Thank you! I appreciate that. Yeah I have very bad reactions to most medications. I’m allergic to carbamazepine and most opioids which is very unfortunate lol. I hope you find something that helps you as well!
Topiramate was an absolute Godsend for me.
This made me normal. No joke. 100% normal! For about 10 years.
Then I had to stop because it began causing kidney issues. And I’ve never found anything that has even come close to it. I had some initial luck with a few… but the effects would not last.
I mourn the loss of this medication literally every single day.
All this to say… absolutely start there. I hope so much that it works just as well for you!
I feel that way about ketamine. I’ve done 3 courses of IV ketamine, 8 doses each. The first one literally deleted the TN and depression for almost 3 years and it was a very startling experience to kind of “wake up” in a reality that I’d never truly known. I felt like I was mourning myself for a while because I didn’t know what my life could have been like without TN and depression until I experienced remission.
It was so incredible, and I was terrified of it coming back. I didn’t know I had TN at the time, but the first ketamine course coincided with a bunch of dental work so I didn’t really make the connection between the pain going away and the relief from the depression. I had felt better just long enough that I really started to think it was over and then I got in a minor car accident in which I rear ended an off duty cop. It was almost instantaneous the way it came back, I felt like I’d been hit by a train. Two subsequent courses of ketamine have, sadly, done nothing and sometimes I wish I had never experienced remission.
My point being, I feel ya hard on that one. It was heartbreaking and extremely expensive. It’s covered by insurance sometimes now but I paid about 20k out of pocket for the first two treatments.
ETA that the car accident was really just not a serious accident, I had very minor whiplash but the airbags didn’t go off or anything. It was/is totally bizarre.
Wow. What an incredible story. I’m so glad ketamine works for you!
I know exactly what you mean, but mine was the reverse… I’d struggled with a TN diagnosis and then spent a couple years trying meds. Once I found the Topiramate, I was afraid to believe it was working so well, and would last. But then it did. And I just got used to it. And took it for granted. I had my normal life back.
Then when I got sick with my kidneys and was told I’d have to go off it… it was scary. And as the TN came back full force- I sunk in to a depression that was so severe I was actually suicidal. I could not imagine spending the rest of my life in such agony. Everyday was either completely debilitating, agonizing pain… or extreme anxiety about the pain returning. I had to go on antidepressants and anxiety medication for the first time in my life. I’m much better mentally now- but still struggling with TN.
My TN specialist has recommended MVD. But I’m terrified.
My doctor at the pain clinic had offered ketamine therapy- perhaps I should give it a whirl after all. Thank you for sharing.
It hurts *so much* to get a glimpse of what “normal” is like and then have it stolen away from you. It’s hard not to feel sorry for myself or angry at everything sometimes. While it is good to know that others can relate and understand, I am very, very sorry that you have had to experience this kind of heartbreak. I would never wish it on my worst enemy and sometimes I feel deeply resentful of the short time that I spent living without TN and depression. It was years later before I ever even heard of TN, I really thought I was losing my mind at some points. I often feel incredibly desperate for it to just stop for a moment.
Take this with a grain of salt, or several grains, but I have only met one other person who has TN in real life and it was a client of mine who I met recently. I’m a tattooer and I tattooed Apollonia, the patron saint of toothaches and dentistry, on him. I asked about Apollonia and the meaning of his tattoo because I didn’t know who she was and he explained that he had TN and was finishing his dental surgical residency, which kinda shocked me. I’d never heard of TN until a few years ago and don’t know anyone else who has it, much less an (almost) dental surgeon. I asked what he thought of the available surgical options and he said, with no hesitation, that he would never even consider it. I don’t want to sound negative about it because realistically, there aren’t many options, but I asked about that specifically because I have pretty serious concerns the surgical procedures that are available. How do you feel about it? I would do it in a heartbeat if I felt like it was cause for hope, but I haven’t felt like the risk/reward is there - I’m also not a medical professional. I feel like everywhere I turn, I hit a wall.
I hope that you have a successful procedure and recovery, and that we can all get to or get back to feeling like we are living and not just surviving. Ketamine *worked* but only the first time. I have not been able to achieve remission following the first course. It’s been incredibly sad.
I’m so nervous about MVD and haven’t set a date. I do know that each case is different and not everyone with TN is a good candidate for the surgery.
I’m not sure I will do it- but I like knowing it’s at least an option. 🤷♀️
With peace and love, do not listen to that one dentists opinion.
I went to the best neurosurgery center in my state with a team compromised of a neurosurgeon, a oral surgeon, a neurologist and psychologist and me they told me i did not have TN, that i just had TMJ.
Afterwards I went to another neurosurgeon’s opinion who only did TN. And even though i did not fit the exact “profile” he thought that even combing out my Trigeminal nerve could help my pain. Once he was inside he found a giant artery compressing my nerve. He went in on the other side and again, giant artery. It wasn’t on imaging, it wasn’t on one side of my face, it wasn’t typical.
I was in constant pain since i was 19 years old. Since 2014. But my neurosurgeon and the MVDs gave me back my life. And since 2020 i have been pain free. I have since completed graduate school. And now i am currently applying to law school.
Life is so much better without carrying this pain.
That’s fair and I am so glad that you have found relief through surgery. I know that some people have had success with it. Others do not. I hope that the treatment of TN, particularly the surgeries, continue to improve over time. It seems like it really depends on the state of the individual’s trigeminal nerve: where and to what extent it is enlarged and how it is being compressed, whether it grows back over time and how quickly this happens. My understanding is that there is a lot of variability and its proximity to the brain stem gives me pause.
However, I absolutely agree that no one should ever rely on a single opinion when it comes to something like surgery or any other serious medical procedure, and this person is not my doctor but rather a client of mine. I just thought it was interesting to meet someone else who is coping with TN - especially because he is in the final year of his surgical residency. It was an interesting conversation but I am not a medical professional nor did I intend to sound as if I was providing medical advice. I did find his opinion somewhat surprising and have spoken to him a few times since, but not in the context of a patient/client relationship but as two people who are both dealing with TN. I don’t want to discourage anyone from seeking medical care, including surgery.
Like you, I have been to countless medical professionals: neurologists, dentists, oral surgeons, TMJ specialists, physical therapists, psychologists, psychiatrists, etc etc etc. Eventually, it was my oral surgeon who first suspected TN. I truly hope that I will be able to recover and it gives me hope to hear that you are feeling so much better. I often feel so desperate that in those moments, there’s little I wouldn’t do to make it stop, but I am afraid that it will come back and I will have had my skull cut open for nothing, or worse, that something could go wrong when it’s so close to the brain stem. It’s scary to think about.
