Has anyone anything to offer with regard to constant headaches.
I’ve had this for four weeks. Been put on 40mgs Predisolone steroid as it might be GCA but not solving the problem.
Now wondering if they’re CLL related.
Glad of any thoughts you may have.
dark chocolate. I recommend Endangered Species Extreme Dark 88% Cocoa as Consumer Labs tested the bar and found some of the lowest readings for heavy metals relative to peer options.
But sometimes things like chocolate, cheese, and other high tyrosine foods can actually worsen (or cause) headaches. They've been implicated in migraines, I believe.
looked it up and I guess your right. I have heard of people having relief from it too though
relief from depression for me!
Some of the benefits:
health.clevelandclinic.org/...
& I’ve heard it prevents dementia and has other benefits
Are you on alcalabrutinib - if so it does cause headaches and best solution is small cafine hit via coffee morning and nite
No still on watch and wait. But thanks for tip if I end up on that.
I am on watch and wait , suffered with migraine for many years but usually just one or two a month,over the last two years have now turned chronic waking up most days with a bad headache which doesn't respond to pain killers,I think it linked to the CLL also have developed pulsatile tinnitus
Doctor's don't agree but probably as not enough people come forward with these symptoms to link it up
Very interesting and thanks for replying. Mine is worse in bed and starts my day with a bad headache which does respond to painkillers slightly
My ears are hurting too but not inside just the gristly outside!!
As a high dosage of steroids hasn’t worked I think they’ll rule out GCA which leaves the CLL route.
My grandmother used it to deal with her migraines for years and I have heard of others doing the same. I know that people are saying not to try it, but it is only chocolate it might be worth a try.
It is just chocolate, might be worth a try I know I’ve heard many people say it helped. Including my grandmother.
GCA?
How is your Hb? I had constant headaches when my Hb was low.
Is Hb high blood pressure? If so it’s fine. My inflammation markers are up though.
Haemaglobin - your red blood cells, nothing to do with blood pressure.
Of course it is. Sorry my mind is not working too well. 😂. I will be asking my consultant that tomorrow as my patient portal isn’t working at the moment. So frustrating as I like to know every last detail. Thanks
hi keeptalking
I’m sorry you’re suffering like this too, I have been getting crazy headaches. Have had CLL/SLL for a year and a half. MRI in February showed I have infiltration of leukemic or lymphoma in my eyes and optic nerves for an entire year now without improvement. Had an orbital mri a few weeks ago that said left optic nerve resolved without treatment. I know it’s not resolved, I can see and feel it. Hematologist said it’s very rare to have orbital lymphoma.
A lot of severe headaches, then a huge painful artery popped out near my left temple. My neuro ophthalmologist, neurologist and primary doctor just told me to go to the ER, because they think giant cell or temporal arteritis, I didn’t go because they never know, just destroy my veins, I can’t take prednisone and that’s what they want to give me. My hematologist didn’t bat an eye when I told her about it. She said maybe my disease has transformed and ordered many labs. My pain is never related though. Frustrating.
I hope you find some relief, I’m using low dose aspirin for now.
Best wishes
sorry to hear you’re suffering so much. Hopefully you’ll get it sorted soon.
I hope your headaches ease up 🌻
Yes I had really bad headaches when I started my treatment. Iced coffee did the trick for me. Better than paracetamol. It might t work for everyone. But it did for me.
Hello Keep talking. I have had a permanent headache, dry eyes and blocked nose for at least a month too. I don't take anything and I had put it down to perhaps being allergic to something such as leaf mould. Taking an antihistamine helps.
Sorry I should add, I finished treatment at the end of June this year. I haven't mentioned it to my GP.
Hello yes I have headaches too. Normally I'm not a sufferer of headaches I put it down to my Sinuses....
really appreciate all your comments. I might know more tomorrow after seeing my consultant. Thanks
I have Essential Thrombocythemia and have suffered with nocturnal headaches for years. Usual headache medications do not help. The only thing that does is coffee, so I have a cup at night before bed, and in the morning. If I get a headache during the night anyway, I’ll get up, have a cup, and go right back to bed. Some brands of coffe will keep me awake, so I have to stick to certain brands. Regardless, most mornings I still will wake up with a vaguely “hungover” type headache, however that is cleared with a cup of coffee. No one has explained why this happens..
So many people suggesting coffee. I’ll give it a try. Thanks
So hard to live with constant Headache!
I had my diagnosis in 2017, and was suffering my whole life from chronic migraine pain that would bring me to Emergency as out of any control!
Since I started treatment in August this year V+O, my migraine get much better because my neck lymph nodes shrank significantly.
I also drink lots of water and liquids and that had a very positive impact on headache and migraines.
During watch and wait time my head aches was directly affected by my hemoglobin and iron levels.
I also searched GCA
GCA)? Giant cell arteritis (or GCA) is a medical condition that can cause pain and swelling in blood vessels.
This can be a main cause of constant headaches as a result of swelling of brain blood vessels.
Try to check this out with your doctor hope he can find a good solution. Best of luck
I’m being monitored for GCA and taking precautionary steroids to protect my sight.
I do need to check out my Hb though. Many thanks.
When I first got diagnosed, I was getting terrible headaches that would last for a good 10 days. It was so hard to focus or really do anything. Over-the-counter meds wouldn't ease it at all. After a year of suffering, I went to the chiropractor for the first time because I was so desperate to try something. I explained to him what I was going through. I have been headache free for the past two years going once a month for an adjustment.
Like the sound of that.
I have had a mild headache for about 60 days, almost constantly. It isn’t enough to even consider taking an Advil. My red blood count was low in October around the time my headache started. (it was in the low 100’s) I am on W & W and having bloodwork done every 2 weeks culminating to a overall review Dec. 19. The DRs will have multiple blood tests to compare at that point to see if they need to react to my low red blood count. I will share what I learn. In the meantime, I put a small icepack on the back of my neck for a few mins a couple of times a day. That seemed to help. Blessings!
Thanks. I’d love to hear how you get on in December.
I’ve had severe headaches( enough pain to go to ER.) for years. Very severe before I was diagnosed with CLL.
Here’s a list of things that have helped over the years. I’ve had much improvement over the years. On watch and wait currently.
Super hot then cold showers
Essential oils peppermint and eucalyptus
Cooling gel on my neck and forehead
Hot packs and cold packs
Try to be aware of stress levels and reduce when possible
Massage
Exercise, weights, walking 3 miles on the bike everyday
Take b12/ vit d daily
Low dose aspirin
Avoid dairy and gluten when possible.
I have felt the headaches are related to the CLL and the severe fatigue that I had in the early years which has now mostly resolved.
Wishing you the best, headaches are the worst!
Hoping you feel better soon!
Thanks
coffee. The caffeine helps the headaches.
Might be worth asking your dentist if they see any evidence of night time tooth grinding or jaw clenching. A mouth guard might help if that is part of the problem. CLL is so heterogeneous and complicated. Best of luck finding relief 🙂
coffee has always worked for me - I’m on Acalabrutinib
Hi keeptalking - I am sorry you are going through this
I used to feel light headed and sometimes headaches due VitD deficiency - have you checked your Vit D levels recently ?
Thanks. Yes I take 2,000ui vitamin D daily.
I had headaches everyday for 6 weeks back in 2017 ..was told they were cluster headaches...relpax 40mgs helps .. sometimes Oxygen helps ..good luck
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