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roodeeMental t1_jddxvtr wrote

I suffer with a rare form of neuralgia- a type of neuropathic pain

It started one day age 24, and left me unable to talk though the pain, or function - unimaginable pain. Neurologists started with sedatives, then gabapentin, yet nothing helped really. I started smoking weed, and as long as I kept up frequent use, it turned down the pains by 95%. Now I live a normal life again, sorta

Edit: I wrote a post about my neuralgia if anyone's interested


terpin t1_jde1kh7 wrote

Neuropathic pain is insane, I had such an insane level of it I didn't even know I was experiencing headaches. I recently found out I have an atypical migraine disorder that was disrupting my whole body, literally crippling me, to the point they thought I had a brain tumor, intercranial hypertension, MS or some esoteric autoimmune disease this last year.

A neurologist gave me topiramate to see if it could get rid of the visual snow I got after I caught covid (which kicked off all this), and instead it turned off a lot of my pain. It's been like a godsend. My dominant hand was rated disabled by my OT and was completely recovered within a month a starting treatment. My vision is recovering, it's so crazy.

I even had this weird issue where I'd been peeing fire for a year, and it was gone. No one thought it might be a brain problem, they just told me it was because my diet was bad. So nuts. Glad you found something that worked for you, no one should live with that pain.


roodeeMental t1_jde2j2f wrote

When my condition was first looked at, they said it could be MS or a brain tumour too- those were scary times

When I was travelling and went to Indonesia, where weed is really illegal, I went 7 days without smoking and was by day 7 into constant spasm. A king pin on the island took pity, heard the issue an gave me a joint, amd told to to walk out into the ocean to smoke it away from everyone and not be caught. I was back to normal before I finished the joint. It's my godsend! I'm glad you found yours too!


UtterTrashAcct t1_jdgoolc wrote

Topiramate can be very helpful. Please also research the warnings and side effects as long term use can cause a certain type of glaucoma. Found out the hard way.


terpin t1_jdhxw41 wrote

Was it the topiramate induced angle closure, or another form of glaucoma?

Sorry to ask, but I've only been on it for a couple months and I'm going up another 25mg this weekend (it'll be my final uppage, my neuro won't go beyond 75mg for management for my condition.)


UtterTrashAcct t1_jdihx6r wrote

Topiramate induced. Was only on 50mg. Interestingly, a shocking amount of medications (especially antidepressants which are commonly prescribed) can also cause this in some instances. So many folks don’t research pharmaceuticals and their risks and I wonder about patient education (other than the often overlooked pharmacy insert) and physician/pharmacist follow up.


terpin t1_jdij6i1 wrote

Thanks for letting me know, I'll keep an eye on it. I've had some severe psychological side effects while on it but they seem to have worn off (but so did the effectiveness), hoping they won't repeat round two :(

I did some research myself and saw the manufacturer is in the middle of a lawsuit right now due to not educating patients about the risks of birth defects and blindness. Really sorry you went through that, I'm actually being treated for something to avoid blindness so I'm praying I don't get that. It's so hard to treat and this is the only thing that's helped me so far.


UtterTrashAcct t1_jdkxtot wrote

Glad to help. Yep, kinda hilariously ironic that they use it for patients with PTC/IIHT to prevent vision damage, but then it can cause further vision damage. Dunno wtaf they’re thinking.


Lemonio t1_jderugs wrote

What do you smoke? I have neuropathic pain and had wanted to try it but wasn’t sure what to get and how much. Also since my neuropathic pain is in the throat I’d probably do edibles, but there was a lot of different products and I was confused


hurtindog t1_jdfqk0w wrote

You should investigate whole plant oils. There is a product called Rick Simpson oil. You should read about it. It has super high THC so I’ve heard they do a “ not as THC heavy “version. You can also take it as a suppository and it won’t affect your thinking too much. It’s geared to Chemo patients but I’ve heard of it used for severe nerve pain.


[deleted] t1_jdheu9g wrote

If it's made from CBD or CBG flower, too, you get the whole-plant benefits without the THC. I've been using CBG+CBD for neuropathy and they work a treat together.


roodeeMental t1_jdets9g wrote

I live in the UK right now, and edibles are usually just homemade. The problem with them, is they're hard to regulate usage, effects take a while, and they can hit kinda hard all at once.

