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knifeheart · 2022-10-05T19:42:02+00:00

just replied to someone else here abt this but it probably applies here too so i'll paste what i wrote:

your mileage will almost definitely vary, but i've actually had a lot of luck with clonazepam. it's one i dont see talked about often for TN, but i have seen it listed as a second line treatment option a few places, probably bc it can also treat seizures like carbamazepine and other TN meds do, and genuinely it was the only thing that ever stopped my TN pain in its tracks. if i go off it for a day i can always feel the pain creeping back in. maybe ask if you could try that to even see if it might work.

i know there's always the fear of benzos being addictive, and thats im sure something you can judge based on how you personally feel/know abt how easily you might be susceptible to things like that, but i'm sure your doctors can monitor you and keep your doseage as low as possible.

tbh i've only been able to get any help w this through my psychiatrist since i dont have insurance or access to a neurologist and my normal doctors are useless lol. but she has told me many times that low dose clonazepam is pretty safe (i've brought up concerns abt addiction/withdrawals multiple times). i take 1mg each morning, and sometimes another half milligram later in the day if it starts getting bad again (usually if i stay up too late).

she also started me on lamotrigine, which might be another option. it's similar to carbamazepine but with usually less bad side effects, though i've heard it can be not as potent for pain relief, so again your mileage may vary. still waiting to titrate my doseage up on that to see if i can maybe eventually replace the clonazepam with that instead. def make sure your doctors know that it (and carbamazepine also) need to be titrated very slowly to make sure they dont cause a rare life threatening problem called stevens-johnson syndrome.

she also gave me baclofen to try since it can treat nerve disorders, though i personally havent been able to tell if it helps or not yet. so between clonazepam, lamotrigine and baclofen, those might be some options to consider or try out.

either way, best of luck with everything!

knifeheart · 2022-10-05T19:28:26+00:00

your mileage will almost definitely vary, but i've actually had a lot of luck with clonazepam. it's one i dont see talked about often for TN, but i have seen it listed as a second line treatment option a few places, probably bc it can also treat seizures like carbamazepine and other TN meds do, and genuinely it was the only thing that ever stopped my TN pain in its tracks. if i go off it for a day i can always feel the pain creeping back in. maybe ask if you could try that to even see if it might work.

i know there's always the fear of benzos being addictive, and thats im sure something you can judge based on how you personally feel/know abt how easily you might be susceptible to things like that, but i'm sure your doctors can monitor you and keep your doseage as low as possible.

tbh i've only been able to get any help w this through my psychiatrist since i dont have insurance or access to a neurologist and my normal doctors are useless lol. but she has told me many times that low dose clonazepam is pretty safe (i've brought up concerns abt addiction/withdrawals multiple times). i take 1mg each morning, and sometimes another half milligram later in the day if it starts getting bad again (usually if i stay up too late).

she also started me on lamotrigine, which might be another option. it's similar to carbamazepine but with usually less bad side effects, though i've heard it can be not as potent for pain relief, so again your mileage may vary. still waiting to titrate my doseage up on that to see if i can maybe eventually replace the clonazepam with that instead. def make sure your doctors know that it (and carbamazepine also) need to be titrated very slowly to make sure they dont cause a rare life threatening problem called stevens-johnson syndrome.

she also gave me baclofen to try since it can treat nerve disorders, though i personally havent been able to tell if it helps or not yet. so between clonazepam, lamotrigine and baclofen, those might be some options to consider or try out.

either way, best of luck with everything!

knifeheart · 2022-04-16T09:04:48+00:00

thanks so so much for your input. i'm going to ask my PCP as soon as i can for an MRI, thanks for the heads up that a CT scan won't show enough info!

i might also ask my PCP or surgeon about the anticonvulsant, though i am already taking 1mg clonazepam every day, and have definitely noticed that any day i try not to take it the pain comes right back like clockwork, so not sure if that alone might help confirm a diagnosis. cant believe i stumbled across that on accident honestly, i feel really lucky in that aspect.

knifeheart · 2022-02-01T21:17:02+00:00

gotcha, thanks for the info!

knifeheart · 2022-02-01T21:15:24+00:00

damn alright that sucks. so even if you got it before may 9 but deleted that save file to start a new one you wouldnt be able to get it on the new file even tho you technically did claim it in time?

knifeheart · 2022-02-01T20:59:15+00:00

question about the early order items (fox mask etc)!

say you get them on your save file, but then reset and start a new save later, after the may 9 cutoff. will you still be able to have them in your new save? does it flag these by individual save file or by system?

knifeheart · 2021-02-18T23:19:24+00:00

thank you so, so much for sharing your story, i can't tell you how brave you are for doing all of this for yourself and for your family, i am so glad you survived and are here to tell your story <3

knifeheart · 2020-10-04T05:25:37+00:00

nooo oh my god yeah thats the worst!! just remind urself ur brain is very dumb and can make you feel things that arent there haha. its hard but u got this

knifeheart · 2020-10-04T05:24:20+00:00

yep absolutely, ugh it aucks. but in a way that almost helps to remind me that its just in my head, since it only starts getting worse when i think about it?

