I had a partial seizure again today. I just got in the shower and suddenly felt abit dazed, and little bright white flashing lights were popping up in my vision. for about 5-6 seconds. this happens to me every now and then. But it hadn't happened in a while. and now tonight, my head hurts. not severely. but enough. and seems to hurt more when i touch exactly where the pains coming from? I actually rubbed one little spot where it hurts. and then had a weird sensation near the back of my head where the AVM is, like..(this is the only way I can describe it) like something moving in an oozing fashion ??? Hard to describe I get it every now and then. And that freaks me out. What is that feeling? Blood moving?? It feels so wrong :S and I get this other pain going from my chest, up through the side of my neck to the back of my head. does anybody else get that? that feels wrong too !
Infact this whole thing feels wrong. I feel wrong. Im getting worried Im in danger...
I also have pain in my head where the AVM is, and in other places on my head, every day and night. I feel like I can barely do anything anymore because moving in certain ways like laying down and bending over, makes it worse. Ive heard you cant do anything that raises your blood pressure. One morning at my friends house I woke up, and I was in the WORST pain the STRONGEST headache Ive ever had. out of the blue. I drank the night before. it was as soon as I woke up. I rolled around in agony holding my head and eventually it went away. Would that have been a bleed? I cant even describe how bad the pain was it was severe. I had a ct scan since but i dont know if it showed blood. it showed peripheral calcification? Im Not sure what that means ??
I really need help understanding all of this Im scared :( and alone I cry every night Im crying right now :( I dont know if I should be in hospital or not?? after my MRI the doctor briefly saw me and told me , when I asked if I would be okay:
"your brain might not be functioning properly. but it IS functioning. so, we'll just leave it." I tried to press further and he said again "leave it."
He wouldnt even listen to me when I tried to explain the health problems Ive been having associated with it. He said I wouldnt be experiencing anything from it. BUT I AM ???
Hi Jessica )wave)
This is what you said below....
after my MRI the doctor briefly saw me and told me , when I asked if I would be okay:
"your brain might not be functioning properly. but it IS functioning. so, we'll just leave it." I tried to press further and he said again "leave it."
It sounds like the doctors are aware of your situation and thinking it through carefully.
Try not to worry as it is in hand with the doctors.
flower
x
Hi Jessica. There is a sub-group here you may wish to join…
http://www.avmsurvivors.org/group/australianavmsurvivorsgroup
cant I talk to people who arent in australia ?
I dont think its in the RIGHT hands if this same doctor told me my symtoms are nothing to do with an AVM. Headaches and seizures are nothing to do with AVMs ? I think thats wrong...
Hi Jessica. Welcome and yes, you can discuss/talk with anyone on this site. I think Barbara was just offering you a link to other AVMers in AU, probably so you could find a better DR. Reading your profile, I wouldn't hang with a DR, even if he were the best in the world, if he won't LISTEN to me. Just brushing you off would not set well with me.
I'm assuming you are on anti-seizure meds, and you probably know Drs say don't drink, or at least don't drink much as alcohol does affect anti-S meds. Your decision though.
I have no guess about your symptom/causes, but if it were me, I'd be going for a 2nd opinion. Things happening in your brain that didn't happen previously should raise red flags, especially dizziness, etc.
Best Wishes,
Ron, KS
You can talk to anyone on here. I often chat with people in Europe…Asia etc. I happen to live in Tennessee. There is a chat room on the lower portion of the main page!
I know it is scary to be told something is wrong with your brain. Migraines…headaches and seizures are quite common on this site.
I mentioned the Australian sub-group because they quite often have luncheon get-togethers. A lot of members like to meet other AVM survivors face to face.
Just like Barbara and Ron said, sure you can...(thanks you two) :J But sometimes people in that area are more familiar with doctors there or maybe have some better advice. It's worth a shot. And relax, just joining a regional group doesn't mean that the rest of the site can't see you or you can no longer post. I know you're scared, I know you feel it's not "normal", but although the doctors might not be aware of everything with AVMs, they are doctors and will try to do the best for you. My advice? Join the group Barbara recommended and get some more information there...and in the meantime try (I know it's hard) to relax.
