Hi. I have had type 2 TN for at least 5 years, tho only had MRI 2 years ago and they could see artery pressing on 5th trigeminal, which confirmed what I already knew from my symptoms. It affects third branch (right side jaw, tongue, teeth, ear, lips). It sometimes goes into remission for as long as a year. But lately it has been worse than ever. I believe it is exacerbated by stress, and my life has been stressful. I saw acupuncturist, but he made it worse – now I have two spots (one below my lip, and one behind my ear) that are hypersensitive and quite excruciating if touched even by a feather. I have been using CBD oil the last week or 10 days. Not sure if it is helping honestly. I do not want to start heavy meds, tho I have made appointment w neurologist. Anyone have any holistic cure recommendations? I cannot live with this level of constant pain–it never goes away. It is always there, and it is affecting my ability to chew and speak at times cause both activities make it hurt so much. I am excited to have found this site. Oh, I am 60 years old and otherwise very healthy. Thanks!
Hi
I am so sorry that you have to go through this.I have atypical-but have nothing show up on MRI.
I have found peppermint essential oil helps a lot.I tried diluting with carrier oil but did not work and almost gave up on it-but full strength dulls the pain.
Also-lidocaine patches-Salon Pas -fairly cheap.people will just cut the size they need and that makes them even more economical.
Zostrix-a hot pepper cream-rubbed along the nerve.
That’s all i have for natural stuff.And I will say all of these ideas came from other people on this board-so I don’t want you to thank ME.Thank them.
If you go to almost the bottom of the menu there is a section for alternative therapy.maybe something will be there for you.
For me-even with the peppermint oil my pain is brutal.Even with the meds some time.
i have been using CBD oil for about 2 years now.Recently upped it to 2ml a day.Expensive yes.
I will stay at that dose for about 2 months and hope for the best.It must help something in my body,if not my mouth pain.
I am 61 and otherwise healthy,too.
Wishing you wellness.
thank you so much! So you apply topical stuff to the TN itself, not where the pain is? That makes sense, but I had not thought of it. I am only using about 15mL (a dropperful) of CBD oil (1000 mg strength, but now I bought 500 to save money, cause you are right, it is NOT cheap). I dose twice a day. Not sure yet if it is helping. I seem to think it is a bit, but not much…
Thanks again for taking the time to reach out. Truly appreciated.
Hi there
No worries.
bad pain day for me so doing things like this helps.
I don’t know how the strength is measured where you are.I am in Canada and
the highest prescription grade CBD I can get is about 26mg/ml-so one
dropper full is only 26mg…
I take 2 dropper fulls a day.
I don’t know whether it helps but I will keep at it a few more months.Must
be helping something ,right?just really hard on the pocketbook
I am ordering it online at a reputable dispensary in Colorado (I live in Idaho and cannot purchase it locally, or have to drive over an hour into Oregon). Not certain how to translate your 26mg/mL against a bottle that is 500 mg potency and 15 mL. I use a dropper at a time, which is about 1 mL, twice a day. My son tells me a lot of folks aren’t sure if it is helping and then when they stop and the condition worsens, they realize it was helping. We shall see. I am hopeful. But it sure is pricey.
Have a good day, Ellen. Stay in touch.
Best,
Pam
I would encourage you to not rule out “heavy meds” – by heavy meds I assume you mean prescription. Often the amount of medication needed to help with ATN is very slight, all things considered, and considering the level of the medication used by those that are battling the traditional treatments like antidepressant and antiseizure.
The main thing you want to do with the nuerologist is start all meds low and slow. Tiny doses with tiny increases about every two weeks until you hit that sweet spot where the pain reduces. Taking too much medication can reduce the effectiveness. And, ATN is known to get worse over time and stop responding to medication so you want to give yourself as much room in dosing options as you can. One nice thing about ATN is that it tend to respond to pain management. Lidocaine tends to work on it (SalonPas is 4% OTC or it’s available by prescription at 5%) as do narotic pain kills. A low dose of a narotic may very well take the edge off for you, especially combined with lidocaine.
Keep in mind also that holistic meds do not mean safe or effective or better than manufactured items. Generally holistic means unregulated.
Thank you for your well thought out info. I do Hesitate to take anti-seizure or pain medication but will listen to neurologist and the recommendations. I appreciate your taking the time to respond.
Best
Pam
I forgot to mention: Ask the doctor about trileptal. I was told that ATN always responds to the first dose of trileptal to some extent. If you take it and it does nothing it may not be ATN and you should keep looking for a Dx/cause.
