For a short time since my last Med increase took effect, I was blissfully going along with 3/10 constant pain, able to eat and sleep somewhat. Then the familiar 4pm - overnight pain started creeping in… it got worse… then started earlier and earlier. The last two times this happened, it got earlier until it was 24 hours a day. It’s quite bad - I can’t chew and I can’t sleep at all. I was on 800mg a day recently. I have gabapentin but it hasn’t helped. My lidocaine nasal spray cuts it by about 20%, but that’s not enough to let me chew or sleep. I started with 200mg of carbamazepine a day in January! It’s been increased twice, and now I’m allowed to go to the max of 1200mg a day. I am increasing at 100mg a day, because I don’t know what will happen when I get to the true max. I’m only about 100 lbs and it will take a week or so for the carbamazepine to even help, if that little increase even does.
I have ATN and lots of other stuff hasn’t helped. Topical lidocaine, ice, heat, Tylenol… I’m allergic to NSAIDs. I saw a great neurosurgeon who said I could have the usual surgeries including gamma knife. I can’t get in to see a neurologist until August! I actually had a doctor that I don’t see for pain, but who is a pain specialist. They haven’t returned calls for over a month???
Any recommendations? I’m only 40 and am afraid of this as my life, and it’s taking all of my hope away. I just keep getting worse, fast, and this has only been a problem since the fall or so. I know none of the fixes are permanent, and my MRI didn’t show any vessel problem on the bad side (it DID on the good side!). So, I’m told I cannot have MVD. I have a lot of other medical issues, so surgery will be kind of a mess anyway. I’d consider them… but what happens when they wear off, at my age??
I’m so sorry to hear you’re going through this. I was on carbamazepine for awhile but it made me feel really sick all the time so I looked into CBD oil. I have been using it for almost 4 years now and it has given me back my life. I go for months now with no pain. I still get an occasional attack but the pain doesn’t get as intense as it used to. If you want more information let me know.
I also highly recommend exploring vitamins B12 and D3 – I started using them because of anecdotal information on this site and have not have a bad flare up in the five years since I started taking them. I also suggest trying lidocaine patches, which are available in the drug store at 4% strength or with a prescription at 5% strength, although your insurance probably won’t coverage it at prescription strength without a prior authorization.
Oh yes, I have been taking those supplements for years (methylcobalamin B12, 1000mcg SL daily, and 5000 IU D daily) . I was low in both many years ago. I do use the lidocaine 5% patches and haven’t had any effect, partly because most of my pain is “deep”, internal, or in my face. I was just going to look up alternative remedies today!
My other neuropathy has responded well to ALA and acetyl L carnitine supplements.
That would be amazing. I tried some that works for my mom and kept adding more… it had no effect. I’m on 900mg a day of carbamazepine for now. I have continuous pain, usually controlled by it, but not lately.
I wear a patch on my face regularly, whenever I get that “funny not quite right” feeling before actual burning pain. Do you know you can cut the patch to fit the area? I use about a quarter of a patch on my face running the strip along the nerve that’s bothering me. If anyone comments negatively I tell them I cut myself shaving. HA!
Interesting! Most of my pain is “under” my teeth, in my gums, in the roof of my mouth, and feeling deep in my face bones. I did try cutting up a patch before I started meds.
I get itchy or tingly before the pain “moves into” an area.
Random thought for you — the TN nerve actually runs in front of the ear and back behind the ear, maybe applying a piece of patch in either or both locations around the ear will help numb the nerve and stop the pain signal from getting through? Might be worth a try.
As a side note, I had a nightmare last night that all my teeth fell out, woke up with the funny TN feeling… UGH.
