Hiya, thought I'd introduce myself

[MTXMTT]

Hi there. I'm 14 years of age, and officially diagnosed with ADHD and Narcolepsy, a rather unpleasant sleep disorder. I immensely enjoy programming, and I'm entirely self-taught. My work in relation to that can be seen here.

I'm mostly on here just to talk, hopefully to help manage my life (primarily narcolepsy) and generally socialise. Feel free to chat, I'm fairly easy to approach

Many Thanks,
MTXMTT

 

[StephF]

Hi, welcome to the forums

 

[Nitro]

 

[Southern Discomfort]

Narcolepsy is a fascinating condition. I've been meaning to read more about it but I haven't gotten around to it; mental conditions is something that I find deeply interesting, I'm mostly caught up in reading about the ones I have though.

That's quite an interesting combination you've got there. The idea that you're seen as hyperactive on one hand then the other you just fall asleep at times. That must be sort of like having two speeds only available to you, 0 and 60 mph.

Anyway, welcome! Hang your coat up with the others arranged in size order.

 

[Streetwise]

hello MTXMTT. shalom means (welcome hello in Israeli every day life)

 

[MTXMTT]

Narcolepsy is a fascinating condition. I've been meaning to read more about it but I haven't gotten around to it; mental conditions is something that I find deeply interesting, I'm mostly caught up in reading about the ones I have though.

That's quite an interesting combination you've got there. The idea that you're seen as hyperactive on one hand then the other you just fall asleep at times. That must be sort of like having two speeds only available to you, 0 and 60 mph.

Anyway, welcome! Hang your coat up with the others arranged in size order.

I suppose initially it was like that, but I never feel well rested nowadays. It's either tired, exhausted or asleep. It's like struggling through a thick fog, and getting through each day is a test of willpower. An easy way to explain it is imagine normals days being those where you're tired and ******, and days when you're tired the days when you're completely nonfunctional. It's really hard to bother with doing stuff some days. It also comes coupled with cataplexy which makes it difficult to manage excercise. So, really, of the three essential thing for wellbeing, Good Food, Good Rest and Good Excercise, I'm missing two

 

[MTXMTT]

hello MTXMTT. shalom means (welcome hello in Israeli every day life)

Thanks . I'm aware of what shalom means, and I'll reply with Kia Ora, which means Hello in Maōri, the language of NZ's native people

 

[Streetwise]

Thanks . I'm aware of what shalom means, and I'll reply with Kia Ora, which means Hello in Maōri, the language of NZ's native people

i suffer from panic disorder ibs caused by previous and asthma arthritis and insomnia so my days range from crap to nightmarish
i think if youre only culturally Jewish you dont use shalom in the same way as someone who is observant

 

[Southern Discomfort]

I suppose initially it was like that, but I never feel well rested nowadays. It's either tired, exhausted or asleep. It's like struggling through a thick fog, and getting through each day is a test of willpower. An easy way to explain it is imagine normals days being those where you're tired and ******, and days when you're tired the days when you're completely nonfunctional. It's really hard to bother with doing stuff some days. It also comes coupled with cataplexy which makes it difficult to manage excercise. So, really, of the three essential thing for wellbeing, Good Food, Good Rest and Good Excercise, I'm missing two

So you were classified as hyperactive before the onset of narcolepsy? Or is it more ADD rather than ADHD?

 

[MTXMTT]

i suffer from panic disorder ibs caused by previous and asthma arthritis and insomnia so my days range from crap to nightmarish
i think if youre only culturally Jewish you dont use shalom in the same way as someone who is observant

Oh, I'm not religious at all, and I personally don't use the term. I just thought I should tell you I was aware of its meaning

 

[MTXMTT]

So you were classified as hyperactive before the onset of narcolepsy? Or is it more ADD rather than ADHD?

