One-sided Headaches AFTER completing treatments

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06elise
06elise Member Posts: 70
edited March 2020 in Not Diagnosed With a Recurrence or Metastases but Concerned

Over one year post-chemo (AC-THP) and nearly one year post-Herceptin (a targeted therapy), and I started having headaches on the top-right side of my head. I recently read on another forum that someone else has been experiencing a similar phenomenon.

Anybody else? And if so, has anybody received a diagnosis??

My particulars:

First chemo Feb 2016
(Adriamycin/Doxorubicin combined with Cytoxan)

Last chemo Jun 2016
(Taxol combined with Perjeta and Herceptin)

Last targeted antibody Apr 2017
(Herceptin)

Surgery Aug 2016
(BMX with DIEP Flap reconstruction)

First headache Dec 2017 - Feb 2018
(Yes, it lasted two months!)

Continuing headaches vary in intensity, but not location: always the same spot on the top-right of my head. They aren't hitting me everyday, but I can't remember having two consecutive pain-free days.

MRI in Jan 2018, with and without contrast showed *nothing*.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    My suggestion was going to be MRI, but if lo Is like you’ve done that. Hmmmm. Perhaps ask MO for a neurologist referral

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  • lekker
    lekker Member Posts: 594
    edited March 2018

    I’m glad to hear that you had a clear MRI recently. One thing that can help the doctors figure this out would be to keep a headache journal - record what you’ve eaten, how you’ve slept, your activity level, medications (including over the counter and supplements), caffeine intake, unusual stressors, etc. You might find that it’s related to certain foods, or a bad night’s sleep, or work deadlines. I hope you get to the bottom of it soon

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  • Meg101
    Meg101 Member Posts: 175
    edited March 2018

    Hi 96elise: Your headaches sound like classic Migraine Headaches. I had them daily for 20 years until the medication Imitrex was introduced to the market. Nothing else took the headaches away including codiene, etc. Imitrex took those headaches away within 30 minutes. I still get Migraines if I eat Bell Peppers (any color), Tabasco sauce, Oranges, any food that has been smoked, alcohol, anything marinated, stress, and just before my periods. As Lekker suggested, keep a food journal to find out what foods might be triggering the headaches. Ask your doctor to presribe Imitrex for you. If Imitrex doesn't work, ask for Botox injections. My daughter also gets migraines. Her doctor referred her to neurologist who gave her Botox shots in her head, neck, and shoulders. She hasn't had a headache since. Best of luck to you. Headaches can be very debilitating, especially Migraines.

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  • KSteve
    KSteve Member Posts: 486
    edited March 2018

    06elise - I know this is going to sound crazy, but it could actually be shingles. I had the same thing happen a couple summers ago and the first thing I thought of was brain mets. So needless to say, when I went to my primary care (expecting to be sent for a brain MRI) and she said "you have shingles", I started crying (with happiness). We shared a laugh because she said that's not the typical reaction when she tells a patient that they have shingles. I always thought that was a disease that the elderly got, so it was a shock to be diagnose with it at 49. It can happen to anyone who had chicken pox as a child. Two days after the headaches started, I found a couple of blisters in my scalp and along my hairline. Worth a check! And medicine can help the degree of the outbreak if you get help quickly.

    Good luck to you. Keep us posted!

    Kathy

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  • Lilneenz
    Lilneenz Member Posts: 14
    edited April 2018

    do you have whatsapp in the states ?? I'm 0044 7854403642

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  • wallan
    wallan Member Posts: 1,275
    edited April 2018

    Your headaches do sound like migraines. I get migraines after BC too. The weather changing from sunny to rain or whatever triggers them. Also, if I don't have coffee (I drink one mug a day) I get a migraine. Im sure stress doesn't help.

    Migraines suck. Sometimes mine are so bad, I am vomitting. I love the painfree, no headache days.

    I hope you get to the bottom of it and get relief soon.

    BTW, I did get a head CT and a brain MRI and they were normal. I have been given imipramine (10 mg) to take before I fall asleep for preventation of the migraines. I must say, I don't take it because I am already on Effexor and synthroid and arimidex. I don't need another drug. Maybe I should try it... LOL

    wallan


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  • 06elise
    06elise Member Posts: 70
    edited June 2018

    It turns out my eyeglass prescription was WAY off in one eye... and for about ten days after getting my new glasses, I was headache-free! (Ten days beat my previous record by at least 500%)

    Of course, they're back again now. And still on the same top-right side of my head.

