Headaches

[Trev1]

I picked up a cold nearly a month ago and at one point I was coughing up green coloured Phlegm which has mostly cleared up now, the cough has also reduced. But I’m finding late afternoon most days I’m getting a cutting pain above my left eye across the front of my forehead. Is it common with CLL patients to suffer similar headaches?

[Cllcanada Top Poster CURE Hero]

What meds are you taking? Could it be related to those?

A shooting headache could be a node, perhaps in your neck, pressing on nerve, its something to take up with you CLL doctor.

I have experienced ice-pick pain, as it is called, and it was chalked up to peripheral neuropathy... not uncommon with CLL.

Nothing was done about it...

~chris 🇨🇦

[fxdx1 in reply to Cllcanada]

I can sympathize with you. Many times I wake up with that type of a headache. Usually an Excedrin for migraines will help. And I do have small nodes at the back of my neck.

Take care!

[Trev1 in reply to Cllcanada]

Thankfully I’m not yet taking meds associated with CLL as my WBC is at 18, I was informed treatment will not start before reaching 100, and the other two meds are long term for Gout and BP the headaches only started just over a week ago. I’m seeing my GP hopefully within a week I will raise it with them and see the response.

[Doremefasol]

I was having similar symptoms. It is common for Leukemia / Lymphoma patients to have trouble with sinuses and frequent viral sinusitis, then it could become suprainfected (on top of virus infections) with bacteria, and this is when one needs to start antibiotics. I would start with sinus rinse, twice a day with warm water and either commercial powder that you can get in any pharmacy, (if you buy a bottle or a little NetiPot, it usually comes with sachets to make a solution, 2 in 1), or warm water with a flat teaspoon of table salt, followed by nasal spray example: Naso- Cort one spray to each nostril twice a day. The most important is to boil the water you will be using for a few good minutes and of course let it cool off, so you will not burn your nose and sinuses. It has to be lukewarm at this point. Wash the bottle (Nei Pot or Neti Rinse) after each use with dishwashing detergent and rinse well, let it air dry on a clean towel. It works wonders on me almost all the time, except when it is allergy connected then, I must take antihistamines like Zyrtec as well. Start with rinses, you have to commit to the whole ritual and I hope your headaches will disappear. You can also use sterile water at warm it up to a lukewarm temperature, but it is costly. Good luck!

[Cllcanada Top Poster CURE Hero in reply to Doremefasol]

Neti pots are not recommended for CLL immunocompromised,

Sterile nasal flushes are much better, many brands in the pharmacy...

These flushes must be used with great care and only very temporarily, they can cause other issues. I have a life long fungal infection... in my high sinuses and was warned off sinus flushes by my infectious diseases doctor... viruses or bacteria might be different but you need to know the cause. Also we have low levels of IgA mucosal antibodies, and this fact, can stimulate mucosal production, to try and combat pathogens...

~chris 🇨🇦

[Doremefasol in reply to Cllcanada]

I have MZL and frequent headaches and sinus problems .NetiPot with boiled (for 3 minutes) and then cooled down to a body temperature tap H2O works wonders for me. My Laryngologist who recommended rinses for me said that he is surprised that people clean their theeth at least twice daily but don’t clean their sinuses ( rinse). I guess everybody is different . Personally I think that a Netipot works better then the commercial NaCL flushes, but again whatever works for an individual is best.Long term of corticosteroids nasal sprays can lead to a fungal growth,so again one has to be careful.

[MsLockYourPosts Passed Volunteer in reply to Cllcanada]

Dr. Keating recommends using something like Afrin to shrink sinus membranes before using a sinus rinse, then using the saline rinse, followed by a steroid spray.

I only use a rinse when I have bad congestion or an actual infection, starting with Sudafed, and giving it time to work, followed by a sterile saline spray. I like Arm and Hammer, as I have found some of the others too strong and irritating. I lean with my head as far upside down as possible to get the saline well up in the sinuses. It also shrinks inflamed membranes, allowing things to drain better. I don't use any of the steroid sprays, as they make things worse for me, despite assurances from doctors who I don't know well that this or that one is new and different.

I did use a Neti pot a few times in the past, but only if I was already taking an antibiotic, to help things along. My sinuses are hopelessly sensitive, so I only do any of this when I feel that it is absolutely needed.

[mrsjsmith in reply to MsLockYourPosts]

MsLYP,

This whole topic is such a mine field of do’s and dont’s. I get so confused.

I have just looked up Afrin and the U.K. equivalent seems to be Sterimar which is a sterile saline spray that I normally reach for first.

My sinuses have been alternating between dripping and being blocked for the last couple of days. Just hoping it will clear on its own.

Next ENT appointment is May and I think I will ask my surgeon then what/when to use.

Wishing all my fellow sufferers well.

Colette

[MsLockYourPosts Passed Volunteer in reply to mrsjsmith]

Afrin = oxymetazoline from what I could find. I have no idea what it’s called there. It is a nasal decongestant spray. Sterimar sounds more like the sterile saline sprays, except that it is sea water. I don’t know why things can’t have just one name.

[mrsjsmith in reply to MsLockYourPosts]

Agreed,

Thank you for your reply. One needs a medical degree to read the back of the package. In the U.K. oxymetazoline is used in various brands including Boots blocked nose and Vicks sinex. But in reading the information it says it narrows the sinus, but one of my problems is I have very narrow sinuses to begin with ! Hey ho the joys of dealing with CLL.

Enjoy your Sunday

Colette x

[SouthFloridaLady in reply to Doremefasol]

Never use plain tap water in a netipot.

[Doremefasol in reply to SouthFloridaLady]

I use almost exclusively tap water with an exception when I am hospitalized and can use a stove. Again ,I bring water to a boiling point and keep it boiling for a minimum of 3 minutes. When it is done ,I cool it down ,add some NaCl and pour into my sparkling clean NetiPot. Again it works for me .