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headaches sending me back to the NO

mccindy
Posts: 82
Joined: Jun 2013

I called my NO yesterday because I've been having worsening headaches for the last month and now they are nearly constant.  My next MRI was supposed to be in April but she is having me come in next Thursday to have an MRI and see her.  I'm a little nervous.  She told me intitially when I called yesterday that she is pretty sure the headaches are unrelated to the tumor because mine is a grade II, slow-growing tumor and there was nothing on my MRI in October.  Then today her office called and she is fitting me in on her day off.  I'm hopeful that we're just ruling out the possiblility of recurrence and then moving on to find out what else might be causing the headaches.  but I will be nervous for the next week, waiting to find out what's going on inside my head.

sadinholland
Posts: 236
Joined: Apr 2011

I will be praying for you. It's good she is bringing you in, just to be sure. I can't say dont be nervous because I am nervous for my husband every day. Keep your head up, think positive, and do your best not to worry too much. Worrying itself can cause headaches. I wish I could find the comforting word that you ALWAYS have for everyone else on this site. Keep us posted, and God Bless!

 

mccindy
Posts: 82
Joined: Jun 2013

Thank you so much for your thoughts and prayers.  You are just as helpful and supportive to me, I must say.  So far I'm not worrying too much, just trying not to think about it.  In one way it's a good thing because the headaches have been so bad I just want to find out why I have them and make them stop, so it will be good to have regrowth ruled out and keep searching for the reason. 

sadinholland
Posts: 236
Joined: Apr 2011

Just thinking about you and hoping you are doing ok! God Bless!

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

McCindy,

    Will be thinking about you and prayer for wonderful results.  It is wonderful that your NO will be seeing you right away, that will relieve

your stress.  If your MRI in October was clean, this one should also be clean also :o)   Think positive thoughts and remember to always

look forward, take one day at a time and everything will work out.  Praying for comfort and great results in the next coming days.

(((HUGS)))

Carol

mccindy
Posts: 82
Joined: Jun 2013

I am pretty positive about the MRI, my NO is quite sure that there won't be any new growth on it, since my tumor is slow growing and the October scan was clear. once I get that good news, she'll refer me on to a headache specialist to determine what's going on... hopefully I can find something out soon and get some relief!

lyndsey123
Posts: 1
Joined: Jan 2014

I've been having headaches for more than 10 years. My head will hurt if I focus on one thing for more than one hour. I had brain check and the headache has nothing to do with it. Finally, the root of the problem has been found, cervical spondylosis. So, my advise is checking your cervical spine.

mccindy
Posts: 82
Joined: Jun 2013

I have had spinal problems in the past, all lower back though.  My headaches have been accompanied by some neck pain, although my headaches are all in my left temporal area.  It never hurts to ask about something that might not have been thought of previously.

blackngray
Posts: 11
Joined: Mar 2011

I understand what you are going through. I never had a history of headaches until I was diagnosed with brain cancer in 2010. I've seen 2 neurosurgeons and tried many different medications and a nerve block. What currently works for me is the preventative topamax at 100mg two times a day, morning and night-same time every single day or a headache will strike. I also take boswellia from vitamin world their brand two pills a day twice a day to reduce inflammation in the brain. My oncologist prescribes prn lortab for the pain that topamax cannot relieve. Which is several times a week, half a lortab, if that. Nothing else seems to relieve these headaches. I've tried naps, but I wake up with the same pain I went to sleep with. my team of doctors don't seem to understand. They prescribe and prescribe different types of headache meds that do not work, or my brain and body gets accustomed to. There may even be a side effect that prevents the better good of that med. It's a give & take.

I hope I've helped you with my description and experience. Good luck also!!! 

sadinholland
Posts: 236
Joined: Apr 2011

I was just thinking about you. How did your appointment go?

mccindy
Posts: 82
Joined: Jun 2013

Hey there!

My MRI showed clear.  No regrowth, just some scar tissue still forming.  My NO says things look good, I can wait six months until my next scan.  She says the headaches are migraines.  I got chronic migraines all through my 20s, and she says that since they were on the left side of my head, same side as my surgery was, the disruption to my skull and scalp triggered them to come back.  They got much worse because the medications I was using to try and relieve them was causing stronger rebound headaches.  So, now I'm transitioning from Keppra to Topamax, which she says should help relieve the headaches while still giving me seizure control.  I am also supposed to double my magnesium intake and add Riboflavin daily as well, as use Aleve to help with some relief, as it doesn't cause rebound. 

so all in all, good news, and hopefully I'll be having fewer headaches and still have a good prognosis as well!

sadinholland
Posts: 236
Joined: Apr 2011

I'm sorry you are having headaches but so very glad it's not from the tumor growing.  Hope the topamax helpa!

 

Mannie
Posts: 51
Joined: Oct 2008

I am not an expert and this probably sounds crazy, but have you considered some of the headaches being caused by a bad pillow?  I'm not saying it is for sure, but it's something to consider. It's easier to change pillows than to start or wean off a new med.

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

That is great news, we all tend to worry or over worry, when health issues present, like headaches.  I ask my son all the time if he has headaches, and still do the run down list of questions his oncologist and radiologist gave to us.  Benjamin has been headache free since his tumor was removed, so like you we would be very worried about regrowth.  Just reading, your outcome, lets us know that one can have a headache and it is not necessary related to a tumor or regrowth.

Thank you for sharing your story, what an inspiration to all.

(((HUGS)))

Carol

mccindy
Posts: 82
Joined: Jun 2013

Thank you Carol.  I'm really glad it was just migraines and not the tumor.  It does seem like any time there'sa possible symptom, the mind turns to the possiblity of the tumor coming back.  My mother does that especially, she was very relieved to hear the outcome of my scan! 

edslas's picture
edslas
Posts: 19
Joined: Dec 2010

mccindy,

I also suffered from severe headaches throught treatment for my BT, and for over year past treatment. I wrote about all the things I tried on my blog www.edslas.blogspot.com. I am pretty happy today. In short,

  • Went to see a regular Neurologist. My Neuro-oncologist only cared about the tumor.
  • I got off the narcotics
  • Stopped taking Keppra
  • Started taking Depakote
  • Got a big pillow to keep my head elevated at night.

I really understand where you are coming from. Don't settle, keep looking for solutions.

mccindy
Posts: 82
Joined: Jun 2013

 

the NO thinks it's a migraine-related issue, since the surgery was in the same location where I used to have migraines.  She did tell me to stay away from narcotics, and is weaning me off the Keppra.  I am starting Topamax to replace the Keppra for seizure control, and also to help with the headaches.  She advised me to increase my magnesium to 5 mg and add 400 mg of B2 daily.  I've done all of these things and there has been an improvement, so I'm hoping as the Topamax increases things will improve dramatically.

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