Oh okay, I understand now :) How do I join groups ? I wouldn't mind joining that one so I could find a dr and meet people. Not being listened to by a doctor is so FRUSTRATING! I actually told a hospital years ago I had pain in the back of my head and wanted a scan. she laughed. and pat me on the shoulder, and she looked at my mum and said "have we got ourselves a hypochondriac have we?" and then said "we have nerves in our heads. its just the nerves they're sensitive of course they'll hurt abit when you touch them" and i said "but my head hurts there even when I'm not touching it." and she said "you'll be fine" and walked off!!! Turns out I was having pain at the back of my head for a reason ! Ive already been annoyed about that, how it could have been diagnosed earlier. So I was definitely not happy at all leaving the hospital with NO good information he didn't warn me of dangers, tell me what to avoid, he didnt tell me a thing really. I've had to try and research it all myself, and this is the first time I've spoken to people who also have AVMs, at least now I can get real information from peoples experiences. That severe pain in my head episode happened a year or two ago, I only just found out about the AVM the end of last year, so I wasnt on medication at the time and I didnt know I shouldnt have been drinking. Ill take your advice and go see a doctor for a second opinion, thankyou. Wish me better luck conversing with this next doctor lol :)
Okay I understand now, thankyou :) Ill add that australian group that would be nice to meet people face to face.
Also Jessica, In the upper right corner of this page, you can type in Doctor Australia -- comes up with 3 pages of posts. Might be comments for/against a doctor near you.
Best wishes,
Ron, KS
Thankyou :)
Thankyou for replying and thankyou for the advice :)
Jessica..If you don't feel that your current doctor is understanding what is happening, get a second opinion so you will at least know your options. I'm not sure if you live close to Lesley (one of the Moderators), but she was having partial seizures and she found a doctor that has helped her. Stay Strong, Jessica....To be honest, when I didn't feel safe with my first doctor, I found another one and he was fantastic...So you might want to think about that!
Hi Jessica,
Your experiences with the killer headaches, the odd flashes of light and whatnot sound very similar to what I was going through when my AVM first decided to make itself known. And, much like you, the first neurosurgeon that I met with said that he did feel it was worth performing surgery because there was no active bleeding and he felt that surgery would cause more harm than good. The one thing that he did do was send me for a CT scan every month for a year, just to keep an eye on everything. He also insisted that I avoid all alcohol, caffeine, aspirin, ibuprofen, and basically anything that can thin the blood or increase my blood pressure. If I remember correctly, his reasoning behind this was that if my AVM were to start bleeding, higher-pressured, thinned blood is pretty much a worst-case scenario.
This remained the same story I got from any neurosurgeon that I met with for 5 years, both before and after my eventual craniotomy. Since I had my surgery almost 7 years ago, I was given the "all clear" to have caffeine, take medications that thin the blood, etc., but due to the fact that I am on anti-seizure meds, it is still advised that I stay away from alcohol. Fortunately, I have never been much of a drinker, so it's not something that I miss, however I do notice that if I have more than a single beer, or even if I drink one too quickly, it is enough to leave me feeling like I could suffer a seizure at any minute. So, I have decided to shy away from drinking... Simply not worth it in my opinion.
All that being said, I met with 4 different neurosurgeons, had three cranial angiograms and more MRIs than I can remember before any of them was willing to operate. Even then, every one of them insisted that my AVM was in a low-pressure area of the capillaries and there was no rush. Come to find out that my AVM was formed by an artery and had it ruptured, I probably would not have made it to the hospital alive. What I am saying is that not all doctors diagnose things properly, and in a situation like the one you are dealing with, it may not be a bad idea to seek the opinion of another specialist.
I wish you the best.
Jessica, I just want to stress what some of the others have said. Get another opinion. Get several other opinions. It's so important to find a doctor that you trust and that you feel is listening to you.
Hi Jake M :)
Thankyou for writing to me
Everything you said was very informative.
I think I'm going to stop drinking now too,
And go find a new doctor.
I probably wont write as much as you have
Im really tired I cant sleep anymore.
Im hearing more and more about these things you should avoid to keep your blood pressure low, since finding this site,
And its really helpful because my doctor didnt tell me a thing!
And I wouldn't have had a clue otherwise. Im so glad I found this site.
When you had your surgery what happened when you woke up?
Do they give you heaps of blood tests ?
Can you talk straight away after it ??
Okay I'll try to speak to other doctors I hope I can find one that listens its so frusterating when they dont..
Go see different doctors, make them listen to you, you're the patient!
hope you feel better :( xoxo
Hello Jessica, sorry to hear about your problems. I am in Indiana, U.S.A. Don't be hesitant to see different doctors. I went to three neurologist before finding one I liked and actually listened to everything I had to say. As far as the headaches go, I also have them and they emanate from my AVM location as well. I find that vicodin and ice packs help. Not much, but it takes the throbbing sensation away. Welcome to this site and know that there are many people here to help and support you. Jason