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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

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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.

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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!

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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.

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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.)

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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.

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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.

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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.

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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

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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.

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[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.

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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

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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

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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

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Fleinsuppe t1_jdj3lpc wrote

Has weed tolerance not affected the pain management?

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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

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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?

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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

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