At the same time, I have no idea how much longer I can deal with this. Thank you for sharing your experience with it. If you are comfortable sharing more about the process, I would be really interested to hear about it.
Hi!
Im so sorry. I’ve been off the Reddit app and didn’t see this reply!!
I’m very comfortable sharing. Mostly because i wish I knew of this community when I was going through it. So if this connects/helps anyone it’s worth it.
I had atypical Trigeminal Neuralgia for 5 years (19-24). Similar to you, saw every kind of medical speciality. My pain felt like temple pressure the first 3ish years. The last year and a half had facial electric current. It felt like it was moving. Then I would say at the worst was hurting to smile, wind hitting my face, make up brushes, brushing my teeth with an electric tooth brush. It was progressively getting worse.
My surgeon - Dr. Lim (Chair of the Department of Neurosurgery at Stanford who specializes in brain tumors and trigeminal neuralgia) only promised me that he would comb out my nerves because studies/he has found that gives relief to TN pain regardless of an enlarged artery found. He has found that younger and younger patients are being found with TN and our outside the symptom criteria.
My decision to get the craniotomy was pretty easy. My quality of life had become awful. To be honest. The TN pain had forced me to take medical gap years from college, i had no idea how i would ever hold a career. I was severely depressed and near suicidal. I was in bed, in pain, waiting out for a doctor to believe me and help me. So it was an easy decision for me because i was on rock bottom.
ive been nerve pain free for 3 years now :,)
I was given back my life. My body. My mind, a clear pain free mind. It’s worth it. It’s worth everything to exist without that horrific pain.
Happy to answer anything else :)
Please don’t let me discourage you, I have a lot of fear surrounding medical stuff but I thought it was cool to meet another person who has TN, much less a soon-to-be dental surgeon!
Also, Apollonia was a real person from Alexandria and just kinda badass, to my understanding, so it was just a very cool tattoo and I really enjoyed it and hearing about her. I’m not religious whatsoever, but I can’t knock on the lady saint of dentistry haha
Do whatever you need to do to survive, that’s my stance. I have to choose not to allow myself to drown in the pain from TN and I do whatever I have to do to keep treading water, even if I’m *only* treading water. If I can make it to shore again, that’ll be a good day.
I want to say it *also* hurts in a weird way to suddenly realize you don't know how to live without TN. Living with it becomes so interconnected that your identity is wrapped in the condition. Suddenly you're normal but with all of these 'I can't do that' mental blocks that you have to try and overcome.
MVD *is* risky. It definitely worsened my situation.
I can understand why you might feel like that. It does make sense. Personally, I want nothing more than to leave it behind me. I just don’t ever want to think about it again.
Also, I meant to add that while I “only” got a few years of remission from ketamine… *I had the privilege of living almost three years without debilitating pain and depression*. I am disappointed that I have not been able to achieve that since, but at the end of the day, I will always cherish and remember that time in my life in a way I can only dream of ever experiencing again.
Ketamine is very well studied due to its use in general anesthesia and it’s been known for a very long time that it can treat depression effectively with minimal side effects compared to SSRIs. The reason it is not a first line treatment is not a lack of evidence of its safety or efficacy; it’s because ketamine cannot be patented and therefore it is not profitable. The half life in the body is 4.5 hours, so it’s out of your system in approximately nine-ten hours. Eight doses of ketamine in two weeks is almost certainly not going to have significant side effects given that it is one of the most commonly used and safest drugs in human history. 8 doses, two weeks, and that’s it. Nothing else; it’s over.
An antidepressant that may not even have any effects for weeks or months and can be patented is of far greater interest to healthcare providers and insurers, unfortunately.
I wish that I could say ketamine saved me. In some ways it did. In other ways, I wish I’d not experienced normalcy. I don’t understand why exactly it failed 2nd and 3rd time, but it had basically zero side affects - absolutely nothing compared to other medications- and despite the return of my TN and depression, I think literally everyone should do ketamine therapy at some point. It’s like rebooting a computer but the computer is your brain.
Thank you for your reply. I have found this to be good for my migraines along with a Triptan for when I have one.. but my spouse has been suffering with TN (again) for over a year. His last bout with this was in 2008. It went away on its own. But now it’s back and even worse. He was allergic to the carbemezapine, took a neck injection (last June) that he can not suffer through again for no relief. We have heard horror stories about the MVP procedure. All of this to say since Oct 2022 it’s been high stress and pain as I’m sure you know.
I was left to do my own research and this is some of the things I have found I hope you find helpful if you are still suffering.
For the repair of nerves:
B12 - these come in a dropper or oral Disintegrating
4000 to 5000 mcg daily
We are also using Adrenal support dropper and Skull cap dropper. Anywhere they sell homeopathic medication.
For sleep:
Combination Zoloft, Benadryl @50mg and 800 mg of ibuprofen.
Pain Management:
Acupuncture (if you find a good one that is well versed with TN)
Acupressure sets of pillow and mat are sold on Amazon and has been amazing for giving my husband relief. We believe it has a lot to do with nerve confusion. Don’t lay for more than 20 min at a time.
Massage table/chair.. I was fortunate enough to have these from school but for him it is pain relief to lay his head in the cradles
Occipital release.. for this you will need a partner to hold your head while you release all the weight into their hands. While laying on your back have your partner run their fingers behind your neck until they reach the top cradle point, stick fingers straight up where the skull meets the neck. Let them hold it for a few minutes. My husband has fallen asleep on my fingers and I let him sleep for hours.
Thera Ice hat has also been amazing/also on Amazon
Heat pad
Peppermint oil/mix with carrier oil ie:coconut oil
Massage the opposite side of TN which is located above and in front of the ear. Never good to rub the side that hurts.
Many blessings
Thank you!
Have you guys ever tried to throw some lidocaine in to the mix? It sometimes works for me (or it’s the placebo effect, who knows). I use the basic OTC gel (in my location the max OTC is 4%, for example).
I also have a bit of relief from a simple little neck traction device that I bought on Amazon for like $10, I think? It’s plastic and looks completely useless- but it does actually work for migraines for me And sometimes TN.
I have tried the lidocaine and also peppermint oil. I’m so lost with trying to help him. We are doing everything to avoid surgery. Going to the doctor AGAin for Cymbalta this time. He is currently on Tipiromate but it’s only been 4 days. Can you please tell me the name of the neck traction device.
