Jump to content
The Corroboree
Sign in to follow this  
toast

Narcolepsy

Recommended Posts

Anyone have any experience living with narcolepsy?

Recent diagnosis, as a latent complication to historic Ross River Fever, puts several dysfunctions into perspective, however I’m not thrilled with the idea of being permanently medicated. 

Any members out there living with any other types of narcolepsy or chronic fatigue, & have any suggestions. 

PM if you’d prefer. 

Thanks 

Share this post


Link to post
Share on other sites

My mate has a similar disorder, hes on modafinil, but hes not a fan either, as he also has to now medicate for sleep to counteract it.

Share this post


Link to post
Share on other sites

Don't let dept of transport know or they might take your licence away. They did it to my neighbour but I'm not sure exactly what her condition is. Anyway, she can't drive now, which has affected her life in a majorly bad way.

 

I personally have had sleep seizures for most of my life, where I can fully lose control of my body and fall down etc. It's really embarrassing because people get shocked and panic etc.

 

I just take the medication and now I don't suffer from the falls, -only if I go off the meds etc.

 

Just take the damn medication, it's nothing. I have found no side effects that I'm aware of, so much better than falling down and getting hurt or embarrassed. (I find the embarrassment is worse than any injury I've ever had).

 

Anyway, I can also get temazapam to make sure I do get a good night sleep when I need to. I hardly ever take them but when I need them they are a godsend. They'd probably give me what ever benzo I want if I milked it, but that medication is just too valuable to my condition to ever start abusing it.

 

 

 

 

 

 

 

 

 

 

Edited by Halcyon Daze
  • Like 1

Share this post


Link to post
Share on other sites

I’ve tried modafinil. It made me brutally nauseous, degrees yesterday of magnitude above anything I’ve experienced from anything else. Even after I stopped it. I’m waiting for a Ritilin script to be approved. I’m pretty nervous about it but the status quo isn’t manageable any more so I’m prepared to try it

Share this post


Link to post
Share on other sites

HD thanks for sharing. 

What meds are you on? PM me if you’d prefer. 

Ive also recently been diagnosed with sleep apnea, benzos mess with that

  • Like 1

Share this post


Link to post
Share on other sites

No worries, I was dead set against meds at first but then I gave them a go and it helped so much I forgot why I was so against them  LOL 

 

 

 

The doc is the one to help with your specific issue, and he will help you weigh up the pros and cons of the meds.

 

Just don't be afraid to give them an honest go first, they don't often have severe side effects, and often they have none at all.

 

 

 

Some points to remember with side effects. The higher the dose, the stronger the side effects. So the doc will start you off low.

 

The side effects will stop when you stop taking the medicine, they are rarely permanent unless you do something stupid like eat the whole bottle at once.  

 

Some meds may have long term side effects like higher chance of stroke etc.

 

It's just a matter of the good outweighing the bad.

 

 

I had loss of sexual function as a side effect of some other meds once,  I gave them up as soon as I realised and 2 weeks later I was howling at the moon again. :)

Edited by Halcyon Daze

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×