terpin t1_jde1kh7 wrote on March 23, 2023 at 6:50 PM

Reply to comment by roodeeMental in CBD Was Efficient In Preventing Chemotherapy-Induced Neuropathic Pain by Defiant_Race_7544

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 on March 23, 2023 at 6:56 PM

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 on March 24, 2023 at 7:21 AM

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 on March 24, 2023 at 2:58 PM

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 on March 24, 2023 at 5:05 PM

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 on March 24, 2023 at 5:13 PM

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 on March 25, 2023 at 3:36 AM

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.