The past week i have had a headache every day. Yesterday it was very intense, hurting in my neck and shoulder as well. My headaches are usually behind left eye and into the back of my head. Yesterday and today it is my entire left side of head. I keep getting hot flashes when I get up to walk around. Hoping it is stress related, anyone else experience this?
I am currently seeing the neurologist that ordered the MRI that found my avm. She thinks watching it is best, but the last year my symptoms have gotten worse, will be seeing a neurosurgeon for second opinion. Currently taking propanolol to help prevent migraines. It helped for about three months but o noe have daily migraines so wasn’t sure if perhaps avm is acting up or not. Thank you for your reply I will pray you soon become migraine free! I hope to have avm removed too. 
Hi,
I had Gamma knife back in May of last year and about a month ago, I was having swelling in the brain from it. My entire head was one big headache. It was from swelling from the gamma knife and I needed to be put on steroids to shrink the swelling.
Oh my goodness, it must have driven u crazy! I do hope you r having headaches less now. So far I have had no treatment so if this headache is from swelling then the swelling is from something else… woke up this morning with the same pain. I go to Dr Thur so trying to hold out til then
I had headaches every day before I knew about my AVM. Once I knew about it, they were still there but I noticed that they were often more in the area of where the AVM is. Not sure if that was just because I knew what it was suddenly or if I just never took the time to relaize it was always mostly there...
After the Gamma Knife, there were still headaches, then much worse with the swelling, up to the point where I started losing my vision from the brain pushing against the eyes/optic nerves.
The steroid pills they put me on got rid of all the headaches within hours of the first dose. But, they're not a permanent solution either.
If you haven't had the surgery yet, you shouldn't worry about what I wrote here, you won't get that kind of swelling without the gamma knife.
But all the headaches are very annoying. Hope they can help you out with it.
Jimmy
Hi,
I was on Topomax for headaches pre embolization and I might as well have been taking M+M's.
Post embolization (April 2012) I was put on DF118 Forte( an opioid painkiller)those meds sorted the headache but I was spaced out from them.
I was then put on Amitriptyline 20mg at night and I have been taking them for the last 11 months.
I am now on 10mg for this month and then I am supposed to be off all meds.
So far so good, I rarely buy over the counter headache tablets, however I still get weird tingling sensations on the right side of my face(my AVM was located behind my right ear)and in the last two months they are starting to reduce in frequency.
I hope this information was helpful and your headaches get sorted out soon,
Bye for now,
Macker
Thank you Jimmy. It helps so much to hear how other have dealt with the same issues. My migraines and headaches have always been worse on left side, avm is on left side. I started getting a stabbing pain last year, four months before avm was diagnosed. Noe I know wat is causing pain I try to ignore it and work thru it. The increase in frequency had me worried but I’m prolly stressed and it makes it worse. Thank you, Macker those meds are a pain until the right one is discovered for you! I’m so glad to hear you should be Med free soon! Congratulations good luck with treatments!
Thanks. Have they said if there's anything they can do for your's yet. I got mine looked at by the Mayo Clinic in Rochester. Great folks.
My neurologist says it is small and she will treat my symptoms. That was a year ago this July. Symptoms have mounted and gotten worse the past ten months, I see her every three months and she tinkers with my meds. I go Thursday for consultation on a new Dr, neuroSurgeon opinion. I am praying to have my avm removed.
Mine was tucked inside healthy brain, so the cutting Dr's wouldn't touch it. If they can't do that, then Gamma Knife is an option.
Im glad you were able to have gamma knife, thankfully there are several options I will learn mine soon I hope how long ago did youhave your treatment? How have you felt since?
I had it middle of last May. Still had headaches after. They gave me pain meds, but they didnt help and made me feel wierd, so I just chose to suffer with it. About a month ago, the swelling got bad and the headach was constant and severe. Even started losing my vision. They did an MRI and saw all the swelling and put me on steroids. Within a couple hours of the first dose, the headaches were gone.
The Mayo Dr says I should be 100% closed off and good to go in another 6 months. :)
Feel fine now with the steroids, but if i forget to take them, I start feeling the pain. The swelling is from the AVM clottin up, and will go down as they are absorbed back into the body. Hopefully not long to get off the steroids, they're not really good to be on...
Hope they can help you out too :)
Wow, only six months to go, congratulations! I will keep you in my prayer for the swelling to go down. Steroids can be nasty but a necessity for you right now! Good luck and keep me posted, it is such a blessing being able to talk to people going through the same stuff, hope your headaches stay gone!
Thank you ninibeth in sure the stress isn’t making it better lol, I have learned to deal with them, when the migraines were in a pattern it wasn’t so bad, I hope I will be able to beheadache free if I am able to ha e avm removed. God bless you and thank u for taking the time to reply it feels good knowing I’m not alone
Hi,
Know that you're not alone in how you're feeling. My headaches are pretty much all day everyday. It often settles in my shoulders and shoulder blades and neck. Sometimes it'll lead to a burning...then a sort of numbness..... If I'm sitting and happen to get up too fast, then I'm overcome with a wave or waves of dissiness.....and then nausea. Bring it up to your doctor, and try and record in a notebook how you're feeling to have evidence... Often now my memory doesn't serve me the best and I find that when I write things down, it's easier for me to relay my feelings to others in that I don't skip details. I wish you the best. :-)
I have almost daily headaches for hte past 2 years (since gamma knife treatment.) over the counter meds usually take the edge off but not always. I try my best to not let the aches stop my regular day-to-day living. The headaches vary from slight pain, to dull thumping, pressure behind my eye, and sharp pain vibrating from my ear. No matter what, its always on my left side (side of avm.) when describing these to my dr, he said avm was so deep, shouldnt be affecting any one area. He's not worried. I also have several days a month where i feel like my head is stuffy, and I'm a bit spazzed. I usually get really frustrated with myself since I feel like this does affect my cognitive abilities and responding time. This of course further exacerbates the problem, and I usually end up sulking in my room for the day.
Any ideas about these headaches or weird "foggy" days as I often call them?
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Yeah headaches will be a common thing you will learn to live with...i get them quite often also and the hot flush is something i get from time to time also...its normal after surgery according to my neuro and im over 2 years since surgery and still live with this.
God bless
Thanks Jessica, that’s a good idea to keep record. I have a headache app in my phone I use to record the days and duration of my headaches but I think ill also keep recordof what kind of headache and symptoms accompanying it. I hope you have a good day!
Hey birdie I’m so sorry to hear u have daily headaches as well. Itsucks but is comforting to know we r not alone! I get days that are worse than others during the month. Those headaches bring with them body aches and brain farts. I forget where I am walking to in my own house lol. I have learned to keep notes for myself all around the house and my phone has several alarms set for during the day so I don’t forget my kids or when to start lunch etc… When my eye is having s bad day (when it is being stabbed from the inside) I put bengay on my neck. Don’t know if u should but I rarely take otc. Pills so I try to tough it out. Darkness is my best friend. Bright lights make me sick, literally. I sure hope my headaches aren’t worse after treatment. Good luck birdie you are in my prayers now the only thing that brings some relief is pure raspberries extract. Buy it in baking section, two bucks. I smell it when I’m nauseous or have a shooting pain. It helps relieve it a little.
God bless you too, Adrian. I will keep u in my prayers. I do hope your headaches ease off! I have gotten used to the migraines. Apparently now I must get used to daily headaches… hopefully whatever treatment I get doesn’t make them worse! Good luck Adrian when was ur surgery? How r u doing since?