Anyone else experiencing crushing headaches with this disease?

[sbkris1]

Just wondering if anyone else is experiencing severe headaches in addition to their cll diagnosis?

Any ideas if they are common with CLL?

My neurologist doesn’t think they are related but I am wondering.😂🤕

[MaxSmart]

Are you on medication?

[cllady01 Former Volunteer]

sbkris, if you are taking Acalabrutinib as treatment for CLL, it is reported that headaches are a side effect, at least in the beginning stages of dosage. Otherwise, headaches are not directly attibutible to CLL. If you have anemia of a high degree, you may have headaches--anemia can be a condition in CLL.

If you are having migraines as you reported in your profile, have you checked out the following sites? I hope you can find a support group among these to help you with your headaches: But stay with us for CLL support. You can join more than one of HU groups.

healthunlocked.com/search/c...

[cajunjeff]

Headaches are not a typical cll symptom to my knowledge. Rarely cll cells can infiltrate the brain and cause really bad headaches. This might not be spotted on a brain mri. A spinal tap to look for cll cells in the spinal fluid might be the better diagnostic test for that.

There are so many other reasons for bad headaches than cll cells in the brain, I might rule out all the other causes first. But I certainly would tell my cll doctor, and all my other doctors, about the headaches you describe so they can decide if diagnostic testing is warranted.

Finding the source of headaches is not always easy. I think your neurologist is right, they are probably unrelated. It is possible though, and if he doesn't know there are isolated cases of cll cells in the brain, you might point that out to him. Its pretty rare though, which is why your doc might be looking at other, more common, causes.

everydayhealth.com/speciali....

[Panz]

The only time I have experienced severe headaches is a after receiving IVIG, any other brand other then Gamaguard have been known to give me severe headaches.

I also was a tad more prone to mild headaches when on Leukeran but just nagging not severe. I have has CLL going on 31 years.

Panz 💕🙏☘️

[texigal in reply to Panz]

Hi Panz interesting about your severe headaches with IVIG. About two days after my first and only IV dose I developed headache so severe we thought I was having a stroke and underwent CT scan that was negative thank heavens, but it took morphine , phenergan and finalky dilaudid to relieve it .The diagnosis was aseptic meningitis , a rare adverse effect from the IVIG. Last year my Heme-onc felt I needed routine IgG , but suggested a trial of subcutaneous administration instead of IV. It has worked for me . I am now on monthly subqu infusion (HyQvia). I have a mild headache a day or two after the subqu infusion but tylenol takes care of it. So for folks who have bad headache after IV that may cause them to refuse IVIG might discuss this option with their cll physician.

[Fant1924]

sbkris1, I have experienced headaches on waking in the morning. I have finally dx it as inadequate O2 while sleeping on my stomach. I have moved to sleeping on my back and that has practically stopped it.

I don’t think I breathe as deeply while sleeping on my stomach. Of interest my Hg hangs around 12.

Dennis, 73, Venclexta

[Hidden]

I was having bad headaches after chemo.

Here's what helped:

1. Taking a shower to clear the sinuses and air passageways.

2. Using Flonase, as needed, per prescription from my PCP. Something to discuss with your doctor to see if its even right for you.

3. Discovering that chemo had left me in a hypertensive state with, at times, dangerously high blood pressure. I have a new PCP who agrees with my request for the mildest treatment available. Right now that consists of HCTZ 25mg daily and Lisinopril 10mg daily.

At times, I've taken Cetirizine 10mg (Zyrtec) at night so I don't wake up all clogged up and that helps from starting my day with a bad headache, which could turn into a migraine.