Anyone else have constant headaches?
 

I'm just sorta curious as to the experience of other PCS folks. Headaches have been the most salient of my symptoms, as I haven't not not had some form of a headache for the past 15 months (except for about an hour maybe 3 weeks post-concussion after I went on a 30 minute walk). They thankfully aren't usually debilitating headaches, but they're always there and are hard to ignore when they start to get worse for whatever reason.

They've developed in complexity over the past 15 months, usually associated with where I've subsequently bumped (or even at times think I've bumped) my head. I've tried advil, tylenol, amitryptiline (didn't stay on it long as it made me feel out of sorts) NUCCA, PT, acupuncture, HBOT, muscle relaxers per neurologist who specializes in cervinogenic headaches, prism glasses, vision therapy, neurofeedback (which might have been helping but I've had a recent setback from another dumb head bump). Nothing has really helped.

The most recent recommendation has been gabapentin, but I've heard conflicting things. As it was explained to me by a PT, my nervous system is on high alert, and is like a motion-sensitive light going off when a leaf moves when it is supposed to be tuned to people-sized objects. Others have said it's likely anxiety, but I've had long periods of time (weeks) where anxiety really hasn't been an issue, and yet I still always have a headache.

Is this something that all PCS sufferers deal with? From what I've read it seems a lot of PCS headaches are transitory, not constant like mine, but I figured I'd poll you all and see if anything has worked for you.

Headaches. I never had headaches until I had PCS. I went 29 months with a straight headache. The last month I have been seeing a few hours in between headaches. It felt like they would never go away but now I am much more hopeful. I am a lot more cheery now but I still have to be careful. The headaches come back quick if I do too much.

The only thing I have ever thought helped was being outside. Just sitting under some trees enjoying the birds at the very least made me happier even if it didn't help with the headache. I also found TV and computers to be a cause. I tried going a week without and voila headaches were slightly better. Add a bit of light exercise to that and it seemed to push me past the last hurdle.

Feel free to PM me. I know how awful being in constant pain is

Yeah, the only headaches I got before this were from lack of coffee or being hung over (which wasn't often). I have a new appreciation for how difficult they can be to live with.

Have you tried aspirin ? It is a blood thinner so it can help blood flow. I've read that dehydration can contribute to head aches due to the thicker blood.

I used to take aspirin/Tylenol together for my worst head aches. They work good together since they work on different pain channels.

I also would ice the back of my head during my worst head aches.

What is your blood pressure ?

Yes. It has only been 2 months, but I have headaches every day.

I haven't tried asprin, I'll give that a try. I hydrate fairly obsessively (even before the concussion, I was a competitive runner back then and drank a lot of water to stay hydrated). I don't know my blood pressure off the top of my head, but I do know it's quite low, as anyone who takes it usually remarks about it. Another side effect from once being a runner I guess.

I've tried icing too, sometimes it seems like it makes things a little better, but often I don't really notice a difference.

I can say that at 15 months I had the same issues with reading and school. At 22 months I started reading again. Ive finished about 6 books and a few medical textbooks for fun. I also did a class at university! I can't do it at my old pace though. Its a lot of reading and then a break but it can be done!

This was my worst symptom, too. I finally got started on Topamax which cleared up my headaches. I couldn't tolerate amitriptyline at a high enough dose to help.

I can definitely relate! It has been 15 months of a constant headache for me, sometimes more mild, other times pretty intense. I'm pretty sure there are at least two or three different types of headaches going on also, which might have something to do with that.

Topamax is either not helping me a lot or the headaches would be far worse without it? Early on I had an infusion followed by corticosteroids and that brought the pain down some, but it crept back. Ice packs, Olbas oil, prism glasses, vision therapy, tinted glasses, hoods, Naproxen, and water are pretty much all I've got now and it doesn't solve anything.

For me, icing was not a 'do it when things are at their worse' protocol. I did it any time I could when I had any head ache at all. Plus, I would repeat it throughout the evening. I would rotate between 2 ice packs.