    • Nape of the neck: stress headache
    • Top center back of the head: dehydration headache
    • Temples: sinus headache
    • Top right: what the what??
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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2018

    Sinus pressure can cause headaches and since there are sinuses filling up our whole face area, it could be a congested area in one spot. I've had right sided headaches from sinus pressure.

    You could try a neti pot to see if that eases anything.

    Also, ear infection?

    And I know there was a virus going around last year (so probably every year just didn't know about it) that makes the neck/head/ear hurt for months.

    Thrilled your MRI was clean.

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  • 06elise
    06elise Member Posts: 70
    edited June 2019

    It's been a very long while since I looked on this forum!

    So here's an update:

    All of 2018 could be described as waiting 2-3 months for a new evaluation by a new specialist, followed by a few tests, followed by some head scratching, followed by a referral and another 2-3 month wait.

    My headaches now dovetail with a racing "butterfly heart" and lightheadedness during exercise 😫

    Months go by...

    My new cardiologist put me on a treadmill as he watched me generate a "flawless" EKG. Then after 5 minutes of very casual strolling, I "hit a wall", got lightheaded, then got a sudden pounding headache. EKG still fabulous; heart rate still climbing, as it should. But my BP _dropped_! No cardiovascular cause for it.

    Head scratching. Referral.

    Months later...

    My new endocrinologist ordered a bunch of unusual blood tests. He noted a marginal drop in a hormone the pituitary uses to signal the adrenal, making this a possible case of Addison's Disease.

    So now I'm on steroids to increase sodium retention. Yay, water weight! 😒

    The lopsided headaches are still happening. I've been treating them with Excedrin Migraine tabs and an eye patch to keep light off my right eye. (I thought the right brain controlled the LEFT eye...??)

    A new MRI in Feb 2019 showed one change since the MRI the previous year. It's a small 3mm "possible chronic lacunar infarct or dilated perivascular space" in my right temporal lobe... aka, I have a new hole in my brain.

    So in March, I made yet-another appointment with yet-another new specialist; but I guess neurologists have an even longer waiting list. By switching to a hospital system associated with the Mayo Clinic, I can see one in August instead of having to wait until the end of September. That's cool.

    In the mean time, a CT scan of my torso in late March was clear.

    I think I may have more than one problem... Or maybe the stupid steroids and migraine pills are masking some aspect of a different, as-yet untreated problem.

    So now it's back to waiting... And only low-impact exercise.

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2019

    Sorry you're dealing with so much and that you have to wait so long to get in with a specialist. How frustrating.

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  • Sadden
    Sadden Member Posts: 7
    edited March 2020

    O6elise,

    I hope you are still reading this forum because I want to specifically address you and your initial post back in 2018. I have read the replies to you since then and no one seemed to experience similar one-sided headaches. Most gave good advice about the headaches could be migraines or shingles. But I have experienced the same headaches now 2 years out of treatment. I too am ER- (only 3%)/PR- and HER2+. Last year the headaches, which I like to call "head pain" was localized, kind of dull feeling, and on a scale of 1.5 out of 10. The feeling lasted 30 seconds but enough to make me worry. Okay, now this new year, I've noticed the pain and duration have increased. The pain could be at the top of my head, the back, or the back near my ears. And it lasts about a 1 minute. At night, longer than that. I have an order to get an MRI to alleviate my fears, but refused it. Let me explain why. My oncologist does not believe it is a brain tumor. And I noticed that every time I feel the headaches, I noticed my neck is stiff. I had radiation for 6 weeks plus a "boost." I am so hoping it is just nerves healing from the radiation. If you are still on this forum, what have you found out since your last post?

    Everyone else, has anyone experienced head pain as a result of a stiff neck? My pain is not a migraine and I know for certain I do not have shingles. However, it could be a sinus/allergy issue because I now have tinnitus (ear loss) thanks to taxol treatment. Would love to hear that this SE is normal and experienced by others.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2020

    Sadden, if you are not getting relief, then ask for a second opinion. Headaches can have tons of causes, but I'd want answers.

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