I am COMPLETELY new to the AVM "diagnosis". Really wanted to join group just for the simple fact that I believe it will be good for me to interact with others in the same situation. Family & friends are great but have NEVER been in my situation! I have 2 kids a 3 yr old and 5 month old. I can't drive until at least november bc of a black out/siezure maybe even later bc of recent episode. I was put on the generic brand of Keppra 500mg on may 26th but it just doesnt make me feel like myself!! No one seems to get it!
Hi Mrs. Dodson. A lot of people on here are on Keppra. Sometimes it takes a while for the body to adjust to it. If not there are several other types of anti-seizure drugs out there. Go ahead and scream and shout on here if you want to...we've all been there.
Thank You so much! Kinda feel stupid at times bc others act like its no big deal too have an AVM. So glad to hear that others feel the same way I do
Barbara H. said:
Hi Mrs. Dodson. A lot of people on here are on Keppra. Sometimes it takes a while for the body to adjust to it. If not there are several other types of anti-seizure drugs out there. Go ahead and scream and shout on here if you want to...we've all been there.
Brain AVMs occur in less than one percent of the general population. I did a search on here for the word Keppra...
http://www.avmsurvivors.org/main/search/search?q=keppra
I am pretty sure that everyone has told you to have a positive attitude. Easier said than done when you do not feel well. However, a sense of humor will get you through some of the tough times ahead.
You have one major blessing right now...you have not had a major bleed. I will be praying for you!
Welcome Mrs. Dodson and am so glad that you found this online support site! Everyone on this site is so wonderful and is here for the same reason as you --> the interaction with others as we recover from our AVM diagnosis/treatment keeps us all hopeful and the outpouring of support and prayers is amazing.
Hang in there ... it will get easier!!!
- Michele
Mrs. Dodson,
We do all understand. We're in the same boat -- including having others not understand what a big deal an AVM really is. As far as the Keppra, my daughter was on it for a while but had different side effects. Doctors switched her to Depakote. There are many anti-seizure meds out there, sometimes it takes some time to find the right one or combination or meds.
Barbara is right about the biggest thing going for you right now -- no major bleeding. It allows doctors time and options that wouldn't otherwise be possible.
In the meantime, feel free to vent your frustrations. We do all understand. Some of us are in the exact same boat as you, some are more recent AVM victims, others are long-time AVM experts. But we do understand.
Best wishes,
Tina
Hi Mrs. Dodson & welcome! I too have a hard time with this & my family tries to tell me not to worry about it & it’s not a big deal. I get very frustrated, I realize I have not had a bleed-but you still think about it every day & wondering if you will have a bleed the next time you start getting a headache or something doesn’t feel right! I wish you the best of luck!
Mrs. Dodon... Welcome and glad you found this site. People that tell you it isn't a big deal don't know what they are talking about and they have no idea what can happen. Like many people on here, I had a bleed and thankfully someone called 911 for me, who knows what would have happened to me. In the last few weeks I've heard 2 seperate stories about mothers who had 'the worse headaches of their lives' and went to bed to sleep it off. Both died in their sleep. Later discovered they had hemorrhages. This totally pisses me off... If the symptoms were more widely known and these women knew enough to ask for help, they may be alive today.
I also have small kids, 6 and 3. Take your health and well-being so seriously, fight for your health and for your treatment, be your own healthcare advocate and be the squeeky wheel so things get done! There is nothing more important right now, you need to be well for those kids. Surround yourself with supportive people, that is what you need. And ask for help from those supportive people when needed. If they 'get it' they will be there to help.
Sense of humor is KEY!!! I try and joke and laugh whenever possible. Just yesterday, I bought my son some fake dog poop to put on his fathers computer. Yes, crude and gross, but my son loved it and everyone had a great laugh about it. Little things make a difference, truly believe that.
Hang in there... Best of luck! ~ Sue (GO BRUINS)
I totally understand. My AVM bled 18 months ago but recently had a seizure. No more driving. On Keppra and Topomax. Feel horrible, tired and depressed. No one else understands at all. They did recently lower the dose and I am starting to feel a little better. See if your doc can lower the dose at all.
Thank you all for the support!! Its hard to be positive when so many feel like nothing is wrong! Just bc you cant see it doesnt make it ok!! Its your BRAIN one of the most vital organs there is without it your a vegetable! Yes I undertand that this can occur MANY other places and ALL is bad! Instead of lowering my medicine they have increased it from 500mg to 750mg! If I have another we"ll increase it again! Was starting to feel better then all of a sudden start feeling like crap all over again. I am very blessed to have not had a bleed and feel soooo bad for that ppl that have! have always had migrain headaches and one MAJOR one when I was pregnant with my 3 yr old!
Hi Mrs Dodson,
I'm in the same position as you - I have known about my AVM since February 2011 and this has finally given me answers after suffering with various symptoms from as long ago as I can remember, including seizures as a young child - I'm 42 now!!! I believe too, that there was a change when I was pregnant and then had my 6-year-old son.
Yes, this is very scary and I am so grateful for this website! Some of my AVM is visible, I have drainage veins on the left hand side of my nose, so I get a reminder every time I look in the mirror. My husband is as supportive as he can be, although I think he's trying not to think what could happen. I haven't had any bleeds, by I'm incredibly scared because I don't want one to happen and then be left in a worse position. My symptoms have got considerably worse since Easter, I have a varix (type of AVM) that affects my left eye, I have scalp problems, my nose issues and a vein that sits on my left lip on occasion.
I hope that you find much support here, people on here are fantastic and hearing people, like you, having similar feelings is reassuring, and makes you really feel like you aren't alone.
I have migraines too, although they are centred around my nose and eyes, so now I'm thinking "hmmmmmm!!". All starting to make sense.
Stay strong and positive and it's great advice above to keep laughing.
Take care.
Dionne