Living With Facial Pain

New here, introducing m

Hi everyone,

I am 51 and new here. I have had a long history of neurological problems:

Cluster headaches from 1988 - 2000
Sometimes chronic migraines from 1990 - now
Chronic intractable headaches from 1990 - now
ATN from 2007 - 9/17/2019

I was also diagnosed w/cervical dystonia a few years ago and am treated with Botox, which has also helped the headaches.

I started getting atypical trigeminal neuralgia above my upper right molar and often extending up to my eye and/or ear in 2007. At first I confused it with cluster headaches because they are somewhat similar feeling. The clusters hurt more, but they only last 25 mins. The only way I was able to survive them was because I knew they had a short duration. My ATN, when it is really bad, can last days at a time and that’s with ungodly amounts of tegretol. Dialudid, Valium and baclofen help take the edge off. So does Lyrica. MMJ too.

I was wondering if anyone has had success using a CGRP inhibitor for trigeminal neuralgia? I was on 70mg a month of Aimovig for a year and it didn’t help anything. I was increased to 140mg a month this past September 11 and I have not had more than 10 days of trigeminal neuralgia pain since 9/17/2019. I had been in a bad 3 year period where it ruled my life and when I took that shot I was in a particularly bad week. It was brutal. It took a few days to take effect.

I had been taking 800mg of tegretol a day plus dilaudid, Valium and baclofen. Also some MMJ. I was close to capitulating and calling a neurosurgeon.

I’ve been down this road before with my long history of headaches and then ATN. I’ve had as much false hope as anyone only to be crushed when something didn’t work. I’m positive it’s the Aimovig bc some months the shot seems to wear off a few days early and I begin to get ATN again. I’ve even had to take pain meds a few times. Yet a few days after my next shot (every 28 days), pain goes away. Not just some of the pain, but all of it. Not even a faint feeling of it.

I have been completely off of tegretol - for the first time in 10 years - since Christmas. I’m taking pain meds for stress related headaches 1-2x a week vs 2-3x a day x everyday for the past 3 years. Haven’t taken baclofen in months. Still on Valium but am slowly cutting back. I actually saved half of my pills last month.

I know different things work for different people. I was one of the people with migraines that none of the standard drugs except for steroids worked for.

Anyway I hope this helps someone. I’m 51 and have 2 stale but useful masters degrees. I had to move home and become a caregiver for my parents but for the first time in a while I feel like I can work again, at least when this disaster ends.

PS There’s another CGRP inhibitor that is different from the drugs in the Aimovig class. It’s called Ubrelvy (iirc) and can be taken with Aimovig or on its own. It’s for headaches but inhibits the same neurotransmitter that Aimovig does, preventing or inhibiting the trigeminal nerve from transmitting pain signals to the brain. I have tried it for headaches but not yet needed to for my ATN.

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Hey R0Y,
Welcome to Ben’s Friends
With all of the differing types or names they give for headaches, I give up, and just call it all head pain. I too have been given many of the same diagnosis as you from cervical dystonia to trigeminal neuralgia to nerve pain. And been trialled on many of the same meds as well, but none of them have been my ‘key’.

It really can be a case of trial and error to hopefully find what may work for you. Each person is an individual, the causes and irritants can also be very individual. What may be a ‘wonder drug’ for one maybe like a sugar tablet for another. Trying to keep a long term record of what happens when, how frequent, pain strength and longevity, activity, diet, medications etc can also be helpful as it can show any long term patterns. It can also show dr’s that you are participating in your own care.

Trying to obtain a full diagnosis can be REALLY difficult unless you have a dr with a genuine understanding.

Best of luck with it all
Merl from the Moderator Support Team

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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:
Lanocaine Patch- (Primary Dr said NO NO!)
Marijuana (Had legal card, Made headaches worse)
Oxcarbazine- (nearly killed me)
Special Diets
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.

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Everyone is different. I went from unbearable pain to virtually no pain, almost instantly when I started taking Nuerontin, aka Gabapentin, 600mg 4 times per day. This was over ten years ago.

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Hey Larry2,
I see you talk about Las Vegas you must live here I do too! I’ve been living with TN and ATN in Las Vegas for eight years but it sounds like you’ve been dealing with it for a lot longer, bless you! I also have a lot of other stuff going on with my health I am chronically disabled from connective tissue disease, epilepsy, fibromyalgia, hypothyroidism, migraines. And if that weren’t enough one of my epilepsy medications has made me have horrible vision problems for the last couple years I don’t know if my vision will be restored So I haven’t been online only on my very best health days and my very best vision days do I venture to see what’s on the Internet LOL but I hope you are doing well and I hope you are staying safe! - Krista

It is nice to finally find someone else in Las Vegas with this condition. Most people think I am making it up as you are aware there is no test to prove you have ATN.
You seem to have it worse than I do with more conditions and now we have to worry about this Virus. You also take care of yourself. I have a new pain DR who took me off of Oxycodone and we are trying Suboxone which seems to be working although the dosage is still being adjusted. -Larry

Amitriptyline really helped me with the burning aching pain of type 2. It was a lifesaver for me. I am now in remission after being on this drug for four years. Now, I am not taking any medicine. I think it was due to this drug calming everything down. My pain that I have now is just minor tooth pain. Compared to before when it was really bad tooth and face pain.

Hey there Min! It’s great to see you back!

Seenie from ModSupport

Tulips! You’re back. Awesome. If you have any questions working on the new platform, just ask!

Seenie from ModSupport

Hey thanks! It’s good to be back, I am now I am visually impaired because of a side effect of one of my epilepsy medications so it’s hard for me to go online and read posts sometimes my eyes work intermittently to varying degrees lol! anyway great to catch up!

That’s miserable. I’m sorry to hear this. Have you been able to make any helpful adjustments to your browser or your computer to compensate for your visual problems? I did a quick search and found this, for what it’s worth.

I also had a look at our platform instructions, and I don’t see anything that you could do easily at your end.

Wish we could be more helpful!

Hi Larry, I also have ATN and was told the same thing as you, it could not be operated on. One of my pain doctors asked if I would like to try out neurostimulation. I did and it was the BEST decision that I have ever made. It reduces the pain by about 75%-85% most of the time!! I do get some breakthrough pain every so often. I take some kratom for that and it works great.

I know that this isn’t the main topic of discussion here. I do just need to point out that kratom is an unregulated supplement, with no double blind studies showing it’s safety or efficacy.

Sharon from ModSupport.

Oh thank you so much for trying to help unfortunately I’m just on an iPhone right now so I just wait for a time when I can see my best and get out my magnifying glass LOL

Hi there hlt. My colleague Sharon mentioned that kratom isn’t FDA approved, rather an unregulated supplement. There is a part of this site called “Complementary Therapies” where you might find more information about it, though. Have you tried the search icon near your avatar (upper right)? Who knows what will turn up.

Seenie from ModSupport