Have you tried putting ice packs on your head and neck and shoulders? After my embolism I had worse headaches and for some reason could not take any pain meds without severe vomiting so the ice gel packs were a life saver. Also I take 1000mg of Magnesium a day which does help with head pain. I hope you start to feel better make sure you are getting enough sleep.
Angela
Thank you Angela 
I get as much sleep as any mama o three lol, ice packs do work for me sometimes but there are times when nothing touches the pain. My vertigo gets really severe and cold makes it worse, donāt know why. I also take magnesium and while it has not helped with my head ( I am having daily headaches right now amf nothing is working. Woke up Saturday and hasnāt eased all week) magnesium Does help with my leg pain! I also take folic acid vitamin d, b, c .and I take propanolol to prevent migraines. I had horrible restless leg and painful leg cramps. Not since I started magnesium about a year ago. Thank you for your suggestions Angela God bless you:)
My AVM is mostly obliterated but I have radiation necrosis and some brain swelling issues. Itās reasonably stable right now but I still have daily headaches that vary in intensity from something my pain meds mostly keep at a tolerable level to passing out on the floor from the pain. Iām allergic to many of the anti seizure drugs used for migraines (docs donāt think I have migraines). The only thing that seems to work is cancer patient doses of narcotics and a bit of medical marijuana. Overdoing things makes it worse for me, and stress sure doesnāt help. Itās no fun but try to stay strong and sane -hard to do sometimes, I know.
Thanks for the ideas and understanding. I will try what u suggest, just hope this is all over soon for everyone!
I've had headaches, and headache spells all of my life. They come, and they go. There are also a few different types of headache pain that I experience and can identify. The last headache was in the back of my head, at the base of my skull, radiating up, over, and across my forhead. This headache is like a migrane. It was intense and horrible,(gross like a hangover) and I thought it would never stop. This headache lasted 10 months this last time. (it felt like it was another life - I also felt I could never function normally ever again) Ive had that particular headache on and off since I was about 8. (Im 56 now) I get hot flash's only occaisionaly, and attribute that to medication side effect. I do get "swish's" or swoosh's when I change direction, or turn my head (frequently, but not 100% of the time, and light headed, if I get up too quickly. Also constant ringing in my ears (24/7) I do have pain that goes down my shoulder and neck (frequently)but attribute that to the GPN,and spondylosis of cervicle spine. also - frequently experience the sensation that my arms are very heavy, and have no strength.
Among the other drugs I'm already taking, they've had me on Morphine since last August to try to help with the headaches
Hydration and rest helps greatly!!! Also - Keep a pain diary! (where, how long, how intense, how long did it last, any notable circumstances, etc). Pain Diary helps to understand trigger mechanisms, and helps when you go to see the doc about a "new" or re-occuring pain or discomfort.
Thank u s much ed! I will definitely keep record, I feel like I just read my life in ur post, lol. Iām so sorry u have the constant migraines as I do, ur symptoms fit mine to a T with just a slight variation. Thank u for reading my post and responding. It feels good to know Iām not alone, if u donāt mind sharing, where is ur avm? Godbless you, I will keep u in my prayers
Reading all the posts is making me feel so hopeless. My boy friend had an avm that was only 20% removed and 80% cauterized he seemed to be doing well when we first met which was after his surgery (surgery was February 2012) but in February 2013 which was a year post op he took a huge turn for the worse. He is having a constant headache/migraine. He is lucky if he has one day a week for the past 3 months where he is functional. He had been back to work but is off again now. He was hospitalized for 2 days this past week and since his discharge has not had any relief from the pain. He hasn't been able to be up for any length of time and the doctors don't seem to take it seriously, I feel like they wanted to drug him up enough that he wouldn't feel the pain instead of trying to figure out whats causing it. We have 7 children between the 2 of us (3 adopted) so this is very difficult for the kids too. They want to know when he will feel better and I don't have answers for them.
There are lots of success stories here, too, but they are not the ones you notice when you are worried. Gamma knife can do some weird things, pain-wise, and sometimes the pain diminishes later on. You may wish to join the gamma subgroup (click on "Groups" to find) to ask others if they had similar experiences.