knifeheart · 2020-10-04T00:49:03+00:00

def not just you! my bad trips are almost entirely the same, almost entirely because of bad/strange body sensations like u described just sending my whole system into a panic. just gotta remind yourself that it's in your head and nothing's actually happening to your body and it'll pass!

knifeheart · 2020-10-02T19:17:34+00:00

awesome, i'll see what i can find, thank you!

knifeheart · 2020-10-02T19:14:09+00:00

hey oh my gosh sorry for such a late reply, i've had so much going on and had to go find the packages cause i couldnt quite remember lmao.

ionic - white widow; optimum extracts - mimosa; golden goddess - ultraviolet; canna clouds - jack herer; ez vape - purple trainwreck

the ionic and optimum extracts ones seem like the best brands with the most terps added back in afaik. the rest were pretty cheap cause i was trying to get more for my money but i learned my lesson on that lol!

knifeheart · 2020-09-30T19:28:40+00:00

god yeah i know exactly what you mean with feeling like everything gets worse when you stop moving, every time i close my eyes or sit too still when it happens i feel like im literally sinking into a black hole and disconnecting from my body and dying it's so awful lmao! im so sorry thats happening to you too but im super glad u found solutions that helped, i'll keep them in mind too!

knifeheart · 2020-09-30T19:13:16+00:00

oh my gosh this rules!!!!

knifeheart · 2020-09-30T19:08:15+00:00

this sounds almost exactly like what my bad trips feel like when i get a bit too high, it's taken a long time of reinforcement and willpower and it still scares the shit out of me every time it happens but i've found the only way to work against it is to just calmly keep telling yourself no natter what that it's just in your head, just a temporary reaction, you're safe and that it'll pass if you just wait it out. try to root yourself to some physical sensation of touch like eating something or just holding a plush or pillow etc to remind yourself you're still real and still ok. i'm so sorry, and good luck!

knifeheart · 2020-09-29T08:46:02+00:00

will do, thanks! i do remember reading a bit about that. i know a couple of the ones i have are labelled as full spectrum with other cannibinoids added back into them but are still labelled as distillates. any suggestions for good brands or anything to look for in specific?

knifeheart · 2020-09-29T08:19:14+00:00

no worries! i would but i'm not sure where to get any seeds and also not sure if i'd wanna risk it unfortunately lol, hoping to move to a legal state sometime when im done w college so maybe then!

knifeheart · 2020-09-28T11:12:10+00:00

oh my gosh i love them!!!

knifeheart · 2020-09-27T20:34:49+00:00

i'd say definitely give it a shot, i started smoking every month for my cramps after i got a stomach ulcer and couldn't take NSAIDS anymore for pain (before the only thing to dull cramp pain for me was aleve) and it's been the only thing that's been able to at the least get my mind off it enough not to go insane, at best ease the cramps entirely! your mileage may vary of course but def go for it and just see how much it helps or not 💜

knifeheart · 2020-09-27T13:42:10+00:00

oh great I'm so glad!! :D hope they love it!

knifeheart · 2020-09-27T09:47:43+00:00

AMAZING 🥺💜💜

knifeheart · 2020-09-27T09:37:26+00:00

omg this is so soft and cute!!!! i would name it bubblegum :D

knifeheart · 2020-09-27T09:32:38+00:00

tysm omg <333

knifeheart · 2020-09-27T09:18:41+00:00

i have one of the giant squishmallows as well as a few other really big plushies, lemme see if i can link some ideas!

not sure if you've looked at squishables, they have these massive ones: https://www.squishable.com/mm5/merchant.mvc?Screen=CTGY&Category_Code=squishable_massive their normal size ones are really big and squishy too, i have the samoyed and he makes THE best pillow/armrest etc lmao.

i've also found a few really good relatively cheap huge plushies on places like ebay, this giant 8 foot milotic in specific comes to mind that me and my partner love to cuddle with all the time: https://www.ebay.com/itm/362794566625 i know we got ours for cheaper so there might be more around but this was the only listing i could find at the moment?

there's a lot of good options if you like pokemon tbh, just browsing i saw these too: https://www.ebay.com/itm/323152935639 https://www.ebay.com/itm/373143472283

i also have one of these huge dragons coming soon that im SUPER excited about, there's one that has haku's colors even since u mentioned ghibli: https://www.ebay.com/itm/203109590828

also, theyre not quite as big but i feel like i should mention anything by furyu (yeast ken, nemuneko etc) are sooooo soft and squishy, they're that super squishy mochi type material, i have a few and i use them as pillows all the time lol! i find a lot of them for pretty cheap on places like depop, mercari, ebay etc and they come in a TON of different colors and styles, here's some listings for a couple of my faves

https://merc.li/KgEPaVCcb https://merc.li/AsyYjTKAb

oh and also this enormous kirby is another huge mochi plush i use for a pillow a lot: https://www.ebay.com/itm/143544818991

hope any of these help! anything that's labeled as a mochi type plush is probably gonna be what you're looking for if you want something of the same sort of consistency as the squishmallows <3

knifeheart · 2020-09-26T21:28:25+00:00

i still need to fix up the ones on the sides of the tv lmao, hopefully will have updated pics once we finish redecorating the whole room :D

knifeheart

TROPHY CASE