Hello,

I'm at 13 months post concussion, and still desperately looking for something to stop the headache. Headache is my only real symptom, along with the subsequent anxiety and depression. I've been to dozens of doctors and tried all the medications and injections to no avail.

Recently I've been told it might be occipital neuralgia, but occipital nerve blocks provide no relief so that seems doubtful.

Anyway, after some further research I'm now looking for feedback on:
ketamine therapy
magnetic EEG resonance therapy (MeRT)
occipital nerve decompression surgery

Anyone experienced these or other similar treatments/surgeries?

Have you found anybody who understands Botox for conditions like yours?

It has success in many cases.

What about less invasive, less meds treatment first ?
Have you tried PT or DC, massage?
Soft tissue, strains, muscle spasms, trigger points, misalignment factors can be addressed by good PT or Chiropractic if you haven't explored that route yet..
Maybe even acupuncture..
These things can cause headaches..

Can you list the medications and injections you've tried? (Along with the doses and length of time you were on them for). I know you said all of them, but the list is long, and it can take a while to work up to the max dose on each one, so I'm just curious if there's anything left to try.

Thanks all for the responses. I have tried Botox, PT, vestibular, acupuncture. Most of the meds I've tried have had bad side effects. Here's a list:

• Migranol (B2, feverfew), Migra-eeze (B2, butterbur)
• CBD tincture and smoking
• Imitrex, 100mg
• Nortriptyline, 10mg, 5 days (horrible side effects)
• Topamax, 25mg
• Cyclobenzaprine
• Occipital Nerve Block
• Botox, x2
• Cymbalta, 30mg, 7 weeks; then again for 6 weeks
• Synapsin nasal spray
• Epidural
• Lyrica, 50mg, 5 days (bad side effects)
• Aimovig
• Ajovy
• Medrol 4mg pack, 12 days
• Kratom
• Occipital Nerve Block with cortisone

Doctors I've seen include:
o 3 Neurologists
o Physical Therapist
o Acupuncturist
o Therapist
o Pain Management
o Sports Medicine
o Vestibular PT
o Psychiatrist

I am scheduled to try ketamine infusion next week.

Are there others who have gotten a diagnosis of occipital neuralgia? After reading more about it, seems what I have could be classified more as OM than PCS, since the headache is the only symptom. But then again, the occipital nerve block didn't do anything...

Okay, this is what I had been wondering given that you had been suffering with headache for only 13 months and "tried everything". It does look like you've tried a lot of things, but I don't see that you've given any of the standard preventatives a fair trial (working up to the max dose and staying there for 6-8 weeks).

I had severe nerve pain in my face, and it almost entirely resolved with Topomax. It is different for everyone, but I can tell you 25mg did nothing for me, and I didn't have it resolved until I was on 100mg (therapeutic dose is considered 100mg-200mg) for several weeks. That follows what leading doctors have suggested.

For what it's worth, I was first on 75mg of Nortriptyline (therapeutic dose is 50mg-100mg) for about 8 weeks and found the side effects to be horrendous. I wanted to push through, though, because some people have initial side effects that subside and they find relief. Didn't happen for me

"Fair" preventative drug trials are really tedious and take a lot of time. People get impatient because of the side effects and the level of pain they are in--they want relief right away. I get it. And even with a fair trail, each drug is only 50-75÷ effective at reducing symptoms by 50÷ or more, so that's not really great odds.

Read the medication section of "Heal Your Headache" (ignore the hokey title--its written by one of the most famous headache doctors to come out of John's Hopkins and is still somewhat used as the treatment standard today). There is some good guidance on preventatives in there, but it looks like you technically have all of the main ones left to try (besides the newer injectables), given the ultra low doses of topomax and nortriptyline you were on.