I find peppermint oil a must …just slowly sniffing it from a handkerchief calms my nervous system so much.I cured myself of awful everyday headaches by sniffing lavender oil and peppermint oil and drinking litres of water several years ago.It took just a month.ATN is harder though!Im from the UK where there is a big interest in homeopathic medicine and currently am taking the homeopathic med opium.
I’m curious about Dr. Janet Travell’s myofascial trigger point injections. I’ve also put lipoic acid on my shopping list.
This thread is so old, don’t know if you guys will see this but reading over it I had the idea of using the roasted seeds in a food processor and making a butter? Just s thought. I lucked into remission and have been training service dogs hoping to team them with Veterans.
Also I have my heart set on spurring a clinical study for TN. My ideas are pretty outside of the box (go figure!) so I’m working with our awesome TfrieNd Mods to possibly get some help from the forum. If it’s just too controversial, I understand it is quite the nature of this particular beast - I couldn’t imagine having a less stigmatized, feared, taboo monster as my champion, why, that’d take all of the fun out of it! Anyway, if I have to keep a gag on it for now, I promise, the day the study is approved, I’m coming straight here to announce it! How cool if a bunch of us could hole up at a lab for a few weeks together and experience life again, huh?
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I have had atypical trigeminal neuralgia for 9 years. In 2009 I educated half the drs and pain clinics what ATN was.Mine started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant and moves around. It’s mostly moderate to severe. With the pain I have ringing in my ears, noise sensitivity, twitching (usually not visible, but I can feel it), burning eye (right side only), and depression. I have received something like 18 different diagnoses ranging from TMJ to cluster headaches.
I’ve tried a lot of different medications. Most didn’t work and they all had side effects. One put me into the hospital 2 weeks from falling on my knees due to dizziness-Carbamazepine. Finally what worked for four years was 10 mg of oxycodone every 4 hours which was the only thing that made me feel somewhat normal again. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of the new DEA and government rules and my Neurologist’s panic.
Interesting is sent to outpatient rehab. Took only 4 days to withdraw. People like us usually don’t get addicted, our bodies do get dependent. Look up painkiller in the dictionary and statistics of addiction for real patients in real pain.
Have tried for Trigemninal Neuralgia II:
Acupuncture
Acetaminophen
Botox
Biofeedback
Carbamazepine
Cymbalta
Gabapentin
Ibuprofen
Lanocaine Patch- (Primary Dr said NO NO!)
Lyrica
Marijuana (Had legal card, Made headaches worse)
Oxcarbazine- (nearly killed me)
Oxycodone-(worked)
Savella
Special Diets
Toporox
Vibryrd
No surgeon will touch ATN because it is on both sides of your head. Also most surgery for TN turns out to be temporary over time.
Have been to:
Cedars-Sinai Hospital
After review called and stated could do no more than what has been done for ATN.
Stanford Hospital including Stanford Cyberknife DR’s . Assistant called personally stated after review called and stated could do no more than what has been done for ATN.
Mayo Clinic
Neurosurgeon who performed the MVD on a contact of mine with TN in Utah also stated after review called and stated could do no more than what has been done for ATN.
Cleveland Brain Institute-Called and they also stated could do no more than what has been done for ATN.
Southern Nevada Pain Center -Stated what do you think I can do for you after review and examining me as our office does not prescribe opioids anymore.
Neuro Clinic, wife’s neurosurgeon, who thought he could help me sent me to Pain Doctor, who saw me and said could do no more than what has been done for ATN, office does not prescribe opioids. Referred me to the Nevada Headache Institute in Las Vegas. Dr saw me and stated could do no more than what has been done for ATN, office does not prescribe opioids even though he feels that would be my best and really only option.
Neurosurgeon- Sunset Clinic, After waiting 3 months for my appointment two days before I was to go there, office manager calls to cancel as Dr reviewed all my files and will do no surgery for ATN.
Summerlin Cyberknife, my last hope, reviewed all my records and called to cancel my appointment, they will not do this procedure for ATN, TN only.
In June 2018, was close to suicidal, my neurologist finally gave me a prescription back for oxycodone. It works but is kind of like a tease, because I need twice that. No one will give me anything for break through pain which of course has to have a narcotic in it.
And I’m now 71 and ashamed of our government, DEA, etc.
Larry
I have an actual diagnosis and have been seeing a chiropractor since 1997 which keeps the pain manageable unless I get a flare, which I than go on a steroid. I encourage you to read about facia, and Ashley Black, and the faceblaster. It changed my life. I heat up my face, apply a lubricant ( I use gel) and lightly, quickly move the faceblaster about 20 times on each side of my face. I was so scared it would make the pain worse, but was desperate to try anything. Amazingly my pain is 75% better most days. I don’t know if this will last but am taking full advantage.