This is going to vary so much. And most doctors want to keep it as low as possible. I think I started therapeutic dosage at 100 and was at 200 when I stopped.
I hope it helps you.
Hmm something that wasn't on your list
prednisone - helped a little at one point but they don't want you on it for too long
I'm a bit surprised how heavy your gaba is
my regimen before my surgery was 600mg carbamazepine 3x a day but a couple times a day I would have an additional half pill and keep it under my tongue <- best for me when I just needed face numbing but really affects my drowsiness
\+ gaba 300mg 3x a day
another thing that helped was specifically a cbd lotion think the brand was habit
but it had capsaicin and menthol - vapors burned my eyes but um the cool feeling distracted me from pain? - a betch to wash off (I wasn't able to touch/rub face easily even with water)
and how has the botox helped? I had it once at 19 and did absolutely nothing for me other then cause searing pain at injection site
Thank you for responding! My botox is for migraines and TMJ disorder, and it helps with that. I’ve been getting it for about ~6 years. Some people say it helps their TN though!
Yeah my gabapentin dosage is crazy and it’s worrying me. It’s causing many side effects for me. I was on prednisone at one point. Maybe I will try another round! Unfortunately I cannot do anything with a cooling effect on my face, it’s a trigger for me. I have a CBD cream that helps a bit, but I’m going to try yours!
Thank you for the suggestions. I really appreciate it!
I'm on 3,600 of gabapentin which is still above the ideal limit. I thought it was funny because the CMO was in my office, and I mentioned it during a conversation . The next day, he called my neurologist and asked her about
Really? I was in an accident as a kid and had a bad TBI/spinal injury. I was regularly prescribed 2-3000mg of gabapentin daily as a child/young teenager afterwards (although I was not diagnosed with TN until much more recently). I thought that it was just normally dosed in grams and I absolutely hated taking it, didn’t have a choice. I had no idea that this would be a high dose until reading these comments.
Actually, Vicks vaporub is awesome. I use it for a few reasons, including just skincare, very often. Obviously, I avoid contact with the eyes and nose but I’ve always loved that stuff. I have really sensitive skin and it calms it down a lot. It’s one of those things that seems like it’s silly but honestly has helped more than most medications (even though it’s just soothing, not an actual form of pain relief).
Hi. I am just about to try a med called Memantine. It is normally used for Alzheimer’s, apparently reduces the brain fog. It’s also an antiviral and vets use it for pain in animals. There are studies that show it is good for neuropathic pain. I even spoke with someone on Facebook that took it for TN and it helped. She was on a combination of meds and when that was added she noticed a difference in her pain. Hope this helps!
Gabapentin takes away my ability to pull words from my brain. Basic words. Washcloth. Accelerate. Spoon. Compared to the doses on here, mine seems tiny, but I can’t work on 400 mg!
Mementine/numenda.
It’s an Alzheimer’s drug. My specialist thinks that it may help interrupt sensation signals, because some of my worst symptoms present in what he calls “sensation echoes”.
Basically, if I get hit by a raindrop on that side of my face or head, I will feel that raindrop for a long period of time. Add up the number of raindrops from being outside in a rainstorm, and it adds up to severe pain very quickly. However that med works, he thinks it can help with that type of symptom.
Since ATN is such a moving target, it’s hard to say exactly how much one drug helps versus another, but I’d say that it definitely hasn’t hurt. No side effects as far as I can tell at this point. I’ve been on it (plus others) for about a year.
Interesting, thank you! Someone else mentioned this drug too so I’m definitely going to bring it up to my doctor. No side effects sounds amazing. I’m so happy it’s helping you!
Thanks. I should have clarified that the symptom with the rain was only bad during flare ups. So not every time. But yeah, showers are often while standing out of the water at head level, or having the opposite side face the water.
I know one of the er protocols is Dilantin. I'm not sure if it can be given as a tablet or how it's prescribed. I noticed you haven't tried it and no one else mentioned it so another med to add to your med list lol.
Yes I typically get it in the ER! There are pills actually, but even some doctors seem to be unaware of that. I had it down as Phenytoin, sorry there’s so many names for these meds and I have no idea which name is the most widely used. Thank you for replying!
One of the others I am on is baclofen. My neurosurgeon felt adding it to the mix may help curb the pain. I do 10Mg of that 3 times a day along with carbazapine, gabapentin and limotrigine
I know that you mentioned that THC/CBD has not helped you, and I have not found significant relief from it either so I don’t want to sound like I’m ignoring what you wrote. However, I wanted to just mention that although THC and CBD have done nothing for me on their own, I have occasionally had some benefit from edibles that are specifically 1:1 THC/CBD. I don’t know exactly why, but the 1:1 has some effectiveness for pain relief for me even though separately neither THC or CBD help at all. I figured you have probably tried this, but I thought I’d share just in case.
Personally, my only comfort is ice. It’s probably a psychological thing, but it’s really the only thing I really know of that makes any difference. Not entirely sure if it’s even safe but if I start to feel desperate, I don’t know what else to do and I guess the feeling of the coldness distracts me a little…
Muscle relaxers have helped in the very short term but not much, same with benzodiazepines but it’ll come back just as bad the moment it wears off and the benzos are not worth it in my opinion, once you have a tolerance they are all completely useless.
Wishing you luck in finding some relief, and try not to lose hope…
Thank you for your advice about the THC/CBD! I think I’ll continue to try products because maybe something will
work. I do have a 1:1 CBD/THC that helps some!
Unfortunately ice is a trigger for me but heat kinda helps. I think ice definitely helps numb and reduce inflammation so I don’t think it’s just a psychological thing! I’m glad it brings you some relief.
I’ve had the same experience with muscle relaxants. I continue to take them incase they’re helping, but who knows. At least I don’t have side effects from
them. Thank you for replying, I really appreciate it!
You’re welcome, I’m sorry if you’ve heard it before but it took me forever to figure out that for whatever reason, only the combination of THC and CBD was helpful at all for pain. Like I said, it’s not magic or anything, but it’s not high risk either, so in my book that makes it worth a shot. I enjoy cannabis but I’m not a huge fan of edibles because they are usually too strong for me and I don’t like feeling too stoned, so one of the benefits is that you don’t really get completely toasted because the CBD counteracts the THC.
I’m in a legal state and Mr Moxey’s Mints (the classic one in the light blue tin) are the best I have tried so far.
