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.

Last summer when I left school and came home to rest I followed that protocol, icing whenever I could, for a couple months. I'm not sure that it helped all that much.

I forgot I replied to that comment already ignore :P

Same here, I haven't tried as many things as you have, but I too have been dealing with mild (now) headache on a daily basis ever since having scaffolding fall on my head in June of 2014. They almost vanished for about 3 weeks in March, but came back. ALCAR seems to help a little bit. I also do fish oil, vitamins, minerals, an turmeric (this accident seems to have turned me into a junkie, LOL, but I'd rather be doing something than nothing).

I feel like a crazy person taking all the vitamins and supplements I take too, haha. What is ALCAR?

I was diagnosed with PCS over a year ago. I believed many of the symptoms had resolved, but recently I have been under some unusual stressors.

I called my neurologist and the best way I could explain it was, I felt as though someone had picked me up and put me right back where I was after my concussion.

I do get headaches. They are difficult to describe, but in the front of my head where the brain injury was.

I think certain things like stress can worsen symptoms. Like aggravating a wound.

While I don't have any great suggestions for relieving your headaches, I wanted you to know, I deal with them as well.

I hope you can find some relief soon. Hang in there.

Angie

I've had a constant headache for over 3 years now with no break. My accident was Feb 2012 and I've tried so many things, but nothing even touches the pain. (Various drugs, acupuncture, chiropractic, physiotherapy...)

I got prism glasses in January and everyone was hopeful they would help. So far, no improvement. Next steps are vision therapy, which everyone agrees will make my head pain worse, at least in the beginning.

Neurologist wants to try Botox, but it makes me very nervous, so I haven't agreed yet.

I was on topamax for over 2 years but came off it a few months ago. My headaches don't seem worse since I came off, they are just their same old horrible selves. I do wake up more often at night with horrible head pain since coming off the topamax, so it was probably doing *something*.

My head pain is constant though... on a scale of 1-10, 10 being the worst, mine never gets better than a 5 and often sits closer to 8 or 9. Sometimes they are so bad all I can do is cry, which makes them worse. Sometimes the pain is enough to make me nauseous and vomit, but usually only if I over do it.

My blood pressure is low, too, the drs and nurses always comment on it every time I have it done. They often do it 2-3 times because they think its a bad reading.

I've tried icing my neck, constantly and regularly, I don't get any relief from that. I've also tried periods of using heat, no relief either, but it doesn't make it worse and feels nice. (We live in a cold, drafty, old house so the heat feels really nice in the winter!)

So at this point, I'm just kind of resigned to living with it. Its super frustrating and draining and I just try really hard to not over do it and make it worse.

Best of luck to you.
Starr

Ive had a headache for over 8 years.... They use to be real bad now there just part of my life....

I went to the Diamond Headache Clinic, it took a lot of playing around to get something to tone them down....It has made me happier...

I had a headache for 10 months after my accident. It was was a low grade but constant. I was dealing with many other issues that were effecting my life then the headaches.

The doctor gave me a low dose (100 mg) of topamax. This completely controlled my headache. I have very few side effects because of the low dose most lose of appetite.

packersrule - how long were you on the medication before you experienced any improvements? How long before you were completely off of the medication?

That sound really tough, I hope things improve for you.

Yes, I've had a constant headache for 2 months. It's pretty much all over my head and my neck starts to hurt with over exertion /stimulus. It's more like a pressure, if I press with fingertips it hurts. Mine came back 6 weeks POst concussion when I tried to go back to work.

I Wish I could have stayed on Amitriptyline/ Nortriptyline but it made my heart race and chest pain. Waiting to see Neuro for something else.
Hope you find relief soon.

I developed new head ache and neck issues when I started wearing trifocal lenses in my glasses. I needed to tip my head up/back to use the bottom lens. This aggravated my neck. It helped to lower my computer monitor to the lowest position but did not solve it completely. I think the frequent need to tip my head back just aggravated things.

Headache is probably the most annoying symptom I have. I have had a constant headache for 6 months now. I'm taking Tramadol daily to keep them at a tolerable level. Sometimes though even that doesn't help and I just have to ride it out. I'm also worried about developing dependency on it; my doctor says it's not habit forming but I've never been a fan of drugs in general.

Depakote has helped a lot with my headaches. I take 500 mg/day, with an option of increasing to 1000 mg on bad days. I tried going up to 1000 mg/day, but it gave me incapacitating fatigue (a pre-existing problem that was exacerbated). I've been on it for about 2 years and it still seems to be helping.

I should note that I've also tried vision therapy, vestibular rebab (via a PT), cranio-sacral therapy (from two different practitioners), regular massage, two different chiropractors (one NUCCA), and Gabapentin. Depakote has helped my headaches more than did any of these other forms of therapy. Icing helps too, though sometimes my headaches are tension-based (eyes and temples), in which case it helps more to apply heat. Sometimes I alternate between heating and icing.

A good trick for heating and icing is to take a few tube socks and fill them with plain rice. If you heat up a rice-filled sock in the microwave, it will retain its heat for quite awhile, and it's easy to distribute it evenly across the area you want to heat. I find that the weight also feels good. You can reheat a sock again and again without destroying the rice or the fabric. I also keep two of these in the freezer for icing, but the freezer has to be set to a very cold temp to get the rice cold enough.

isometheptene, acetaminophen, dichloralphenazone ... has helped me out some

but my headaches are constant low grade to level 8

Im having big issues with being motivated for anything... I used to have such a full life until this... so .....

I couldnt read the whole thread, but... I had constant headaches until I was treated for the depression I was up against and the lingering all day headaches abated when treated. It likely isnt the cause of everyones but it helped me and I was so sure that my mood had nothing to do with it, now I just get the regular headaches which is still not great but beats the 24/7 daily drudging ones.