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Permalink Reply by donnell baylor on March 16, 2011 at 5:52am

if you don't know is that you are having seizures that call you to have the headaches, but it is not the seizures that cause you to fall out. ask your doctor if you can you the med. that call topamax. it work but you got to work the use for your body.(i have to you 400 mg a day and depressing med. and high blood presser med. and it work for me it will make you sleep but you can live.) so ask you doctor about that med.

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Permalink Reply by Chris on March 16, 2011 at 6:27am

i wonder why we still get them even after the AVM has been obliterated!

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Permalink Reply by Deb (Sarah's mom) on March 18, 2011 at 10:36pm

My then-13 year old daughter's AVM bled last August. She pretty much has had a headache since then, some worse than others.   The pediatric neurologist thought she was having rebound headaches and took away all her acute pain meds (tylenol, ibuprofen, etc) and put her on "preventative" headache meds about 5 weeks ago.  we have been trying different meds and different dosages but she is still having them.  It is very frustrating so kind of sad to hear that these headaches could be an ongoing thing.  She has only been to school 1 day in the last 4 weeks and it is hard for us to understand what she is going thru so we try not to push her, but that is hard too.  I know i can barely take a day with a headache without popping a tylenol to help it and knowing she can't do that makes me feel awful.  We are kind of letting her tell us if feels like she can make it to school or not and it is usually a "not".  She is currently on the topamax twice a day as well, so Donnell, we are really hoping that helps her, too!  Does it take a long time to work?   Does the meditation really help?  Not sure how to teach a 14 year old how to do that.

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Permalink Reply by Patti on March 22, 2011 at 11:48am

Hi Ben,

  I get terrible migraines...ughhhh.  My AVM is in my brainstem (in the Pons) and is pressing on the trigeminal nerve...I think that is why mine are so terrible (I also have trigeminal neuralgia).  I think since AVMs affect blood flow and migraines involve the blood vessels and nerves, something is disrupted.  I did a million things to try and eliminate migraines (eliminating certain foods, stress, etc, etc), really the only thing that helps is medication. 

   I am curious about this also though.  I am tired of having so much pain :(

 

             Patti

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Permalink Reply by Ben Morrell on March 22, 2011 at 12:23pm

     Hi Patti,   I know what you mean.  I can't seem to go just one day without having a headache.    I also have cervical dystonia, which is from my avm.   I think thats a part of the reason for my headaches too.   I've tried shaitsu, accupreasure, and spinal decompression therapy for it.   And, all of those only work for a very short time.    Oh... I use to go to a masseuse.  Even though it felt good, the pain would always come back a few hours later.    So... I rely on meds (which I really hate to do) the same as you do.

 

     Deb,  Meditation does help.  It doesn't cure it but, it does lower the pain and makes it more bearable.    The easiest way is to focus on just one thing.   Perhaps she can focus on something she really likes.  Such as the beach or a park.  I myself, I prefer the mountains and being in the woods.    Another way is to focus on a candle flame.   The flame itself is mesmerizing.  Seeing how your daughter is 14.   You may want to talk to her about getting her an aquarium (it's just a thought).    I had a friend who meditated watching his fish.   

       Feel free to ask me about it, if you would like to.  I've been meditating now, for about 30 years (I think).   Boy!  I'm getting old.  LOL

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Permalink Reply by Patti on March 22, 2011 at 2:26pm

Hey Ben,

  I am sorry you are in pain too.  I really want to do accupuncture, and my neurologist did say they see success with it, but you have to keep with it weekly...and my insurance doesnt cover it at all, so it isnt an option right now (maybe if I win the lottery :) ). 

  I am glad meditation helps you.  I think I am going to give that a try as well.   Have a great day Ben!

 

        Patti

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Permalink Reply by Kimberly Anderson on March 22, 2011 at 4:23pm

Ben,

 I get them as well, but not nearly as bad as when I first got out of the hospital. (thankfully) I have asked my doctors numerously why I get them and they have actually told me I need to see my PCP, that they can't help me with that. I was really upset by that, but they finally got better. At least you doctor tells you they are a side effect from the AVM! ha I hope they get better. :-) Sorry I'm not much help.

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Permalink Reply by Deb (Sarah's mom) on March 22, 2011 at 7:07pm

Thanks Ben! We will definitely try this!!  

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