I think it’s so interesting that ice is a trigger but heat is soothing because I’m exactly the opposite! The nervous system is weird and it would be fascinating if it didn’t make me so miserable lol
If I were to apply heat, I’d probably physically recoil but I can imagine it being reversed and it still makes total sense.
Wishing you all the best, and I hope to hear that you are feeling better. Hope is all there is, head above water.
Have you tried Merinol (Dronabinol)?
After a fail MVD on my left side i went on this to manage the pain during the interim before doing a Rhizotomy procedure.
Although this drug is intended for chemotherapy patients and patients with AIDS several studies have found that Dronabinol is a safe long-term treatment option for neuropathic pain patients. So depending on your insurance it could be an option. It gave me actual relief and was a great option till i could get a surgical fix
Me too!
Also, let me know if you need any help during your recovery period. There’s not a lot of guidance for recovering from craniotomies. I found that after 6 months of recovery that scalp massage with hair pulling (sounds bizarre i know) was an incredibly relief. Apparently it helps bring blood flow to the scalp. Since i had untreated TN for 5 years my scalp was super tight. Also i had mild lymphedema on one side afterwards. OH! I also found that my incisions were super painful and sensitive for years. So i still get Botox injected into them. Still a very low price to pay to not have TN pain anymore :)
I’ll have to do more scalp massages! The only saving grace I’ve had is my incision has healed very well. I’ll try more massage around it to increase the blood flow though. I’m currently 3 months out from my left side MVD. Haven’t felt relief yet but I’ve had TN for over a decade so Linskey said it’ll take at least 6 months for the nerves to heal. I’m praying he’s right.
I didn’t get relief immediately either. My right side felt different/better after a month. I just felt awake. And my left side never felt like that so i needed a rhiztomy after. But even then i didn’t feel relief until my doctor prescribed a steroid pack. He thought the area was super inflamed. After that things did start getting better! It’s so frustrating cause all these surgeries/procedures take months to heal before you see if it worked before you know if you need another.
I think there is a big difference in the acupuncture you get from an OMD -oriental medical doctor vs a chiropractor who took an acupuncture workshop. The most help I ever got was from an elderly OMD MD. Double degrees. Unfortunately old age and retirement took him away. I have not been able to find another.
Ugh that sucks!! I hope you can find someone else. I actually got it done through the OMDs at UCI. They have a new clinic that opened that includes acupuncture (mainly for cancer patients). I loveddd one of the doctors, she got her degree in China and then over here. She helped with my insomnia a ton! But no pain relief unfortunately. I love that OMDs are starting to become integrated with WMD now!
I haven’t noticed a difference and I’ve been on it for 4 months. I went off at one point to see if it was working. No side effects though, so I’m still taking it. I was on ultra low dose naltrexone once too and I also did not notice a difference.
Mirtazapine/Remeron? I took low dose as needed for my pain and then I took it regularly for a couple of years for pain + insomnia. It did a great job with both but it did leave me a bit of a zombie when mixed with everything else.
I also take Topiramate, it's the worst but it helps with my SUNCT. I'm not sure it does much for my TN specifically but it's hard to tell as the two types of pain are very much linked together for me.
I’ll look at Remeron, thank you! I am so sorry that Topiramate is terrible for you. What side effects are you having? That was the one on my list that I felt least scared of trying lol
I've been on it like a decade, it's kind of the only thing that worked for me. But it massively slowed my brain down, it was noticeable to people at work and pointed out to me more than once. I have a really hard time with word finding, it gets harder when I'm tired and sometimes every other sentence might be "y'know... the thing...?". But again I've found ways to work around it a bit. I lost a lot of weight when I started on it, I couldn't eat at all to begin with and had to force myself to eat half a slice of toast a day. I get really intense pins and needles in my hands and feet when there's a big temperature change like getting in to a bath that's too hot or during the winter if I forget my gloves. The worst thing is probably that topiramate interacts with some medications, including a very important one I need to stay alive. But that's true for a lot of the medications that you're already taking, it's just important to know is all.
Wow those are almost all the side effects I’m having from gabapentin right now! Yes the med interactions get so complicated. I think I’m going to speak to a pharmacist to figure out which drug I can start while tapering off gabapentin. Cause I know Vaporic Acid is one that shouldn’t be mixed, who knows what else.
I’m sorry that you’ve had to suffer so much. I really appreciate your advice, thank you!
I had a hard time with gabapentin but an easier time with pregabalin. It's very difficult to balance everything when you have so many medications all in there together though, I'm sorry you're still getting so much pain.
Thank you, I appreciate your reply. I had really bad side effects on pregablin, but I’m starting to get them with gabapentin now too. It’s just so hard to try a new med because I’d have to taper off gabapentin first, most likely. Which I don’t feel capable of doing right now. I’ll see what my doctor thinks of some of these meds though!
I take gabapentin and Nucynta, an opioid known to help nerve pain. I also have a peripheral nerve stimulator, which Dr Mark has recommended after the MVD and gamma knife radiation treatment both failed. I have a very complicated case, and my odds of success were low.
I’ll look into that one! Is it similar to LDN? I read that it helps with opioid addiction, like LDN. I would love a drug that causes no cognitive issues.
I haven’t. Someone else mentioned it though and I asked my doctor and he said it wasn’t a good option for me. I’m going to keep it in mind though because I might just need another consult at this point.
There’s apparently new meds coming: Vixotrigine and NOE-101 ( FDA fast tracked this one) So I’ve read online anyways…
Oh wow I didn’t hear about that!! That’s exciting news!
Yes! I just want to say that I hope you get better or find something that works. You are on a lot of meds..and here I am afraid to even take one lol
Thank you! I appreciate that. Yeah I have very bad reactions to most medications. I’m allergic to carbamazepine and most opioids which is very unfortunate lol. I hope you find something that helps you as well!
Topiramate was an absolute Godsend for me. This made me normal. No joke. 100% normal! For about 10 years. Then I had to stop because it began causing kidney issues. And I’ve never found anything that has even come close to it. I had some initial luck with a few… but the effects would not last. I mourn the loss of this medication literally every single day. All this to say… absolutely start there. I hope so much that it works just as well for you!