ADD and ADHD are neurologically the same, although some people do not exhibit the hyperactive part of ADHD as obviously. I was only diagnosed with Narcolepsy the end of last year, and was diagnosed with ADHD when I was seven, although my mother was aware of it before then, as she, my sister and her mother all had ADHD. The narcolepsy has been becoming increasingly bad as of late, and really only became noticeable around 2-3 years ago. It doesn't help that Narcolepsy is technically an autoimmune disorder, where my immune system has destroyed the neurotransmitters responsible for producing hypocretin, and effectively removed all ability to control and regulate sleep in response to chemical stimuli. This means caffeine and other stimulants have little to no effect on me, which is further impacted by the effect that ADHD has on stimulants

 

[Southern Discomfort]

ADD and ADHD are neurologically the same, although some people do not exhibit the hyperactive part of ADHD as obviously. I was only diagnosed with Narcolepsy the end of last year, and was diagnosed with ADHD when I was seven, although my mother was aware of it before then, as she, my sister and her mother all had ADHD. The narcolepsy has been becoming increasingly bad as of late, and really only became noticeable around 2-3 years ago. It doesn't help that Narcolepsy is technically an autoimmune disorder, where my immune system has destroyed the neurotransmitters responsible for producing hypocretin, and effectively removed all ability to control and regulate sleep in response to chemical stimuli. This means caffeine and other stimulants have little to no effect on me, which is further impacted by the effect that ADHD has on stimulants

That's what I though you would say. So narcolepsy isn't like ADHD, it isn't something that's with you on some level all your life. I guess, making a connection with what I deal with with tics, it's similar to that in the sense that it just starts but it's something that you're genetically predisposed to have and therefore can be triggered at a certain point or under certain stressors in your life.

Do you think that having ADHD makes the narcolepsy harder or easier to live with? In the sense that if you didn't have ADHD it would be worse than it currently is for you. In my situation I often think that it's a bit easier to have Tourette's with Asperger's because with Asperger's you do have that ability to just zone in on something and concentrate on it for extended periods of time and therefore I can't tic as much.

 

[MTXMTT]

That's what I though you would say. So narcolepsy isn't like ADHD, it isn't something that's with you on some level all your life. I guess, making a connection with what I deal with with tics, it's similar to that in the sense that it just starts but it's something that you're genetically predisposed to have and therefore can be triggered at a certain point or under certain stressors in your life.

Do you think that having ADHD makes the narcolepsy harder or easier to live with? In the sense that if you didn't have ADHD it would be worse than it currently is for you. In my situation I often think that it's a bit easier to have Tourette's with Asperger's because with Asperger's you do have that ability to just zone in on something and concentrate on it for extended periods of time and therefore I can't tic as much.

It's lifelong, but it's progressive, meaning it gets worse over time, effectively until your immune system is done destroying bits of your brain. TBH, Narcolepsy means I won't have to deal with stupid psychiatrists who don't think adult ADHD exists, as one of the primary treatments for Narcolepsy is also one of the treatments for ADHD

 

[Southern Discomfort]

It's lifelong, but it's progressive, meaning it gets worse over time, effectively until your immune system is done destroying bits of your brain. TBH, Narcolepsy means I won't have to deal with stupid psychiatrists who don't think adult ADHD exists, as one of the primary treatments for Narcolepsy is also one of the treatments for ADHD

Yeah. I've been relatively lucky in the psychiatrists I've had to deal with, I've got a new one soon now, hopefully this one is better than the last. There's nothing worse than dealing with a medical professional who is undereducated about conditions they should know about. Under no circumstances should you have to be the one educating them about the conditions you deal with. It's okay to a certain extent if they're not pompous and think they know it all but the level of trust and faith you can have in them is certainly limited.

 

[tree]

 

[toothless]

hi MTXMTT ! welcome to AC, i hope you get some benefit out of the community,ive been here a few years or so and get a lot out of it.

is there any helpful medication for narcolepsy and cataplexy?
do you get a proper sleep at night?

not the same thing but i have sleep apnoea and lifelong severe insomnia, lots of people here struggle with sleep to in some way.

what are your interests and likes/dislikes?

 

[xudo]

Welcome

 

[MTXMTT]

hi MTXMTT ! welcome to AC, i hope you get some benefit out of the community,ive been here a few years or so and get a lot out of it.

is there any helpful medication for narcolepsy and cataplexy?
do you get a proper sleep at night?

not the same thing but i have sleep apnoea and lifelong severe insomnia, lots of people here struggle with sleep to in some way.

what are your interests and likes/dislikes?

Sort of. There are things to help, but no actual treatment. The primary combination in NZ is Methylphenidate and Modafinil. The first helps with sleep attacks, the second deals with feeling like crud 24/7. In the US, Adderall and Xyrem are also common, both of them unavailable in NZ, with Xyrem only recently allowed by the FDA as is.

In terms of my like and dislikes, I greatly enjoy programming, reading, sailing, reading and chatting about any of the above. Programming is my greatest passion, and I'm pretty good at it.

 

[ZebraAutismo]

Welcome nice to meet you