I smoke sativas because they're generally higher in THC, and I find it dampens the nerve problem very quickly. It seems degenerative this condition, if that's the right word, or progressive. After over a decade of usage for this condition, I've found personally 4 small paper spliffs (I mix lightly with tobacco), 2 in the morning and 2 at night is the minimum to keep me good - about 0.5g a day, even with progressive effects of this condition, dosage has remained fairly constant. May I ask what the condition is? THC is great for general neural on the brain, whereas CBD is better locally in my understanding


Lemonio t1_jdeufng wrote

I don’t think the exact condition is known - I can buy things legally here online, so perhaps something I will try


roodeeMental t1_jdeuu1d wrote

It's still a very unknown area. I wish you the best of luck!

If you don't want to smoke, there's always THC vape pens and oils. Experiment, it may change your life


Fleinsuppe t1_jdj3lpc wrote

Has weed tolerance not affected the pain management?


roodeeMental t1_jdj44ad wrote

No, it's not that I need to be stoned, but rather have a certain amount in the body to keep the pain at bay, so tolerance doesn't matter really. I'm glad too, because with the tolerance, I can function without having to be stoned too


Fleinsuppe t1_jdj5cu3 wrote

So you don't increase dosage? It seems whatever's responsible for the high (THC/ terpentines) is not involved in pain management. Have you ever tried pure THC like oils and such?


roodeeMental t1_jdj5x1b wrote

Oils definitely work. I've tried vapes and I'm sure they work. I only say sure because I'd need to come off smoking to fully see how it helps, and that's surprisingly difficult


cornerofgraystreet t1_jde4tks wrote

Too bad we aren't 'allowed' in this prude ass place to easily do testing on health conditions


iam666 t1_jderhe0 wrote

Are you referring to CBD research not being allowed, or just general research on “health conditions”?

Because in either case I don’t know what you’re talking about. You’re literally looking at a study about using CBD to treat a health condition.


cornerofgraystreet t1_jdesnd9 wrote

I'm simply talking about the lack of research, due to legal impediments prohibiting research at the most basic levels. I'm talking about research involving all parts of the cannabis plant as a whole. Blanket statement. Not JUST CBD. Simple as that....


tornpentacle t1_jdlrayp wrote

The hell are you talking about? There are a bazillion papers on all sorts of cannabinoids, full spectrum extracts, etc. You are spreading misinformation.


OuidOuigi t1_jdh3a4d wrote

What is preventing the rest of the world from doing so? Or is the entire world a "prude ass place" ?


ddx-me t1_jdeppk0 wrote


Objectives: This study aimed to investigate the effect of cannabidiol (CBD) on type 4 Toll-like receptors (TLR4), glial cells and pro-inflammatory cytokines during the neuropathic pain induced by the chemotherapy agent paclitaxel (PTX), as well as the involvement of the endocannabinoid system in this process.

Methods: Male C57BL6 mice were subjected to PTX-induced neuropathic pain. To evaluate the involvement of the TLR4, glial cells and cannabinoid CB2 receptor, specific inhibitors or antagonists were intrathecally administered. The western blotting and immunofluorescence assay was performed to evaluate the spinal expression of TLR4, microglia, astrocytes and cannabinoid CB2 receptor. The levels of spinal pro-inflammatory cytokines and endocannabinoids were determined by enzyme-linked immunosorbent assay and liquid chromatography-mass spectrometry analysis, respectively.

Key findings: CBD prevented PTX-induced neuropathic pain, and the cannabinoid CB2 receptor antagonist AM630 reversed this effect. In addition, CBD treatment inhibited the spinal expression of TLR4 and Iba1 in mice with neuropathic pain. CBD also increased spinal levels of endocannabinoids anandamide and 2-arachidonoylglycerol, and reduced levels of cytokines in mice with neuropathic pain.

Conclusions: CBD was efficient in preventing PTX-induced neuropathic pain, and this effect may involve inhibition of the TLR4 on microglia spinal with activation of the endocannabinoid system.