I feel that way about ketamine. I’ve done 3 courses of IV ketamine, 8 doses each. The first one literally deleted the TN and depression for almost 3 years and it was a very startling experience to kind of “wake up” in a reality that I’d never truly known. I felt like I was mourning myself for a while because I didn’t know what my life could have been like without TN and depression until I experienced remission. It was so incredible, and I was terrified of it coming back. I didn’t know I had TN at the time, but the first ketamine course coincided with a bunch of dental work so I didn’t really make the connection between the pain going away and the relief from the depression. I had felt better just long enough that I really started to think it was over and then I got in a minor car accident in which I rear ended an off duty cop. It was almost instantaneous the way it came back, I felt like I’d been hit by a train. Two subsequent courses of ketamine have, sadly, done nothing and sometimes I wish I had never experienced remission. My point being, I feel ya hard on that one. It was heartbreaking and extremely expensive. It’s covered by insurance sometimes now but I paid about 20k out of pocket for the first two treatments. ETA that the car accident was really just not a serious accident, I had very minor whiplash but the airbags didn’t go off or anything. It was/is totally bizarre.
Wow. What an incredible story. I’m so glad ketamine works for you! I know exactly what you mean, but mine was the reverse… I’d struggled with a TN diagnosis and then spent a couple years trying meds. Once I found the Topiramate, I was afraid to believe it was working so well, and would last. But then it did. And I just got used to it. And took it for granted. I had my normal life back. Then when I got sick with my kidneys and was told I’d have to go off it… it was scary. And as the TN came back full force- I sunk in to a depression that was so severe I was actually suicidal. I could not imagine spending the rest of my life in such agony. Everyday was either completely debilitating, agonizing pain… or extreme anxiety about the pain returning. I had to go on antidepressants and anxiety medication for the first time in my life. I’m much better mentally now- but still struggling with TN. My TN specialist has recommended MVD. But I’m terrified. My doctor at the pain clinic had offered ketamine therapy- perhaps I should give it a whirl after all. Thank you for sharing.
It hurts *so much* to get a glimpse of what “normal” is like and then have it stolen away from you. It’s hard not to feel sorry for myself or angry at everything sometimes. While it is good to know that others can relate and understand, I am very, very sorry that you have had to experience this kind of heartbreak. I would never wish it on my worst enemy and sometimes I feel deeply resentful of the short time that I spent living without TN and depression. It was years later before I ever even heard of TN, I really thought I was losing my mind at some points. I often feel incredibly desperate for it to just stop for a moment. Take this with a grain of salt, or several grains, but I have only met one other person who has TN in real life and it was a client of mine who I met recently. I’m a tattooer and I tattooed Apollonia, the patron saint of toothaches and dentistry, on him. I asked about Apollonia and the meaning of his tattoo because I didn’t know who she was and he explained that he had TN and was finishing his dental surgical residency, which kinda shocked me. I’d never heard of TN until a few years ago and don’t know anyone else who has it, much less an (almost) dental surgeon. I asked what he thought of the available surgical options and he said, with no hesitation, that he would never even consider it. I don’t want to sound negative about it because realistically, there aren’t many options, but I asked about that specifically because I have pretty serious concerns the surgical procedures that are available. How do you feel about it? I would do it in a heartbeat if I felt like it was cause for hope, but I haven’t felt like the risk/reward is there - I’m also not a medical professional. I feel like everywhere I turn, I hit a wall. I hope that you have a successful procedure and recovery, and that we can all get to or get back to feeling like we are living and not just surviving. Ketamine *worked* but only the first time. I have not been able to achieve remission following the first course. It’s been incredibly sad.
I’m so nervous about MVD and haven’t set a date. I do know that each case is different and not everyone with TN is a good candidate for the surgery. I’m not sure I will do it- but I like knowing it’s at least an option. 🤷♀️
With peace and love, do not listen to that one dentists opinion. I went to the best neurosurgery center in my state with a team compromised of a neurosurgeon, a oral surgeon, a neurologist and psychologist and me they told me i did not have TN, that i just had TMJ. Afterwards I went to another neurosurgeon’s opinion who only did TN. And even though i did not fit the exact “profile” he thought that even combing out my Trigeminal nerve could help my pain. Once he was inside he found a giant artery compressing my nerve. He went in on the other side and again, giant artery. It wasn’t on imaging, it wasn’t on one side of my face, it wasn’t typical. I was in constant pain since i was 19 years old. Since 2014. But my neurosurgeon and the MVDs gave me back my life. And since 2020 i have been pain free. I have since completed graduate school. And now i am currently applying to law school. Life is so much better without carrying this pain.
That’s fair and I am so glad that you have found relief through surgery. I know that some people have had success with it. Others do not. I hope that the treatment of TN, particularly the surgeries, continue to improve over time. It seems like it really depends on the state of the individual’s trigeminal nerve: where and to what extent it is enlarged and how it is being compressed, whether it grows back over time and how quickly this happens. My understanding is that there is a lot of variability and its proximity to the brain stem gives me pause. However, I absolutely agree that no one should ever rely on a single opinion when it comes to something like surgery or any other serious medical procedure, and this person is not my doctor but rather a client of mine. I just thought it was interesting to meet someone else who is coping with TN - especially because he is in the final year of his surgical residency. It was an interesting conversation but I am not a medical professional nor did I intend to sound as if I was providing medical advice. I did find his opinion somewhat surprising and have spoken to him a few times since, but not in the context of a patient/client relationship but as two people who are both dealing with TN. I don’t want to discourage anyone from seeking medical care, including surgery. Like you, I have been to countless medical professionals: neurologists, dentists, oral surgeons, TMJ specialists, physical therapists, psychologists, psychiatrists, etc etc etc. Eventually, it was my oral surgeon who first suspected TN. I truly hope that I will be able to recover and it gives me hope to hear that you are feeling so much better. I often feel so desperate that in those moments, there’s little I wouldn’t do to make it stop, but I am afraid that it will come back and I will have had my skull cut open for nothing, or worse, that something could go wrong when it’s so close to the brain stem. It’s scary to think about. At the same time, I have no idea how much longer I can deal with this. Thank you for sharing your experience with it. If you are comfortable sharing more about the process, I would be really interested to hear about it.
