Not sure whats going on

Been having really bad preesure in my r/h frontal lobe where my avm is, dizziness, and weakness in my left side for about the past 2 days. It started with me waking up in the middle of the night with thousand thoughts going on and I couldnt collect one and I was shaking. I dont know if its leaking or what. I’m pretty freaked out and would go to the hospital but I dont have insurance. I havent had a mri since they found my avm back in 98’. I do have major anxiety issues from this aswell as chronic sinus issuses. So I’m not sure if its one or the other. So what does a leak feel like. Does any of this sound like a leak.I feel dumb making this post but I’m just really freaked out. Any thoughts or comments would appreciated. Thanks.

I’ve never had a bleed so I won’t pretend to know what it feels like. I would like you to get checked out for two reasons. It very well could be a bleed or swelling or who knows… And if it’s nothing then at least you will know. The stress of not knowing isn’t good either.

Hey JD Sorry to hear you are feeling bad. But regardless to weather you have insurance or not—I suggest you go to the hospital. A bill is a bill. At least you are allowed to make payments. But please do not sit and suffer unnecessarily.

Thank you both for the replies, I guess I’m going to go sit in the er for a few hours.

Go see a doctor or at least talk to a nurse as soon as you can. This might save you a little money. If they think it’s serious they will ask you to go to an ER. Saving your life is the most important thing. If your AVM ruptures a variety of things can happen but it’ll be very serious and you’ll probably end up in the ER anyway so I doubt it has… but then again I’m no medical doctor. Oh and I don’t have insurance either. Nothing is too dumb to post. Good luck and hang in there.

Hi JD,

If you’re worried you’re having a bleed, please go to the ER, where they have to treat you regardless of ability to pay. You can negotiate with the hospital afterward to lower the bill. Another option might be to call the doctor who treated you and ask his/her advice over the phone. A bleed is serious enough that you’re probably wise to take a better-safe-than-sorry approach.

The feelings you’re having could very well be anxiety-related feelings, which (as you probably know) can mimic almost any condition you’re worried about. People usually try to counteract anxiety by taking deep breaths, which actually makes things feel worse–you need to breathe deeply OUT to get through an anxious spell. (This is why people sometimes say to breathe into a paper bag when you’re anxious–it brings your oxygen levels back down to normal.) It’s something you might want to try while you’re sorting out what’s going on.

Seeing a doctor for AVM checkups is a must. It looks like you’re in Missouri, so here’s a link to options for the uninsured in Missouri, with a phone number you can call for help:

Missouri has a high-risk insurance pool for those who can’t get coverage on the individual market. Here’s their info:

You can also search for keywords like “uninsured” and “insurance” on this site to find out what other people recommend.

thanks JH for the links. thanks for the replies again, well im home and my ct came back normal, but i still dont feel right. alwell we’ll see what happens.

Feel better. I’m glad you went.

JD said:

thanks JH for the links. thanks for the replies again, well im home and my ct came back normal, but i still dont feel right. alwell we’ll see what happens.

Glad to hear your ct scan came back alright. If your physically ok maybe you should try some antianxiety drugs. Not sure how you feel about taking pills but it helped me greatly. I take Xanax .25, lowest dose, and see a neuropsychologist monthly and its done wonders for me. Also, if you ask the doctors about your sinuses they can see them on the ct scan and tell you if there is anything going on with them to cause the pressure you are feeling. I stil feel pressure in that area and my AVM is gone. No one can tell me why. You can feel all kinds of strange sensations when yor brain is involved.

Hi JD. When I read your post, my first thought was that you should go to the ER. A bill is a bill and nothing in comparison to your life. All four bleeds I’ve had, I’ve experienced numbness and tingling on my left side and then I knew I needed to call someone and by the grace of God, found the will to pick up my phone and do so. The entire ride to the hospital, I’ve felt like I was in a daze and apparently each time I didn’t answer certain questions correctly but the necessary info I was able to give. Money is money but YOU are YOU. In answer to your questions as to what they felt like, it felt like there was a raging burning sensation in my skull that wouldn’t stop. I had a horrible taste in my mouth that water or juice wouldn’t take away. If you happen to be feeling a little calmer now or a little better it could be because the bleed has stopped but this means if it happened the blood could be settling and pooling in your head. I hope you make the best decision for you. Don’t do it for anyone but you. My response is just a suggestion and the info provided just to share my experience. I wish you the best and God bless you on your journey.

My goodness… I failed to read the entire thread before I posted my response. I’m glad that you made it home ok. If you can, request a copy of your records from the hospital (not sure the charge but it shouldn’t be a huge amount), but you’ll have them to hang on to and if you need to be seen in the future you can take them with you and not have to wait for anyone to dig them up. Best to you.


i would suggest go to the hospital. although they will bill you for it, MOST hospitals have a charity program in which you can get the bill paid through that. i know i have no insurance and therefore i dont go to the doctor unless i absolutely have to. its better to have that bill on your credit than most other kinds. plus most companies when viewing your credit hold medical bills in little regard when considering your finances. so i suggest you know rather than take a chance. avms can rupture bleed or leak and neither are good for you. so check it out and let us know what happens.

is dizziness normal for having an avm?

ur asking tje wrong guy, im dizzy 90% of my life…

i went, and tey only did a ct and said it was OK, well ok i dont feel that way. so i have anothher bill i wont pay unril i have a real job like i should…but thanks or the post and concern.

Hi JD,

Just checking in…are you trying something different for the anxiousness? The Mayo Clinic has this page on nonmedical ways to cope: and of course you can Google around for things like “treat anxiety naturally.” Hope you’re well!


Just a thought, but you could always try Niacinamide. Its just a B vitamin but my doctor put me on it to ween me off my Xanax. It works on the same receptors in the brain as the Xanax would. works well for me and its a more natural way to go. I take 500 mg up tp three times a day if your interested.

well i was just asking because i am dizzy 24-7 also…and it is really starting to scare me…just found out i had this like a couple weeks ago and didn’t know if it causes the dizziness or not…i also have neck problems i’m going to the neurosurgeon for also in the same appointment…that could be causing it too…so i’m sooo confused right now

I’ve been getting dizzy spells as well lately & have been dealing with neck issues for the past year! Don’t know if it’s from my AVM, but hope to get another MRI early next year. Good luck & keep us posted!