Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 04-24-2020, 12:07 AM #1
Crabmeat Crabmeat is offline
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Default Anything to alleviate PCS headache?

Hello,

This is my first post - I'm desperately looking for any advice on what can help alleviate PCS headaches.

I'm 7 months in PCS from a wakeboarding accident that seemed minor at the time. The only real symptom I have is a headache but it is constant and becoming unbearable. About two months after the injury I went to the doctor for the headache, MRIs on head and neck came back with 'nothing remarkable'. The first thing I was prescribed was imitrex which did nothing, then nortriptyline which triggered horrible anxiety and depression, so much that I had to take two months off work. During that time, I saw a psychologist, physical therapist, and acupuncturist regularly, starting taking vitamins and CBD. I then got a cranial nerve block injection as well as botox injections. Nothing has helped even remotely, even temporarily. Its just constant headache all day every day. Three weeks ago I started taking cymbalta, nothing yet with that.

Other things I've heard of but not yet tried include the medications lyrica, topamax, and synapsin nasal spray. I realize in reading some of these posts that obviously PCS can last a long time and what works for some won't work for others. But its extremely frustrating and hard to believe that I can't find anything that provides even a little bit of relief. Has anyone had any luck with any of these medications or can suggest anything else?
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Old 04-24-2020, 02:37 PM #2
BurritoWarrier BurritoWarrier is offline
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I know that the headache spectrum is huge and everyone's pain and reaction to treatment is different.

My "headache" is severe facial pain where my sinuses are. My neurologist tells me that this not all that uncommon of a headache presentation, as the trigeminal nerve runs through the sinuses.

So far, I've tried 75mg Nortritptyline (made the pain and other symptoms way worse before leveling off and never really helping) and 100mg Topamax (didn't hurt but didn't seem to help, either with pain or other symptoms).

I've also tried a device called Cefaly, which sounds SUPER hokey, but it is a legitimate FDA-approved treatment, and it has cut my pain in half. Every time I stop using it for a couple days, the pain comes right back. It works by stimulating the trigeminal nerve to calm it. It's similar to e-stim, if you've ever done that for your muscles. Doesn't work for everyone, but worth a shot, if you're willing to spend the money and try anything. I think a lot of doctors don't think to suggest it because you have to pay out-of-pocket for it (even though you need a prescription), but it has a decent success rate for pain reduction.
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Old 04-25-2020, 03:22 AM #3
Mark in Idaho Mark in Idaho is offline
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Crabmeat, Just because the MRI says your head and neck are fine does not mean your neck is not injured. The subtle upper neck injuries from a concussion are not able to be diagnosed, especially with imaging. It is usually an instability at C-1 and C-2. BUT, they usually respond to taking proper care of the upper neck. If the headaches include tenderness behind the ears at the bony spot, they are neck related.

Ice the upper neck. Use normal anti-inflammatory meds and treatments.

Treat your neck carefully. Sleep with straight head and neck posture. Limit quick head turns and other movements.
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Old 04-27-2020, 06:03 PM #4
Crabmeat Crabmeat is offline
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Thanks for the responses. My headache is usually at the lower back of the head (occipital area), but seems to move around, sometimes its at the top, front, or sides.

My MRI did show apparently 'minor' issues (slight pinched nerve, herniated disc, and stenosis) but the doctors thought these things were unremarkable and typical given my age (30) and active lifestyle, and that none of this would be causing the pain. I do still suspect the neck may be the main culprit, as it was a backwards whiplash-type fall, but I don't have any pain in my neck, just the head. @Mark in Idaho - is it best to sleep on back? Are there certain types of pillows that would help?

The most frustrating part is that I cannot pinpoint anything to make the headache better or worse, so its impossible to manage. Medicine-wise, none of the OTC or prescription stuff I've tried has done anything, nor has changes in activity. Sometimes I can fully exert myself without having an increase in pain, other times I'll be completely relaxed doing nothing and its extremely painful. Other times the opposite is true, and everything in between.

The Cefaly sounds interesting, but in researching it, looks like its meant primarily for the forehead while my headache is generally at the back, so I don't know if it'd be worth the money but I'll keep that in mind. I was able to get a prescription for synapsin nasal spray (also not covered by insurance) so I'll be trying that in addition to the cymbalta for now.

Appreciate any other input - thanks.
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Old 04-28-2020, 12:19 AM #5
Mark in Idaho Mark in Idaho is offline
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Try to find a way to sleep with your head and neck in straight alignment just like when you are standing straight. What ever it takes to do this, just do it. I slept in a recliner while I learned what position helped. I got great sleep and woke without any headaches. If I messed up with sleeping posture, I would have stressful dreams and headaches. Often, they were what I called mud headaches. A dull ache like my head was packed full of mud and my thoughts were stuck in the mud.

Good quality sleep changed all of that.
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