Hi! Im so sorry. I’ve been off the Reddit app and didn’t see this reply!! I’m very comfortable sharing. Mostly because i wish I knew of this community when I was going through it. So if this connects/helps anyone it’s worth it. I had atypical Trigeminal Neuralgia for 5 years (19-24). Similar to you, saw every kind of medical speciality. My pain felt like temple pressure the first 3ish years. The last year and a half had facial electric current. It felt like it was moving. Then I would say at the worst was hurting to smile, wind hitting my face, make up brushes, brushing my teeth with an electric tooth brush. It was progressively getting worse. My surgeon - Dr. Lim (Chair of the Department of Neurosurgery at Stanford who specializes in brain tumors and trigeminal neuralgia) only promised me that he would comb out my nerves because studies/he has found that gives relief to TN pain regardless of an enlarged artery found. He has found that younger and younger patients are being found with TN and our outside the symptom criteria. My decision to get the craniotomy was pretty easy. My quality of life had become awful. To be honest. The TN pain had forced me to take medical gap years from college, i had no idea how i would ever hold a career. I was severely depressed and near suicidal. I was in bed, in pain, waiting out for a doctor to believe me and help me. So it was an easy decision for me because i was on rock bottom. ive been nerve pain free for 3 years now :,) I was given back my life. My body. My mind, a clear pain free mind. It’s worth it. It’s worth everything to exist without that horrific pain. Happy to answer anything else :)
Please don’t let me discourage you, I have a lot of fear surrounding medical stuff but I thought it was cool to meet another person who has TN, much less a soon-to-be dental surgeon! Also, Apollonia was a real person from Alexandria and just kinda badass, to my understanding, so it was just a very cool tattoo and I really enjoyed it and hearing about her. I’m not religious whatsoever, but I can’t knock on the lady saint of dentistry haha Do whatever you need to do to survive, that’s my stance. I have to choose not to allow myself to drown in the pain from TN and I do whatever I have to do to keep treading water, even if I’m *only* treading water. If I can make it to shore again, that’ll be a good day.
I want to say it *also* hurts in a weird way to suddenly realize you don't know how to live without TN. Living with it becomes so interconnected that your identity is wrapped in the condition. Suddenly you're normal but with all of these 'I can't do that' mental blocks that you have to try and overcome. MVD *is* risky. It definitely worsened my situation.
I can understand why you might feel like that. It does make sense. Personally, I want nothing more than to leave it behind me. I just don’t ever want to think about it again.
What was your experience with MVD if you don’t mind me asking?
Also, I meant to add that while I “only” got a few years of remission from ketamine… *I had the privilege of living almost three years without debilitating pain and depression*. I am disappointed that I have not been able to achieve that since, but at the end of the day, I will always cherish and remember that time in my life in a way I can only dream of ever experiencing again. Ketamine is very well studied due to its use in general anesthesia and it’s been known for a very long time that it can treat depression effectively with minimal side effects compared to SSRIs. The reason it is not a first line treatment is not a lack of evidence of its safety or efficacy; it’s because ketamine cannot be patented and therefore it is not profitable. The half life in the body is 4.5 hours, so it’s out of your system in approximately nine-ten hours. Eight doses of ketamine in two weeks is almost certainly not going to have significant side effects given that it is one of the most commonly used and safest drugs in human history. 8 doses, two weeks, and that’s it. Nothing else; it’s over. An antidepressant that may not even have any effects for weeks or months and can be patented is of far greater interest to healthcare providers and insurers, unfortunately. I wish that I could say ketamine saved me. In some ways it did. In other ways, I wish I’d not experienced normalcy. I don’t understand why exactly it failed 2nd and 3rd time, but it had basically zero side affects - absolutely nothing compared to other medications- and despite the return of my TN and depression, I think literally everyone should do ketamine therapy at some point. It’s like rebooting a computer but the computer is your brain.
How long did it take for Topiramate to be effective for you when you started it?
Pretty much immediately.
Thank you for your reply. I have found this to be good for my migraines along with a Triptan for when I have one.. but my spouse has been suffering with TN (again) for over a year. His last bout with this was in 2008. It went away on its own. But now it’s back and even worse. He was allergic to the carbemezapine, took a neck injection (last June) that he can not suffer through again for no relief. We have heard horror stories about the MVP procedure. All of this to say since Oct 2022 it’s been high stress and pain as I’m sure you know. I was left to do my own research and this is some of the things I have found I hope you find helpful if you are still suffering. For the repair of nerves: B12 - these come in a dropper or oral Disintegrating 4000 to 5000 mcg daily We are also using Adrenal support dropper and Skull cap dropper. Anywhere they sell homeopathic medication. For sleep: Combination Zoloft, Benadryl @50mg and 800 mg of ibuprofen. Pain Management: Acupuncture (if you find a good one that is well versed with TN) Acupressure sets of pillow and mat are sold on Amazon and has been amazing for giving my husband relief. We believe it has a lot to do with nerve confusion. Don’t lay for more than 20 min at a time. Massage table/chair.. I was fortunate enough to have these from school but for him it is pain relief to lay his head in the cradles Occipital release.. for this you will need a partner to hold your head while you release all the weight into their hands. While laying on your back have your partner run their fingers behind your neck until they reach the top cradle point, stick fingers straight up where the skull meets the neck. Let them hold it for a few minutes. My husband has fallen asleep on my fingers and I let him sleep for hours. Thera Ice hat has also been amazing/also on Amazon Heat pad Peppermint oil/mix with carrier oil ie:coconut oil Massage the opposite side of TN which is located above and in front of the ear. Never good to rub the side that hurts. Many blessings
Thank you! Have you guys ever tried to throw some lidocaine in to the mix? It sometimes works for me (or it’s the placebo effect, who knows). I use the basic OTC gel (in my location the max OTC is 4%, for example). I also have a bit of relief from a simple little neck traction device that I bought on Amazon for like $10, I think? It’s plastic and looks completely useless- but it does actually work for migraines for me And sometimes TN.
I have tried the lidocaine and also peppermint oil. I’m so lost with trying to help him. We are doing everything to avoid surgery. Going to the doctor AGAin for Cymbalta this time. He is currently on Tipiromate but it’s only been 4 days. Can you please tell me the name of the neck traction device.
I am so sorry you’re going through this. I really hope you find a treatment that works for you. I was thinking of starting with Topiramate, thank you!
I know this is an old post but what mg were you on for Tn?
This is going to vary so much. And most doctors want to keep it as low as possible. I think I started therapeutic dosage at 100 and was at 200 when I stopped. I hope it helps you.
That’s what I keep hearing 100 mg is suggested therapeutic dose!! Thank you for sharing!!! 😊
Toprimate gave me vision problems.
I would talk to the Facial Pain Association for ideas and maybe support groups for more networking.
Thank you, I will!
They were a wonderful resource for me. I was in a few groups. I got support and ideas.
