Find Support

AlarmClock Headaches

AlarmClock Headaches

Posted By
10/10/2019 1:26pm
View other posts by
Replies: 8

Hi, My post might seem redundant but I am really struggling to understand what is going on with my mom. She had two doses of ipi/nivo so far and is experiencing headaches that comes after 9 pm and are gone by 9 am without any medicines. She now doesnt wants to be awake at night so she takes a tylenol when it starts but that just reduces the intensity of the pain and by morning she is all fine.

She also has jaw aches and unable to chew food properly. I have been searching all over to see if this a combo side effect or she is having any new development in jaw or in brain.
So far i dont see any such side effect documented.

Can someone please help to answer if they have experienced such cluster headaches that last 12 hour and jaw issues ?

Bubbles ?

Thank you.

Bubbles - (10/10/2019 - 1:52pm)

It would be best that you discuss your mom's symptoms in detail with her oncologist. In all my many years of reviewing side effects and weird untoward effects of immunotherapy (almost 10 years) I have not seen any that replicate what you describe with your mom. That doesn't mean that the events she is experiencing aren't related, jut that I just haven't seen it.

That said, melanoma, its treatment and the emotional toll of all of it is very stressful. TMJ and tension headaches are a very common response by many when dealing with stress. They are exemplified by headaches and jaw pain that build up through the day, due to neck muscle tightening and jaw clenching as the stress builds. TMJ causes pain that radiates to the head and that occurs when the jaw is both opened and clenched (ie - with chewing). Both are ameliorated with relaxation and rest.

Were I in her shoes I would check with the oncologist to make sure they do not think her s/s are treatment/melanoma related. If they do not, I would work on decreasing stress, purposeful relaxation techniques to the jaw and neck area and possibly seek the help of a dentist evaluate possible TMJ. (Sometimes mouth guards can be helpful.)

LIVING with melanoma and its treatments is a very tricky and difficult thing. One shouldn't overlook important untoward events, as reporting and dealing with them can be life saving. On the other hand, one has to find things to enjoy and focus on that do not include melanoma, so as to diminish stress and provide needed diversion. It's not easy. Wishing you both my best. Celeste

sks2019 - (10/10/2019 - 2:40pm)

Thank you Bubbles. I have made the oncologist aware of her issues when we were at the clinic for her second infusion. He suggested to continue the combo and watch if it gets better or else they will order a Brain MRI. She started to have receding gums and jaw aches in the third week of her first infusion.

Confused and trying to find hope.
thanks again !

Bubbles - (10/10/2019 - 3:11pm)

I think you have many reasons for hope!!! Despite your mom's recent run of bad melanoma mess, you are in good hands with Dr. Daud and she has a good chance of response to the combo!!! It is reassuring that her team will repeat an MRI if her s/s and do not improve. Even though I had incredibly bad mouth ulcers while on nivo alone (something that has been determined to happen occasionally - but was unheard of in 2010!!!) it was not like what you describe for your mom.

Gum recession can be caused by many things. Here are some links you may (or may not) find helpful:

I hope she can find relief soon! Celeste

Johnjk04 - (10/10/2019 - 4:57pm)

When I was being treated with the Yervoy / Opdibo combo, I did suffer through some tough headaches. My pituitary gland was completely wiped out.

John J Kissane

Affected - (10/10/2019 - 9:55pm)

Hi sks2019,

I do not have melanoma. My husband does. However, I seem to be more scared than he is. I'm embarrassed that I am so scared and try very hard to not cry in front of him or the children every day. I'm quite successful at this, however, I think the tension in my body has caused me to get lockjaw. My jaw locked 2 months ago, and I repeatedly forced it open at great pain. I don't know whether I should have forced it open as I still cannot chew food properly on that side, and taking a bite out of anything like an apple is out of the question. During the day I have just slight pain as long as I am not chewing anything, however, at night when I lay down, the pain in my jaw becomes quite strong and sometimes unbearable. I am not a doctor so can't diagnose the cause of my pain, but I am a mother just like your mother is. Could it be that your mother is also trying very hard not to cry in front of you (her child) and in turn that tension and stress could be affecting her jaw and head muscles which in turn are causing the headaches? I don't know if this post is helpful, but as the similarities and the timings of the pains are similar, I thought it could help as it would mean that the pains are not due to the medicine that she is taking. I visited a cancer support centre, and they are recommending I register for some relaxation/yoga course to relieve the mental anguish.

Do take care of yourself and I truly hope your mother improves.


sks2019 - (10/12/2019 - 12:41pm)

Thanks Affected , I understand the agony of a caregiver I am myself fighting with depression due to this.but not going to give up.

Lucygoose - (10/11/2019 - 9:45pm)

I had wicked headaches after combo, but I had YERVOY and an investigational drug instead of OPDIVO. I’m on OPDIVO now. Ask them if they are watching her cortisol. I seem to recall my headaches were worse at night. I too had pituitary damage that gave me secondary adrenal insufficiency.


sks2019 - (10/12/2019 - 12:39pm)

Thanks Lucy, my mom is on yervoy and opdivo combo. She is feeling pathetic after her second dose. Hope it’s doing what it’s supposed to do.
I am more concerned with the jaw and headache as most people here discovered brain Mets with jaw aches. I have to keep her motivated to fight this and I am afraid if she learns about more Mets it’s going to break her down mentally.