How do brain met headaches feel?

Sherryg683 · 01-07-2007, 05:12 PM

Just a question for those of you who have brain mets. Exactly what sort of headaches have you experienced? Are they more in the front, around temple, in the back or all over? Do brain met headaches have a common characteristic. I have just had awful, consistant headaches that start from the back of my neck (mostly on left side) and run up to my occipital bone in the back of my head. They just don't seem to go away and it's been over a month. It also hurts on the right side sometimes, just not as bad. Sometimes it feels like a sharp pinch or stabbing and it hurts when I sleep. I had a brain MRI done a little over 3 months ago in the middle of one of these episodes and it all came back clear. I have other brain MRI's earlier when I was having the headache in the front (like sinus) and they were all clear too. I have had neck problems and my hubby and Oncologist seem to think they are because of my neck or stress headaches, someone even suggested migranes but of course I worry about the worst. I just feel stupid to keep asking for MRI's and they all keep coming out clean, don't want to be like the boy who cried wolf. I am just tired of my head hurting and don't like to take pain pills all the time. Can anyone who has had brain mets shed some light on how these headaches feel. I haven't had any vision problems or thrown up or anything...sorry to ramble...it's the headache causing met to do this..lol..sherryg683

MichelleMoon · 01-07-2007, 08:04 PM

Hi Sherry,

I was diagnosed a week ago with brain mets (happy new year) after headaches prompted me to have an MRI. My oncologist has been very good to order tests when I freak out and did order the MRI to 'put my mind at ease'. My headaches started in my front/facial area...mostly like a sinus headache. Then it seemed the pain became more random throughout my head. I convinced myself for a few weeks that it was holiday tension, or some pain my fear was creating. My brain mets are very small (all less than 5 mm) so both the oncologist and radiology oncologist really doubt these tumors were causing headaches. I guess we'll never know...just glad I caught it before I started having any more serious neurological symptoms.

Have you had an MRI recently? This was the first I had since become stage 4. I (wrongly) thought PET scans were superior and didn't question using MRI's for the head.

I'm sorry, because I probably didn't make you feel any better! Our minds play horrible tricks on our bodies. Best of luck and do keep us posted.

Sherryg683 · 01-07-2007, 08:38 PM

I had an MRI a little over 3 months ago, due to the same sort of headache I am having now...it was clean. Then I had an MRI 3 months previous to that because of the frontal sinus headaches I was having..they were clean. So I hesitate to be the "crazy brain" lady and ask for another MRI so soon. I figured I would wait till March when I get my next set of scans and just have them do it then, I really don't want or think it's necessary to have brain MRI's every 3 months like I am doing, I just wish these dang headaches would go away so I can relax..sherryg683

MichelleMoon · 01-08-2007, 04:47 AM

My doctor left me with the impression these brain mets just don't pop up over night and start causing headaches.

With your recent tests, sounds like you should go back to dancing with NED (I hope to be there after my WBR) until the next set of scans. I know it's easier said than done!

Take care, Sherry.

janet/FL · 01-08-2007, 06:15 AM

Michelle, are you not a candidate for gamma knife or cyber knife treatments? Why WBR, first.

MichelleMoon · 01-08-2007, 07:14 AM

I have 7 measurable tumors between 2 and 4.5 mm. The radiology oncologist is concerned there are more that can't be measured or seen yet.

Should I be challenging this treatment plan?

Barbara H. · 01-08-2007, 01:52 PM

My headaches were like tension headaches. That's what I thought they were. I was diagnosed in May 98 and did not become stage 4 until May 04. I had brain surgery for a 3cm tumor to the left frontal lobe. I am now NED in the head, but I have had to have radiation necrosis removed twice, the last time about 3 1/2 weeks ago. I went back to my classroom last week. I was tired, but had a pretty quick recovery. The most difficult part of the whole ordeal for me was the Decadron. It makes me quite hyper and not a nice person to live with. Now I have a few small bone mets, and will be deciding what to do about them in the next few weeks. I was on Navelbine since March 06. Navelbine kept them stable, but did not get rid of them. Right now I am only on Herceptin and Zometa, and it feels great to be off off chemo. I am not looking forward to starting something new, and depending on my markers I may ask to continue the break for a few more weeks.
Best wishes,
Barbara H.

Sandy H · 01-08-2007, 06:35 PM

Sherry, I am not a doctor so can not say for sure but sounds like it can be your neck. I have arthritis in my neck and so have been in and out of therapy for pain and muscle spasms while working in an office all day. Worse job anyone can have sitting at a desk doing paperwork and phone. I was doing well and then all of a sudden I was having headaches and just knew I had brain mets. My radiation oncologist thought I did and rushed me for an MRI the same day I saw him and complained. He asked me to come back the next day with my husband for support. I nearly freaked out and thank God I had someone with me that day. Well, it was a sleepless night but low and behold nothing showed up and it was determine to be from my neck so off to physical therapy I went. Having IBC I am at a high risk of it going to the brain but its been nearly 6 years and I am still here and no organ, bone or brain mets. Let us know what you find out but honestly, to me it sounds like neck. That in itself can be nasty to deal with but better then brain mets. hugs, Sandy

Sandy H · 01-08-2007, 06:35 PM

Sherry, I am not a doctor so can not say for sure but sounds like it can be your neck. I have arthritis in my neck and so have been in and out of therapy for pain and muscle spasms while working in an office all day. Worse job anyone can have sitting at a desk doing paperwork and phone. I was doing well and then all of a sudden I was having headaches and just knew I had brain mets. My radiation oncologist thought I did and rushed me for an MRI the same day I saw him and complained. He asked me to come back the next day with my husband for support. I nearly freaked out and thank God I had someone with me that day. Well, it was a sleepless night but low and behold nothing showed up and it was determine to be from my neck so off to physical therapy I went. Having IBC I am at a high risk of it going to the brain but its been nearly 6 years and I am still here and no organ, bone or brain mets. Let us know what you find out but honestly, to me it sounds like neck. That in itself can be nasty to deal with but better then brain mets. hugs, Sandy

StephN · 01-08-2007, 11:25 PM

Hi Sherry -
No fun to have headaches of ANY kind. I was fortunate to have no headaches whatsoever with my two brain mets that were growing simultaneously. They were not in an area where I would necessarily know about them from headaches. More the balance or nausea symptoms, which I also did not have.

The docs were amazed at the scans as I had made no complaints at all. This is just to say that regularly scheduled brain MRIs are the best way to catch brain mets as not eveyone does have symptoms.

I have always been hard-headed, but that one took the cake!

Hope you can find the cause so you do not have these periodic panics that can be so debilitating in and of themselves.

KathyA · 01-09-2007, 08:56 AM

Sherry good luck in your search for the answer. Get as many scans as you want. You never know. don't feel bad about it. It's your life.

Lien · 01-09-2007, 01:48 PM

Dear Sherry,
I don't have brain mets but do have headaches sometimes and they are really bad. Used to have them almost every day because of neck problems & food allergies. If I were you, I'd get myself to a good physiotherapist. See if that helps.

Good luck

Lien