I am sorry to bring this up again, but....I am having headaches everyday. I have had them everyday pre-surgery. They vary in location and they vary in how they feel (sharp or throbbing pain). I have a treatment plan that is working fairly well.  I take 200mg B2 once a day, 200mg Zonegran once a day, & 25mg Indomethacin as needed (every afternoon!). Basically, I can calm my vessels enough daily to deal with them and function normally.

So, why am I asking questions? Because I am scared. When the headaches are located "within" my grafts they hurt on a whole new level. The pain is very sharp, piercing, and to be honest terrifying.  I feel very alone and helpless when this happens. It feels like something is going wrong...very wrong. I wrote Stanford about my headaches after my surgery and they said, as they said all along, that the surgery does not necessarily get rid of headaches. Fair enough! They also said that headaches could be vessels getting new blood.  Well, my surgeries were in July of 2005 so I would think my vessels would have been "reinvigorated" by now. 
So, what are my questions?:
*Is this worth asking that a new MRI done?  (I am scared of doctors seeing me as crying wolf.)
*Should I write to Stanford about this?
*Does anyone else experience headaches in the graft region? Any word about why?
*Anyone have any additional thoughts?
Thank you all so much for providing warmth and kindness always. This is such a safe place where I find I can be honest and not feel so alone.
Hugs to all,
Steph

Diane,
Thank you for your kind words and advice,  Sounds like your headaches are around your grafts as well.  Doesn't this kinda freak you out or am I just being paranoid?  It is so hard because I found my MM by listening to my body, but now it seems like I am being told to ignore my body and just live my life as if everything were normal and a-okay.  You are right, I should go see and will go see my doc. Thank you again and I love your Moya Moya o' Boya Boya...so clever, made me smile!
Steph

Hi Steph!! Long time since we last talked.

Sorry to see that you are still suffering from headaches,
I do still experience headaches, but I know what my triggers are now. When I was experiencing them daily, I DID have an MRI to check that everything was ok to put my mind at ease, and I now know that nothing "bad" (like lack of blood flow) is contributing to them, so I don't stress as much about them. But saying that, I am now 6 years post op, and was having 6 monthly MRI's to keep a check that everything was fine, and yearly MRA's for the same reason. Only after the fact that both my neurosurgeon and my neurologist were happy with my progress, I no longer require them, but both have stated that if I experience ANYTHING that I am worried about to see them straight away. So I still have that aftercare should I need it.
I believe that you should still be having REGULAR MRI's until you and/or your doc are satisfied that everything is OK. It may just be that headaches are part and parcel of what you are going through, but you need to put yourself in the right situation to accept that this is so, and by doing that I mean exhausting every avenue first - getting an MRI, talk to your specialist, write to Stanford, whatever it takes.
It is ultimately your health and it is important - please don't ever feel that you are putting anyone out over your concerns, it is their job to follow through with your concerns. You are entitled to your rights to be concerned and if they are good enough at what they do they should move heaven and earth to allay your fears, otherwise it may be time to change your specialists to someone who is interested and attentive to what you are going through with MM.
Do you do any physical excercise? I found that really helped with my headaches as it makes me feel as though my blood was really pumping through, when I work out. It may not be your solution but it may work.
Indomethacin is an anti inflammatory drug, so I am thinking that it doesn't actually work as a pain killer as such, but alleviates tension that causes the headaches, so why not try relaxation techniques like headphones and a soft meditation cd in a dark room? Again it might not work for you, but just some thoughts.
It really annoys me that the medical profession are motivated solely by the cost of procedures and they won't order MRI's because they are expensive, but sometimes health is more important than money and you need to kick butt and demand to get to the bottom of this. In the end you will feel better, knowing that nothing is wrong and you still have us here to help when needed
Hope this is of help to you Steph, keep your chin up and be pro active in your cause!!!
Moira

Hey Steph,

Nice to hear from you.  I hope you feel better soon.  Definitely contact the doctor if you are having headaches on a regular basis or if you feel any discomfort that is making you uneasy.  You know your body best.  