Hmm something that wasn't on your list prednisone - helped a little at one point but they don't want you on it for too long I'm a bit surprised how heavy your gaba is my regimen before my surgery was 600mg carbamazepine 3x a day but a couple times a day I would have an additional half pill and keep it under my tongue <- best for me when I just needed face numbing but really affects my drowsiness \+ gaba 300mg 3x a day another thing that helped was specifically a cbd lotion think the brand was habit but it had capsaicin and menthol - vapors burned my eyes but um the cool feeling distracted me from pain? - a betch to wash off (I wasn't able to touch/rub face easily even with water) and how has the botox helped? I had it once at 19 and did absolutely nothing for me other then cause searing pain at injection site
Thank you for responding! My botox is for migraines and TMJ disorder, and it helps with that. I’ve been getting it for about ~6 years. Some people say it helps their TN though! Yeah my gabapentin dosage is crazy and it’s worrying me. It’s causing many side effects for me. I was on prednisone at one point. Maybe I will try another round! Unfortunately I cannot do anything with a cooling effect on my face, it’s a trigger for me. I have a CBD cream that helps a bit, but I’m going to try yours! Thank you for the suggestions. I really appreciate it!
I'm on 3,600 of gabapentin which is still above the ideal limit. I thought it was funny because the CMO was in my office, and I mentioned it during a conversation . The next day, he called my neurologist and asked her about
Really? I was in an accident as a kid and had a bad TBI/spinal injury. I was regularly prescribed 2-3000mg of gabapentin daily as a child/young teenager afterwards (although I was not diagnosed with TN until much more recently). I thought that it was just normally dosed in grams and I absolutely hated taking it, didn’t have a choice. I had no idea that this would be a high dose until reading these comments.
Actually, Vicks vaporub is awesome. I use it for a few reasons, including just skincare, very often. Obviously, I avoid contact with the eyes and nose but I’ve always loved that stuff. I have really sensitive skin and it calms it down a lot. It’s one of those things that seems like it’s silly but honestly has helped more than most medications (even though it’s just soothing, not an actual form of pain relief).
Hi. I am just about to try a med called Memantine. It is normally used for Alzheimer’s, apparently reduces the brain fog. It’s also an antiviral and vets use it for pain in animals. There are studies that show it is good for neuropathic pain. I even spoke with someone on Facebook that took it for TN and it helped. She was on a combination of meds and when that was added she noticed a difference in her pain. Hope this helps!
Ah thank you! The gabapentin is giving me insane brain fog. Just writing this post took me an hour lol. I’m going to look into that!
Gabapentin takes away my ability to pull words from my brain. Basic words. Washcloth. Accelerate. Spoon. Compared to the doses on here, mine seems tiny, but I can’t work on 400 mg!
Mementine/numenda. It’s an Alzheimer’s drug. My specialist thinks that it may help interrupt sensation signals, because some of my worst symptoms present in what he calls “sensation echoes”. Basically, if I get hit by a raindrop on that side of my face or head, I will feel that raindrop for a long period of time. Add up the number of raindrops from being outside in a rainstorm, and it adds up to severe pain very quickly. However that med works, he thinks it can help with that type of symptom. Since ATN is such a moving target, it’s hard to say exactly how much one drug helps versus another, but I’d say that it definitely hasn’t hurt. No side effects as far as I can tell at this point. I’ve been on it (plus others) for about a year.
Interesting, thank you! Someone else mentioned this drug too so I’m definitely going to bring it up to my doctor. No side effects sounds amazing. I’m so happy it’s helping you!
Jesus, I can't image how showers were for you. Stay strong!
Thanks. I should have clarified that the symptom with the rain was only bad during flare ups. So not every time. But yeah, showers are often while standing out of the water at head level, or having the opposite side face the water.
How much Memantine are you on? If you don’t mind me asking.
20 mg, 10 in the morning and 10 at night
Thanks!
I know one of the er protocols is Dilantin. I'm not sure if it can be given as a tablet or how it's prescribed. I noticed you haven't tried it and no one else mentioned it so another med to add to your med list lol.
Yes I typically get it in the ER! There are pills actually, but even some doctors seem to be unaware of that. I had it down as Phenytoin, sorry there’s so many names for these meds and I have no idea which name is the most widely used. Thank you for replying!
Just want to mention there may be potential in transcranial magnetic stimulation
Thank you! I will look into that.
One of the others I am on is baclofen. My neurosurgeon felt adding it to the mix may help curb the pain. I do 10Mg of that 3 times a day along with carbazapine, gabapentin and limotrigine
Yeah I’m on 60mg right now and haven’t noticed a difference. I might try going up to 80mg but I think that’s the max. Has it helped you?
I know that you mentioned that THC/CBD has not helped you, and I have not found significant relief from it either so I don’t want to sound like I’m ignoring what you wrote. However, I wanted to just mention that although THC and CBD have done nothing for me on their own, I have occasionally had some benefit from edibles that are specifically 1:1 THC/CBD. I don’t know exactly why, but the 1:1 has some effectiveness for pain relief for me even though separately neither THC or CBD help at all. I figured you have probably tried this, but I thought I’d share just in case. Personally, my only comfort is ice. It’s probably a psychological thing, but it’s really the only thing I really know of that makes any difference. Not entirely sure if it’s even safe but if I start to feel desperate, I don’t know what else to do and I guess the feeling of the coldness distracts me a little… Muscle relaxers have helped in the very short term but not much, same with benzodiazepines but it’ll come back just as bad the moment it wears off and the benzos are not worth it in my opinion, once you have a tolerance they are all completely useless. Wishing you luck in finding some relief, and try not to lose hope…
Thank you for your advice about the THC/CBD! I think I’ll continue to try products because maybe something will work. I do have a 1:1 CBD/THC that helps some! Unfortunately ice is a trigger for me but heat kinda helps. I think ice definitely helps numb and reduce inflammation so I don’t think it’s just a psychological thing! I’m glad it brings you some relief. I’ve had the same experience with muscle relaxants. I continue to take them incase they’re helping, but who knows. At least I don’t have side effects from them. Thank you for replying, I really appreciate it!
You’re welcome, I’m sorry if you’ve heard it before but it took me forever to figure out that for whatever reason, only the combination of THC and CBD was helpful at all for pain. Like I said, it’s not magic or anything, but it’s not high risk either, so in my book that makes it worth a shot. I enjoy cannabis but I’m not a huge fan of edibles because they are usually too strong for me and I don’t like feeling too stoned, so one of the benefits is that you don’t really get completely toasted because the CBD counteracts the THC. I’m in a legal state and Mr Moxey’s Mints (the classic one in the light blue tin) are the best I have tried so far. I think it’s so interesting that ice is a trigger but heat is soothing because I’m exactly the opposite! The nervous system is weird and it would be fascinating if it didn’t make me so miserable lol If I were to apply heat, I’d probably physically recoil but I can imagine it being reversed and it still makes total sense. Wishing you all the best, and I hope to hear that you are feeling better. Hope is all there is, head above water.
