trigeminal neuralgia and seeking advice

I won't get into all the ugly details but have trigeminal neuralgia (TN). I have tried numerous medications but due to the side effects, I need to stop. I'm currently taking tegretol (anti epileptic) which did help stop the last flair but now I feel it's robbing me of a quality life- I'm constantly nauseas, always tired, and I slurr my speech and occasionally find myself word searching- who knows what's its doing to my organs, especially my liver. I told myself in the beginning that I would happily deal with these side effects rather than the debilitating- bring you to your knees-wish for death pain attacks that I had been experiencing. The medication just sucks and there MUST be an alternative.
I am not in a legal state so there is very little way of opening up this conversation with my pcp or neurologist. I am in the medical field and know all too well how these conversations lead to shitty assumptions regarding patients. So until there is more acceptance and legalization in the New England state I reside, I'm determined to grow what I need to "replicate" tegretol'a ability to prevent/treat nerve pain, as well as a strain that would provide serious pain relief if needed.
Thoughts, experiences, any pearls of wisdom?

Hey OTS, sorry to hear about your condition, sounds like something that could drive you insane. Don't know anyone with this condition or much about the disease itself but applaud you for trying to find a way around the pharma meds, and screw the law - look after your own interests as no one else will!.

That said, I grow (illegally) for many of the same reasons pushing you to do it. I needed meds to initially deal with my own cancer (5 years since initial treatments and good to go!), and since then I also provide it to a few patients I've come across in similar situations - that is, needing meds but not having access to good MJ at reasonable/affordable prices.

One thing I had which could relate to your issue was sciatic nerve pain, brutal for about 6 months after chemo treatments. I found MJ helped a lot in a couple of areas, there was some pain relief with an Indica strain I had access to. With Sativa's which I was growing at the time, the physical pain relief was questionable, but the head stone allowed me to "forget" or focus less on the pain. Don't know if that makes any sense but when you're in extreme pain, any distraction that moves the focus away from the pain (all you think about at the time) helps big time. I had tried some pharma meds my doctor's gave me but the side effects were too many so I got by with the MJ. To this day, in my mid-fities and I take nothing, MJ is my medicine, with some bonus side-effects

Some suggestions from my experiences:
Find a good indica-dominant strain, typically better than most sativas for body effects and pain relief. I grow one called Blue Pyramid (Pyramid Seeds) for this purpose. Also very good for edibles.
Find a good sativa-dominant strain, typically better for mood elevation, more energetic/head stone. Good for distraction when the pain is heavy and fighting depression.
For pain, edibles are a lot more effective as the body effects/pain relief are much stronger than anything I've ever smoked. Find some recipe's and keep your trim/popcorn for this purpose. My personal favourites are caps which I make with coconut oil and dry sift hash or "kief". I eat/consume a lot more than I smoke. My nighttime "sleeping pill" is a camomile tea with a Blue Pyramid bud in it, sleep like a baby

Cheers, good luck and if you need any help don't be afraid to ask here or PM...

I am a fellow TN sufferer and have had it for about 12 years. I love smoking pot but it doesn't help with my TN at all. At least not in any physical way that I can feel. Smoking puts me in a better mood and helps me deal with the stress I experience because of my condition but it really doesn't do anything for me with regard to nerve pain.
The best thing I have found came after a recent pain flare up and subsequent visit to my current neurologist. The doctor mentioned a new treatment that was being tried for TN. He prescibed a topical cream for me to apply to my face a couple of times daily. It works extremely well for me. I cannot say enough good things about this cream. I apply this cream and it keeps me pain free for months. I don"t have to take any Tegretol now as I don't have any pain for months. The pain does return slowly after months but it is a big improvement over taking tegretol and experinecing its side effects.
The cream is called KGD3BCB is sold by prescription from Infinty Compounding Solutions in Bentonville Arkansas.
Another thing which I found that gave me some low level pain relief was taking 50 mg of Benadryl every 4 to 8 hours or so. I told this to my neurologist and she said that she had heard the same thing from other patients. I dunno, taking Benadryl allowed me to take a smaller dose of Tegretol so I got less of the side effects.
Hope some off this helps

OneToyStory said:

I won't get into all the ugly details but have trigeminal neuralgia (TN). I have tried numerous medications but due to the side effects, I need to stop. I'm currently taking tegretol (anti epileptic) which did help stop the last flair but now I feel it's robbing me of a quality life- I'm constantly nauseas, always tired, and I slurr my speech and occasionally find myself word searching- who knows what's its doing to my organs, especially my liver. I told myself in the beginning that I would happily deal with these side effects rather than the debilitating- bring you to your knees-wish for death pain attacks that I had been experiencing. The medication just sucks and there MUST be an alternative.
I am not in a legal state so there is very little way of opening up this conversation with my pcp or neurologist. I am in the medical field and know all too well how these conversations lead to shitty assumptions regarding patients. So until there is more acceptance and legalization in the New England state I reside, I'm determined to grow what I need to "replicate" tegretol'a ability to prevent/treat nerve pain, as well as a strain that would provide serious pain relief if needed.
Thoughts, experiences, any pearls of wisdom?

Click to expand...

https://www.leafly.com/explore/symptoms-pain

As a retired RN I hear you on others in our fields. Pain is often due to inflammation as you know. Use Leafly and explore different strains known to help pain. I would suggest at least one high CBD, low THC strain just to deal with inflammation myself. Others with THC to reduce the stress from a bothersome and painful condition.