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Old 11-04-2020, 09:19 AM
BurritoWarrier BurritoWarrier is offline
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Join Date: Sep 2019
Posts: 45
3 yr Member
BurritoWarrier BurritoWarrier is offline
Junior Member
 
Join Date: Sep 2019
Posts: 45
3 yr Member
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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.




Quote:
Originally Posted by Crabmeat View Post
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...
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