Comments for Planet Narcolepsy

Comment on Don’t You Think I Wish I Could? by Teresa

Teresa — Tue, 27 Mar 2012 01:18:18 +0000

Excellent

Comment on Personal Health Records by Jess

Jess — Mon, 11 Jul 2011 15:50:29 +0000

Good for you for taking the initiative! It’s not a diagnosis I would wish on anyone, but if you have to have it…you should know about it, that’s for sure. Good luck with treatment, keep us posted!

Comment on Personal Health Records by Shannon Kish

Shannon Kish — Fri, 08 Jul 2011 02:26:13 +0000

I was just diagnosed yesterday!

My road to diagnosis started with feeling awful and visiting a Doc-In-The-Box Urgent care clinic. He ran standard blood tests, a strep test, and a thyroid test.

The results for all were normal. I requested the results so that I can get them to my PCP.

The results of the thyroid test showed that all my numbers were low. This led me to call my PCP and schedule an appointment.

In scheduling that appointment, my doctor then proceeded to schedule me for every test in the world to rule out everything from brain cancer to sleep apnea.

Fast forward a month and I was at the sleep doctor to rule out sleep apnea.

Luckily, the testing indicated no apnea, but rather idiopathic hypersomnolence (at least on the insurance paperwork) with my dr. suggesting that I actually have Narcolepsy.

So, had I just taken Doc-in-a-box at his word, I would still be trying to figure out why I am so exhausted and sleepy all the time.

Comment on How much medicine is too much? by NarcolepsyGirl

NarcolepsyGirl — Wed, 23 Mar 2011 04:25:43 +0000

Paul,I can tell you what I've tried and what has (and hasn't) worked for me. Like Jessica said, keep in mind that your body chemistry will change – so what works for a while will not work forever.To stay awake, I've had:Provigil – didn't work well for me, as I felt like I didn't need to sleep at all, had heart palpitations, and felt that I had to take it the exact same time every dayAdderall – first 10 mg at breakfast and lunch, then 20 mg, then 30 – the 10 mg dose worked for years for me, then I felt like I didn't have energy for about 6 months before mentioning it to my neurologist and going up to 20 mg – that worked for 6 months or go, then we tried 30 mg – and then day turned to night, night turned to day (even with sleep meds) so my neurologist switched me to VyvanseVyvanse – started with 60 mg, going to try 70 mg – I love this medication! I feel like "myself" again – awake and alert, without being jittery. I never realized how jittery and artificial Adderall felt until VyvanseSleep medsAmbien – tried two different times – caused me to sleep a little too deeply initially (when the cops are outside your bedroom window, you should wake up – but that's another story) – and the second time I was feeling anxious during the day (a side effect)Desipramine – this worked really well for a few years – I avoided sleeping medication for as long as possible (esp after my first experience with Ambien) – I started at 25 mg and worked my way up to 100 mg in 25 mg doses, over a few yearsRozerum – this worked for me for years tooLunesta – I'm on this now, it has worked really well minus the last two days or so (I had a lot going on in the last two days, so that's probably why)Xanax – I've had this for a few years to take on the nights that my regular sleep meds aren't enough – in other words, if you usually take sleep meds every night, then on a night that you're extra stressed, you may need something extra. Part of keeping this working for you is only taking on occasion – for me, maybe a few times a month tops.Let me again emphasize that these experiences are my own. I know when I was first diagnosed I was overwhelmed – but in time you will find the meds (and routine, or lack of routine for some of us) that works for you. I changed jobs to something with a more flexible schedule, and I've also had many more months of my medication working than not since I was diagnosed in December of 2004. I wish you the best and I will second Jessica – post again if you have any more questions. I know for me it was reassuring reading that other people experience the same crazy symptoms, and that they still have friends and family that care and do their best to understand.

Comment on I can’t wake up and am always late! by Valentina

Valentina — Mon, 21 Feb 2011 12:50:31 +0000

Thank you so much for speaking about thisproblem.. When I say I have narcolepsy usually people canaccept I can fall asleep, but don't believe that my lates belong to it..I know it does, because my life is complitelyinfluenced by narcolepsy..but often I wonderif I'm just searching for an excuse to justifymy faults, and I really feel guilty for that.The result is that I have many many problemswith my job, and I keep people I love away from me, because I have the feeling that I always hurt them with my "laks of rispect".I'm still going to try to be on time, but nowthat I know I'm not that bad person I was used to think, I feel really better!I know there isn't a real solution, and that this problem will come again and again..but my feelings in everyday life will be better!Sorry for my English (I'm Italian), and thank you so much!!

Comment on Looking for Contributors by Planet Narcolepsy

Planet Narcolepsy — Tue, 07 Dec 2010 17:05:09 +0000

Dave,I am currently working on getting the site running so I can add bloggers. I would love to have you on board!Please send me your email address so I can get you the details.

Comment on Looking for Contributors by Dave

Dave — Mon, 06 Dec 2010 01:19:09 +0000

I'm interested in blogging about my narcolepsy. I would say i have a mild-moderate case of narcolepsy.

Comment on Looking for Contributors by J D Chastain II

J D Chastain II — Fri, 22 Oct 2010 16:45:26 +0000

sleeping_panda@yahoo.com is the best email to reach me at (apologize for the delay in response – two out of three tech support folks out all week here at work so just me to cover – that is NOT a normal situation! I mean, who leaves the Narcoleptic in charge and working 12 hour days anyway? Oh, there will be much bribery needed by my cohorts next week for certain!Thanks!

Comment on Looking for Contributors by Planet Narcolepsy

Planet Narcolepsy — Fri, 15 Oct 2010 19:55:42 +0000

JD – That'd be great! Where can I email you to discuss?

Comment on Looking for Contributors by J D Chastain II

J D Chastain II — Tue, 12 Oct 2010 15:48:38 +0000

I'd be happy to move my blogging on Narcolepsy over to your site – let me know? I could also handle some moderation duties, editing, you name it…