25 replies to this topic

[Jamie2015]

How is it possible to have only taken one pill last night and yet my head has throbbed since 2 am this morning. . I feel like I should have gotten at least a couple of pills down before any side effects? Lol (wishful thinking maybe?) Is ibuprofen an option to take?

[mlk210]

Oh I'm sorry, the headaches are horrible. I had hoped that you would be blessed to not have that side effect! Mine started before I even took my second pill. You can take ibuprofen and you can also take Aleve (naproxen). I was told to stay away from Tylenol because of the liver. I know they're bad and I thought they were never going to stop, but they did. Hang in there! 

[Trey]

Naproxen (Alleve) is generally considered better than ibuprofen (Motrin).  Motrin may decrease TKI drug absorption based on some data.  I don't think it is a huge issue, but given the choice Aleve is probably a better option.  I would not take Tylenol except very short term due to liver issues.  Aspirin is also an option, and it works well for some people.

[pammartin]

The headaches are horrible at first but they do subside. Treat your symptoms and try to take it easy as much as your daily routine allows. They hit hard but by the second week they usually subside and eventually go away. You now know this will be a side effect you have to deal with, but it does get better. Take care

[Jamie2015]

Did any of you guys ever experience tooth pain? I know that sounds weird but it's almost like someone had put icecream on my teeth that cold burn feeling?

[Trey]

In the first few days, Sprycel can make anything hurt.  Other pains will also show up.  It will take a couple/few weeks for your body to adjust.  Some adjust faster than others.

[Billie Murawski]

Hi Jamie,

 Oh I feel so bad for you, we were all hoping you wouldn't get them. I told Pam they felt like railroad spikes being pounded into my temple, she agreed. My teeth hurt too, and try to hang in there we guarantee they will get better.I like the way Marnies onc started her out on a half dose first she got headaches but not as severe that makes so much sense, to bad all our docs don't listen to us,her body had more time to adjust to the drug.

My teeth hurt too, I took ibuprofin liquid gels they helped me. I have never tried Alleve but I hear it's better for pain. I have to check with my pcp before I try it. I take plavix,aspirin,lipitor,& highbp medicine so I'm afraid to try anything new.

When I go to a doc they ask me what meds I take, I tell them it's easier to tell them what I don't take!

 If you can lie down in a dark room and put a cool cloth on your forehead and try to stay calm that's what I did.

                                                                                           You'll be fine soon      Billie

[mlk210]

Jamie, my teeth and jaw hurt, too!

[Gail's]

Are the headaches you describe cml related or drug related. I have had bad headaches for the past year and I was only diagnosed with cml 2 weeks ago.

[Billie Murawski]

Gail,

 I'm pretty sure what you're going through right now is from the Sprycel it seems to be the most common side-effect. I used to get a lot of headaches when I was younger but not very many anymore. Maybe whatever you are taking for your Sprycel headaches will help you with your regular headaches. Boy am I screwing this up, Gail that is a hard question to answer, I'm trying to make you feel better but I don't think it's working. My heart aches for anyone who suffers from chronic headaches. I remember when I had 2 little babies and migraine headaches oi I get a headache just thinking about it how do we make it through those times. Maybe now that you have a dx, the headaches might have been a symptom, and once your body adjusts to the Sprycel  all your headaches will go away.

  Anybody out there feel free to jump in!!!! I'm trying to help poor Gail and I don't think it's working.See how they are they'll just keep letting me bury myself deeper and deeper.

 Oh Lord let me put it this way, take 2 aspirin and I'll talk to you in the morning.      Billie

[Lisa Lisa]

Ouch

[Lisa Lisa]

Jamie i started my Sprycel today at 11 am. This is my Day 1. It is now 2:45 am. and idk if my teeth and jaw are going to fall out of my head or my temples are in crisis. This headache is by far the worst pain I have had ever. Please tell me you feel better and it lessens. How do we know the dosage isnt too high and hurting our brain... I am losing it! I cant think about taking another pill in 8 hrs

[Billie Murawski]

Lisa just hang in there, the headache will ease up, I know it's probably the worst headache you have ever had,the first few days are the worst but gradually it will ease up, Not everyone gets the headache but those of us who did really sympathasize with you. You will not lose it, try to lie down in a dark room with a cool cloth on your forehead. Focus on relaxing the other parts of your body.If you have alleve take it, I took ibuprofin liquid gels. Herbal tea, soft music anything to try to take your mind off it a little bit.

 When the headaches gone buy yourself a big jug of wine put a straw in it and chug a lug.100mg is the standard dosage to start with.

[Jamie2015]

I was really hoping you wouldn't experience the headaches. They really are painful :/. Crazy that it manages to happen so fast too. Take one pill and bamm feels like someone's hitting you in the temple with some cleats. I also experienced the teeth pain. Felt like someone had put ice cream on there for days and it was like a burning sensation.

take some alieve and hopefully that will help with the pain.

[Trey]

The Sprycel headaches are legendary.  For most they lessen within a couple weeks and go away over a couple months.  Your mileage may vary.

[cleocans]

I started my Sprycel two days after my BMB.  My back side where they did the procedure was the size of a softball and hurt.  The healing was worse than the procedure for me.  So I had to sleep on the couch so I wouldn't roll over on it.  I took my Sprycel at 9pm and at 4 am I woke up with the worst headache ever.  Needless to say I didn't get much sleep the rest of the morning with the headaches and the BMB pain.  I was one of the lucky ones as my headaches only lasted 4 days.  My onc told me I could take advil, so that's what I did.  Hang in there the headaches will go away.

[hannibellemo]

I think I was the only person who did not have Sprycel headaches. I experienced tremors every night before bed that gradually diminished and disappeared along with other weird and various nasty things. I hate headaches, I'd stick with my side effects if I had it all to do over again.

 

Hope yours disappear soon, Jamie!

[Lisa Lisa]

Thanks to all of you for responding. My headache lasted from 9 pm to 3am. Severe in temples and back of head - I shared how severe in prior posts. This is crazy my onc wants me to stop med for 2 days now. And I dont want to.

[Trey]

If you yo-yo stop/start you will not get through the headaches as quickly.  Think cold turkey drug re-hab in reverse.  Oncs do not understand side effects.  Your Onc probably even thinks the headaches are unusual.  They are very usual.  The best way is to gut it out.

[mlk210]

Lisa - I'm with Trey. My onc offered for me to switch TKI's because of the headaches and I was only a week in. He acted like they weren't as common as everyone on this site did. Got on this group and everyone told me how common it was and they would go away. I'm sorry, the headaches are horrible.  Mine lasted about ten days, gradually decreasing in intensity.