Hello to everyone, I was diagnosed with an AVM in my brain when I had my one and only seizure on September 26th.
I had an appointment with my neurologist last Tuesday who basically said he couldn't give me any further information because he wasn't specialized in AVM's. So now I am waiting for an appointment with a AVM specialist. This could happen next week, next month or sometime next year.
In the meantime I am partially in limbo, taking meds for seizures, and really hoping that it doesn't pop (no bleeding please).
But in the last week I have been feeling pressure in my head which I have come to suspect can only be anxiety and fear. I know that if I have a headache again I must go to the hospital immediately and my head keeps playing tricks on me.
In summary no pain, just some pressure on the back of my head and right on the top. I've also had sinus pain since I was a little kid, so my eyes hurt a bit. It comes and goes.
Just wondering if anyone out there has the same thing and should I be worried...
I'll pray for you, Its been 4 years since mine ruptured, I'm alive, still have headaches,and take seizure medicine daily, have you talked to a neurologist? I lost use of my left side, but not giving up hope, if you can read the book, My Stroke of Insight, I just finished it, I'll pray for you. I do everyone going through AVM's, Its a long journey, you have to stay positive and strong, Mine was right side, my prayer for you is to make it through this journey with positive thoughts.
Don’t worry so much my friend. The odds of a bleed are only 2.5% to 4% per year. My neuro told me that you won’t have to wonder if you are having a bleed or not. The headache will be so unbearable that you will faint. Evryone around you will know you are having a medical emergency. Otherwise, you will get headaches and pressures and all kinds of strange things until the AVM is removed.
You need to stay calm, and be persistent with seeing a specialist. Don't take no as an answer. Not knowing where you're located, there are a lot of really good specialists, and there are a lot of quacks too.
My AVM ruptured in 1981 (that's right 1981), and I had absolutely no problems afterwards - except for visual field loss and migraines. I take 300 mg B2, and fiorcet for real pain. Try taking the B2 - it helps the blood flow better through your body.
In 1986 I was in a car accident, and it did cause a seizure. It was my one and only seizure.
So, my advice to you, is stay positive, stay focused and be persistent. You will find a doctor that cares and knows what to do. It's a lot easier for the surgeon to handle if it doesn't rupture. I had the worse case of all, and everything was fine.
To answer your question, the only time I experienced an increase in pressure in my head was after my AVM was removed.
Remember that Stress, anxiety, and fear will manifest itself in many ways. It can cause nausea, headaches, generalized illness - the list goes on. Now that you have a diagnosis it is easy to connect any changes in health to the AVM. Try not to let stress take over (I know easier said than done), but the healthiest thing I did was not let the diagnosis control my life.
Hello, I just wanted to give you some comfort not to worry, when I was first diagnosed 2 years ago I went through some of the same issues.I was constantly worried about bleeds and psychologically it took a toll on me. Right now I barely even think about it, I do have seizures here and there but my advice would be not to even think about it and go about living your life like before your diagnosis with a few minor changes. (No scuba diving, heavy weight lifting, yea I think that is about it!) Until you see a neurosurgeon and decide what is the best path for you. (Don't worry about bleeds, the probability of a bleed is not as high as you might think)
David has it right, you will know if something bad is happening because the headache is so intense, I was frozen with pain, so it's pretty obvious. Be your own advocate, if you can't get in to one specialist for longer than you want to wait, there's always another doctor out there, and besides sometimes it's good to have 2 opinions on this if possible. It's been 22 years since my AVM, and mine was a pretty sizable bleed that required surgery, and everything is fine, other than seizure meds and some other annoyances. Sometimes thinking of these things can probably drive you crazy, so try to hang in there!
Welcome to the site…definitely keep mindful of things now you are aware and try to stay positive…I’m sure there are others out there who can see you quicker as I was in a similar issue to you but had a bleed 1 month later…hope that doesn’t happen to you…but I think me stressing over it contributed to my bleed happening so quick after discovering I had an AVM…many stories I’ve heard of ppl waiting over a year with no issues at all…will pray for you and yes anxiety is a killer but try and be strong…do things to take your mind off it but at the same time be cautious now you know…God bless!
I don’t blame you after hearing this news. The anxiety and the worry, it’s a lot. I always try to be possible so just tell yourself that they found it without a bleed, just educate yourself. Be strong for you and your child!
WELL I HAD A SLOW BLEED IN MY BRAIN FOR 13 YEARS BEFORE THE AVM ACTUALLY RUPTURED....TO BE HONEST THIS ISN'T SOMETHING THAT I WOULD NECESSARILY BRUSH OFF AND NOT WORRY ABOUT....A RUPTURE CAN HAPPEN QUICKLY...WHEN I WAS 18 I WENT IN FOR HEADACHES AND WAS TOLD I HAD MIGRAINES AND HAD TO LIVE WITH IT ...THERE WERE NO TESTS AT THAT TIME TO DIAGNOSE AND I WAS BLEEDING FOR 13 YEARS BEFORE I RUPTURED....ROBBIN
I just wanted to echo David’s comment: you are more likely not to have a bleed statistically so let that be a comfort. Diagnosis, knowledge seeking, acceptance and treatment all take time and should not be rushed. Try and take each day at a time, making manageable steps forward. Your body will tell you if something is really wrong. Trust it. But keep positive. Don’t be frightened by people’s bleed stories; that’s their unique experience and not yours just now. Assume the worst is unlikely to happen and get all the information and support you can. You will get through this and we are all here for you. Take care and keep strong .x.
Its been said before but i just want to reitterate-although bleeds are rare they can happen. I didnt know I had am AVM until it haemoraged, so didnt have my headaches and weird feeligs in my head. checked out. You have the great advantage of knowing beforehand, I would get any strange feelings checked out, if nothing else it will ease your mind. Take care and good luck! X
I would definitely want to see the doc that specializes in AVMs/AVFs. Is that the only surgeon I your area that is a specialist? I would see if there were others. If it were me, is want to get it taken care of rather than have to worry about the repercussions of not doing anything. Good luck!
Hi! I also have pressure sometimes. It started about a year ago. Every now and then, more frequent lately, I’ll get a real deep pressure coming around my left eye. I too have been wondering if this is the AVM but where I live, there are no AVM specialists. I am waiting to get moved back to Ft. Worth and see a specialist in Dallas. I don’t know if you should be worried or not, go with what your gut tells you. I wish you the best!
Hi
My partner has pressure in his head 24/7 he also has over the years been diagnosed with"sinus" which I now believe is connerto the AVM. I fully understand your feeling of living in limbo we feel our whole live is on hold. Everyday I am scared he will have a bleed. Go with your gut. Keep ringing doctors / specialist till you get seen.