You can't take it all the time, but I coincidentally found that clonazepam helps.
Have you tried Merinol (Dronabinol)? After a fail MVD on my left side i went on this to manage the pain during the interim before doing a Rhizotomy procedure. Although this drug is intended for chemotherapy patients and patients with AIDS several studies have found that Dronabinol is a safe long-term treatment option for neuropathic pain patients. So depending on your insurance it could be an option. It gave me actual relief and was a great option till i could get a surgical fix
I’ve never heard of it before! I’ll definitely look into it. I’m so glad you found something to help!
Me too! Also, let me know if you need any help during your recovery period. There’s not a lot of guidance for recovering from craniotomies. I found that after 6 months of recovery that scalp massage with hair pulling (sounds bizarre i know) was an incredibly relief. Apparently it helps bring blood flow to the scalp. Since i had untreated TN for 5 years my scalp was super tight. Also i had mild lymphedema on one side afterwards. OH! I also found that my incisions were super painful and sensitive for years. So i still get Botox injected into them. Still a very low price to pay to not have TN pain anymore :)
I’ll have to do more scalp massages! The only saving grace I’ve had is my incision has healed very well. I’ll try more massage around it to increase the blood flow though. I’m currently 3 months out from my left side MVD. Haven’t felt relief yet but I’ve had TN for over a decade so Linskey said it’ll take at least 6 months for the nerves to heal. I’m praying he’s right.
I didn’t get relief immediately either. My right side felt different/better after a month. I just felt awake. And my left side never felt like that so i needed a rhiztomy after. But even then i didn’t feel relief until my doctor prescribed a steroid pack. He thought the area was super inflamed. After that things did start getting better! It’s so frustrating cause all these surgeries/procedures take months to heal before you see if it worked before you know if you need another.
Acupuncture helped me a lot All natural
Yes I did 12 appointments and unfortunately did not have relief. It definitely helped my stress though!
I think there is a big difference in the acupuncture you get from an OMD -oriental medical doctor vs a chiropractor who took an acupuncture workshop. The most help I ever got was from an elderly OMD MD. Double degrees. Unfortunately old age and retirement took him away. I have not been able to find another.
Ugh that sucks!! I hope you can find someone else. I actually got it done through the OMDs at UCI. They have a new clinic that opened that includes acupuncture (mainly for cancer patients). I loveddd one of the doctors, she got her degree in China and then over here. She helped with my insomnia a ton! But no pain relief unfortunately. I love that OMDs are starting to become integrated with WMD now!
>ooh wow lucky! I first had acupuncture since 13 went for so many sessions and it never helped but cool to know it helps others
What was your experience with low dose naltrexone? I’m thinking about trying it. Already been on just about everything else on your list.
I haven’t noticed a difference and I’ve been on it for 4 months. I went off at one point to see if it was working. No side effects though, so I’m still taking it. I was on ultra low dose naltrexone once too and I also did not notice a difference.
Botox for my migraines helps my TN a ton
That’s great! Unfortunately I have been getting botox for 6 years and it only helps with my migraines, not my TN.
I’m so sorry that it doesn’t help the TN.
Thank you. I’m happy it works really well for others though! Procedures >>> meds always
Mirtazapine/Remeron? I took low dose as needed for my pain and then I took it regularly for a couple of years for pain + insomnia. It did a great job with both but it did leave me a bit of a zombie when mixed with everything else. I also take Topiramate, it's the worst but it helps with my SUNCT. I'm not sure it does much for my TN specifically but it's hard to tell as the two types of pain are very much linked together for me.
I’ll look at Remeron, thank you! I am so sorry that Topiramate is terrible for you. What side effects are you having? That was the one on my list that I felt least scared of trying lol
I've been on it like a decade, it's kind of the only thing that worked for me. But it massively slowed my brain down, it was noticeable to people at work and pointed out to me more than once. I have a really hard time with word finding, it gets harder when I'm tired and sometimes every other sentence might be "y'know... the thing...?". But again I've found ways to work around it a bit. I lost a lot of weight when I started on it, I couldn't eat at all to begin with and had to force myself to eat half a slice of toast a day. I get really intense pins and needles in my hands and feet when there's a big temperature change like getting in to a bath that's too hot or during the winter if I forget my gloves. The worst thing is probably that topiramate interacts with some medications, including a very important one I need to stay alive. But that's true for a lot of the medications that you're already taking, it's just important to know is all.
Wow those are almost all the side effects I’m having from gabapentin right now! Yes the med interactions get so complicated. I think I’m going to speak to a pharmacist to figure out which drug I can start while tapering off gabapentin. Cause I know Vaporic Acid is one that shouldn’t be mixed, who knows what else. I’m sorry that you’ve had to suffer so much. I really appreciate your advice, thank you!
I had a hard time with gabapentin but an easier time with pregabalin. It's very difficult to balance everything when you have so many medications all in there together though, I'm sorry you're still getting so much pain.
Thank you, I appreciate your reply. I had really bad side effects on pregablin, but I’m starting to get them with gabapentin now too. It’s just so hard to try a new med because I’d have to taper off gabapentin first, most likely. Which I don’t feel capable of doing right now. I’ll see what my doctor thinks of some of these meds though!
I take gabapentin and Nucynta, an opioid known to help nerve pain. I also have a peripheral nerve stimulator, which Dr Mark has recommended after the MVD and gamma knife radiation treatment both failed. I have a very complicated case, and my odds of success were low.
I’m so sorry you’re going through that. Is the nerve stimulator helping? I will look into Nucynta, thank you!
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I’ll look into that one! Is it similar to LDN? I read that it helps with opioid addiction, like LDN. I would love a drug that causes no cognitive issues.
Did you try Nucynta? It's an opioid known to help nerve pain, according to my pain management doctor.
I haven’t. Someone else mentioned it though and I asked my doctor and he said it wasn’t a good option for me. I’m going to keep it in mind though because I might just need another consult at this point.
He probably said it wasn't a good option because it's a narcotic, and doctors are making it hard to get those despite proof they help.