I have always had a headache issue even before PM however, I get totally killer headaches from time to time. When I was first diagnosed, I got headaches so bad that I cried and they lasted 3-5 days. I have found if I treat them early, they don't get as bad. I have always taken Motrin for my headaches but now that is off limits so I was at a loss. A friend suggested Excedrin - Max strength - and that usually is the ticket. If it doesn't kick it, I often follow it up with a dose of Motrin and it is gone.

I also get migraines. My Neurologist said I could try my migrain medicine for my severe headaches. I take Maxalt for my migrains. I've not tried that yet but it is an option.

Absolutely talk to your doctor about it. It could be a side effect of your medications or they can give you something to help.

I've had bad headaches for years. I take aspirin and caffiene. I find that physical activity helps too. I think the exercise opens up blood flow to the brain. Anyway, it helps.

yes i have always had headaches as well. Very bad ones that make me vomit and light hurts and movement hurts, smell of food etc. and also prednisone can cause headaches. I take tylenol when i feel it coming on. i take 3-500mg. (you can take up to 8 a day if needed) but i usually only need to take 3.

I had daily headaches from it seems like I was born. Took Excedrin in the early years and then switched to Tylenol and then to Ibruprofen as each became the popular headache cure.

Then I heard about "rebound headaches" which are actually the result of the headache medication. I decided to go cold turkey and suffer through the headache for a couple of days without any headache meds, and voila, it worked.

Now I have the occasional headache, but it's not a daily thing anymore. I encourage all to google "rebound headaches" and see if it might be a possibility.

Good luck and peace to all.

I was never a headache suffer until this disease hit. I now have daily headaches that no one can explain. I just read on this website actually about Butterbur as a natural headache relief. I was going to talk to my dr. about it. Try to google it. It is supposed to be good stuff.

I get bad headaches that make me throw up about twice a month. I also get low grade headaches that like to hang around. I take tylenol when I feel the headache coming on so it does not build up too bad. I need to read up on why we get headaches with DM/PM. I am sure it has to do with collagen vascular problems. Our disease over time can cause a collagen vascular dementia that is equally as bad as Alzheimer's, and this is why it is studied with Alzheimer's research. I do wonder about the headaches and brain fog. You can google about current Alzheimer's research. Dr. Frank LaFerla at UC Irvine studies DM. PM, and IBM closely. I do not think we are told enough about our illness by doctors. A good example is aspiration pneumonia. We are told that we should be careful if we have a swallowing problem because it could lead to aspiration pneumonia. What the doctors do not tell you is that aspiration pneumonia is death. My father died two weeks after his diagnosis with aspiration pneumonia. He died faster than my boyfriend who died of terminal lung cancer. Aspiration pneumonia should be called Aspiration pnemonia death because you do not live with this diagnosis. There is so much we are not told. I think withholding full information from patients does not do any of us a favor. We need to be able to plan for what is coming.

I get headaches frequently myself and am sick of my doctors saying it isnt DM related. According to them practically NOTHING I deal with is related to my DM which is just ridiculous to me. A neurologist told me he thought I was suffering from "stress induced migraines". He prescribed a migraine medicine which helped with the headache but also caused my jaw to ache something awful and made my throat constrict and very sore. So, so much for that. I try to take Motrin if I start to feel a headache coming on to try to keep it from getting too bad. I have heard good things about Excedrin as well as Lexi mentioned and I may try that. My neuro checked my B-12 levels as well and they were low. I had more extensive blood work done on that yesterday. B-12 is responsible for a lot of stuff including carrying oxygen to your muscles and can really wreak havoc on your body if you dont have enough of it. May be something to consider checking out.

Thank you everyone for your comments and ideas. Isn't it interesting that doctors do not blame much on the DM/PM except those common denominators like muscle weakness, fatigue, Gottrons papules, etc. All of our bodies are different and if the illness is attacking capillaries that deteriorate the muscles how does it differentiate between the capillaries that supply blood to other areas of the body like the brain.
My rhumy was adamant on this but I don't think they know enough yet or understand the disease completely. I am learning a lot about the medical profession as I walk the DM path.

I had terrible headaches for the longest time. It was not till they found the brain tumor that I knew what was causing them. Before the find nothing helped with them, they caused me to curl up in a dark cool corner of the bedroom and pray for and end to it. Since they cut out 90% of the tumor I have not had a headache at all. But then again I have been having to teach myself to walk again. So I pray that you are not having to deal with the same issues as me.