Herceptin Headache

My girlfriend has been getting headaches for the past several weeks (since 1/1/09).  They last all day, every day.  Tylenol does not help.  MRI negative.  The weird part is that she has been on herceptin for almost a year with no prior headache issues

Only  had 3 infusions, no headaches, but achy legs and joints.  I think theres all kinds of side effects from herceptin noone tells us about!!!

ejil, i believe its the herceptin.  I had achy legs during chemo too, and ive noticed there worse for a few days after my herceptin!!!  Gonna see what my doc thinks, i just kinda realized it started up again with the herceptin!

I will join the headache group on herceptin as well, man they hurt. they seem to get the left eye and ear area and of course the whole area around it.  I also find that after my herceptin my neck feels sore, sort of stiff and feels like it's going to explode, it's the only way I can expalin that. I goes away after about a week and half.  Go figuire, anyone else get that?

This thread terrifes me.

Headaches/migraines have been the bane of my existance for 22 years.  The headache pain you ladies are describing sounds similiar to a milder migraine.  (Full  blown ones leave you vomiting, unable to move, in true agony for 18 plus hours)

A week ago I had a unilatral mastectomy with TE, and just as I feared, the morphine gave me a horrible migraine.  I had warned my doctors that I would need imitrex in the hospital but the nurses were too ignorant/busy to understand the dosage so I didn't get enough to keep the pain at bay.  I was left with the Sophie's choice of refusing morphine and suffering the surgical pain to keep the migraine from returning, or dealing with migraine and getting surgical pain relief.  (But, since migraine makes you vomit then you know there isn't much relief).    If you have never experienced a migraine, you might be surprised that I chose to the surgical pain - migraine is the worst pain I've ever experienced and I had one 48 hour unmedicated hard labor.

If you knew me, you'd realize that when I say I was left crying - wailing - in pain in bed waiting for imitrex would be almost impossible.  She had it in her hand at 6:00, left to do something and didn't come back until 7:30, leaving me in agony.    I don't cry, ever.  But it was THAT bad, I completely lost control.

Imitrex is an expensive medication.  I only get 9 pills and 4 injections a month, which is not enough, so I also take fioricet and norco on a regular basis, and have for 22 years.

Reading that herceptin can cause a headache terrifies me.  Honestly, I don't think I'll get through herceptin treatment unless there is a plan for dealing with any resulting headaches, which for me are likely to end up full-blown migraine.

But, to give you ideas - you might ask your doctors about imitrex and see if it's indicated for people who have not been previously dx'd with migraine.  Also, botox has been used to treat head pain/migraine.   I have been doing botox for years, first given to me by my neurologist.  It stopped working for my migraines but it did at first. (I still do it because it still helps with migraine related vertigo - and cuz I like a smooth forehead now.    ) Maybe it's something that would be safe and helpful for herceptin headaches.  Worth an ask.

If anybody gets treated for these heachaches, please let me know what they give you.  I believe I'll start my chemo in November and then herceptin a few months later so I will be researching until then. 

I have always suffered from slight migraines with my period. Thes would consist of stabbing pain behind one eye, and and radiating pain from that point. It also causes stiffness in the neck. Tylenol used to work for me, but as the years went on, the pain got worse. Excedrin migraine usually makes the pain livable for the day, but I could not take it at night due to the caffeine content. I currently take imitrex with naproxen (treximet) for the migraines at night so that I can at least have a good night's sleep. It works wonderfully for me. However, I when I was first put on imitrex, I was informed that I could only take three a week, for a total of nine a month. I have not had the chance to ask my doctor if there are any alternatives. Since starting chemo and hercepten on March 1, 2010 I have had a constant migraine. (In fact, I have all of the symptoms I get when I get PMS each month, including acne and stuffiness. The thought of having PMS for a year terrifies me.) I did use some imitrex which helped, but I guess that I can not take more than the nine. I am getting the hercepten every week, so I just had a dose on Monday. My head is still killing me.

I am planning to see an acupuncturist on Saturday. It is not covered by insurance, but I am willing to try anything. I will also be talking to my doctor on Monday to see what else I can do or take for the migraines. 

 I will try to get back to let everyone know if the acupuncture helps.Depending on the migraine, sometimes chiropractic care can help. Chiropractors are often covered by insurance, so I would suggest trying that before acupuncture. 

I am very pleased to say that herceptin has not made my migraines worse.  In fact, chemo sending me into menopause seems to have <knock wood> tamed the migraines.  The thing that gives me a migraine now is leukine.

I tried tramadol for my migraine.  I'm surprised it worked for the above poster - most people agree it doesn't work on migraine and it sure didn't for me. We are all different!  But, it does act on opiate receptors so you can get addicted to it.  

I'm glad, Navygirl, you now have an understanding of what we migraineurs have gone through. I have often wished just one migraine on my doctor, boss, friends - just so they know.  And, I wish people would not use migraine and headache interchangably.  So many people say they feel bad from a migraine when they have a simple headache.  As you have discovered, they are not the same.

I digress.  Even for serious migraineurs, like me, herceptin doesn't necesssarily cause one.  I am still on weekly herceptin and will try to switch to every three weeks when chemo is over to see if I can handle it.  But, if not, I'll but the copay bullet and go back to weekly to save my head.