I too get headaches often (I'm actually home from work today as my stress has been up, so my headaches are increasing).  I get them so often sometimes that I don't even notice anymore.  Mine are usually the dull and constant kind.  Usually rest helps, and when it doesn't, I add tylenol to the mix.  Every once in awhile, I get a sharp pain in the graft areas.  Rest in a quiet corner usually resolves that.  

I would also ask if you've been doing anything different lately?  Drinking less water?  Not taking medication as regularly, or taking new medication?  Stressful times?  These things all make a difference.  Sometimes, I don't even realize that my meds have changed (I'm very forgetful) and that is what causes my headaches.  

As for exercise, I think everyone is different in this department.  I've been trying to get on an exercise plan since surgery.  I would love to be like Moira (who admirably exercises regularly) but every time I start, I get headaches and REAL tired and exhausted.  Baby steps are important.  So do what you can, but don't push yourself too hard.  

Let us know what the doctor says.  You're in my thoughts.

Hugs,
Trina

Oh my goodness,
You are all so kind and full of wonderful and helpful advice.  I will definetly call my docs and write Stanford just to give them a heads up. Maybe I will even get a little pushy and ask for an MRI!!!
Trina, my headaches sound a lot like yours.  Extra-strength Tylenol helps me too when they get real bad.  I also have some anti-nausea meds that I take that helps me sleep when they get real bad.  Treating the pain isn't necessarily my problem, it's the anxiety the headaches stir-up.  They are constant reminders of the MM and even though I have had surgery (trust me I thank god for that everyday!), it is hard to stop being anxious about my health when I have such sharp pains around my surgery-area.  But, maybe with all your wonderful support and some insight from my docs I can find some peace of mind. 
You all are the BEST!
Tight hugs all around,
Steph

I started having headaches almost everyday about 6 months ago. Didn't have migraines but enough pain to send me to my neurologist. Was told the headaches were from tension and stress. Was put on Lexapro and it has helped.
   Skay

depakote

I was having headaches for the last six months and was put on Lexapro about a month ago. The doctor told me mine were caused by tention and stress. The Lexapro has seemed to help. Still have some headaches but not as often or painfull. The Lexapro seems to be working for me.
   Skay

hey,
Is verapamil for LOWERING blood pressure?  If so, I can't take it, my bp is much too low all ready.
steph

Thanks emily! I will speak with my doc about it!

Hello everyone,

I thought i was the only one experiencing these headache.  my headaches are really scary.  My headache is on the side where i had my surgery.  I am trying to get an appointment at Standford this weekend to have things checked out.  Wish me luck

Cheryl

My STA-MCA bypass op was done 6 months ago. I started to have the painful, stressful and tight graft trouble about one month ago. I'm having trouble walking around because my operated area feels really stressful while I'm walking. Went to the hospital two times where I had my op, they didn't think it was a problem. My surgeon also didn't think a 6 month MRI check was necessary for me. I'm seeing my neurologist at the end of the month and I believe she's going to schedule something for me.

I didn't really have any headaches or migraines before, but now this is one of the symptoms that baffles me the most. Here in my country we only have very limited info for patients on mm, thanks a million for everybody here, especially for DJ's great contribution, that I could learn a lot of invaluable knowledge about mm, that my understanding on the symptoms before or post op is not so stereotypical anymore.

Thanks again, everyone! Nobody is alone on this.

Ben

I haven't been online for quite a long time.  I had a terrible night last night.  I was in bed and my husband rolled over and some how hit me right in my right side scar.  I thought my head was splitting in two!  Before now I haven't needed any pain meds(thank heavens), but today I have taken 1500mg of extra strength Tylenol.  I was so happy not to be taking so many meds.  Will the scars ever be better? It has been over 18 months since my surgeries at Stanford.
Love you MMers!