Keywords: cannabidiol; glial cells; neuropathic pain; pro-inflammatory cytokines.

My commentary - while encouraging, rats can't really tell us if they're having pain. Will need to test CBD versus a placebo in randomized trial to truly see if there is actual pain relief clinically.


SaltZookeepergame691 t1_jdeqvnq wrote

It’s also a very high dose injected directly into the spine.

Good RCTs into this question could have been done years ago, but most are terrible. I’ll believe a substantial pain modulating effect when it’s proven (and if there is one, it will be easy to do so).


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oldastheriver t1_jdebjy4 wrote

sadly CBD and THC (which are in clinical trials in countries around the world for tumor shrinkage) elevate liver numbers and can't be used in liver cancer cases.


86784273 t1_jdf6yyo wrote

Do you have a source i can read up on?


oldastheriver t1_jdfgtuv wrote

This happened in our family. The clinical trials in Spain used THC to shrink tumors, was in third phase!


86784273 t1_jdfkapm wrote

Sorry i meant source for the elevating of liver values


oldastheriver t1_jdimla5 wrote

Our liver cancer patient tried it for pain - It was the only thing she did that was different, and she already had liver cancer, and it caused her liver numbers to go up. Might be different for somebody that doesn't already have liver cancer.


zoedot t1_jdg7rqo wrote

I’ve been using a CBD/cbc/CNG/cbn formula (and temporarily green lipped mussel powder) for an unknown inflammatory issue with my pet cockatoo. Although the multi cb_ has been more recent, CBD has been the constant over the last year. Blood tests over the past year show lower, not raised liver values. I use human versions for him, not pet grade. Recently, he finally had “normal” bloodwork, and seems healthy.


Redneck2Researcher t1_jdeg6p1 wrote

You basically need THC for CBD to work though.


Specialist_Carrot_48 t1_jdgnsad wrote

CBD inhibits the negative effects of THC. but also makes it more difficult to get "stoned". CBD keeps the paranoia away, and stop down regulation of CB1 receptors through it's antagonist qualities increases andamide. You don't "need" thc for CBD to work, they are incorrect. Mixing with CBG, CBC, CBT, CBN and a little DMSO if it is used topically and you have a powerful mood boosting system wide antinflammatory. I put it on my rosacea and take it orally. Works pretty well, but it's just another piece to this puzzle of health I'm chasing.


FieldSton-ie_Filler t1_jdhqbd0 wrote

This is is the right comment.

Ultra broad spectrum works super well. Thc helps, but you do not need it to reap the benefits.


roodeeMental t1_jdekrzw wrote

So yes, for a lot of things. CBD works on your CB2 receptors, which your peripheral nervous is loaded in. CB1 are mainly in the central nervous system, and loaded around places like you hippocampus in humans, which THC clings to. In other animals its different, so you'll find weed will mess with co-ordination a lot more. I personally for my condition need the whole package, and not just CBD

CBD is more like a muscle relaxant when soley used.

At least this is what I remember reading a while back


Specialist_Carrot_48 t1_jdgnhck wrote

You should try H4CBD. Clear headed and nice warm body high with a particular cheerful quality, I assume from more andamide

It's very harsg when smoked and works better smoked and in mct oil it can give you good body pain relief and mood increase


Responsible-Cry266 t1_jdvjsnt wrote

For me it's a muscle relaxant nerve relaxant and also a pain resistor and of course helps with anxiety . Because of this I'm with you and also have to have the complete shebang.


jonnyclueless t1_jdf6fcp wrote

Certainly hasn't worked for mine, but glad it works for some ppl.


Dying4aCure t1_jdgajjv wrote

Estrogen positive cancers can see progression from estrogenic effects of marijuana. The studies are not conclusive either way. Please keep this in mind when using marijuana.


[deleted] t1_jdhej0o wrote



Dying4aCure t1_jdl48wi wrote

If you go search on Pub Med, it is not. There are studies saying both things. They have no definitive answer. Since my cancer is 100% estrogen positive I chose to not use it. I don’t like the way it makes me feel anyway. Do a bit of research.