I had an MRI two years ago that clearly showed an artery pressing on my fifth trigeminal so I’m pretty Comfortable with the diagnosis. Thank you for the info on that medication.
I did not respond to trileptal.The alternate cause is Persistent Idiopathic Facial Pain.
If you got anything other than TMJ let me know.They say not a TMD disorder.
Am interested if you have any other possible alternates.?
Going to a new pain clinic in a couple weeks so I would like to share as much as I can because the next appointment may be half a year away.
Thanks
Hi, do you also get pain in your teeth or it feels like it’s your teeth? Did you have a dental injury? I use a compound med and it goes into a stent which covers my sore area. I can’t handle any meds, just tried keppra and had to get off after 4days. Tomorrow my doc is trying a nerve block by my ear and other pressure points. CBD oil will not touch neuropathic pain. I do take klonipin. This has been going on 6 yrs. Don’t be afraid to try the drugs, many get relief, wish I could take them
I have heard that,too.But someone I know ,actual person,not online,was helped greatly-the first remission she has had in years with medical grade CBD oil over the course of 2 months.So it is worth a shot.Could help with inflammation.I take THC oil at night,too . which helps with sleep-but I always wake up in pain.
I had dental work and pain in tooth.No one has talked of a stent to me.
Just a topical rub that helps with the meds-but I would take the whole container in a day if that is all I had.
Who made the stent and the special potion? A dentist?
I don’t think I have enough teeth to hold anything on the the tooth and gum that is sore.
Wish there was an easy way out of this.
Pray for remission is all I can think to say.
My stent was made by my facial pain doctor. Without it your saliva washes the meds away. It all sucks and painful
You know I ran out of CBD cause of shipping problems at the place i ordered from (cause I can’t buy it locally). It will come today. But i had to lower my dosage a lot the last few days, and today I had none, and yesterday half what I was used to, and I am in a lot more jaw and tongue pain than usual, so maybe it was tempering things a bit. I will go back to two dropperfuls a day as soon as I get the package in the mail today. Then I will use it consistently for the next two weeks or so and see how things go.
Hope you have a good day today.
Pam
I hope your order comes in soon.It is all so frustrating.The more we do to control the pain it almost seems like the pain try to figure a way around it.
I almost wonder if the more we take the worse it gets-but I cannot imagine not taking anything.
Hello, I do hope some of these ideas help you and not sure all your symptoms but the old ice & heat is gentle and yet can help. I have TN and many other things. Ice can numb if you want safe & simple. I make ice packs with food saver so I can cut sizes how I want & need. I use hand help heat w/red bulb & have heat back wrap same as one of those heat pads. But Ione thought it is easy to forget what you are eating and how it agrivates all you are feeling. Plastic utensils & paper cups help avoid touching your teeth, lips & all those nerve with something hard. All any chewing anything hard even soft can contribute to flaring up what is going on. Finding soft foods, liquids always work just know habit of eating what is normal without making changes or cutting things real small even soft foods, not picking up biting things, sandwiches just eating is a must but hope it isn’t hurting you more. So many nerves & TN just can be agrivates more with all going in. And if wind going outside hurts I wear a scarf around my face or handmade crochet wrap it helps me & not sure if will for you but truly hope you feel better and get help you need. Opiods are hard to accept but your function and quality of life matters. Doctor’s can try other meds but yes all meds even homeopathic can have side effects so just I would not try more then one at time or if works or you have side effect if you are trying more then one at time you won’t know which I be is helping or hurting. If I can help more I’d sure like too. Our thoughts are with you. Hang on & feel better.
Thanks! I do use ice at times and I do have to pay attention to what types of food (hard and chewy are difficult). I so much appreciate your kind support.
Trileptal, generic called oxcarbamazapiene, works really good.
Narcotics work good too I wouldn’t rule them out. It might really help you.
Alexsmom, support is definitely here from so many, thanks for reply & hope you & your son have a great weekend. And next comment I do agree medicine has a place & knowing what is working for us in our conditions we deal with sure helps we share.
I think it is those side effects that are aweful, especially if super sensitive as I am. The pain we individually experience interferes with the lives we lead or want to I believe it is crucial to not feel bad with this opiod crisis and the stigma a lot of drugs people put on those of us needing them…reality is we are trying to function with basic things some people can never imagine.
Hi there. I live in Australia but I have just had an appointment with a professor who is a specialist and proforms stem cell treatment with great sucess. I like you have ATN. Stem cells are expensive but he has also had great sucess with the following medication Palmitoylethanolamide. It is all natural. If you google it there is lots of people who have had great success. I myself have only just started so at this point can’t say if it has or hasn’t worked for me. But thought I would let you know. Sending love.