The first thing I have to stress is you can not just stop taking your meds if you want to try using the CBD oil. I went to a medical marijuana doctor to discuss this and he told me to introduce the oil to my system while I was still on my meds. You put a droperful of oil under your tongue and hold it there for 30-60 seconds before swallowing once in the morning and then again at night. After doing that for a couple of days he told me to decrease my meds in very small increments at a time. I used to take one and a half pills in the morning and at night. To cut back the doctor told me to reduce my evening dose to just one pill instead of one and a half. Do that for five days. Then he had me reduce my morning dose by half for another 5 days and so on. It took about a month for me to be completely weaned off the meds. This is very important because if you just stop your meds without weaning yourself off them you could have a seizure. So in that month of weaning off the meds I was also introducing my body to CBD oil.
What the CBD oil has done is make me have much fewer flare ups. If I am getting an attack and take more CBD oil it won’t do anything, it won’t stop the attack or even reduce the pain. I just want to stress that because I know that people take it when they’re in pain, have no relief and they just blow it off like it doesn’t help. It does help but not in that way.
You have to be patient, it’s going to take time for your body to adjust to the changes.
I hope this can help and if you need anymore information please let me know.
Thanks. I would definitely not reduce my meds unless I was already more comfortable, and I only change carbamazepine dose by 100mg total per day. But, I don’t so much have flare ups as constantly gnawing pain. I haven’t been pain free without meds since early January. If I can eat and sleep, which I can’t now, I am satisfied.
I may try this, but am not as sure about my atypical seeming type of TN…
I have atypical TN too. Mine is in and around my left ear and the lower side of my face. I don’t have the stabbing type pain, mine is one long awful pain that lingers for hours and hours. Just introducing the oil into your system without stopping your meds might be beneficial. Give it a good 3 weeks before you determine if you are seeing any results or not. It’s definitely worth a try.
I will. I don’t know if my mom has that much oil to share. Do you have a recommendation for a brand or anything? I don’t know much about this.
My pain gets worse for a while when I trigger it, but there is a pretty bad underlying pain that never leaves and gets worse as the afternoon and evening go on. At night, it’s quite unbearable even if I don’t trigger it at all (that means skipping dinner for one).
I used to buy my oil on Amazon. I used Restorative Botanicals 400 mg high strength oil. A 1 ounce bottle sells for $22.45 and usually lasts me maybe 3 weeks. Over the last year a CBD store opened near where I live and I’ve been going there, I find their oil to be a very good quality I’ve been using it for over a year now. They have an online store too, Steve’s Goods is the name. Right now they’re running what they call a bundle and it’s 3 one ounce bottles of the 500mg oil I use for $69, which is a pretty good price. I also used to buy it at Lucky’s supermarket if you have those where you live, the one by me closed down sadly.
I am so sorry you are suffering - I hope you get some suggestions here that help. I have had two mvds -one each side. I was in my forties when I got TN and am now 55. I’m not the same as before but I am here and functional most of the time to some degree. I still have ugly breakthroughs but I am alive thanks to the surgeries. I am allergic to a lot of the meds, had no luck with mj, cbd, acupuncture or chiropractic unfortunately. I think my face mask is flaring me as well. What I want to share with you is that with my second surgery, my neurologist did not see vessel problems but sent me to the neurosurgeon who did see them and showed me on the scan- can you have a second doctor perhaps a neuro surgeon who performs mvds look at your scans? Maybe she/he will see something different- and you can get help. I’m told gamma knife can work but I’ve only had mvds. I wish you all the best and I’m so sorry for the pain we share.
I was on carbamazepine for a short time in the beginning but was changed to Oxcarbazapine which worked for years before my liver enzymes got too high and the pills didn’t work anymore but it may help you. Worth it to check with your doctor.
Hi there, it’s gonna take weeks for that med to titration up in your system.,
I know it sucks to have to wait, when it’s SO overwhelmingly painful!
I’ve had TN for sixteen years now.
First eight years were bad, but these last eight, slowly began to improve for me.
Hang in there, things can evolve, if you get to where you are crying every day, thinking about your future… well then it may be
a good idea to talk with you primary doc for help.
I am living proof it can get better… just takes a long time.
Keep communication lines open with your neurologist and your primary care physician.
They cannot help you, if they don’t know how you’re doing.
Best wishes to you for a brighter and fulfilling
Future!
Min