Base of skull pain?

[Beefcakesgirl]

Hi all!!!

I’m so comforted when I come here and read of others’ journeys. I feel so less alone. 🙌

So here’s my question....my bf has been taking imbruvica for almost 3yrs now for his CLL. We met with oncologist last month and his numbers were perfect. Lowest WBC we’ve seen. (6??) something like that. Anyways he has had no issues with imbruvica that we’ve noticed apart from brittle fingernails.

Last week he started having headaches. He has never gotten headaches in his whole life so he doesn’t tolerate them well. This headache would come on for a few hrs and then leave. Stay for a day and then leave. Show back up for another day and then leave. Well now it’s back and hasn’t left since Wednesday. He has had to leave work and only finds relief when he lies down. I watch it hit him. It’s like a cluster headache pain. It stops him mid sentence. Makes his whole head n neck twitch. He groans like his head is going to explode. He describes it as a stabbing sensation right at the base of his skull. We went to PCP. He wrote a script for Celebrex. 🙄.

I wanted to come here and see if any of you had any insight into these sudden headaches. I think it’s a pinched nerve but no MRI was ordered. Can you calm my fears? Would he really develop a side effect this extreme, this suddenly after taking imbruvica fine for so long?

Should I skip PCP and go to our oncologist in hopes he would order a scan? I don’t want to be dismissive. But I also don’t want him taking arthritis meds that pickle the kidneys if it’s not going to help the issue?

Thoughts are appreciated. 💜

[MsLockYourPosts Passed Volunteer]

Can your bf see a neurologist? Before you start throwing drugs at pain I think that it's important to pin down the cause of it if possible. Is there any particular trigger? Maybe keep a diary to help rule things in or out - activities like golf, types of chairs used, pillows on the bed, posture, especially if stressed or tired. Twice I have awakened with a pinched nerve in my neck - call the paramedics and give me morphine pain. Heat, cold, stretching, massage - nothing helped. Changing the type of pillow I use made a big difference.

[BookLovah20]

I was diagnosed with CLL only two months ago and I had severe pain at the base of my skull. I also had lymph nodes swollen so much (and in that area) that a doctor told me they were the largest he had ever come across. That said, once I started treatment with Imbruvica I no longer experienced those headaches. And if your bf’s WBC is as low as you say, I don’t think it’s from CLL.

I hope you both get an answer soon as to what is causing this. Imbruvica relieved my pain. I hope it’s not contributing to his.

Much love,

David

[HailMary-USA]

Hi Beefcakes. Has he started any new medication such as an antibiotic?

I’ve lived with chronic migraine for 15 years, but last May had the worst episode of my life with unrelenting tortuous pain for an entire day. Woke me at 4 a.m. and did not abate until 10 p.m.

My PCP and I have decided it was due to a single dose of Doxycycline two days prior which was needed because of a tick bite.

Perhaps review all his meds including OTC and supplements. See if anything changed around the time of headache onset.

But also one can develop adverse reactions to any previously well-tolerated drug. So I would research side effects of all his meds.

Good luck and best wishes.

Mary

[cllady01 Former Volunteer]

I would call the hematologist/onclologist and relate the situation. That would allow him/her to make the decision of should you see him for sorting in regard to CLL or Ibrutinib.

Please let us know how it goes.

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I have just started getting similar tension headaches. I had migraines years ago at perimenopause, and my psych taught me biofeedback exercises, I haven't had a migraine since. I tried the exercises on my tension headaches and it worked. Also check out Yoga with Adriene on YouTube for headache exercises, it really works.