Today they sent him back to Gates Vascular Institute its been 9 days of this constant pain. He isn't able to function and even after telling them his pain level was a 9 out of 10 they did a repeat ct and were going to discharge him. We were prepared with a lot of questions about last weeks diagnosis and test results and what they had told us. The ct they did today they only compared to the tests done last week. However after voicing our concerns to a couple of different docs they went back to the CT and one of the things we had questioned brought out what one of the docs had referred to as a "cyst". They had said last year that the cyst was completely removed. When they revisited the scan they said that they had found what they didn't want to label as a cyst but a pooling of fluid in the ventricles. They questioned us about any numbness or loss of continence which we hadn't witnessed but he also questioned if he was lethargic, when he is down with a head ache he sleeps for days with out eating only getting up to use the bathroom. They decided to admit him again and in the AM he will have an angiogram which its been just over a year since they did one. Its such a mixture of feelings, on one hand you want the tests to be negative but on the other hand you want them to figure out what has happened in the past 3 months to take him away from us :(
Thanks mamaginof3 I had my surgey Feb 23 2011 and health wise ive been okay but its a struggle after living with something so dramatic i mean you have your up and down days.
I get headaches often and the hot flush thing scares me at times. I also recently started getting dizzy spells every now and then but i keep my annual checks up to date and keep praying...God bless
You are a very brave and strong woman Adrian! It is a crazy roller coaster of emotions, from the moment doctors tell u what is in ur brain. I go in July to meet a neurosurgeon and discuss what treatment options are available to me. I am torn, I know it a blessing God showed us this avm before a rupture, bit all these symptoms make me feel crazy! Iām so sorry to hear u have dizzy spells too, honestly I have noticed hot weather makes dizziness worse, as does the bright sun cause headaches. Hot flashes are the worst, stress is a trigger but so is standing more than 20 minutes, donāt know whyā¦ Sometimes sniffing raspberry extract helps with tension headaches and sinus headaches. Ice and bengay really only thing that helps my regular migraines. Do u mind me asking, who was ur Dr? Wherefore was ur surgery? I am lifting you up in myprayers, God bless you Adrian
Good morning studer, you and your bf are in my prayers, this morning is probably been quite stressful and Iām so sorry he is going down hill so fast. Our local hospital initially sent me home time ad time again when I went in for avm symptoms. Now that u know what he has donāt let them shoo u away, new or worsening symptoms need to be reported to his Dr. We r here for u to vent and to help u in ways we can. This is a tough time for ur family but God bless you, God will give u the strength!
I hope the Vascular Institute can figure out a way to give him some relief. Keep us posted.
Unfortunately they still have not been able to help ease his pain he is already getting the botox injections and today they infused him with toperal I believe it was called and it did reduce his pain for a short time from a 9 to a 6. They took him back off of work for the next few months and said that they would re-evaluate his working August. He is disappointed and discouraged. We have all tried to make light of it but I think him not working adds an extreme amount of stress with a house full of kids and bills that have to get paid. Ive told him repeatedly that we will be just fine and that no job is worth risking your health but he loves his work and has been doing this job for 16 years with the gap from being off for 2 years from the avm... Praying it gets easier for him I just want him to feel better and be able to enjoy life with the kids and I...
I'll pray with you for that. Let him know we are rooting for him.
I experienced this yesterday and it was absolutely horrible and Iāve been absolutely exhausted today. I think mine may e been stress related too but I canāt be sure as Iām still very in the dark about everything. I hope youāre feeling ok!
I was as on propranolol and after 3 months I came of them, just didnāt agree with me but at first they worked well. I was given some advice regarding my migraines and it worked well - no caffeine based products, no smoking and no chocolate lots of water and no alcohol - they just know how to kick you when your down lol
Paracetamol, only take pain killers 6 days max in any one month as more than this can actually bring on headaches.
Good luck
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I too have daily headaches. I take Topamax which has taken them from migraine level headaches to just regular painful yet tolerable headaches. I also have strange tingling and numbness in my face at times throughout the day. Stress definitely make my headaches and other symptoms more intense. My AVM is in my cerebellum and my first embolism is scheduled for next month. Good luck to ya! I hope you find some relief!