that I can’t even really describe. Even so I was sure I was having a migraine and wanted to go to an urgent care that could give me the IV cocktail, not to an ER where I’d have to sit in brightly lit rooms. My husband and teenager insisted and they were apparently right!

The next day I felt absolutely fine except that I was hooked up to the IV and couldn’t go anywhere. Then I had the embolization, which kinda changed that situation.

So why did my dizziness and 24/7 headache disappear after my craniotomy-DUH!

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I came out and told one neurolgist that she may have studied AVMs but she didn’t HAVE one.

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And I bet she LOVED being told that. NOT.
I’ve had neuros come out with some really insulting comments regarding their knowledge vs mine and although they have done all of their university studies none of them have actually ever been in this situation. Theory vs reality is vastly different but from my experience none of them like to have this directly identified.

Merl from the Moderator Support Team

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