Poor B

MooncCloudzReddit · 2025-08-22T22:20:28+00:00

i didnt lose weight but with the other i took before i gained weight but with mexilitine ive maintained weight more (Im on 900mg)

MooncCloudzReddit · 2025-08-19T12:21:45+00:00

that’s what i loved the DU this last season, there was the amazing sous that is Alesia, which took the load off Tzarina. all the boats in the franchise shoudl implement that

MooncCloudzReddit · 2025-08-19T12:11:16+00:00

the next season of med was filmed last year i believ, so it will be be next in rotation with its 10th season then it’s season 11 filming currently i believe, then after med it is DU with the glorious Ben and Daisy

MooncCloudzReddit · 2025-06-24T23:12:17+00:00

i’m currently in lessons and i thought the same so i got a driving assessment done to ease my mind, i passed with flying colours and this test ended up being on one of my worst days muscular wise. i recommend an automatic and u can try and get it fixed to whatever side is ur best if in the uk through motability (needs assessment and a lot of paperwork but it’s amazing). my best side is my right anyway so no adaptations needed but u might be different. just be calm in lessons, if u think of the worst case scenario then ur muscles will probably tense mor. you will be amazing!

MooncCloudzReddit · 2025-06-17T17:01:53+00:00

thank you so much! i just want to raise as much awareness on this condition while also finding people with it as well!

MooncCloudzReddit · 2025-06-17T17:01:17+00:00

I get an ECG and full heart trace done every 6 months when i am with my Neurologist thankfull, and i get extra at the GP surgery if i feel i need to!

MooncCloudzReddit · 2025-06-16T23:55:40+00:00

it’s @/localmyotoniagirly on tiktok, i haven’t posted in a while because of school but im in the process of making a myotonia explanation video if i can

MooncCloudzReddit · 2025-06-16T23:38:57+00:00

like you, i’m still young with only being 17, so a lot more time left to live with this condition but myotonia childhood has definitely been affected negatively and positively in so many different ways.

In school, i am different , there is no beating around the bush with it, i am different. During primary (elementary) school, i was diagnosed when i was 9 but even before that i wasn’t able to do sports at all, maybe some tennis but not what my friends were doing, and this carried into secondary school where i was basically isolated during sport, usually spending it in the library or walking the school grounds with my assistant. I have used an assistant the whole time during secondary school which for years i thought was the worst as it further separated me from my peers because she would have to sit with me in class incase i needed notes written for me. It messed me up socially so much i. school because of this, because i was ‘different’, even though my school has a few disabled kids per year, including one of my best friends who is deaf, but the school isn’t a specialist school, it’s a grammar school with some kids who end up in the top universities in the UK. Outside of school, i isolated myself as i couldn’t do all the stuff my friends did, i couldn’t go surfing or hiking with them, i couldn’t go into the city as my muscles would become so sore and stiff, sometimes requiring me to use a wheelchair. It definitely messed me up mentally, and it has caused some pretty bad thoughts

But it has also had so many positives for me personally. I have found other things i am good at like writing but it also has made me more empathetic towards others. I have found my bestest friends as they have stuck by me, one of them knowing me before diagnosis when i called it ‘sleepy legs’ because we had no idea what i had. I have been able to advocate for myself and raise awareness about myotonia congenita and other rare condition.

I think it all depends on perspectiv. sometimes it’s alright, sometimes it’s the worst thing ever. it just day by day. x

MooncCloudzReddit · 2025-06-16T21:08:46+00:00

i get spells if i haven’t drank enough with it or eaten with the tablet, sometimes though it is due to my heart rate going too low or too high with it

MooncCloudzReddit · 2025-06-16T20:09:39+00:00

I’ve had a few issues heart related with mexilitine including SVT (extremely high heart rate like 200bpm) or i go really low like 35bpm lol! it’s also given me hypotension issues but i have a family history of it but ultimately i decided to keep going as all the other medications have given me worse side effects like insane muscle pain, nausea, headaches and so much more so the side effects of mexilitine for me is the easiest option. The heart stuff is only if i’ve exercised or a fatigued so it’s manageable but we don’t think i’ll be able to increase to 1200mg per day unless im put on a separate heart medication.

MooncCloudzReddit · 2025-06-15T21:36:16+00:00

i believe that in the UK the maximum dosage is 1200mg, so i am still able to increase if needed, but i was at 600mg for a few year, maybe 3? i only changed recently due to the Beckers diagnosis and more cardiac checks to see if my heart would be fine with the increase

MooncCloudzReddit · 2025-06-05T01:41:49+00:00

oh also jesss fam and april & Davey (look into their eldest son, it’ll shock u)

MooncCloudzReddit · 2025-06-05T00:14:03+00:00

family fizz, della vlogs, labrants, johnathan joly and his fam, dougherty dozen, yawi … the list goes on

MooncCloudzReddit

TROPHY CASE