Chronic Head Pain - One Year Post Op

[MVD]

Hi everyone,

I suffer from chronic head pain on the side where I had surgery.  I can usually manage it by taking Tylenol; however as I get more active, I have more pain.  Sometimes the pain intensifies when I read on my stomach, get up quickly from bed or jog.   I was wondering if anyone else is having or has had similar problems.  I also am starting to think that this head pain will be with me forever.   I am really concern about the affects of daily Tylenol use on my liver and am looking at other pain management options that may have less side affects (i.e. medical marijuana and acupuncture).  Has anyone tried any of these alternative for pain management? 

Thanks,

MVD

[staypoz]

There is a lot of great info here about ways to deal with post-op head pain.  Every person is different and one person may not respond to a treatment that worked very well for another person.  The first thing you should do, if you haven't already, is talk to your surgeons about your pain.  If they can't advise you, you should find either a headache or pain specialist.  The ANA has a helpful booklet on post-op head pain, and there was an article in an ANA newsletter about it a while back.  You should be prepared to come to any appointment armed with either the booklet or article because not that many docs have treated people with post-surgical pain like we experience.  With any lucky, your pain will resolve itself.  It oftentimes does that.  But sometimes it doesn't -- although I can say that my headaches became less severe and came with less frequency the further out I was from the surgery.  There is help to be had out there, but you may have to be persistent in finding it.   

staypoz

[Pryscodisco]

Hi MVD,
I have also been dealing with the same issue. My headaches actually started about two years before my surgery. I can even remember the specific day I got the headache and it never -quite- went away. It was all over my head but much more intense on the tumor side. Now, three years after my translab surgery, I still have the same headaches. I've tried taking different pain killers including antidepressants and even migraine meds (I believe I get periodic migraines as well as the AN headeaches, 2-4 times a month). Nothing has worked for me except for Prednisone, which is a very bad drug to be on long term.

My headaches also intensify often with increased activity. When they are really severe, I can barely move my head without making it pound.

In addition to the drugs, I've tried several other things. I took 500-1000mg a day of niacin for a while, and that seemed to help, but when I went off of it, I didn't really notice a difference. I've also tried taking hot showers or baths, and that seemed to help them subside temporarily. What used to work quite well would be to take a hot bath, 800mg of Advil, and a cup of coffee (for the caffeine), then rest. It's not working so well anymore though.

Tylenol doesn't work very well for me for some reason. Advil is what generally works the best. For OTC meds, I've also tried Excedrine, Aspirin, and Aleve (naproxen) but they don't help much. Like your worries with Tylenol, I'm worried about the long term effect of Advil, especially because I take large doses. It's know to cause ulcers and stomach bleeding.

I think the best thing that works for me as preventative is a healthy lifestyle. Meaning, lots of healthy food, low sodium, regular aerobic exercise, and keeping stress at a minimum.

I haven't actually tried medical marijuana, although someone told me I should. 

Anyway, I guess I don't have some "great" advice, but I just wanted to share my experience. We're all in this together! And don't give up trying. You never know when you might find that one thing that works for you.

[ANGuy]

You're worried about side effects of tylenol but not marijuana?  Maybe you should interview some people in drug rehabs who are dealing with the effects of marijuana use. 

http://www.usatoday.com/story/news/nation/2014/04/15/marijuana-brain-changes/7749309/

[Lesliegc]

Hi; Can you tell me what kind of surgery (middle fossa, translab, etc)? I also have chronic daily headache. No headache before the surgery (3.5 years ago) but they began about 6 months post op. I had middle fossa surgery. Mine are mostly tolerable so I try to not use OTCs or headache meds, but when I need a break, I use aleve (which works like a charm. Too bad it's so bad for your organs) or Indomethacin, which also works well but you have to take it with food and it causes bleeding ulcers. I have found that for most of the time I can take curamin, a concentration compound that uses curcumin, made from turmeric, and it take the edge off enough to function. It's nice to have something that is natural, mostly works, with no side effects, but it's expensive   .  I had exactly zero luck trying to get info from my surgeons (HEI in LA) or my neuro and ENT doctors here (Dartmouth Hitchcock in NH). They all seem to be remarkably uninterested in understanding why some of us develop this condition. Best luck to you. Keep us posted. Most peoples' headache conditions resolve, so don't be alarmed by my experience; it's kind of unusual. Chances are that by 3 years yours will be gone.