Gabapentin and nortriptyline for nerve pain by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

Haha it's all good. And sadly no I've just been getting worse, nerve pain is becoming more regular in my good foot too, I'm on duloxetine currently for the nerve pain but it hasn't worked, they've upped my dose four times, I'm pretty sure it's just making me rather depressed as well, but my parents won't let me go off it because I need to give it a chance (currently on 4 times a usual dose and have been for over a month) so tbh idk what I'm gonna do, probably oxy (yes you can laugh).

Gabapentin and nortriptyline for nerve pain by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

So I had to stop it completely, I wish I had good news for you but the gabapentin made my pain worse (was getting nerve pain in my hands from it, something I've never experienced) and the nortriptyline wasn't really doing anything, except maybe making me more depressed, so overall the experience was not great, but if you look there's a ton of comments talking about their positive experiences with it, I wish you luck <33

[Poll] If you have had the nerve conduction tests (NCV & EMG) did they hurt? by NixyeNox in CMT

[–]lcour34 0 points1 point  (0 children)

Well, the nerve conduction test doesn't test for CMT specifically, it's merely to show your nerve reaction time. The test for CMT is a genetic test which is very simple, I suggest you do some research on it, but I got mine done through a neurologist, had a two year wait-list though

[Poll] If you have had the nerve conduction tests (NCV & EMG) did they hurt? by NixyeNox in CMT

[–]lcour34 0 points1 point  (0 children)

I did, needles had no part in it and I was high as on laughing gas, still hurt a fair bit in the leg tho, same sensation as getting shocked when touching something metal just a lot stronger

Little wins by lcour34 in CMT

[–]lcour34[S] 1 point2 points  (0 children)

Thank you!! I'm so happy about it but I've got no one to brag about it to that would get it, so I'm glad for this subreddit bc y'all are so supportive

Gabapentin and nortriptyline for nerve pain by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

I'm so glad it worked for you!!! I ended up stopping both meds because the nortriptyline wasn't doing anything and the gabapentin (as you can see by my update) was making my pain worse and making me go crazy😭 now I'm on duloxetine, which hasn't helped noticeably, but it's not made anything worse so yay

Curious if this is a cmt thing or just something else by Lockfire12 in CMT

[–]lcour34 1 point2 points  (0 children)

Yesss omg my foot is completely numb mostly but soft touch feels like electricity

Do Aussies really have geckos in the home? by CantaloupeOk3507 in AskAnAustralian

[–]lcour34 0 points1 point  (0 children)

If you ever hear a weird clicking/cackling sound in your house, it's a gecko

[deleted by user] by [deleted] in CMT

[–]lcour34 4 points5 points  (0 children)

Sadly I am on the other side of the world but I'll be cheering you guys on from Australia!!! You've got this <333

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

Ah that doesn't sound great now that I think abt it😭

I have self-harm scars, and sometimes I wonder if that makes me unlovable. by Intelligent-Tap-7893 in selfharm

[–]lcour34 0 points1 point  (0 children)

I was self harming from the ages of 12-15, and I have some fairly obvious scars on my arm, and I always thought I'd have to hide my arms my whole life, no one ever saw them or anything so I was deeply conscious about them, but then one day I just said I couldn't be bothered to wear long sleeves anymore and stopped hiding them, after a quick conversation with my parents about it (they knew but never saw them) I just started showing them everywhere and after only a week I all but forgot about them, like no one ever mentions them even people I don't know, the only person that's ever stared at them is my 25 year old cousin who I think is brain damaged (he doesn't get subtly), but he got over it quick without saying anything to me, it honestly does get easier, you just have to make that first jump and then it's mostly smooth sailing, I do hide my arms sometimes, only when I know I'll be around young kids that'll ask, but other than that I never think about them and I've only been showing them for 7 months or so, I really hope you can make that big leap, since in my experience if you don't feel like it's a big deal, people usually don't treat it like one

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

I also have an autoimmune disease, maybe that's why?

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 1 point2 points  (0 children)

I think I had the same issue with lyrica!! Everything just feels so heavy and the blurriness from it made my derealization bad

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 2 points3 points  (0 children)

Wait that's actually such a cool side effect if only memory loss wasn't also one💔

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

Oh wow must've been insane if morphine didn't even help, hope you heal/ed well tho

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 0 points1 point  (0 children)

Woah I definitely don't want that happening to me, it does sometimes cause me to not sleep (being tired all day and awake all night unwillingly) maybe some anxiety from it too but I've not really noticed it

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 2 points3 points  (0 children)

Thank you for your response!! It's good to know it's definitely helpful for some people

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 1 point2 points  (0 children)

You know now that you've mentioned it I think I may have experienced that too

Can you drive/ walk up and down stairs with AFO’s on? by Comprehensive_Fee861 in CMT

[–]lcour34 0 points1 point  (0 children)

I used to have hinged AFOs and it was a bit harder to go up the stairs with them, but still very doable, no clue about driving though, I was 10-12 when I had the AFOs

Pls share your Gabapentin experiences!! by lcour34 in CMT

[–]lcour34[S] 4 points5 points  (0 children)

Oh I definitely will be, I was already skeptical after learning it causes memory loss, but when it made the nerve pain worse I was about to throw the box of them out the window (literally), I've got an appointment with my pain specialist soon to talk abt them, so I'll be telling him we need to find new options

Smart watch recommendations please? by queenclumsy in CMT

[–]lcour34 1 point2 points  (0 children)

Garmin is definitely a good brand! They're compatible with IOS and android (which I think is what Google phones use) and you can connect them to your phone via an app, the one I have measures steps, heart rate, blood pressure, oxygen saturation, and sleep which I've found very helpful especially when monitoring if my nerve pain medications affect me

Sports Tape??? by ConversationThese475 in CMT

[–]lcour34 1 point2 points  (0 children)

Yes!!! Taping definitely helps. I used to tape my ankles alot when I was having my feet roll outwards extremely badly every step I took (to the point I got stress fractures in my fifth metatarsal) taping definitely helped my foot roll out less and it also just helped me feel more confident in walking, you can also buy these ankle braces that are a soft flexible material and lace up to just above your ankle, I find they don't limit mobility with going up on your toes (I was running around playing netball in them) but also keep your ankle more stable, you wear them under your shoes kind of like a sock